NeuroTalk Support Groups

Hi Everyone.

I'm brand new to this forum and thought I'd introduce myself in the hope all you people with the same medical stuff going on could give me a few pointers!

I am 57 yeas of age.Was diagnosed with Fibromyalgia about 6 years so already know what pain feels like.I am on Gabapentin,just 1300 mg at the moment as when I was on the higher dose my hair started to fall out so I reduced it.

In the last year I got this new thing going off in my face.
The pain is more unbearable then anything I have ever felt in my whole life!

My first port of call was the dentist who said I must be grinding my teeth in my sleep (what sleep!I have fibromyalgia),anyway I had a guard made but when I tried to put it in that night,the pain was so bad I was crying my eyes out trying to take the guard out.

I was getting this horrendous pain,lasting about half an hour,easing off,just to come back half an hour later,repetitive day and night.This lasted for about 10 days.I couldn't eat solid food,struggled to have Complan (liquid food) through a straw,couldn't clean my teeth,could barely speak.

All this was on the right side of my face,it was like a line had been drawn down the middle of my whole face that the pain didn't pass.
During this time I saw a Dentist,a Doctor and went to A & E.I was desperate.

All the Medical people thought it was something called Trigeminal Neuralgia.I'd never heard of it.Thats when I looked it up and found that even tho I didn't seem a text book case,it certainly sounded like this thing.

After my 10 days of hell.It went,just went away.I still had tenderness in my temple area but the rest seemed to have gone.I couldn't and still can't eat solids on my right side.

One week,two weeks passed and I was sitting in wait,on edge waiting,dreading it coming back,on the forth and fifth weeks I really was thinking it's not coming back.During these weeks I was sent to a Neurologist who told me I may not get it again for years but he said medication was the first step.

I was given Carbamazepine. On my 3rd day,everything came back,but seemed even worse,even though I couldn't believe that was possible.I went back to the Neurologist as I seemed to have the TN plus the added stress of most of the side effects and that was only the lowest dose.He stopped this med and asked me to try another.The exact same thing happened!I could not cope with the side effects and the pain.

The Neurologist finally sent me for a scan.When the results came back,he said he was referring me to the Neuro surgeon.

Before this appointment I had five days that I could only say certainly makes me understand why it is known as the suicide disease.This thing wasn't waiting a couple of years to come back,it was taking my life over every couple of month,each time with what felt like worse then the last.
My last one lasted over 3 hours,plus I had the added bonus,just for good measure,a cluster headache at the same time.
I couldn't cope and would willingly have been put out of my misery at that time.

On the brighter side,believe it or not I am a very happy person in between my body invasions :)I cover things up pretty good.

I went to see the Neurosurgeon,he showed me the scan and said he thought the best way forward for me would be the MVD.
I'm scared but will have it done because whatever happens has got to be better then living in hell waiting...

I see lots of you on here have had this operation and I'd really like to know how you've all been during and after this operation.

It says on the web that you're usually home after the second day but the Neurosurgeon says I will be in hospital 7-8 days and 6 weeks recovery.

Could you tell me the negative and positives about having this operation.

Well I've gone on a bit I know,and even though I wouldn't wish this thing on my worst enemy,its good to know some of you know what each of us is going through.

If you got this far before being bored out of your brains,then I thank you for reading it.

Christina.