Hey all,

I guess I wan't any better about updating since it has been over a week since my last post...sorry! I really appreciate everyone checking in on me and know that positive thought and prayer help a great deal, thank you all :-)

Last Thursday my Mom and I went up to Boston to meet with a Neurologist who was recommended by Dr Black, Dr Thomas Walshe. I liked him, at first thinking he was a bit gruff but then realizing he was just taking his job very seriously as he asked me what brought me to his office (I was going to say my Mom's Chevrolet Tracker but didn't think he had a sense of humor at that point). As we talked he agreed that the EEG next week was good to have to rule out seizures and that it was a good thing that we were able to move up my MRI a month. He said he would not really give me a diagnosis but would talk to Dr Chemali and give her a few suggestions. As far as my double vision and other left eye problems he said he was going to let Dr Bien-Fang take care of that since they are in the same office and he said "Dr Bien-Fang is really on the ball" at one point. When I asked him if he could tell me anything, like what is the 2nd tumor, is it causing the problems, are the problems permanent, etc since I get lots of calls and emails checking up on me and don't know what to say. He said from what he can tell "It isn't a hardware problem, but the software seems to have some glitches". Basically I know absolutely nothing more, but had a nice chat with the doctor and my Mom got to read a couple of magazines in his office.

We are heading back up to Boston in about an hour for the MRI. I don't mind them at all. I go in and get an IV set up (for the contrast) and then you lie down on the sliding table part and they give you a warm blanket, a very comfortable foam piece under your knees, a handheld beeper incase you need to contact them, ear plugs to try to drown out the banging and honking noises (they don't work), and then they make it so you can't move your head. Then you get slid into the narrow tube which is actually going into the magnet. They take a number of different views and each one last so many minutes, usually about 45 minutes total. Each time they start the next view they let you know how long it will be and ask if you are OK. That helps to make the time go by so I have some reference point. I usually end up falling asleep! Once the test is done they slide you out of the MRI tube and take out the IV, tell you to drink lots of water the next 24 hrs to help move the contrast out of your system, and I'm on my way. I won't know the results until my appt with Dr Chemali on Tuesday at the earliest but more likely I will find out next Friday at my appt with Dr Black.

I have been thinking about why two Drs found this second tumor which now can't be found on the CT scan and I'm slowly starting to recover from the problems I was having. The double vision is less and I'm getting used to it, I can walk a straight line again and have run a few steps without tripping over my feet, the headaches are lessening, I have strength in my right hand again so I haven't been dropping everything, I can write clear thoughts and read the typing. I haven't spelled anything backwards in a few weeks either. A thought crossed my mind when I was trying to figure out how I can have pictures of the new tumor but they couldn't find it on the CT or on my MRI taken 9/28...maybe it is gone? Do Hemangiomas or Meningiomas just disappear? Maybe the prayers worked and it has disappeared? Is that why I'm starting to finally feel a bit better? I usually have thoughts that are geared more to the scientific then spiritual, but who knows? I don't know how else to explain it if they don't find it on the MRI today. I am bringing in the pictures & report from the ultrasound so they can see exactly where to look. I actually spoke to someone in the MRI deptartment yesterday and asked if I could show them the report and they said it was a great idea.

Well that is all for now. Off to Boston on the busiest travel day of the year and we will be coming home in rush hour traffic UGH!

Take care everyone,

Sue

Round and Round

OK I Know I should have posted an update before now, I just didn't know what to write since we really don't know anything more and I was hoping to have some news. The frustration with the round robin of doctors is getting ridiculous.

I received a call from Dr Hatton (Ophthalmologist/Ocularist) last weekend after he had gone over my latest CT scan with the Chief of Radiology at Mass Eye & Ear...they couldn't find any sign of the "new" tumor. Dr Hatton spoke on the phone with Dr Bien-Fang (Neuro Ophthalmologist) and they both agreed that there was something there but they just couldn't see it on the CT. I was told I had to go back to Dr Black and also get another MRI. Even if the other tumor is closer to my eye in the muscle cone Dr Black is the one who has to remove it since I just found out from Dr Hatton that once you have a craniotomy like I did they can't use a front orbital approach, all future surgerys have to be by craniotomy. :-( I called Dr Black's office to get a new appointment and was told they had a cancellation on Dec 1 at 3:30, which is the same date and time that I had already had and cancelled an appt with Dr Black - I guess I got my already cancelled appt back! I can't believe I've just been going around and around in circles (sigh).

So as it stands now I have an appt with Neurologist Dr Walshe on Thursday, MRI the following Wednesday, EEG to see if the "episodes" are seizures on Nov 27, appt with Dr Chemali (who ordered the EEG) on Nov 28, appt with Dr Bien-Fang Nov 29, and appt with Dr Black on Dec 1. I hope to know what is going on after all those appointments. Actually I would have hoped to know that before now, but oh well....

I wanted to mention a new show that premieres on CBS tonight at 10pm called "3 LBS". It is a new show about top NeuroSurgeons at a NYC hospital. From what I've heard about it on the CBS website and through the BrainTmr list it sounds a bit interesting. You can also watch the episodes if you have broadband from the CBS website (www.cbs.com) if you don't have a chance to see it tonight. 3 lbs is the average weight of the brain and in the first episode a violinist has surgry to remove an astrocytoma (a malignant brain tumor) from the back of her head and a lawyer has surgery to repair an AVM (arterial venous malformation). I already watched the show and liked it. I thought it was fairly well done although I think they should have mentioned chemo and/or radiation to the mother of the girl with the astrocytoma and I heard no noise during either of the MRIs that they showed being performed.

I'll try to be better about posting updates in the future,

Sue

Holding Pattern

I just wanted to let everyone know how my appointment with Dr Hatton went yesterday. He is very nice and well spoken. We talked about what had gone on up until this point and he looked at the records that had been sent. I was then sent over to Mass Eye & Ear for a CT scan and then back to see Dr Hatton. When he came in to see me after reading the CT results on his computer he said that he had a lousy internet connection at that time and really couldn't tell me much. He will be meeting with a radiologist from Mass E&E today to go over the CT and then will call me Thursday around noon with what they have found. He did say that there is definately something going on but can't tell what it is through the swelling that he also sees in my left orbit. So basically I don't know any more then I did yesterday before the appt but hopefully will know more soon. When I hear from him tomorrow I will post what he tells me here. This is just so-o-o very frustrating!!!

Thanks so much to everyone who is still thinking of me and sending cards, emails, and posting comments here. It really means so much!

Sue

Ultrasound Report Results

I was able to get a copy of the report from my ultrasound from Dr Calderon, so I would have it to bring with me to my appt with Dr Hatton on Tuesday.

Indication for Ultrasound Consultation: Orbital Mass
Impression: Characteristics matches a cavernous oval hemangioma within the muscle cone with pressure on globe.
Mass Characteristics:
- Heterogeneous
- High internal reflectivity
- Regular internal structure
- Moderate sound attenuation
- Within muscle cone
- No observable attachment
- Abutting globe behind macula
- 6.5mm x 3.5 mm
- Oval lesion
- Sharp borders
- Firm consistancy

Here is a drawing that was included so you can get a better idea of where it is located:


These are just a few of the things I now wonder (and will ask the new Dr on Tuesday)....How can two ophthalmologists, Dr Bien-Fang & Dr Calderon, find the new tumor and yet it wasn't found by the staff at Brigham & Woman's on the MRIs? Was it there the whole time or did it just now grow in the last month? Can a cavernous hemangioma grow that quickly? If I have to have surgery again do I have a NS do it or an ophthalmologist who specializes in orbital tumors? If I had a venous angioma (one of the possible pathology results of my orginal tumor) why was that confused with a meningioma and why was it removed when I read that you generally shouldn't remove them? Is this why my surgery went to 9 1/2 hours? I have also read that sometimes Venous Angiomas are associated with Cavernous Hemangiomas so was this new tumor there the whole time or could it have appeared when the venous angioma was removed? Could the "episodes" I have been having be bleeds attributed to a cavernous hemangioma? What is the difference between cavernous hemangiomas, cavernous angiomas, ccms, etc? Is there anyone else out there that has a tumor in their orbit?

I have done some new research on cavernous hemangiomas and found a wonderful site with lots of info called Angioma Alliance (www.AngiomaAlliance.org) and hope to find answers to some of my questions there.

Other then my frustration over the whole situation I am doing OK. A number of my cognitive problems have been rectifying themselves (YEAH!). I do still have doublevision, no tears or tear drainage in my left eye which results in having to use both drops and gel to keep the eye moist, my left eye is sinking slowly into my eye socket, there is A LOT of tightness on the left side of my face and eye, pain when I turn my eyes to the left or right, and the whole left side of my head is still completely numb from the surgery. I'll post more as soon as I find out anything.

Take care,

Sue

Switched Yet Again

I received a phone call this morning from Ophthalmologist Dr Mark Hatton's Office. It seems that Dr Iwamoto, before she has even seen me, has decided to referred me to Dr Hatton. He also is in the Ophthalmic Consultants of Boston practice and I was told he specializes in orbital tumors. I do like his nurse, Jenny Smith, and she listened to everything I had to say, answered a number of questions, and tells me that Dr Hatton is the best person for me to see. He works out of Mass Eye & Ear Hospital (MassE&E) so it means that I don't get the "easy to get to" appt on the Cape, but rather the tough ride to MassE&E off of Storrow Dr...I hate having to go up to that side of Boston! Never mind the fact that the parking is awful AND expensive :-(

After Jenny heard "my story" she gave me an appt on Tues 11/7 that will include me going to see Dr Hatton at his office, going over to MasssE&E to get a CT scan, and then coming back to Dr Hatton's office to go over the CT. At that point, depending on what is found, she tells me that they will most likely schedule a biopsy of the new tumor for the following week.

I have emailed copies of my old MRI, CT, & ultrasound to Jenny so they would have a chance to go over them beore my appt and she is going to call Dr Black's office to see about getting the surgery & pathology reports. I'm a bit disappointed that I have to wait until Tuesday now instead of going this Thursday, but at least it is only 4 days further. It figures that I had to change my original appts that were scheduled for Thursday...now everything is put off longer and I don't even have an appt that day (sigh).

Happy Halloween!

Sue

Feels Like Starting Over

After waiting all week to hear back from Dr Black's office with what he wanted me to do next I finally received a phone call from Dr Black's nurse Nancy this morning. I expected to get an appt for another MRI or an appt with Dr Black. Instead she gave me the name and phone number of yet another Ophthalmologist, Dr Mami Aiello Iwamoto, who Dr Black was referring me to. When I asked why I was being referred to a new Dr I was told that Dr Iwamoto specialized in obital tumors, plastic surgery, and reconstruction, and that she was very nice. She has worked with Dr Black when she was at Brigham and Women's Hospital, before her whole depatrment left the hospital and went up near Mass Eye and Ear Hospital. I was also told that since this new tumor "was in the macular of my left eye" Dr Black was not the person who could treat it. I hung up the phone and was stunned that after wasting a week I was being referred to yet another doctor...similar to starting all over again (sigh). I have a strange sense of de ja vous or coming full circle since Dr Iwamoto is associated with the Ophthalmic Consultants of Boston, which is the same group as Dr Oats who found the first tumor. On the positive side Dr Iwamoto practices in Boston, Sandwich, and Yarmouth, MA so I can see her on the Cape sometimes instead of having to go up to Boston.

I don't understand why Dr Black's nurse said that the tumor is in the macular of my left eye when I have the picture of the ultrasound and it clearly shows the tumor in the orbit and pressing into the eye (the macular is located in the eye). On this past Monday Dr Bien-Fang, the NeuroOphthalmologist who had ordered the ultrasound, had referred me back to Dr Black and told me that Dr Black would be the person I needed to see. Confused, I called Dr Calderon at the Beetham Eye Institute (Joslyn Diabetes Center, Boston, MA), who performed the ultrasound last week and asked if he could send me a copy of my records to bring to Dr Iwamoto and also to ask him about where the tumor is located. He clearly told me that the tumor is in my orbit, just below and closer to my eye then where the other was located but not in the macular. He also didn't understand why Dr Black was referring me somewhere else, but Dr Calderon reassured me that he was a personal friend of Dr Iwamoto and that she was very good, skilled in what I needed, and also very nice. I like Dr Calderon, he is very friendly, has answered all my questions without hesitation, and seems to really love what he does.

Initially when I called to get the appt with Dr Iwamoto the soonest appt was towards the end of November. I stressed to the person making the appts that I needed to see someone sooner and felt like I was starting all over again. She put me on hold twice but finally found an appt for me Nov 2 in Yarmouth, about 45 minutes from me...which is half the time it takes to get to Boston and has free parking :-) The appts that I had already scheduled for Nov 2 have been rescheduled to Nov 14 and now I just have 6 more days to wait to see what Dr Iwamoto thinks.

I have looked up Dr Iwamoto on several websites and found that she does seem to be very highly skilled. It is probably a plus that she is also a plastic surgeon since my left eye is now a bit sunken in on that side and I would like it to be fixed if possible. Another plus is that since the surgery I have had no working tear ducts in my left eye and she also lists this as an interest, even though I haven't had a chance to mention that to too many of the doctors (I always forget). Here is a link to the website for the Ophthalmic Consultants of Boston where you can learn a bit more about Dr Iwamoto if you are interested (just copy and paste into your browser): http://www.eyeboston.com/doctor/bio.aspx?id=11

Sue

What's Happening

Just wanted to let everyone know what is happening. I heard back from Dr Bien-Fang (NeuroOphthalmologist) this afternoon and he is referring me back to Dr Black due to the new tumor that has been found. He said he had sent a file over to Dr Black's office (right next door) so they can see the findings of the ophthalmic ultrasound. He told me to call Dr Black's office, so that is what I did as soon as I hung up the phone. I had to leave a message and after an hour I heard back from Nancy, one of Dr Black's RNs. Dr Black is at a Brain Tumor conference and is due back in a day or two. In the mean time she told me that my folder was on the top of the pile of cases she had to discuss with Dr Black on his daily check-in phone calls. She will let me know, most likely tomorrow, when they have a course of action as to what is going to happen and when. I'll post more when I have the info.

Sue

Ultrasound Pictures

Here are the pictures I was given from the ophthalmic ultrasound yesterday. They didn't scan as well as I thought, but that must have to do with the quality of the paper they are printed on which is more like an old style fax paper then copier or photo paper. Regardless I think you should still be able to see the new tumor against the back of my eye. When you look at this picture the right eye is on the left side, similar to the MRI pictures and the top of the photo has the outside part of my eye. As you look slightly down the photo you can see the lens of each eye. When you get to the back of my eye further down the photo on the right eye you will see a bit of light area (similar to snow on the TV), this is the muscle behind the eye. Notice that on the right side this area is fairly consistant and "smooth", except for the vertical lines and small white specks the scanner has put on the picture. On the left eye you can see a round area which is the top of the "new" tumor, although I'm sure the blue line I added helps to find it (LOL).

If you go back to look at the pictures of my MRI before the surgery (http://slelinhares.blogspot.com/2006/07/mri-photos.html) in the top picture you can see that the tumor wasn't pressing up against my eye yet and this is one of the reasons we decided to get that tumor out ASAP, before it did press up against my eye and cause problems. This new tumor is deeper in the muscle and is right up against my eye...it IS creating problems. My double vision is due to the tumor pressing into my eye and basically knocking my eye out of alignment. The blurred vision is due to pressure from the tumor, and interestingly the yellow/orange haze I see everything through with my left eye is also due to the tumor pressing into my eye similar to the red mark you get when you uncross your legs after sitting with crossed legs for any amount of time. I also have headaches and pain in the left side of my head if I use my left eye too much or look to the side.

Once again, thanks for your emails and comments :-)

Sue

Tumors Begone!!!

I just got back from my appt at Joslin Center for Diabetes (actually the Beetham Eye Institute located inside Joslin), which is right across the street from Brigham & Women's Hospital and our favorite food court (LOL). My appointment was with Dr Calderon who was very thorough and pleaseant. He explained each test, why he was doing it, and the results. He first looked at me and noticed that my left eye was a bit sunken in compaired to my right and that it also slightly went to the right when I was supposed to be looking straight ahead. After a number of tests he dialated my eyes and while we waited for the eyes to dialate he did the ophthalmic ultrasound. This was the easiest of all the tests and I became very relaxed at first. I sat in the chair slightly leaning back and he turned out the lights, explaining how the test was going to run. He had me close my eyes and then used the doppler with gel on my eyelids, moving it around in order to see various parts of my eye and having me look far right to see behind my right eye and far left to see behind my left. He saw the vitrial layer that detached in my right eye (permenant giant floating line in my eyesight) and then saw and measured my right optic nerve saying "nothing unusual, just a boring perfect nerve". He then changed to my left eye and after a few minutes he asked if my last MRI was before I had the problems I am now having with my eyesight. I said "no, I've been having the vision problems for 5 weeks and my last MRI was 3 weeks ago, with a CT scan done 4 weeks ago". He said "Hmmm", then nothing for quite awhile as he kept checking and rechecking behind my left eye. I heard him taking picture after picture and knew that he had found something. That is when I felt the first wave of panic/anxiety flash over me. Luckily this Dr liked to explain everything, so when he had finished with the ultrasound he showed me a few of the pictures and then showed me the tape he had made as he had done the ultrasound so I could see what he had found...another tumor! (ARGHHHHH!!!) This one he believes is deeper in the muscle then the one that was just removed and it is right up against the back of my eye and optic nerve, pressing into my eye and causing my problems. He showed it to me pretty well on the ultrasound machine and pointed out that it wasn't pulsating so it wasn't a vascular tumor such as a venous angioma or hemangioma. Basically he doesn't know what it is exactly, but "it shouldn't be there" as he said. I have copies of my right and left eye (showing the new tumor) and as soon as I can get my scanner to work I will post them so you all can see it. I left the office feeling nauseous and with lots of panic/anxiety setting in :-(

Dr Calderon is going to hand deliver the results himself to Dr Bien-Fang my NeuroOphthalmologist tomorrow and said that I would be needing another MRI soon so they can figure out what to so next. If this tumor wasn't seen on the last MRI then it means that it is growing fast...or it could have been missed because the other tumor was much bigger and this was further down in the muscle. I'm going to call Dr Black's office tomorrow to let them know about this new tumor and see what they say.

I think I'm almost in shock and I really just don't know what to think but I'm trying to take things one step at a time, it just feels like those steps get pretty steep at times (grin).


Sue

Double Vision

Yesterday was 2 Months since my surgery, time sure does fly right by! I had hoped to feel so much better then I actually do by now. The first three weeks after the surgery I was doing great and then something happened that still doesn't have an explaination and all of a sudden I had jaw and gum pain, double vision, memoryloss, unsteadyness when standing, and a few other things. Thankfully the pain in my jaw and gums has gone away about 90% and I can open my jaw a bit better now...at least I can eat :-)

I still have the double vision and the sight in my left eye is only half of what it used to be. Everything has a bright yellowish tint to what I see out of that eye too. I have had this for about 5 weeks now and it is getting really old. I love to read and do crossword puzzles, work at the computer or any of a number things that require good sight and I find it very frustrating. I wear an eye patch most of the time so I don't have the double vision...since it is almost Halloween people will think it is part of a pirate costume LOL.

Tomorrow I have an appt at Joslin Center for Diabetes for an opthlamic ultrasound. Joslin is right accross the street from Brigham & Women's Hospital and both are a part of the Harvard Teaching Hospital's Group - and that is where they do their ultrasounds of the eye. I was wondering just how they did the proceedure and asked our friend Gary (who lost his left eye a few years ago) if he had it done before they decided to remove his eye and he said yes and that it didn't hurt (yeah!). They put gel in your eye and then use a smaller version of a regular handheld ultrasound thingy (can't remember the right word for it right now). It has a lens that is placed on your eye so they can do the ultrasound. What they are looling for is if there is a dent in the back of my left eye. The NeuroOphthalmologist that I saw last week did a number of tests during his exam and as he told me about getting this test he mentioned that he thought there was a dent in the back of my eye perhaps caused by the mesh that may have moved. This ultrasound will give a better look to that area of my eye. I'm not sure what I want them to find, but if there is a dent in my eye caused by the mesh then it will have to be fixed and I don't like that scenario :-( To top it all off I can't get another appt with the NeuroOphthalmologist until Nov. 29 to get the results and find out what I need to do to get my sight back! That is his next available appt...almost 6 weeks from now. I tried to get something sooner because I don't want to go for that much time before finding out what is going on (plus I hate this stupid eye patch) but was told that there was nothing sooner but to call back on Monday and perhaps they will have had a cancellation (hope so!).

It has been cloudy and overcast for a couple of days and every now and then the sun peaks through the clouds, just enough to make you smile....that has been how I have felt recently too as this situation drags on. Thanks to everyone who has left a comment, they are bits of sunshine in a cloudy day :-)

Back From The Hospital Again - Part 2

"After that I was moved up to the 10th floor (10D room72)."

My RNs on the Neuro floor were WONDERFUL! By sheer coincidence one of my nurses was the daughter of a friend, which was nice and she was even thoghtful enough to ask if I felt comfortable with her being my nurse. Another of my RNs went and got me soup from the Au Bon Pain restaurant located on the first floor of the hospital when once again the cafeteria food that I had ordered for my dinner was wrong (hard carrot sticks & celery, turkey sandwich with hard bulky roll, etc that I couldn't eat instead of the mac & cheese and custard ordered). That soup tasted SO-O-O good and I can't believe she used her own $$ to buy it for me, since I hadn't thought to bring any money with me when I was admitted first at Jordan hospital and then transferred to Brigham & Woman's.

The Doctors (actually interns) checking in on me each morning were brusque and couldn't figure out what was going on. I was getting a bit depressed, but at least I had a good roommate and her family was very nice and we chatted a bit. Then she left to go home and I got another roommate who was delirious and ended up running through the halls at 2am naked screaming "HELP!". It took 8 security guards to bring her back to bed and tie her down with restraints. That sure was interesting, to say the least! It didn't help my state of mind however, since I got almost no sleep that night.

Sunday Sept 17 my Mom was able to come visit me and it was good to see someone I knew after spending 5 days in the hospital where the only person familiar to me was Colin, the nurse who I had during my first hospital stay. I was relating everything that had happened during the past few days to my Mom and feeling a bit sorry for myself when my bedside phone rang and it was an angel sent to me in the disguise of Neva Ganun, a Gordon Setter owner who I had only emailed with once or twice through a Setters email list. Neva had gone through a number of medical events in her life and I guess she noticed how I sounded. After hearing just a short bit of why I was feeling so down she said she was going to make another phone call but would be calling me back shotly. When Neva called me back a few minutes later it was to let me know that she had called the Patient Care Coordinator at the hospital and someone was on their way to see me. I was a bit embarressed, but will be ever thankful to both Neva and her husband Sandy (who suggested she call the Patient Care Coodinator)for their thoughtfulness in calling on my behalf! Within minutes a white haired woman in a white medical coat, with a clipboard in her hands came and wanted to know everything. My Mom and I filled her in on everything including the lack of care that I seemed to be getting and she wrote it all down asking a number of questions. I made sure to express that my nurses (RNs) were all wonderful, my problem was with the rest of the staff. Within minutes of the Patient Care Coordinator leaving my room I recieved a correct meal (first one in 5 days even though I would faithfully fill out my menus each day with what I wanted and could eat). Within 10 minutes I had a resident NeuroSurgeon (Dr John Mislow, MD PHD) who came in to check on me. Dr Mislow actually sat down on the bed and examined me! He said he thought he knew what the problem was...in about .5-1% of all patients who have my kind of surgery the nerve endings from the 5th & 7th cranial nerves become inflamed. One goes to my jaw and the other my gums, amongst other places (I can't remember right now which nerve goes to which place, sorry). This was why all my gums were inflammed, swollen, and downright painful and I could only open my mouth about 1/4" by now! Imagine when you are at a dentist and they hit a nerve, then imagine each of those nerve endings being inflamed...that is what I had going on in my mouth (OUCH!). Dr Mislow told me that the good news is that there was a drug made for diabetic patients with painful nerve endings that also would work in my case, and it had no side-effects...the bad news is that it takes 4 to 6 weeks to completely work. I was so relieved to know that there was a reason for what was going on and to actually have someone who listened to what I was saying and was personable enough to sit down, examine me, and explain everything. He even waited as I wrote in my book and helped with the spelling of a few words.

About an hour later a different resident NeuroSurgeon came in to see me and explained the course of action to get me feeling better a bit further. She asked if I felt comfortable enough to go home and I said "YES!". I didn't need to see my roommate running the halls naked again for a second night in a row (somehow she was able to get out of her restraints several times already). I went home with perscriptions for the new drug that would help my gums, Lirica, and several muscle relaxers for my jaw tightness, and lots of info on what I was supposed to do, when to take the pills, etc. I was released Sunday evening and my Mom drove me to my Grandmother Kelsey's house where I stayed for a week. I enjoyed being able to walk down to the beach each day, but I longed to go home. Finally on Tuesday Oct 3 I came back home :-) Even if the place needs a good cleaning since I've been away for almost 2 months it was WONDERFUL to see all my Gordon Setter kids!!!

I've been at home for a week now and slowly with the help of Frank's good friend, Gary LeBlanc we have been trying to get the place back to normal. I wish I could hire Gary as a housecleaner - he is Great! Gary also is the person who helped Frank out with taking care of the dogs. We owe him a BIG favor someday!

Sorry it took me so long to post this Part 2 of my most recent complications. My gums are about 85% better now and I can actually chew some food, and my mouth now opens just over an inch! I just wish they had found the sinus infection too while I was there so it didn't have to get so bad, but now that I'm on antibiotics (which I asked for from the beginning) I'm doing a whole bunch better :-)

Sue

Having Trouble Part 2 - Some Good News

I can't believe that it has been so long since I have posted! I seem to have lost a lot of my perception of time passing away recently. Thanks tons to my Dad for posting the last update for me. I had originaly hoped for this blog to be an upbeat place to find out how I was doing and for others who are undergoing a similar procedure or diagnosis but have decided that it can't always be "sunshine & roses" so we have decided to be as truthful as possible.

The good news is that as you can see I am much inprovemed in the spelling and typing areas - Yahoo! It was taking me about an hour to write one or two sentences because of the errors (that even spell check couldn't figure out ) and that was so-o-o frustrating for me!

A week ago Friday we were supposed to go to Dr Black's office to hear the results of the MRI I had the week before that scheduleded appt. While I couldn't make that appt I was able to speak with Dr Black's nurse who got the MRI reports and said that all looked good with the surgical area (no new tumor, leaking vein, or other problems), but that it had shown that I had "a raging infection in my left cavernous sinus"! This infection was causing swelling in my head near my sugical area and is what was causing some of the deficits I was having! After a number of phone calls back and forth with my primary care Dr's receptionist I finally was able to get a strong antibiotic late last Friday evening. I am still having problems in the eyesight, dizzyness, short term memory, and some cognative areas, but do feel a bit better and can type again - YEAH!

My next post will be Part 2 of my hospital stay (that I promised to finish weeks ago). To the intern NeuroSurgeon who stood over me while I was in the Emergency room at B&WH and said "You shouldjust be happy you don't have pus in your brain"...I DID! I can't believe they didn't find this infection during my 2nd hospital stay, however I did find an answer to why my jaw was closing and my gums were so inflamed and painful and that is also getting better a bit each day :-)

I have several posts to make to update everyone to what has been going on, just bear with me since I still get VERY fatigued and actually fall asleep as I'm doing things :-0

Thanks for the comments, they mean a lot to me and my family, and also help to keep me heading in a positive direction rather then becomeing depressed over everything.

Sue

Having Trouble

Hi, This is Sue's father, posting for her. She can't type very well, mixing letters and making emails look more like word scrambles and typing some words backwards w/o even realizing it. This is why she hasn't posted a second part of her recent hospital stay or any further updates to this blog. If anyone from MemingiomaMommas wants to post a link to this blog to the MM forum/message board please feel free to do so since she isn't able to log on there at this time. I know she could use some good cheer in the comments section for this blog so she doesn't get depressed.

Sue wanted me to THANK ALL of you for your thoughts, helpful answers, Setter Zen and prayers. She had her latest MRI last evening (Thursday 6pm) and now the long wait until next Friday when she has her next appt with Dr Peter Black at Brigham & Women's Hospital during which time we will find out what the results are. The good news is that we haven't heard from them today, which means there is no immediate danger! Her new address for cards is Susan Linhares c/o Louise Kelsey 67 Ocean Dr. Mattapoisett, MA 02739.

Sue also wanted me to post an update on her condition, from an email I had recently posted to our family and friends. She thinks it sums up much of how she has been feeling very well. It follows:

Hi

Since her brain tumor operation, daughter Susan has been failing with
significant short-term memory loss, rambling talks, unconsciously writing with
words spelled in reverse, occasional disorientation and right arm numbness and
non-movement, full double vision, inability to open her mouth, insomnia, and so
on.  She has been staying with her maternal grandmother, Louise Kelsey, and is
not able to stay alone at her own home. Last Friday she had a review with her
doctor (Dr. Peter Black) and he ordered a series of tests and evaluations.

In a few minutes (6 PM Thursday) she will be having an MRI in Boston to see if
any cause can be detected: the options include bleeding from the area where the
veinous tumor was excised, a sudden tumor regrowth, and a missed tumor in the
brain stem. None of these are good. We hope for a better option.

She asked me to ask our family and friends for prayers.

Best wishes to all

John

Back From The Hospital Again

After 5 days I am FINALLY home from the hospital - hooray!! Thanks so much for all the calls and comments that you have all posted...you will never know how mcch it means to me. The biggest Thanks of all go out to Karol Paduch for being such a great friend and especially Neva Ganun & her husband who helped in a HUGE way to get me the correct care. I am going to post about my latest Hospital Stay, but it will be in two parts since I just gell asleep while I was typing this first part (below). Excuse any typos, the nerves in my brain ato my fingers aren't working correctly and I"ll explain that in a following post (I've re-read what I"ve written several times and don't have the strength to proof read any more).

I was able to get a ride to Jordon hospital in Plymouth by my mother-in-law Arlene which was a great relief. Once the admitting nurse heard I had recently had brain surgery I was instantly admitted and I was amazed at how fast every thing progressed (bloodwork, CT scan, IVs, etc). My mom works in plymouth, just a mile from the hospital so she came by as soon as she was out of work. The doctors & nurses at Jordan were wonderful!! After a consult with the folks at Brigham and Woman's Hospital they decided that I needed to be up there so I was transferred by ambulance up to Boston, I actually had a fun ambulance ride since the 2 EMTs that drove me loved to crack jokes and they had my same sarcastic sense of humor LOL. Once in the emergency room at Brigham & Womans Hospital (B&GH) I had great nurses but lowsy (sp?) doctors, except for two, who I'll name later)! They kept saying that nothing was wrong with me and to go home, even though I couldn't open my mouth at all, my gums were totally inflamed, I was seeing double all the time and had a bit of vertigo. At 1:30 am I actually had an intern neurosurgeon who came to my bed and said I HAD TO GO HOME! I disagreed and said I wish he could be inside my body so he could see what I felt like. At that point he said that I should be glad I didn't have puss in my brain and I was being silly. I asked him once again what was causing the problems and he said that I DID have some thing going on and they knew it but it wasn't life threatening so I should just go home. I asked what it was that they had found and he refused to tell me. During this time not one doctor had actually examined me or asked to look at my mouth. This doctor, and the two others that had come into the room and just stood above me while I lay in the bed and said "You incision looks fine and there is nothing wrong". When the doctors had left I didn't know what to do. I knew that there was something wrong and I didn't feel well but no one would listen. I also knew from some of the emails and comments I had received that I had a right to fight for myself to get good health care and I want to thank those of you that have said that sometimes you just can't listen to the doctors when they say nothing is wrong. I also knew that if they released me at 1:30am from the hospital I had no where to go since I was 1 1/2 hours away from home. So I layed in bed and felt sorry for myself for a bit, not knowing what to do. Finally my nurse, Marlene came in and noticed how down I was and told me that she thought that I had been treated horribly and she was going to take care of that. She got me some pain relievers (Yea Morphine), got me a more comfortable bed since I was on a bed that didn't have a real mattress, and then got me warmed blankets :-) I can't tell you how wonderful it felt to have someone listen to me and understand that there was a problem! Shortly after that Marlene came in with a new armband and said that she had ordered an xray of my mouth and jaw and that even thoug she was just a nurse (and not supossed to do this) she had admitted me to the hospital so I was not going home, and as soon as they had a room on the Neuro ward (10th floor) that I would be sent up there. Unfortunately by that time it was already an hour after Marlene was suposded to be off duty so I had another nures, Zada. Zada was very understafed it seemed and they had several trama and GSWs come in so I didn't see anyone for about 3 hours. When I finally saw someone they had come to move me and I thought I was finally going up to the 10th floor...boy was I wrong. They basically kicked me out of the room in the ER and put me in the hallway near the door to wait. Well everytime the door opened there was a mass of Kayoss (sp?). cold wind, and noise. There was also VERY bright lights and one of the problems I was having dealt with bright lights (in my house I have put 60 watt bulbs on dimmer switches). I asked for a nurse and f-i-n-a-l-y some one bothered to come by to see what I wanted. I asked for some releif from the glare and was given a hand towel to put over my face :-( So I started to feel badly again; alone in the ER of B&WH having to fight with doctors (which is so beyond how I usually do things), in a hallway with prisoners being brought in that were spewing foul language but getting awesome care, and basically feeling like I was a nothing that didn't matter and was just a bother to them. Finally Zada came by as I was silently crying (only out of my right eye which was very strange) and said "Oh I'm so sorry I saw you there when I cam back from my dinner and remembered that you were supposed to be transfered. They had a bed ready for you hours ago...oops. sorry" I hope she enjoyed her food because I was in excruciating pain from the noise and bright lights, hadn't been able to eat in 4 days, not to mention that I was starting to feel like I just didn't matter. After that I was moved up to the 10th floor (10D room72).

I'm going to finish my story worromot (oops, that should be tomorrow but I"ve been spelling a bunch of words backwards for some reason, without even realizing it, and that is really weird!). Until then just know that they have finally found out what is happening and it has to do with my nerve endings. I do feel a slight bit better and tht should improve each day. I'll write more later.

Sue

Latest Update

I wanted to thank everyone who responded to my last post. I'm a bit embarrassed that I was feeling so sorry for myself!

It has taken a few days and several phone calls (leaving messages) but I was finally able to get through to one of Dr Black's nurses and another member of his staff a few minutes ago. I had felt slightly better on Sunday and Monday, partially thanks to one Braintmr list member who was a help with my pain meds and another list member who I was able to talk to and helped to calm some of my fears. I did write an email to the Drs office as well as leaving several messages. Then late yesterday I started to feel really strange, A warm tight feeling started in the back of my head and I felt like I was going to pass-out or throw-up if I stood up or talked. I also started having double vision out of my right eye, not just when I had both eyes open. So I left another message with the Drs office and today several people finally called back. I think they are taking me seriously now! They told me to get up to Brigham & Womens ER today and if that is too far (it is 1 1/2 hrs away) then to go to Jordan Hospital in Plymouth which is a satellite hospital for BWH. Now I'm waiting to hear back to see if anyone in my family can give me a ride up there, so while I wait I thought I'd let you all know what was going on. I know I should have probably gone back sooner but I really was starting to feel better after I had written my last post, and talked to family members last Saturday night, stopped taking all the tylenol, etc. I thought that I was back on the road to recovery and wanted to start doing things around the house. Last night scared me a lot though and I'm ready to go back to the hospital, not wanting to have that feeling ever happen again!

Just thought I'd give you an update, I'll post again when I get back from the
hospital. I just don't have the strength to email everyone personally at this time. Oh, on a slightly happier note, it looks like we will be able to make our house payment thanks to my husband's boss and my Dad :-)

I'm Home And An Update

I finally got home last Sunday, Sept 3, 2006. It was great to be home and I love being back with my Gordon Setter "kids". Unfotrunately my 11 year old Gordon boy Sutton wasn't feeling well and needed to have emergency surgery that evening to drain a large abscess in his throat. Thankfully I have a wonderful Vet who was able to get him in to place the drain that evening (Thanks so much Dr Sue!).

Since the operation I have had some trouble opening my mouth and chewing due to the cut jaw muscle from the surgery. The week before I came home it felt like my jaw was starting to heal, but now my gums were starting to get swollen, bubbly, and my teeth were starting to hurt. It has progressivly gotten worse. I am taking a lot of extra strength tylenol (and tylenol PM at night). I have no idea what is happening to my teeth & gums but the pain is almost unbearable. By this past Tuesday I was having tons of pain and was back to taking the perscription pain relievers which I didn't like taking, but it was the only way to cut through the pain. I called Dr Black's office and spoke to one of his nurses who stated that she has never seen this as a problem from the surgery. She suggested having my primary care doctor get a CBC count incase there is an infection. I called my Primary care doctor and his nurse said they could not scedule a CBC count for me (I can't remember the reason she mentioned, darned short-term memory) and she said I needed to see a dentist. Well I don't have a dentist at this time, having fired my last one (see a post written in Aug), don't have any dental insurance, and I didn't see how a dentist would help anyway since I couldn't open my mouth any wider then to put a finger in (about 1/2 inch). I was able to get an oral rinse and ambersol to help with the pain and hopefully clear up any infection. It has seemed to help about 15% for a couple of days. Now it doesn't seem to be working anymore and I'm miserable. My jaw only opens about 1/3 of an inch now and the last two days the headache pain has returned behind my eye. The double vision, pressure, and blurryness is a bit worse too. I don't know what to do and am starting to get very depressed. I can't afford any more medical treatment and as it is we don't have any money to pay our mortgage so we may lose our house after Sept 14. I applied to an organization that is supposed to financially help people in the dogshow world who have medical problems but it looks like since I don't have a malignant tumor they won't help. I just don't know what to do and am loath to ask anyone for help since I know everyone has their own problems. I just hope I feel better soon since there is nothing else that I can do to feel better at this time. I've got a lot of stress not being able to work or even help out around the house and I feel horrible, I'd say worse then when I left the hospital. I've even thought about going to the emergency room but can't get to a hospital by myself and that would only cost us more $$. I've already disrupted the lives and work schedules of my husband and mother and can't ask them to take any more time off just to drive me to the doctors. There is so much I need to do around the house and yet I'm afraid to do anything because unless I'm sleeping I feel awful and don't want to make it worse. All I can eat is very soft canned vegetables, masshed potatoes, and sherbert. I suck on popscicles and that makes it feel a bit better but the popscicles are too thick to fit in my mouth since I can't open my jaw very wide. I tried to eat a sandwich but have to flatten and then squish the food between my teeth (not very appetizing). Each day I think that it has to get better, perhaps it is just the nerves healing? If I call Dr Black's office again I will probably only get told that there is nothing they can do again, besides I get the feeling they are busy with other people who are in worse shape then I am. My primary care doctor's office didn't want anything to do with me since I've had brain surgery, and since I don't have a dentist nor dental insurance there is no way any dentist will see me for an emergency, especially since I can't open my mouth! I'm so confused :-( All I wanted was some antibiotics, I know I have an infection of some sort, even if I don't have a temperature. I've tried so hard to be optomistic about this whole thing, but right now I feel like a fool. I can put up a great front, but when I'm alone I know how I really feel. If anyone can spare an extra prayer or bit of Setter Zen I would appreciate it a lot. I had been waiting until I felt better to update the blog but I guess that isn't going to happen any time soon so I thought I would post an update, sorry I'm having a pity-party. I'm so confused about what to do....guess I'll go back to bed.

Sue

Got My Stitches Out :-)

I'm sorry I haven't been able to update my blog recently, but it is very difficult to do so while at my Mom's house (computer location, incredibly slow dial-up connection, and very poor eyesight being a few reasons).

As this title mentions, I had the stitches removed yesterday - Yahoo! We went to Dr Black's office, leaving the house before 11am and didn't get back home until after 6pm due to the Cape Cod weekend traffic. Considering I hadn't been out of the house for more then about 1 1/2 hours since my surgery, I was completely wiped out and fell asleep as soon as I got home. That was a bit of a bummer because yesterday was my Birthday and I missed most of the calls from my family & friends. Dr Black said that the incision looks great and told us more about the tumor, why the 4 hour surgery ended up taking 8+ hours, why they had a hard time getting me to breath and my heart to beat as I came out of anethesia, and what to expect in the future. He is such a wonderful, caring man and as I left I ended up giving him a big hug. I will post more on the findings when I am able to get home to my own computer, but for now I just wanted to let everyone know that it was a grade 1 tumor as we had hoped for (Yeah!). Speaking of going home...I get to do that tomorrow (Sunday 9/3). I can't wait to see all my Setter "kids". I have never been away from home for more then a few days so this has been really hard. My Mom and Gramma Kelsey have been taking really good care of me, but I'm a pretty independent person and it has been hard for me to be dependent on others.

Thanks again to everyone who has posted comments on my blog, sent emails, cards, and flowers, etc. I never expected such an outpouring of support and it has meant so much to me! I've been taking notes of everything that I have done or gone through and will be posting it all here along with some more pictures, I just ask you to be a bit more patient with me because I tire very easily, get some intense headaches as the nerves are regrowing together, and am having some difficulty with my eyesight (lots of double vision and my left eye is totally blurry when trying to read).

Take care,
Sue

One Week Anniversary

I can not believe it has been 1 week since I had my surgery! Things have been going OK I guess. Today is the first day I've been able to get upstairs at my Mom's house and that is where her computer is. I REALLY appreciate all the well wishes that I have received! I'm pretty wiped out right now but am slowly recovering. I hope to be able to post a bigger update tomorrow or this weekend and I have a number of pictures too. I'm still seeing things with a bit of double vision and my left eyesight is blurry, but at least I can see out of my left eye and it will only get better as all the swelling goes down and I continue to heal. I have just spent about 30 minutes online reading the comments posted here and am going to go take a nap now. Thank you all so much for your support and love...I know it is what helped me be able to get through this surgery and on the road to recovery :-)

Sue

Sue Goes Home!

I left the hospital today (see photo of being ready!) -- I’m going home to my Mom’s house. I had a hard time sleeping last night so I’m hoping that by going home I can get my rest and sleep – the woman I’m sharing a room with snored all night long rather loudly. Dr. Black said I’m doing much better than he had expected me to do and even is calling me a “rock star”.

I walked around the hospital and up and down the stairs with the physical therapist who also decided that I could go home.

I had a nice visit from Bette Bryant (see photo) from the Brain TMR list and several phone calls from friends and my family.

I watched NASCAR while waiting for my nurse to give me my release orders -- unfortunately my favorite driver came in 22nd.

I will post something new in a few days.

Sue

Sue Update

Hi everyone! Kris, my stepmother, is writing this for me. I’m sitting in my hospital room where I can see Fenway Park out my window and I can wave to the Good Year blimp as the Yankees decimate the Red Sox yet again.

I’m doing fine although I do have a huge shiner (see the picture). We’ve taken other pictures that we will post later. I got out of ICU at noon today and will probably be released on Monday or Tuesday to go to my Mom's.

I'm still waiting to get a decent meal. They cut my jaw muscle so eating is a bit challenging. I just looked at the carrots and the hard sandwich that came at lunch today. I’m hoping that I get my macaroni and cheese tonight for dinner.

Dr. Black says he believes he was able to remove all of the tumor and that it doesn’t appear that it was malignant. The pathology report will be available in 1 week. The tumor was a little bigger then Dr. Black thought and that’s why the surgery was longer than anticipated. The good news is that I am able to see out of both eyes, even if it’s two of everything for awhile.

I am in Tower 10C room 59.

Thanks for all the well wishes. I’ll be back in a week or two.

Susan Survives

Sue is doing fine. She went to surgery at 7 AM today (Thursday) and the surgery began at 9. The tumor was larger than expected and more difficult to extract. Surgery ended about 5 PM and Sue will spend about 24 hours in the ICU. The doctors believe the whole tumor was extracted and that it is benign, but will not know definitively for about a week. She is groggy but coherent. Sue appreciates everyone's positive thoughts.

Surgery Tomorrow

Well this is it. We are leaving in a little while to head up to Boston. Hard to believe that tomorrow at this time the surgery will be wrapping up and I will be on the road to recovery :-)

This morning Frank's cell phone rang at 6:15am as he was getting ready to leave for work. It was his boss telling him to take the day off WITH PAY so he could be with me the day before my surgery. That was so-o-o nice! Now we can go to the hotel together instead of Frank trying to find his way up there in the dark (he hasn't been up to Brigham & Women's before). This morning I realized that this will be the first time that we will have stayed in a hotel room together since our honeymoon 17+ years ago, that is pretty pathetic.

Everythings packed, fish tank water changed, and all dog crates and bowls labeled for Gary, Frank's good friend who will be taking care of the dogs that are still here. Gary is on his way over now to go over everything one last time.

So now is time to fulfill the title of my blog...Tomorrow Dr Black will go into my orbit and then in a week or so I will be back. Thanks to everyone who has sent well wishes, called, and especially to those of you who are puppy sitting my Setter kids for me! As of last night I had received 156 emails from around the world wishing me luck, I haven't added the notes I've received today to the list yet. When I get back I will try to chronicle the whole experience so if anyone else ever has to go through the same thing they will now what to expect.

Take care all, love ya!

Sue

Hospital Schedule and Information

Today is the day before we leave to go up to Boston for my surgery. I can't believe how fast the time has flown by! It is only 60 miles to the hospital from our house but since I have to be at the hospital at 5:30am on Thursday morning we decided to get a room at the Best Western Hotel that is 100yds from Brigham & Women's Hospital. My Mom will then stay at the hotel Thursday night so she will be with me on Friday too.

My surgery is scheduled for 7:30 am Thursday Aug. 17. It will be 4 to 6 hours long. Frank and my Mom will be able to be with me until they wheel me away to the operating room. They will then be taken to the Bretholtz Center for Patients and Families in the hospital, which is right behind the main information desk at the 75 Francis St entrance. They will be given a beeper (like they give you when you wait at a restaurant) so they won't have to stay in the family center if they would like to go back to the hotel, get something to eat, or take a walk. When there is an update during or after the surgery the beeper will vibrate. All they have to do is go to the Family Center desk and they will be taken to a small cubicle and given a phone where they can talk to Dr Black. Once I am in recovery/NICU the beeper will buzz again and they will be taken to see me. I have talked to a couple of people who have had similar surgeries and they said that their family wasn't updated until the surgery was over, so I hope people don't get too anxious waiting for an update. Once my Mom has heard anything she will call my Dad and he will be updating this blog. He is flying home on Thursday but will have his laptop with him so the updates should be posted fairly quickly once he receives them.

You can also call the hospital for an update on my condition, "Family members at home can call (617) 732-7440".

People have asked for the addresses where they could send a card. For anyone wishing to send something to the hospital I should be there from 8/18 thru 8/22 at least. Here is the address:
Susan Linhares
room number (call 1-617-732-5164 if you don't know the room number)
Brigham and Women's Hospital
75 Francis St.
Boston, MA 02113

When I get out of the hospital I will be staying at my Mom's the first week:
Susan Linhares
c/o Diane Carhart
11 Jeannes Way
Forestdale, MA 02644

For anyone who is planning on visiting me the hospital is located at 75 Francis St in Boston. All I know at this time is that I will be in a room on the 10th floor which is the Neuro floor. When you enter at 75 Francis St there is a large information desk right in front of you and they will help you find my room. We usually use Route 9 to the west of Boston to get there instead of going up 93 into Boston. It saves a bit of traffic aggravation. Here are directions from the hospital website for anyone who is traveling from the South. More directions (and other info for visitors or about the hospital) can be found on the B&W website http://www.brighamandwomens.org.

Take Route 128 (I-95) north. Take Route 9 east for six miles. Take a left onto Brookline Avenue (Brook House Condominiums will be on right). At third set of lights, turn right onto Francis Street. The hospital is one block down on the left.

Phone calls are allowed but it has been stressed that I keep them to a minimum since this type of surgery causes extreme fatigue. Also, since there are two beds in each room I wouldn't want to bother my roommate with a constantly ringing phone. If you feel that you would like to call the main phone number at the hospital is on their website (link is above).

Well I think that is all for now. If there is any info that I may have missed just write a comment or email me and I will add to this post.

Lets Not Rush Things

I received a phone call at about 4pm today from Heather, Dr Black's Surgical Coordinator. She told me that Dr Black had a cancellation and they wanted to do the surgery tomorrow morning! What?? I explained that I didn't think it would be possible since my family had all been planning on it being Thursday taking time off from work and flying in to visit. I also have an appt with my orthopedic surgeon who wants to make sure my elbow is comfortable while I'm in the hospital. Heather said it was totally up to me but they wanted to offer having the surgery a couple of days early. So I told her that I would stick to the original date and see them Thursday morning.

I've been planning on Thursday and still have a number of things to take care of before I head up to Boston Wednesday afternoon. That phone call sure was a surprise, I'm glad I didn't have to change the surgery date!

Next week at this time I might be able to go home to my Mom's :-)

Like Mother, Like Daughter?

When my mother was a teenager, back in 1957, she fell off her horse onto pavement and fractured her skull (a dog spooked the horse). I believe it was called a double basal compound fracture. She was in a coma for several weeks. They had to remove the bones covering the back of her skull due to both the fractures and swelling, and they had no idea if she would make it. Well, obviously she did :-) She has lived almost 50 years with a plate covering the back of her skull and has been on dilantin all that time to prevent seizures.

Now it is about 50 years later and I will be having surgery to remove this tumor along with a couple of bones in my head that will be replaced with titanium and I will be on dilantin. I know my Mom is worried about me (as are all my family and friends), but wonder, is this payback for the worry she put her mother through way back then ;-) Kind of like the old saying "Just wait until you have a daughter/son just like you" (lol)

Several people have called and emailed to ask if I was nervous or worried about the upcoming surgery. I'm really not worried too much, especially compared to all my Mom went through and survived...and that was 50 years ago at St Lukes Hospital in New Bedford, MA (shudder). I have the best doctors and Hospital, will have the surgery with Dr Black using an interoperative MRI, and they only had an xray for my Mom's surgery! I figure that other then a headache this has to be better then abdominal surgery since I'll be able to eat sooner and won't have staples from hip to hip. Mostly any anxiety I'm having is with the unknown. I'm the kind of person that checks out everything before a vacation and doesn't always like unexpected surprises. I also like to be in control a bit too much at times and tend to hate the idea of people having to change their lives to take care of me. With this surgery I will not be in control of anything for about 2 weeks or longer afterward so that is bothering me just a tad. I tend to make a lousy patient and can give good advice at times, but rarely listen to myself (grin).

Next week at this time I will be in my regular room getting stronger every day. Since there are two people to a room I hope I have someone nice and not someone who thinks their husband is hiding under the bed (you had to be there, lol).

Five Days Before Surgery

The days are seeming to fly by now as it gets closer to surgery day. This afternoon I drove to N. Stonington, CT to meet Karol P, who will be taking care of my youngest Gordon Setter "kids", 12 month olds Heater & Calleigh. It was so hard to have them go, but I know it is for the best. Driving home it took a bit longer then the normal 1 hour 20 minutes due to several accidents on 95N & 195E. By the time I got home I was very aware of one of the reasons I'm having this surgery. I had an incredible headache behind my left eye. Extra Strength Tylenol has only made it subside by half and that is the only pain reliever I'm allowed to have. I finished my dog chores so I can get to bed early tonight (early for me is about midnight LOL). I've been getting these headaches for a couple of years actually and used to tell Frank I thought my van must have an exhaust leak because I'd usually get them after being at a dog show and driving home in my van. I know now, after talking to the Drs, that running around the ring was making pressure on the tumor and then the driving and paying attention to the road would strain the muscles behind my eye near the tumor and further anger it, hence the headaches...Frank kept telling me the exhaust on the van was fine, I guess he was right, especially since I didn't use my van today (LOL).

I've received some very nice cards from friends and also a couple of folks that I have never met but we belong to the same email list or forum. What a nice, thoughtful surprise! The cards and emails are very welcome and appreciated because it sure helps to not feel afraid or alone when I know people are thinking of me :-)

Next week at this time I will be out of ICU and in a regular patient room at the hospital.

Pre-Op Appointment

One week before surgery, aka the day it starts to seem very real. Today my Mom and I went up to Brigham & Women's Hospital in Boston, MA for my pre-op tests; blood, urine, chest xray & EKG (I think it was an EKG, they hooked my up with a number of wires and checked my heart). I also talked to the pre-op nurse, who took all my information, and an anesthesiologist. That took about an hour and a half. Then we moved to Dr Black's office to speak to his nurse Nancy. She was very nice and answered all our questions. We were also able to get an authorization letter so we could get the patient discount at the hotel. I was given a number of more handouts and a pamphlet titled "5 Steps to Surgery" that has what to expect while at the hospital after surgery. Once we had finished with the appts. we were hungry and decided to try out the hospital cafeteria. The food was really good! My Mom had broiled scrod with rice and I had beef stew. They have valet parking for patients so I went to pay and before we knew it the car was in front of the hospital. $12.00 for six hours valet parking was so much better then the $23.00 for two and a half hours for regular parking at Mass Eye and Ear! We drove by the hotel we will be staying in the night before and noticed that they have a food court on the ground floor with, among other restaurants, a Dunkin' Donuts for Mom's coffee, Orange Julius/Dairy Queen for Frank, and Beantown Burrito for me :-)

Some of the things I found out today....
- The surgery is called a left frontal craniotomy.
- My hospital room will be on the 10th floor of the "Tower" (the Neuroscience floor) once I'm out of ICU.
- I was given a special surgical soap called Hibiclens to wash with two days before, the day before, and the morning of the surgery.
- Frank and my Mom will be given a beeper when I am admitted prior to surgery. That way they will be beeped when there is an update during my surgery. They will be able to go back to the hotel for a bit or get some breakfast and not worry about staying in the "family room" at the hospital. Speaking of the "family room" it is a really nice place for families and friends to wait while someone is in surgery. It has nice comfy chairs, lots of TVs, computers, a library, cubicles or private rooms if you want to wait in privacy, and is right under the cafeteria and patient rooms.
- Once I have my IV in Frank and my Mom will be able to stay with me until I'm wheeled to the operating room. They will then see me again in 6 hours when I get to ICU (I'll be in ICU for about 24 hrs after the surgery). Dr Black has the operating room booked for 6 hours for my surgery.
- I signed a paper donating what is left of the tumor after the pathology test and two vials of blood to a research project Dr Black is undertaking. I figured I didn't want it back so he might as well make good use of it (LOL).
- During the surgery they will cut my left jaw muscle (why?) so eating will be difficult for a while. When I wake up I will have 2 IVs, an arterial line, catheter, oxygen, the compression boots that prevent blod clots, and lots of beeping and buzzing machines all around me.
- When I go home I'll be on the following medications: anti-seizure because they will be working near the front part of my brain (dilantin, like my Mom has taken for years), steroids to help prevent swelling (decadron, 1 pill equals 10 prednisone from what I was told), pepcid to help prevent damage from the steroids, pain meds, and a laxative because bowel movements put pressure on your head and that would be very bad as I was told.
- I will have to ride in the back seat of any car that has air bags for four weeks because if I was to get an air bag in the face it would not be a good thing. As Frank says, now I can be a real back seat driver (LOL). I also won't be able to drive for about 4 weeks.
- Everyone at Brigham & Women's Hospital is super friendly!

So it looks like everything is all set. I have a few more doctors appointments and then next week at this time it will be over and I'll be in ICU being pestered by nurses every hour or so.

Feelings and Thoughts

They say that you go through several stages when confronted with news of cancer, tumor, or other life-changing situation; shock, denial, anger, grief, acceptance, etc. I clearly remember the shock when at 8:30am the morning after having the MRI I received an unexpected phone call saying bluntly "There was a mass found on the MRI". I sat for a minute and then called my husband Frank and just told him bluntly, not considering the fact that he was at work operating some sort of heavy machinery. I then called my Mom at work and probably ruined the rest of her day. Next up was a call to my Dad and a good friend, Larry. I don't think that I was scared, I think I was in a state of disbelief....I feel fine how can I have a tumor in my head? Never in my wildest dreams did I think that this would happen to me.

After that first day I have tackled this from a research viewpoint. I have scoured the internet looking for websites, message boards, forums, etc that have information on meningiomas. Some of that research has paid off in that I am being seen by one of the most internationally respected Neurosurgeons at a top notch brain tumor center and it is only about 60 miles from my home. I have also met via the internet a number of people who have a similar tumor, have had the same Doctor or hospital, or are newly diagnosed. It makes me feel good to be able to pass along the info I have compiled to people who are also just starting this journey.

One week from today is the last full day I will spend at home since we will be heading up to Boston the day before my surgery. I can start to hear the days ticking down in my head. I know from my last surgery, which was scheduled 6 weeks before the actual operation, that the waiting is definately the hardest part. The day after tomorrow I will be at Brigham & Women's Hospital for pre-op testing and have been told to expect to be there for 4 to 6 hours. I'm sure after that point the reality that in slightly less the one week I will be undergoing a major surgery on my head will finally hit in. People have told me that I am handling this better then they would, that I'm amazing and an inspiration for posting a bit of the research I've found and not falling apart. I think they all underestimate themselves. In the past I've fought with depression and anxiety and never would have guessed that I would be so calm and assured. When I first heard the diagnosis I was very afraid that I might go "to the dark side". I have had two or three mini crying breakdowns but those have been brief and out of frustration (my dentist problem or the person who thought I was looking for sympathy). Mostly I am looking at this as a positive thing which I know may sound strange. I think a good portion of that has to do with the fact that I tend to be proactive in my health care and always try to find the best doctor that is available. I am so confident in Dr Black and actually all the doctors I have seen that I have only the slightest bit of apprehension. I'm trying to focus on the fact that this tumor was found by accident before it could do much damage or grow to the point that it can't be removed, thinking positive instead of asking "why me?". Asking why me leads to self pity which leads to depression and I'm trying hard not to go there, it is not a good place, especially since I totally plan to beat this thing so it doesn't come back! Instead I continue to focus on things like the fact that I like to wear hats and scarves so this gives me a reason to buy a few new ones...another positive thing :-)

More About Meningiomas

Here is a bit more about Meningiomas and brain tumors:

Between 1987 thru 2003 Dr Peter Black preformed over 1600 Brain tumor surgeries at Brigham & Women's Hospital.

Meningiomas are one of the more common primary brain tumors but are very underfunded. Because of this very little is known in regard to causes or cure. Very little research has been done on finding a drug therapy that could help since (and because) the first course of action is usually surgery. Nationwide, about 266,000 people are living with benign brain tumors, of which meningiomas are by far the most common. And the five-year survival rate after surgery for meningioma, do to recurrance or location, is lower than that for breast cancer and yet breast cancer is very well funded. Each year more of the population is diagnosed with a brain tumor, 27% will be meningiomas and yet there is a stigma to the term brain tumor or brain cancer. Sen. Arlen Specter of Pennsylvania underwent brain surgery in 1993 for a meningioma, and later had radiation treatment for a recurrence. Elizabeth Taylor underwent surgery for a meningioma also. "Why do public figures who have a meningioma/brain tumor stay so quiet?''

The following is from:
Brain Tumor Guide for the Newly Diagnosed
Version 2.5
Updated 4/19/2005
Copyright 2005 Musella Foundation
Virtualtrials.com

Every day, an estimated fifty adults will be diagnosed with a primary brain tumor (starting in the brain), and many more will be diagnosed with a cancer that has spread to the brain from someplace else in the body, such as the lung or breast. Additionally, thousands of parents annually will hear these devastating two words – brain tumor – in
regards to their child. There is no known cause of tumors starting in the brain and for many no known "cure." However, there are certainly ways of extending your life and improving the quality of that life.

Brain tumors are described by where they are located in the brain and what kind of cell they started from. Primary tumors begin in the brain, while Secondary tumors are caused by tumor (cancer) cells that spread to the brain from another "primary" source in the body, such as breast or lung cancer. Primary brain tumors are classified (diagnosed), in part, by the type of cell it originates from. For example; Astrocytomas come from astrocytes, oligodendrogliomas from oligodendrocytes, meningiomas from meningeal cells and medulloblastomas from medulloblasts, just to name a few.

When dealing with brain tumors, the word "benign" is a little misleading. It implies that the tumor is not dangerous. Unfortunately, the brain is enclosed in a rigid container (the skull) that allows no space for a tumor mass to grow. As a tumor (even a "benign" tumor) grows, it builds up the intracranial pressure and compresses everything around it – which
can lead to neurological problems and even death. Luckily, there has been a lot of progress in the treatment of the "benign" brain tumors. One type, the acoustic neuroma, used to be incurable and usually fatal. Now, it can be cured in over 95% of the patients, sometimes with a relatively simple radiation procedure.

Are brain tumors the same as brain cancer?
This is controversial. There are arguments for both sides: some argue that a brain tumor rarely spreads outside of the brain, so it isn’t "cancer". Others argue that it has the potential to grow and be deadly, so it is. I feel that brain tumors should be considered "Brain Cancer".

Neurosurgery
Surgery is performed to improve neurological function, confirm your diagnosis by means of a biopsy ("open biopsy" or "Stereotactic biopsy"), or to completely ("total resection") or partially ("sub-total resection" or "debulking") remove the tumor. With a resection, you also get a biopsy of the sample removed. You should ask your surgeon for a copy of the pathology report. You can easily (but it may be expensive – check first) get a second opinion on the reading of the pathology slides. There is a lot of interpretation put into the reading of the slides, and this is the single most important test you will ever have in your life, so it may be worth the money to double check it. For some benign tumors, surgery may be curative. For the malignant tumors, surgery may relieve symptoms of too much pressure in the brain and allow time for other treatments to work. Malignant tumors can grow so fast that without surgery, other treatments might not have the time to work. Surgery is also an opportunity to try a treatment that requires direct access to the brain. Surgery is performed by a neurosurgeon; however, a general neurosurgeon may not have adequate experience in the removal of brain tumors, and may be less informed regarding current treatment therapies. Most neurosurgeons do not see many brain tumors. You need to find one that specializes in brain tumors. Check out their website and make sure that "brain tumors" is listed as one of their main areas of expertise. An "expert" is defined as one who performs a minimum of twenty-five per year; typically these neurosurgeons are associated at some level with major brain tumor centers. Studies indicate that major brain tumor centers and/or surgical teams that perform fifty or more surgeries a year exhibit better survival rates and fewer complications. "Brain surgery" sounds like a very scary thing. It is. But as previously mentioned, it is now much safer and easier than ever. Advances in 3-d computer guided imaging, intraoperative imaging with ultrasound or MRI, and small endoscopes allow surgeons to remove many tumors that used to be considered inoperable. There are still some tumors that because of the size or location are too dangerous to remove, but the limits are shrinking every year. If you are told that your tumor is inoperable, get another opinion.

A Similar Surgery

I was sent a link to a website that describes a similar surgery to what I will have. This surgery is performed in Canada with a different Neurosurgeon. The tumor location is not the same as for me so once they open this person's skull the surgery is a bit different, but I've been told the tumor type and general opening, closing, and removal procedures are the same. Since a few people have asked what the surgery involved I am posting the link here:
http://www.eye.net/eye/issue/issue_02.24.00/news/tator.php

Starting To Get Ready

It dawned on my today that since I will be going to my Mom's house when I get out of hospital I will need to pack a bag for Frank to give to her. So I brought my suitcase downstairs along with a zippered LL Bean bag for the things I'll need while in the hospital. I started putting a couple of things together that I didn't want to forget, and before I knew it I had both the suitcase and bag packed and ready. I put them in the other room and have one less thing to worry about.

I had my hair cut a couple of days ago to make it easier to get the "crud" out that I hear they leave in your hair after surgery. Since I was told I couldn't wash my hair for 2 weeks (yuck!) I thought if it was shorter it may be easier to get the crud out. It also won't be hot around my neck. For the first time since I was about 4 or 5 years old my hair is above my shoulders and it seems strange. It doesn't look bad though and since they will be shaving a 1 to 1.5 inch along my hairline for the incision it looks better then it will (LOL). I also bought a few cotton hats and scarves to wear until the shaved spot grows back.

10 more days and I have so much more to do....

Home Alone

I've had a number of surgeries over the years and feel I have a fairly good idea of what my surgery and stay in the hospital will be like. I figured that while I would probably have a heck of a headache this wouldn't be as bad as being cut across the abdomen, through muscles, from hip to hip with a bunch of surgical staples as far as being able to get up and walk around. I knew I would get tired easily but thought that I would be able to make it to the kitchen or bathroom since our house is small and I won't have any stairs to worry about. My plan when I came home from the hospital was for my husband Frank to be home the first day and then he would need to go back to work. I would have someone come in the AM to let my dogs out, come back around noon to check on me and water or bring in the dogs (depending on weather), and then Frank would be home from work around 4 to 6pm. I'd stay on the daybed in the living room and have a cooler near the bed with snacks and drinks. My bathroom is about 20 steps away. This is what we did for my last surgery and it worked out fine.

I have since found out that this is not a good idea. I have been told by a number of people that I need someone with me 24/7 for at least the first week or two and preferably the first 4 weeks. As I considered how I was going to be able to have someone with me all the time (and how bored they would be while I slept) I realized that there was no one that I knew that could come here without being severely inconvenienced. I really didn't think it was a problem for me to be home alone for parts of the day but one person reminded me that I don't have any neighbors, the closest house being about 1/2 mile away through the woods. There is a slight chance of seizure, losing consciousness, or other need for emergency care, and I was also told that I would have dizziness and nausea when standing. So after a phone call to my Mom I will be going to her house (on Cape Cod, about 25 miles from my house) and my Grandma K will stay there to take care of me when my Mom goes to work. Mom is using up all her vacation days the week that I'll be in the hospital. I'll stay there a week or until I feel I can be on my own. On one hand I am grateful to have a nice place to stay and someone to take care of me, the other hand is a bit sad that I will be away from home for about 2 weeks. I'm going to miss being there, and especially Pumba (my Gordon Setter Bestfriend). I know she is going to be upset with me gone for that long. She gets anxious when I go to the store! I told Frank and my Mom that they have to drive me home before I go to her house when I get out of the hospital...I don't think that went over to well (lol).

Questions For The Doctor

I found this list of questions to ask your Doctor or Neurosurgeon on the meningiomamommas.org website and thought I would post them here with the answers to the questions that I received. It seemed to be an easy way for me to answer lots of people's questions and also have as a reference for others who may be dealing with the same diagnosis.

1. For peace of mind, please tell me about a meningioma in terms I can understand. This is all very overwhelming and if your neurosurgeon can calmly explain what you are dealing with, it makes the journey you're about to embark on a bit easier. You will see in previous posts, where I have posted info on meningiomas, that I received a number of pamphlets on the tumors and surgery from Dr Black's office.

2. What are the pros and cons of having the surgery or not having surgery? I had the option of "watch and wait", but that was not advised due to the difficulty of removing the tumor if it grows to much larger.

3. Are there alternatives to surgery--radiation, chemo, Cyber Knife, Gamma Knife? For me, because this tumor sits against the bone they recommend surgery and removal of the bones to get clear margins (leaving no cells behind).

4. Who would you recommend for a second opinion regarding my condition? Dr Black was recommended to me by both the members of the Braintmr list and also by my surgeon Dr Grove. I can't imagine there is a more skilled person for my tumor then Dr Black.

5. If I was your spouse or child, what would you do? I asked this question of Dr Grove and he would take it out if it was his wife.

6. What are the risks and/or side effects of surgery? Of course with any type of surgery there is a slight risk of death. There is also a slight risk of losing the sight in my left eye, partial paralysis to my left eyelid and double vision.

7. What types of residual problems may occur due to the surgery? Mostly cosmetic (scarring or left eyelid may droop) but those should rectify themselves in time. Slight chance of double vision or blindness in the left eye.

8. How many of this exact type of surgery have you performed? Can I talk to any of your other patients? Dr Black has performed over 1600 of these surgeries and I have been very fortunate to have spoken or emailed with a number of his patients. Each told me "there is none better".

9. What follow up medication/treatment will I need and for how long? Antibiotics and painkillers to start and anything else I will find out depending on how the surgery and pathology turn out. There is a chance of radiation treatment depending on the pathology report.

10. What are some of the emotional issues associated with my condition and treatment? There is a chance of depression and some patients are given anti-depressants.

11. Approximately how long will the surgery last? 4 to 6 hours from start to finish.

12. Expected length of ICU stay? 24 to 36 hours

13. Expected length of hospital stay? 4 to 6 days

14. Is an arteriogram or embolization needed, and why? I do not have the answer to this yet and will ask during my pre-op testing.

15. Will there be blood loss, and should I bank blood in advance in case of transfusion? I do not have the answer to this yet and will ask during my pre-op testing.

16. What do the surgeon and the nurse recommend to get the patient in the best condition pre-op? Daily multi-vitamin, eating a healthy diet, and 15 minutes of exercise or walking a day.

17. Where will the incision be and will my head be shaved? It will start on my hairline above my left eye and follow the hairline down to above my left ear and then to the outside corner of my eye. They will shave a 1 to 2 inch area down the hairline. It should be an interesting look LOL.

18. Before surgery, what medications can still be taken including vitamins or health supplements? Only Extra Strength Tylenol. No aspirin, Advil, Alleive, etc or other types of blood thinners. No extra vitamins other then a daily multivitamin.

20. After surgery, what are the warning signs for infection or complications as opposed to normal recovery symptoms? Red puffiness or oozing at the incision area, headaches.

21. Which doctor will I see for follow up? Is there more than one doctor involved? I do not have the answer to this yet and find out during my pre-op testing.

22. Clear instructions on how to look after wounds. If physical defects are involved, what is the plan of action? I will get these answers after the surgery.

23. This is a question for the anesthesiologist--can you prescribe anti-anxiety medication that may be taken prior to the surgery? I do not have the answer to this yet and find out during my pre-op testing.

24. What will you be replacing the dura with? (if you care about such details) The bones taken out will be replaced with a titanium plate and titanium mesh.

25. When can I color my hair again? (I know this is sounds vain, but this is one of the most commonly asked questions by our members.) Yes, after 4 weeks if all goes well.

26. Ask your NS what his/her travel plans are immediately following your surgery. Make SURE there he/she is not leaving on a two week vacation the day after your surgery. He/she will claim their partners are fully capable of following up, however, the partners are not invested in you as a patient and you are very likely to get blown off when complications arise. No worries for me, Dr Black will be just back from a 2 week cruise so he should be rested and refreshed :-)

27. Take the time to write out your complete medical history with dates(including hospitalizations, etc. and all the typical questions that every doctor needs to know). Include family medical history for parents/grandparents/siblings (i.e. heart disease, stroke, hypertension, etc.) Done

28. Bring the Doctor a list of medications you are presently taking. Should I continue with them? I don't take any medications at this time.

29. Will I have my own room? I didn't even think to ask, but as unbelievable as it sounds, I was given a roommate after surgery. You need your own room. Ask beforehand so it's one less worry for your family. I do not have the answer to this yet and find out during my pre-op testing.

30. Will there be any driving restrictions--especially important to know if you had seizures prior to surgery (and if you will be on AED's post-op) and if there are driving restrictions in your state. The efa.org is an EXCELLENT resource. Because I will have double vision for about 4 weeks, until the nerves and muscles behind my eye heal, I won't be allowed to drive until it clears up.