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