My wife and I met with two neurologists at The Massachusetts General Hospital this past week. It was a good appointment.
After taking my medical history and examining me, they came to the conclusion that I may have symptoms of both typical and atypical TN.
They are going to have a neurosurgeon at the hospital look at my MRI to see if there is any evidence of a compression on the nerve.
My major issue besides the pain episodes are the side effects from the tegretol (1200mg). They understand this and are empathetic. I also take 10 mg daily of Baclofen. I have had fewer episodes since the dosage of tegretol was increased to 1200mg and the baclofen (which was added long after I started with tegretol) increased to 10mg. One of the questions in their mind is, has the Baclofen helped or just the increased tegretol or both?
So its time for some trial and error. Since I was generally "non-foggy" at 700 mg of Tegretol they want me to go back to that level. They advised me to keep the Baclofen dosage the same. If the episodes start again they want me to have on hand and immediately use Indocin to see if that works on the pain. The idea is to come to some level of pain management that doesnt compromise my cognitive abilities. It of course opens me up for some attacks of pain during the process but a fair trade off, in my opinion,to see if I can regain some brain power and potentially use medicine to control this condition.
Taking these measures will also help them in determining what I may or may not or not "have" . The indocin may or may not work and that will tell them some things as well.
I was very impressed with the time they spent with us. They are not coming to any definitive conclusions out of hand. I think that is good because they just met me. I feel they are being very thorough. We discussed surgery a little bit but they made it very clear that we have a few things to try before that and that surgery would be a serious step, not taken lightly.
I am very glad I took the initiative to be seen at MGH. In my mind, being a large teaching hospital, they have resources and combined experience my local neurolgist does not. They see more patients and they have the ability to "crosstalk" with many other doctors on the staff..
I go back to them in a month, they will be in contact before my followup to see how I am and urged me to contact them should the steps we're trying work/or not. I thank them for their caring and professionalism.
We'll see what happens. I'll let you know.
Best to you all.
Rick in RI