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