Recommendation?

[joviyach]

I had surgery to remove a benign tumor a little over a year ago, and since then I have been having some strange neurological symptoms that seem to come around when the weather changes. My hands get twitchy, and I feel like I am just on the edge of seizure though I have never had a seizure.

I am taking Topamax, and I have taken many tests including 24 EMG and they have all come back normal. I am wondering if anyone can recommend the best Neurologist in Illinois?

Thanks,

Jim

[myshkinus]

what type of tumor and what area of the brain if i might ask?

anna

[Boopers]

Just wanted to say I'm sorry and that I can't help but hope you can find someone to find your problem.

Good luck,
Linda

[joviyach]

The tumor was a choroid plexus papilloma in the fourth ventricle. I was extremely lucky to have not ended up with a shunt, or any severe adverse results from the surgery. There was a great possibility of losing control of my facial muscles, including my ability to swallow, and as with any surgical procedure of the brain, the possibility of death. I was told before the surgery that I had "one of the best possible tumors in the worst possible location".

[Tootsie]

Jim,
I have nothing to suggest here as both the tumor and the procedure are beyond my knowledge or experience.

However, it sounds as if you had a wonderful surgeon and a very successful outcome. Why would you want to change doctors now? The one who did the original procedure knows all about the challenges and theprocedure that he performed. Keep working with him. Give him written permission to discuss your history, symptoms and response to treatment with anyone he feels might have insight into what might be the source of your current symptoms.

At some point, a second opinion might be useful, but discuss that with your original doctor. He might be grateful for another set of brains working on the problem. Cheerio.

[joviyach]

I certainly don't have any problems with the surgeons, or the neurologist I am seeing now. The surgeons I had were the best. I guess I am just looking for different perspectives on what is going on with me now. I work in the IT industry by trade and I guess I just see these symptoms as a problem to troubleshoot now.

[Tootsie]

Hi Jim,
While there are many paralles between the IT industry and medicine, the one basic difference is that humans are individuals and unique. The process of solving problems is the same...just more imponderables with humans.

Have you considered that the barometric pressures that occur with weather change may affect your responses? Have you discussed the dosage of the Topomax with your neurologist? Might you need a minor change in dosage either all the time, or just when the weather changes? Might the pressure changes influence the Topomax, by either excretion rate, or absorbtion rate? I do not know the answers to any of these questions, but perhaps it would be worth your while to check with the experts.

Then, too, it may be that this particular symptom is just one of those things you learn to live with being grateful that it is relatively minor. Cheerio.

[joviyach]

The thought that barometric pressure changes are triggering the symptoms has actually crossed my mind. I mentioned this to the neurologist last time I visited, and I will again, hopefully he will be able to tell me something.

[joviyach]

My latest problem, which isn't really the latest, but I forgot to mention it earlier because it hadn't really been bothering much until just recently is, my hands sometimes feel very clumsy and unwieldly. Sometimes even buttoning shirts, zipping coats, tying shoes, etc... is kind of annoying.This is another thing that there doesn't seem to be an answer for when I go to the doctors. :(

[pab]

hmmm have you had your neck checked out? with computor work, cervical issues are not unusual......also positioning for surgery may have exacerbated a previous neck issue ( definetely not saying that it did!, just that it may have)....