I have seen a neurologist twice now - been on Tegretol ( only 200mg daily ) for the last 3 or so months. I loathe being on this medication as even though I am on a low dose I am forever forgetting things and mixing up my words! The fogginess has gotten alot better, but I also know I should be on a higher dose as I am often getting break through pain througout the day, everyday!
Next week I see a Neurosurgeon for the first time. I want to know what kind of questi0ns I should be asking him?
I would like to take a list of questions with me to the appointment and I dont want to come out forgetting to ask certain things. I want to know what my future holds for me and what my options are form here on in.
It seems pretty evident here in Australia there isnt alot of support for this condition :(
I asked the same question recently and learned that under the Face Pain info tab there is a section that speaks to this. Very helpful.
I would also suggest "briefing" someone and bringing them with you to assist when you might have difficulty.
I was bothered but able to function on the lower doses of Tegretol but now, at 1000 mg a day to handle "break through pain" I am in a "fog" most of the time. I have had to stop working as I do not have the mental dexterity and focus to do my job.
I wish you the best of luck as you tackle this obstacle in your life.
Hi
I also suggest you take someone with you to see the neurosurgeon who is familar with what you are going through such as family member or close friend. Make sure you do your research on different procedures. I had an MVD in May 2009 after having TN pain for 8 years. I was first sent to a neurosugeon in my area and after talking to him realized he didn’t have very much experience in the MVD surgery. By the time I went to the second neurosurgeon I had done alot of research and traveled out of my area to find someone with the experience of this surgery that I was comfortable with. I had my list and he answered all my questions. I have been pain free since the surgery. My neurologist thought I should have the Gamma Knife, but both surgeons said MVD. I wish you the best in finding your way to being pain free.
Connie
HI, Two things I would suggest one is ask for MRI that way you can actually see the problem, and second is get the book Striking Back thru this site it describes each proceedure and alternative care in detail. The more you know going in the better you will feel with what you need to ask and what your next step will be. When it first happened to me I went to the internet found video on Youtube, and joined this site and the living with TN. I walked in with a stack of information. But the Book and my family support helped me make the decision I made.
Hello Rachael, I too am going for an MVD consult next Monday. I am very lucky, I know my neurosurgeon, and he is very informed about all things TN and Chiari. Go with the best informed Doc, one who does this on a regular basis. I too have researched all procedures done for TN. MVD was the best procedure for me, which offers the highest % of coming out pain free for the longest time. I have known other patients who went with other procedures and are now going for the MVD. Make a list before you go of everything you want to ask. I do advise watching the surgery on youtube. It is very informative and also makes it less fearful for you. I also suggest taking someone with you if only for support. Whichever you choose, my prayers are with you for a speedy and painfree ending.
When I finally got an apt. with a neurologist, which was still a few weeks away, I immediatly went through my calendar and traced when the pain started, what type it was , where it was and how it progressed; any Dr. or dentist apts. I had and the dates and names of any prescriptions I had taken. I know that may sound a bit obsessive/compulsive, but theses are questions that will be asked of you. I had done tons of research on MVD even before I saw my neurologist and then neurosurgeon. But they will tell you practically everything you want to know about the surgery, at least mine did. Take notes during your apt. if you need. Since I'm a RN I didn't have as many questions about the basic surgery and hospitalization. One thing I do regret , is not staying in the hospital another night, since the first night home I ran a fever and had horrible total headache. Hope some of this helps you. The surgery helped me a lot. kg
Yesterday I had my neurosurgeon appointment!! I took my list of questions and he answered them all for me. I went through the same tests that my neurologist gave me ( but i figure this is standard practise)
He diganosed me with 'classic trigemenal neuralgia' and I have to say, I was relieved when i heard this as I hear the other type is not so receptive to the MVD operation.
He also told me everything that I already knew as I too am obsessive compulsive about knowing everything about this condition.
Basically he told me I am a 'prime' candidate for MVD and he also saw what he believes is to be the offending blood vessel on my MRI scan.
I aske him how many of these operations had he done, which he replied "lots". I then asked how many have been successful and his answer was " most of them, however not all" I then asked why not all and his reply was " sometimes when you go in you may not find anything, which means perhaps the pain is coming from deep within the trigemnal nerve, which no human can see!"
At this point I cried. I have a natural personality which is scared of failure, so this operation falls into this category for me. I am so scared to put myself through this massive surgery to come out and still have this pain!
In the meantime I have decided to take more Tegretol ( getting far too many break throughs) and see if I can make sense of it all.
I have another neurosurgeon appointment ( different guy) late Feb, I will be interested in what he has to say.........
thanks for letting me vent, I would be lost without the support of those going through the same
Hi Rachael, I forgot to tell you that along with the book -Striking Back- I also read the book -Working in a Very Small Place. It is all about the MVD surgery. I purchased both from the National TN site. I was also able to talk to a patient that had an MVD by the neurosurgeon I was going to and it really was a relief to listen to the praises this man had for this neurosurgeon. The man was 70 years old when he had the surgery and I was 55 years old when I had mine. This was the first surgery I had ever had, so I really didn’t know what to expect. I hope the carbamazine can get you through until you make your decision. Good Luck
Connie