1. Community
  2. Brain and nerves
  3. Trigeminal Neuralgia

Am scared and need to talk to other TN sufferers about operation options

Posted , 14 users are following.

PerkinsPea
PerkinsPea

Hi

I've had TN for 12 years now and been on and off medication with not much help from doctors or specailits and it has become increasingly worse. I saw a surgeon who wants to opperate, either the MDV or the glyserol injection depending on what the new MRI says.  I'm just looking for other peoples stories as I don't know anyone else with TN. I know there is a very small risk of making it worse which is irriversable. My life lately has been kinda unlucky and am just so anxious of being that person for whom it goes wrong, the thought of it being worse is devistating.  Does anyone know of this happening or had it happen to them.  How many have had positive experiences of the procedures? This is my first time posting on any forum. Any input is welcome. Thank you all, my heart goes out to anyone living with this awful condition xxx

1 like, 18 replies

18 Replies

Prev
  • mallory22442
    mallory22442 PerkinsPea

    Posted

    I  have the following disorders in the following order

    ​1. reflex sympathetic Dystrophy -- a painful nerve disorder with no cure which finally went into remission. Sorry to say ...10 years later is is back and giving me pain But bearable pain.

    2. Next I was diagnosed with Lupus

    ​3. sjogrens syndrome and dermatamyositis quickly followed

    4.then 4 back surgeries for ruptured discs not  something I would call a picnic

    ​ 5. And then TN with the most horrifying pain I have ever experienced!!!!!!! Ihad MVD surgery at Mayo Clinic as the cerebellar artery was pressing on the TN nerve in 3 places.It was not a terrificley tough recovery and I never gave up! So my advice is not to give up. Although surgery is not guaranteed for everyone  I simply put my self in God,s hands after all my bad luck and other than the rturn of RSD am doing GREAT!!!!!!!! Have Faith that it will be OK if the MRI shows an artey pressing on the TN nerve. That is a prerequisite at Mayos to have MVD surgery. GOOD LUCK !!!!

  • army183
    army183 PerkinsPea

    Posted

    Hi PP and everyone.

    I can join in the group of people who have had positive outcomes from MVD. There are a couple of other discussions going on in this forum about surgery and I know that I and some others have contributed to these. So, they should help with giving you some positive feedback.

    Mine was done at Addenbrooke's in Cambridge, in hospital for two days and recovered remarkably quick at home. Was given 4 weeks off work by GP including no driving. Have been making slowish but steady progress. No adverse side effects, no TN pain except when I reduced my Carbamazepine too quickly (from my maintenance dose of 1000mg per day). You have to wait a bit for the inflammation to reduce and for tissue repair to occur properly. No point expecting to get totally cured in a few days!

    Having full review with my neurosurgeon on 25 April. The MRI and the surgery both showed a clear arterial loop compressing the root of the nerve. A Teflon pad was inserted and a titanium plate over the hole in my skull. I can probably pick up local taxis and Radio 4 via my metal plate if I concentrate.

    So far, very happy with the op and the outcome and getting my life back.

    Cheers

    Big D

  • Thelstdon
    Thelstdon PerkinsPea

    Posted

    Greetings all,

    I do not have TN but my wife does. She was diagnosed with it 4 years ago and it has been an up and down cycle. Specifically these past two years have been the worse. At one point it was being managed quite well with medication, but then it started going ballistic. Currently she is getting magnesium infusions every two weeks, and have also included acupuncture in her rotation, not including medications.

    We have been considering the idea of surgery, but the doctor we are seeing, seems to be shying away from. The nearest reputable physician that does the Gamma is approx 6 hours away and of course it is not guaranteed a sure fix. The acupuncturist on the other seems to be quite confident that she can decrease her inflammation which is causing the distress. Of course the question is how lonng?

    I can't say that TN has robbed our lives, but it has made itself right at home. It is quite annoying and draining to go through this, but I keep reminding myself that nothing is too hard for God and He has giving us the strength to fight on. So we continue to press and pray and hope for the best.

    It's good to see there is a group available of like minded individuals who can relate. My prayers are with each and everyone of you, as I hope yours is with ours.

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.