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

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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

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  • Posted

    Hi

    I am so sorry to hear of your troubles. You have come to the right place, the people on this board are lovely.

    It's my dad that has TN. He went to a neurosurgeon specialising in gamma knife surgery. The MRI clearly showed the nerve and the blood vessel touching.

    Before the surgery he was taking 700mg of carbamazepine and it was barely touching the pain. (The side effects of blurred vision and tiredness were dibilitating.)

    A year on, Dad is on 300mg carbamazepine, most days are very good. I can predict his bad days based on the weather!! A change in pressure creates a tightness and sometimes shooting pains. Have a look at gamma knife, it can be done more than once and is less invasive than mvd.

    Good luck.

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    • Posted

      I'm glad your dads pain has improved.  My guy feel's that if I'm not eligable for the MDV he'd rather do the glyserol, he feels it's less traumatic with just as much chance of working as the gamma and can be repeated if nessesary so I would be happy to go with his choice on that but thanks so much for sharing your dads story with me and for the advise.  I've got a lot to think about but will wait for the MRI first.  All the best for your dad and for all of you as it's hard to see the people we love suffer 

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  • Posted

    Hi, I know exactly how you are feeling. You've come to the right place to

    find others who understand. I've been too scared to really share my

    deepest worries about having things go wrong with the MDV but have

    decided that I can't live with the pain anymore. So I'm due to have my

    op on Saturday! I am terrified, but I keep trying to stay positive. Just like

    any operation things can and do go wrong, but it's a chance I've got to

    take. The quality of life I've had with TN is miserable. I've been virtually

    housebound for the last few years. The attacks got longer and although

    Carbamazepine helped at first, the doses have gradually increased to

    the point that I can barely function and am like a zombie.

    An MRI showed positive and when Isaw it I just burst into tears! I think

    many of us have waited a long time to be diagnosed. I've had teeth

    removed unnecessarily because the dentist convinced me the pain was

    from my teeth. I was told I needed CBT because I probably had chronic

    fatigue syndrome or fibromyalgia. It wasn't until my regular GP wasn't

    available and I saw a locum. He was the one who first mentioned TN and

    sent me to see a neurologist who specialised in TN.

    I saw a different GP this week and she said I was the first person she'd

    ever seen with TN. I spent 20 minutes with her telling her how it had

    started and what to look for. Hopefully it will help her spot it in another

    patient suffering from undiagnosed TN.

    I'm sure you will get lots of replies from people who are in a similar position

    as well as those who have had positive outcomes from MDV, gamma

    knife or glycerol injections that will help you make the right decision for

    you. Hopefully once I'm home after my op I will be able to tell you about

    a positive result myself!

    Take care and pull up a chair. You're in a good place here. x

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    • Posted

      Wow you've really been through it too!  I've also got CFS and thyroid problems that definatley agrivate my TN but the meds really floor me, although I find the gabbapentin so much better than the pregabalin for not making me a zombie but they do still make me really tired but I'm on the full 36000mcg and still in pain sad.  My surgeon is one of few in the country who've actually specialised in and studied TN so that's a good thing I hope.  

      I'm so sorry for how long it took you to get diagnosed, and loosing teeth unnessesaraly is awful!  I really and truely hope all goes well for your surgery.  We just have to think positive I guess and have faith in the good doctors that come our way.  Please do let me know how you get on.

      All the best x

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    • Posted

      I have thyroid problems too, and yes I'm sure it doesn't help things.

      I tried both pregabalin and gabapentin but shortly after starting them

      I was suicidal. So, they gave me Carbamazepine/Tegratol as it's

      alternatively known as. I'm up to 1600 mg and the side effects are

      crippling me to the point of being unable to properly function

      any more. I also take Amitriptyline 100mg at night.

      Whereabouts in the country are you? You may find other people

      who are under, or have been treated by the same consultant. My

      neurological hospital is the Walton Centre, Liverpool.

      It makes me sad to hear so many people who are struggling with

      TN. You've not had it easy either. I do think it helps to find people

      who can understand what you are going through. I found a lot of

      my friends can't get their heads around it all. They don't get that

      there is no cure, or why painkillers like morphine don't help. At least

      here you can share your fears, ask questions, and know that someone

      will always reply. x

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    • Posted

      Oh that's awful you felt suicidal!  I couldn't do the Amitriptyline though, they were awful for me, I'm glad you find them to be ok though.  The thing I hated most about pregabalin was the weight gain while on it and the withdrawal coming off it, the rest was bad but bearable but after the CFS I just found those 2 things too hard.  I'm in Edinburgh, I'm not sure how I would find out who else would have been treated by my consultant but it would be good to know, there's no support group here unfortunately.  It really is hard to get your head around and people just don't get how crippling it is, they can't see it.  With all my illnesses people just don't understand what it does to you, I do have some friends with long term illnesses and depression though so they understand a bit.  Tbh though the TN scares me, I try not to let it but theres no real cure and as you say the meds just debilitate you, I just get scared of it getting worse and I'm only 38.  Sometimes I can't talk properly, can't smile, can't eat without being in pain and can't kiss my daughter, when she does or says something funny or sweet I just grimis as her cause it's all I can do, it's heartbreaking. It is good to share though thank you x  

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  • Posted

    I had the very same fear before I had a stereotactic rhyzotomy. I postponed the surgery because I was so scared. Ultimately I underwent the procedure and am coming up on one year of no pain. The neurosurgeon would zap the nerve while I was "out", then bring me back to conciousness and have me give feedback on numbness...or lack thereof. He was conservative and it all worked out in the end. Ask the surgeon for his stats on the procedure. It was the best thing I did for my TN. FYI, I had two gamma knife procedures which did not really help.

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    • Posted

      i am scheduled for stereotactic rhyzotomy this wed apr 12. have had mvd & 2 gamma knife. any comments on numbness after your procedure. i can handle this, but concerned about  losing corneal reflex in left eye. pain is in v2 & v3 - the lower portions of tri nerve. doc says since no pain in v1, upper part of face near eye should be fine

       

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  • Posted

    Your brave girl. 12 years? For me 6months. Glyserol? I am in America. I am on 5 different meds.. In pain, frustrated, tired and want to be done. I am being referred to a neurologist and neuro surgeon. ??

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  • Posted

    Hi

        I have only had this condition a year, and I feel for you having it so long, and to all that has this,  I'm very knew to this in a forum and trying to get help to get some feedback aswell, I can understand what you are feeling, but can't imagine the length of time you have dealt with this, somehow you are brave, where as me, only a year I'm losing the plot, I can't even speak, when have an episode, I just want help too and wish you well, all best, and good luck, hope you get free from this xx

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  • Posted

    Hi, I am happy to say that I had MVD surgery on 1/23/17 and feel great! I am still recovering from the surgery with head pain at the surgery site but the TN pain is gone!!! I wish you well. Mary
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    • Posted

      Thanks Mary and to everyone, the more positive MVD stories I hear the better but yes I will ask my surgeon for his stats first.  All the best to everyone with this awful condition xx 
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  • Posted

    I have been recently diagnosed with this terrible disease.  I would ask your Doctor if it is due to some autoimmune disease.  If so, it may not be correctable with surgery.  Just ask a lot of questions and do as much research as you can to illicit these questions. Good luck
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  • Posted

    Hi there. I have had mvd surgery 4 days ago at the Walton centre. I was like you i was completely terrified it feels like playing Russian roulette when making the decision to have it done.. I can only tell you about my own experience. I had TN for 2years. I don't need to explain the pain or the debilitating effect of medication. I decided the anxious wait between attacks and then the daily struggle to keep working when attacks were severe meant it was a gamble I would take. I was fortunate that the blood vessel compressing the nerve was very apparent. I was also fortunate to have professor Eldridge perform my operation. It was my trust in his expertise that helped with my desicion. I so far have a positive story. I woke up to an incredibly stiff neck and heavy head but full feeling in my face. I have since had to return to hospital with massive headaches and fever but again that has passed. I have lost the hearing in my right ear but this happened after op and I also suffer pulsatile tinnitus so I think it's just the pressure in my head causing that and I'm hoping it will get better. Even if that is a consequence of the op it is nothing in comparison to the TN pain. I also spoke to another guy who had just had it done. He had suffered for ten years. He had lost a bit of sensation in his top lip, which he hoped would improve, but he was very pleased he'd gone through with it. So there are two success stories. My best advice is check out your surgeon and make sure you feel confident. I cannot rate Prof Eldridge and his team at the Walton centre enough. I travelled from Carlisle to go there which was a pain when going for tests etc but I might not have made the decision to go ahead with any other surgeon. Everyone is different but the more you know helps and it is a very very low percentage of things going wrong. Hope this helps and you know we all feel the same having to choose to do what may be life changing things. Good luck and just ask me anything if you need to

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  • Posted

    Hi I am barely managing to hold my phone steady enough to type, my head and face is burning on the left hand side and have been since yesterday morning. I saw my neurologist who is referring me to a neurosurgeon regarding options I may have or. Oh have. He increased my carbemazepine yesterday and since then I have been sick, I have the shackes I have been so drowsy that I can't walk in a straight line. Think I will relish any surgestions the neurosurgeon has to to say.

    All the best

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