My family Doctor referred me to a neurologist, as I have fallen several times in the last year or so. It doesn't matter if I am inside or outside. I lose my balance just standing still and my husband says it's like living with a drunk.
I didn't want to go to another Doctor as in the last few years I have seen:
Dr.Holsinger, Dr. Kaufman, Dr. Jayne Dr. Pollack, Dr. Taylor, Dr. Ray, Dr. Baknaleigh, Dr. Williams, Dr. Quinlan, Dr. Baker, Dr. Lemons, Dr. Nick. Four of these are neurologists. Some have helped and some have not.
One of these Doctors did my first MVD. (it failed.) One of these Doctors, At Mayo clinic in Rochester, Minn. opened my head two more times in back to back surgeries. This is when they had to sever the trigeminal nerve. My face is totally numb on that side. I figured that by having my face numb would be a piece of
cake, compared to what I had been dealing with.
Boy Howdy did I get it wrong. This is when the Anesthesia Delorosa set in.
This was five years ago, and the pain has not given me a days rest.
I have been through the mill, so I am a perfect example of what trigeminal Neuralgia is about and why I couldn't even say that word for the last five
years as it has taken so much away from me. I am so grateful for Neuro Talk
as I finally opened up so maybe I can work through the bitterness.
THANKYOU
Truely a believer Doodle bug7

I can relate to soo much doodle. the last time which was very recent I went to docs . arggh. it is like that most times for me. it is like I am a show and tell medical/science project. last time seen 3 docs each one just once ...passed down the line all in same building . no one wants to mess with my mess ha ha haaaaaaa.and no one can really explain my shaky jaw or stop or control it. it is hard to tell others what this is like "they" describe a.d. as numb and it is sorta numb but then also there is constant pain at same time
sometimes the pain is turned up blasting loudly inside your face/head and you freeze praying no pleading and offering silent deals ..If I don't move or turn or roll over or smile or speak or swallow or lick my lips or touch my face or open my mouth... just let up on the pain monster please I promise....
I think having to deal with being off balance and worrying about slip and falls would be something I would want at least to try to get help with. I am not saying go have brain surgery but . after my crash I was off balance and hub would not leave me home alone. was from my head injury and took awhile to become steady not just standing but also sitting I would become dizzy. don't be afraid to have a chance at taking one of your problems/ worries hassles for possible help.control . you can at least hear what the neuro says and you dont have to do anything . heck I know I wont be letting any neuro work on me unless it is dire emergency must must. But I am open to any ideas they may have that could help with out doing more permanent damage. Remeber YOU are in controll of YOU in that I meen YOU do not have to do anything YOU do not feel right doing or feel right about. But still give chance to hear what neuro will say he/she may at least have tips for you to do to help not be so unsteady. exercises or something.
Will holler back to you tomorrow. early tomorrow.
Peace by the truck loads for you Patti
BMW

Jeeez Doodlebug7 - what a frightening account.

I am just starting on the neurologist road - makes me think I should take a different road now.

peace

stewart-tn

Please don't get discouraged because of my list of Doc's. Everyone is so different from the other. In my case of trigeminal neuralgia, I was told it was the worst case he had ever seen. (Dr. Pollack, mayo clinic)

The intense pain I had experienced was always the sharp lightening streaks
across the left side of my face. I wouldn't have even be able to be at my computer to write in neuroTalk. But that was me. Thank goodness we are
all a little different, or we would have nothin to talk about.

Doodle bug7

Thanks Doodle bug7
Just had the worst week - intense multiple lightening streaks on the right of my face seemingly spontaneous or triggered by little things like clicking on the mouse. Triggers are in my mouth as well - so haven't been able to eat, drink or talk without pain. Increased dose of tegretol to 800mgs per week - seems to help. Going for MRI tomorrow - so I guess I'm on that road anyway :-)

stewart-tn

Hi stewart, please let me know how your appointment went. Are you making any progress? D bug7

It has been an interesting roller-coaster ride. The MRI scan was last Monday. I had a bad feeling about it and I was certain the medics had found something - the way they pointed at the computer screen and talked animatedly and then came to give me the injection of the contrast dye before doing another scan. But of course they can't tell you at the time. I actually got quite depressed the following day. I was supposed to get the results on Thursday March 6, but the neurologist called to say that I should come in urgently on Wednesday - which of course meant bad news.

The neurologist said I have a benign brain tumour - an acoustic neuroma that has also caused almost total deafness in my right ear. I've probably had this for 10 years (when I first noticed some loss of hearing) so it is now quite big - and according to the neurologist was probably now pressing on the trigeminal nerve. So the neurologist booked me in to see a neurosurgeon two days later - on Friday morning - to discuss my options. In the meantime, my tegretol had to be increased to 1200mgs per day to try to stave off the spasms.

But then on Friday I had an interesting session with the neurosurgeon. In his opinion, it is unlikely that the tumour is causing the TN as it is only 3cms whereas they are usually 4cms before they interfere with the trigeminal nerve. He feels that it is more likely the usual compression of the nerve by a blood vessel that is causing the TN.

So I now have two things to be dealt with.

peace

stewart-tn