Trigeminal Neuralgia: Hello my name is... - My MSAA Community

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Trigeminal Neuralgia

Teka profile image
Teka
17 Replies

Hello my name is Teka and I'm recovering from my Gamma Knife Surgery I had done last week and I was wondering if there is someone out there that has had this experience due to MS.

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Teka
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17 Replies
WAshingtongirl profile image
WAshingtongirl

Hello, Teka , I can't help you with your question, but I believe erash and maybe others might be able to. I'm sorry you suffer from TN.

We hope you find us to be a warm group of new friends here. We're a little crazy at times, but we also know how and when to be serious. Welcome! 💕

greaterexp profile image
greaterexp

Teka , I hope you are recovering quickly. Keep us posted about your progress.

Jbahnan profile image
Jbahnan

Hello Teka, I have TN recently been on gabapencin for 2 days so far ill let u know how its been after about 10 day, GOOD LUCK to u!!

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply to Jbahnan

I'm on gabapentin also for the numbness and tingling. Started with three 100 mg capsules a day and quickly worked up to seven a day. If I happen to be late taking them, the tingling just immediately tells me get those darn pills. dr. said I could possibly take more but I'm trying not to increase it. so many changes going on in my body because of MS😊

erash profile image
erash

@teka

Teka I have TN and had gamma knife GK last June

What ?s do u have?

Private message me if u like

Liz

Juleigh21 profile image
Juleigh21 in reply to erash

erash Was your surgery successful? How long was your healing time? What type of doc does that surgery?

erash profile image
erash in reply to Juleigh21

Juleigh21

Yes but it took me about eight months before I was able to wean totally off of the Tegretol. And now I'm left with full right sided face and head numbness. Much preferable to TN Though!

Supposedly the numbness could be permanent or may go away. And of course GK is not necessarily a permanent fix .

It's nice not to be nauseated from the Tegretol And my brain is actually functioning a little bit better.

Juleigh21 profile image
Juleigh21 in reply to erash

erash I'm happy to hear your pain free! 😊Every time I had a block I had a lot of numbness for a while. Preferable to pain. I'm now on tysabri and the doctor feels that that should hold me and I shouldn't need as many blocks. I guess it's working because the closer I get to needing an infusion the more the TN pain surfaces.

erash profile image
erash in reply to Juleigh21

Juleigh21

My last MRI interestingly showed a blood vessel abutting the trigeminal nerve. I always wondered whether it was MS lesion or a artery compressing the nerve now I'm not sure. Therefore a DMT probably wouldn't make a difference if it was the Vessel???

My Tn preceded my ms by about 10 years. Never showed the vessel abutting before

That doesn't necessarily mean anything in regard to MS lesions since they may have been present before they were detected by MRI

No but sending hugs for speedy recovery.

Fancy1959 profile image
Fancy1959

Teka, it's Fancy1959. I have had MS for about 20 years but I have never had gamma knife surgery do to my MS or complications that it brought into my world! Welcome to our awesome chat room. We're glad you're on board. You are found a safe place full of caring and compassionate people where you could come and talk about your concerns like you did, ask questions, or simply speak to someone who truly understands what you are going through. Make sure you reply and give us your birthday so we can sign you up for the birthday club I started. That way like many families do our extended family will give you happy birthday wishes on your special day!

I look forward to getting to know you and the quicker we get to know you the more we can learn from each other. Until we speak again please take care and remember that together we are stronger!💪👍

Juleigh21 profile image
Juleigh21

Teka I have had TN since 2012. I've had many blocks done since then. So far, so good. Please keep us posted on your recovery! Good luck😊👍.

Teka profile image
Teka in reply to Juleigh21

Hi I am doing much better now since my surgery. So just maybe my prayers will be answered. I won't know for another 5 months but I feel good right now. One day out of time is the only way I love now, cause you never know from one day to the next how you'll feel. But over all I feel better then I did. 😊

Juleigh21 profile image
Juleigh21 in reply to Juleigh21

Teka I am glad to hear that you're feeling a lot better than before. Fingers crossed for a pain free future!

KimChat profile image
KimChat

I had Gamma Knife in 2011 due to a brain tumor. I also have MS. Why did you have Gamma Knife for MS?

KimChat profile image
KimChat in reply to KimChat

By the way I am new to this site. Fist time responding. Hello everyone 😊

Teka profile image
Teka in reply to KimChat

I was diagnosed with trigeminal Neuralgia on my left side of my face. The pain was out of this world.

It's been a month now and I feel better but only because I make sure I don't miss not one pain pill be it my norco, ibuprofen, carbomazapine or my cannabis. It's been good.

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