Posted , 16 users are following.
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?
1 like, 32 replies
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greg66242 anna43144
Posted
Thank you,
Greg
rsw greg66242
Posted
I'm from Vancouver, Canada
anna43144 greg66242
Posted
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.
rsw anna43144
Posted
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.
greg66242 anna43144
Posted
Hi Anna...I hope this you. On your MVD, is the side of the surgery down by the cheek line where the nerve runs, growing and looks like a squirrel storing nuts for the winter? If so, I have the same thing happening, and my Neurosurgeon said at the time that he doesn't notice a thing. I am no longer A symmetrical on the face.
God Bless,
Greg
susan33651 anna43144
Posted
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.
susan33651
Posted
Missed one!! 'Gone through.......' TUT!!
Sarah32571 susan33651
Posted
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
saaz79347 anna43144
Posted
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.
greg66242 saaz79347
Posted
susan70485 anna43144
Posted
CassieR anna43144
Posted
I was just wondering if you are going to be having a second MVD done? I have TN, ATN and ATFP for almost five years and it is so sever nothing touches the pain. I have had over 100 botox injections in a 3 month spand. nerve blocks, branch blocks and even tried medical marijuana. I have had MVD which went into remission for 2 weeks but pain slowly came back and spread everywhere on the left side of my head face and neck. I have seen 18 doctors for this disease. This new sergeon wants me to do gamma knife radiosurgery. I was hoping they would go back in my head and undo what the first surgeon did. I guess the other did things he was not suppose to and due to that caused the pain to spread. This new guy said that he can not do a second MVD. He was saying there would be to much scare tissue and it could cut the nerve completely. The gamma knife worries me cause of my medical history. There was another surgeon who set it up twice but canceled it both times. Now this guy wants to do it. I was wondering about advice from someone else
colin04561 CassieR
Posted
I'm curious as well...
CassieR colin04561
Posted
So the surgeon has high hopes this will work. He said do to the other surgeon wrapping nerves he should not have will make the surgery a little more difficult. They have have to use a stronger radiation treatment to get through the tefflon. It will make me sleepy for even 6 weeks after the surgery, may make me very sick and may lose a small amount of hair. He also said it could make it worse. I asked what would happen if it did, but said we won't go there yet. I am going to Dartmouth Hitchcock and they do this all the time with great success results. I have had this for 5 years now I am ready for a break already.
teresa_62871 anna43144
Posted
I have just had my first MVD surgery having suffered with TN for 10 years and getting to the stage where I was on the maximum dose of both Carbamazepine and Gabapentin, which was literally doing my head in and making me totally ineffective at work (I am an accountant). This is now 12 days post surgery and I am totally pain free, but of course I am having to gradually reduce the Meds to avoid problems.
i do however still have numbness on the surgery side of my face which goes all the way round my skull. This also affects the inside of my mouth and my tongue, which I keep unknowingly biting. I have lost sensation in my eye also and need to keep checking that I have nothing in it.
I am a relatively fit and active 58 year old, and have started to take walks each day to very gradually increase my fitness, but am suffering from headaches, which I have never suffered from in the past. It has also very much increased the volume of my tinnitus in that ear, and reduced the volume of my hearing.
My follow up appointment with my surgeon has been set for December, which I have queried as there are questions I need answering now.
I have read some of the posts, some of which seem to be historical. Does anyone have any hope they can offer me, as I really need to get back to work, and at the moment I (who has not had a day off sick from work in 35 years) don't feel I would be able to cope.
wavedancer teresa_62871
Posted
Hi Teresa,
I had my MVD 6 months ago. I found I had mild headaches, funny noises in my ear like popping and hissing and some numbness and tingling on the side that had been operated on after surgery, and floaters in my eye but they disappeared over time. They were more of an inconvenience than lasting problems though. I was told that it was just part of the healing process. I found I got tired quickly for the first 6 weeks. I still have an odd pain on the side that was operated on. It feels like it's tight, but compared to the TN pain it's nothing. I know which I'd rather have! I hope you find once you're off the meds and the site of the surgery has had time to heal the problems you are having now will disappear. However if you feel the problems you are having are getting worse, or aren't going away I would suggest trying to talk to your surgeon or try to get an earlier appointment.