Hi, I've had my TN for 10+ years now. I'm interested to hear the experiences of anyone that's had a second Microvascular Decompression op. I had my first a couple of years ago but it hasn't been successful. I'm trying to manage the pain and hold down my full time job as a PA but on the dosage of meds that I'm on, it's a massive struggle. How do other people manage their jobs?
I'd be interested to know this as well. I had my first in June of this year and so far, so good, but I still want to plan for the future as I am pretty young (40) and expect it will return in my lifetime based on the research and evidence.
Hello Anna,
I, personally, would not do a second MVD for a million dollars. I would like to know your side effects of your surgery. I had to retire from Teaching (early), and I am only able to sub from all the PAIN. I hope you make the right decision.
I've only just had my MVD 2 weeks ago and I still have some pain, although not as often and intense. I am still waiting and hoping to see that it gets better over time.
However, I too am on high dosage of carbamezapine, lamotragine and Gabapentin. I am not the same person I used to be; I am always tired and groggy. It is not a great way to live.
If it turns out that my surgery did not work, I too would never have a second procedure done. My recovery has been very difficult, to say the least. My surgeon had said our Plan B would be rhizotomy. Has this option been brought up with any of you?
RSW,
There are two types of rhizotomy. One is Percutaneous Stereotactic Rhizotomy, and the other one is Glycerol Rhizotomy. PLEASE RESEARCH, RESEARCH, AND DO MORE RESEARCH, ON BOTH OF THESE BEFORE MAKING A DECISION. Not the Physician in charge. For me, a BIG fat NO. God Bless.
Hi greg66242, thanks for your reply. I'm lucky enough not to have any side effects from the surgery, just a bit of sensitivity on my head where the plate is. Apart from that, nothing and I had a very speedy recovery. I'm really struggling at work due to side effects of meds though - 'double' vision virturally all day at the moment and I'm a bit cognitively impaired from it as well, ie not as sharp as I would usually be, unable to find words and articulate myself at times. It's very frustrating and I feel like I'm only operating at half my ability. The stress of worrying about my pain going off while I'm at work and talking to people makes it worse - I feel very embarassed when it goes off and my arms fly into the air and I cry for no reason! It's so hard to explain to people. However, I plod on because I can't afford not to work. If you don't mind me asking, did you take early retirement because you were near that age anyway, or have you retired very young? I'm only 45 and need to keep working for some time yet. I'm very interested to hear how other people manage in terms of working / off sick / retiring early. Thanks very much - it's good to talk to people who understand.
I am just curious, what parts of the world are all these comments coming from?
Thank you,
Greg
I'm not desperate enough yet, but in the future who knows 
You're welcome. I had to take an early retirement because in teaching Math, my ability to think faster than my student's(High School), was diminishing because of the pain, meds, and side effects. So I just sub for right now. Yep...this monster sucks, and people do not realize what we are up against. I hope this helped...a little!
I'm from Vancouver, Canada
Hi Greg, I'm in the UK. My son is doing his Masters in Maths (major to you I think?) and I couldn't think faster than him even before he started! Joking aside though, I'm so sorry to hear you had to leave (apart from the subbing) your profession. It's such an inconvenient condition to have, because from the neck down I'm fine, but it's from the neck up that I need for my job. I hope your recovery improves and you end up with total pain relief, I really do hope that for you and I'm sending positive thoughts across the ether to you.
Thank you to you both. It helps so much to just be able to share this misery with people who actually understand.
I wish you both the best. I refuse to believe that we just have to suck it up and live with this horrible condition for the rest of our lives. We have to keep talking about it so that there is more awareness for it, and hopefully, some very much needed light at the end of this dark tunnel.
colin04561, just curious, did you have instant relief after your MVD?
Anna43144, I was just reading through your note again, and the part about double vision caught my attention. I had that a year ago, just suddenly came out of nowhere. Lots of testing and all, and in the end, it turned out my body had started to reject my high dose. True enough, we dialled it down a bit and the double vision stopped. Of course the pain would come back with the lower dose, but then we slowly increased the dose again and I was fine.
Just thought I'd let you know, for whatever it's worth. I find that we have to find all kinds of creative ways to deal with the many difficult things that go with this disease.
Hang in there!
Hi,
I only work part time as a Registered Nurse. I have other health issues in addition to the TN (some sort of inflammatory arthritis/Lupus like condition) all my colleagues and my manager are aware of this and understand my limitations. I do a mixture of nights and days. On a day shift I usually start later than the rest of the staff and I seem to be allocated the 'easier' patients!! I'm not sure if that's deliberate or not but it does take the pressure off. Unfortunately I am a workhorse and can't stand by idly twiddling my thumbs and so I help the others out. Yesterday I was in a bit of a brain fog and found that I just couldn't do much at all, it was too hot, my joints hurt and the TN was making an appearance now and again so I did slack off a bit! I take a variety of medications two of which make me sleepy, but that's okay I like sleepy. I do get my mords intertwingled though and often can't do simple arthmetic or spell when I feel like I did yesterday. People look at me like I have taken some of the 'good' drugs LOL!
It's all about balance and compromise and having a good support network. Because of the nature of my job I have had to inform everyone of my problems simply because patients may be adversely affected, but to be honest I would advise all TN sufferers to tell people whether they work with them or not, those that are genuinely supportive will understand and help you out when necessary.
Re: the spelling, I have actually gone this post several times and found over 26 spelling mistakes, rectified of course, my English teacher from Grammar school would roll over in her grave if I didn't correct them LOLs!!
Best wishes.
Missed one!! 'Gone through.......' TUT!!
Hi Anna,
Sorry to hear of your condition. I too suffered from TN for 1.5 years before electing to go through mvd. Although your question was specifically for people who have gone through 2 procedures and I have not, I just want to share in case anything might help. My procedure was 4 months ago and although the pain was gone instantly after the procedure, my case got very complicated my recovery for upto 8 weeks after the procedure was full of suffering and complications. Headaches severe like I didn't know could happen, small pontine infarct / brain stroke caused by the surgery, fatigue, ghost pain that is not too bad but enough to cause anxiety and occasionally lose sleep, and complete loss in sensation on the tn side of my face because thet told me that during surgery they decided that mvd alone wasn't gong to fix my problem so they also did a partial rhizotomy. Now the face on that side feels dead / swollen and has a constant pulling / heavy feel. The surgeons say oh it will get better, it's only numbness which is better than pain! Sorry for being so lengthy but if I ever had this reoccur, I would try to live on meds for as long as I can.
trileptal is an anti-convulsant and it makes me sleepy and dizzy but I can think more clearly that using tegretol
I'm a LPN in a doctor's office. Thankfully I've got an understanding boss and coworkers. It's hard but like you, I can't idly sit and watch others do my job.
Best regards
God Bless You for telling your story. The same thing is happening to me minus the rhizotomy and stroke. I am having pain over the numb part. How you ask? It is called anethesia dolorosa. It sucks. I wish you the best that can possibly happen, dealing with this monster!