Hello Jack....
First of all, I'd like apologize for the delayed response. I had a long reply ready to post from within the A.N. forum when the internet suddenly disappeared from the system tray at the bottom of the screen. Backstepping through the browser as well as an internet history check proved fruitless in retrieving what I had written. Needless to say that will be the last time I attempt to compose anything substantial from within the post/reply window within the forum. I will be using either Notepad or MSWord - where I'll be able to save my work every step of the way - to write and will copy and paste from there onto the field. I recommend this technique to anyone composing a lenghty response.
Well....that's some pretty heavy stuff you're talking about! Not having had radiation in my treatment nor having had to carry on as long as you have since your treatments, I'm really not in a position to speak authoritatively about the problems you're experiencing. I have had, however, some brain stem difficulties.
You say that you had radiation six years ago? That's a long time! Do you think they were accurate in the area they were targeting? I was told that radiation stops the growth of a tumor but does not reverse its growth. How big was the tumor by the time you had it removed? When it comes to the brain stem and all the cranial nerves that can be effected back there, we're dealing with a veritable "Pandora's Box" of difficulties and problems that could erupt. I have intuitively come to believe that our individual outcomes may be attributable to "how the cards fall" so to speak. That is, how big the tumor is, what nerves are consequently being stretched, violated, moved or "insulted" and how this all effects the flow of c.s.f..
In my case, the tumor I had was reported to be 5cm x 5cm but looked like a tennis ball in the M.R.I. photos. My symptoms were increasing deafness in my left ear, double vision and, just before my treatment,deteriorating handwriting and catastrophic equilibrium problems. Upon inspection of the MRI photos, the doctors questioned how I could still be walking around or that I was still alive. I was told that I had two problems: The first being the tumor and the second being fluid build up - hydrocephalus, which compounded my equilibrium problems. This was brought about by the size of the growth, pressing on the brain stem and blocking the flow of c.s.f., causing a build-up of fluid in my cranium.
The first step in my treatment was the installation of a permanent shunt to remove the c.f.s. build-up, and a month later, the resection / debulking of the tumor itself. I spent a lot of time in the hospital last summer and fall!
Seven months later here I am, doing much better - although... My left ear is done - unless I'm someday abducted by aliens that can implant a new acoustic nerve.
Along with my left ear feeling like it's plugged up with cement, there is a constant roaring and whooshing - tinnitus - that ebbs and flows during the day - every day. My handwriting is still trashed - although it seems to be slowly improving. My left hand is slightly impaired; not good for a left-handed person. This is probably my worst symptom because it's like I've had a mild stroke. Being an artist and musician it's really bothering me. I was told that this is due to the tumor having pressed on the cerebellum. Although the growth is no longer there, it had made an impact by moving nerve tissue around and it takes a great deal of time for the body to relearn and rebound back to its
natural state. Another example of this is left-side facial numbness due to the insulting of the trigeminal nerve during surgery. To this day the left side of my face feels as is I was shot up with novocaine. It was so bad after surgery I was thinking it was my facial nerve that had been effected. Thankfully, my facial nerve survived intact. I have full movement and control of it. But it's not as if I can't feel anything on the left side. I'm chewing food more freely and can drink now without the aid of a straw. I still have a hard time chewing on my left side not being able to feel the food as on my right side. But this condition is improving. After surgery my double vision was at its absolute worst. I needed to wear an eye patch every day for 2-3 months before it eased up. Now my vision is normal for the most part. I played bass at a gig tonight
and my chops are starting to return although I still have a long way to go to get it all back.
One of the things my neurosurgeon said to me was that the tumor was so big and had been growing for so long it had established itself as a major blood vessel conduit. He said that there must have been over one thousand blood vessels running through it that blood flow had to be disrupted during excision. All of those pathways need time to heal and redirect to other areas.
Hopefully the damned thing won't grow back.
Another thing he said to me was they had cut it as close as possible and that it had separated from the nerve well. I've read a number of cases where tumors were reported as being sticky and difficult to separate from nerve tissue.
For brain stem difficulties you should check out posts written by"msuscottie". He's been through the mill with that stuff.
The saving grace for me before and after surgery has been physical fitness.Up to the time my equilibrium deteriorated on me in Feb. 05, I was jogging five miles a day - had been for years - and weight training - since 1980. In between surgeries - after the shunt installation - I felt a big difference in my equilibrium and could run long distances again.
I am now running 2-3 miles a day and weight training. I've noticed that, although I may feel looped, fatigued and lightheaded at times, my body is always solidly grounded because my legs and core are strong.
I am fortunate to live in the Boston area and have the highly skilled and experienced team of doctors that I have at Mass General: Neurosurgeon, Dr. Barker and ENT, Dr. McKenna from Mass Eye And Ear Infirmary. Here are their respective webpages:
http://www.massgeneral.org/doctor/Medical_Professional_Detail.asp?MPR=8956&ON=13957
http://www.meei.harvard.edu/shared/staff/otodocs/mmckenna.htm Take Care, Paul
