Hi I’ve been very kindly directed to you guys here for some advice. A basic history. My name is Sarah and I’m 28 (nearly)! I have a 7 month old daughter and have suffered with TN for 10 years 
I have had steroid injections (which no way worked) and been on tegretol for the past 2 years. (Stopped when I was pregnant) since having my daughter teg has made the side effects hard to deal with. My consultant has terrified me with the possible side effects of MVD but has suggested it. He doesn’t want to do other therapies that would completely numb my face because of my age. I’m just looking for advice from you lovely people who have this horrible condition and who has had the surgery and how we’re you afterwards? Any side effects? How long was recovery? How long were you off work etc? I’m sorry for the long post and lots of questions I’ve not stopped crying since the consultation
Mvd will leave your face numb any way , my be face has been numb
For 4yrs now ,and it painful and very hard but not as hard as tn
I was told its a possibility it would go numb? Is it a definite then? This is why it’s amazing to have these forums to discuss these things isn’t it, thank you for your reply
One piece of advice to you, Sarah85, is if you go ahead and have the MVD (as many have had, and many successfully), then do find out about your surgeon, find a neurosurgeon who is VERY experienced SPECIFICALLY in performing MVD on TN patients - ask to speak to his/her patients if possible, research the surgeon well so that you have confidence in them. Above all, do not allow an inexperienced surgeon to perform this operation on you. Also understand the possible risks involved. Some numbness of the face after MVD is not unusual, and in many cases it wears off in the months after it - many would argue, including myself, that it's preferable to the pain of TN and the long term prospects of using various drugs. Personally I found that the fear of MVD is worse than the reality of the surgery - you can be up and about within a few days after it, or it could take you much longer - i think every case is unique. It is a big decision and deserves your research efforts, because only you can make the decision. Best of luck, you've come to the right place to start. I have had two MVDs (after the first one I was pain free and off all drugs for nearly 8 years) and I don't regret either.
For got to am drug free now have been for a year
Sarah85 said:
I was told its a possibility it would go numb? Is it a definite then? This is why it’s amazing to have these forums to discuss these things isn’t it, thank you for your reply
It’s such a hard decision isn’t it. thank you for your replies. My consultant told me its 3 days intensive care and out of hospital around a week after?
Your consultant is correct, that seems to be the average hospital stay, although I was out of intensive care the first day, and out of hospital and home after 3 days, then back after a couple of weeks just for a quick final check up with the neuro - who wants to make sure your scar is healing cleanly and there's no leaking of any kind. You may have a few headaches post op, treatable just with normal headache med. Personally I found that any minor post op issues (like slight facial numbness, few headaches, itchiness of the scar whilst healing etc, cleared up on their own in the days and weeks and months following surgery. It IS a hard decision, but for me there was nothing more fearful or worse than living with the pain.
It has now been 9 months since my MVD. I am totally free of the TN pain which I had for less than a year before having the surgery. The drugs were unbearable for me. I am now 68 and wanted to have the MVD while still healthy. I have no facial numbness nor any other residual effects. Good luck to you! And please, find the best surgeon!
I have had TN for 8 months and am scheduled to have an MVD on Oct. 30th. I decided early on that I would not live on medicine and researched like crazy. I know that MVD is the right choice for me. It is the most invasive but has the best odds for long term success. I agree about choosing a neurosurgeon wisely. I consulted with 3 before landing on Dr. Ken Casey in Michigan. He wrote the book that many have read and does MVD surgeries often and for many, many years. I also found that his stats on side effects from surgery are much lower than the other 2 surgeons I saw. Do the research, consult with several neurosurgeons (even if you haven't made the decision for MVD) and then choose what is right for you. I've had TN for only a short time compared to many others but I feel like it's taken part of my life away and I want it back.
Thank you so so much for all your replies really interesting to read and hear your experiences.
Hi Sarah, it is not common for numbness after an MVD. I am 10 days post 2nd MVD with no numbness, droopy face, etc. They key is researching neurosurgeons and selecting one that has a lot of experience with TN specifically. For example, my neurosurgeon does 3 MVD’s per week. Also, he’s the guy that see’s patients where their 1st MVD’s have failed and/or caused other issues.
I was diagnosed in 1997 when I was 37. I was referred by my neurologist to a very kind elderly neurosurgeon (he never did a MVD). I had a rhizotomy proceedure and I was pain free for 6 years. My surgeon mentioned MVD but I didn’t want to even consider it - I had 6 and 4 year old kids and there was not enough info on the internet as there is today. Looking back, I wish that I would have researched it and had one before the 2 rhizotomy proceedures as it has the best success rate done early and prior to other proceedures. The 2nd one resolved the pain in the 3rd branch but not in the 2nd. In fact, I was terrified the first three weeks because the nubness in the 3rd brach was so painful luckly, the pain diminished.
I know it’s scary thinking about the surgery especially when we have young children to consider. However, if you have a great surgeon (not just a kind one) you have the best opportunity to spend more quality time with your family.
When I made the decision to have MVD surgery in 2007, I was taking 1800mg of tegretol! I did my research and found a very well known surgeon at UCSF. He said he found 1 vein compressing on my nerve. Unfortunately, it didn’t relieve the pain. I was back to tegretol but at lower level then prior to the surgery. I was taking 800 mg of tegretol for a few years then the pain increased and so did my tegretol levels. It was a cycle of stepping down for a while then back up again to a manageble level. This was a normal cycle for me. I consulted with surgeons from Stanford and UCSF. I was confident that if anyone could fix this, the surgeon at UCSF (trained under my 1st Dr.) could. He said he took out the teflon pad and replaced it with a few others. He doesn’t think a compression was causing my TN. He said the success of the surgery would be 50% due to the fact that I already had a failed MVD. He suggested that if he didn’t find a compression he would do another rhitzotomy while he’s in there as I had success with it before. My surgeon did the rhitzotomy. Even with a 50% chance of success, I had to go for it or else I would have always wondered about it.
Side note: I inquired about Cyber Knife and Gamma Knife procedures and my surgeon said that they have both technologies at UCSF however, they are not used for TN because it is not precise enough (for TN) and it causes too much damage to the nerves usually resulting in the painfull numbness AD.
This time around, my kids are taking care of me before they head off to college!
If you have any questions about the surgery, I would be happy to talk with you.
All my best, Jeanette
Sorry me again just u to understand if went back
I would still make the same choice to have Mvd ,
As some people seem to be making sound it easy
All of us r different , I don’t scare u but no matter
What happen with your Mvd it will always be better
Than living with tn. My doctors tell an only in the world
That has complete numbs and had to have 4 blood vessel
Remove in a 13hrs op but am still living and working full time ,
So u have nothing lose only gain. I know said life is hard sometime
But I have life now.xxx never look back
http://www.livingwithtn.org/group/mvds/forum/topics/my-experience-w…
The above link shares my journey with TN and my recent MVD.
I had no complications whatsoever.
My MVD was 5 months ago. None of my mris ever showed any compressions. After my 3 hour MVD my NS explained I had 3 compressions!
I was in intense pain everyday, on 3 high dose meds with no relief prior to MVD…my pain was progressing everyday, it was a living nightmare. I still don’t know how I survived…
I am now off 2 out of 3 meds, no pain and hopeful .
I would do it again in a heartbeat.
I cannot stress enough how important it is to have an experienced neurosurgeon who performs many mvds and knows TN.
I flew to another province to have my MVD with one of the best in North America.
(( hugs )) Mimi
Hi Sarah,
Yes, this forum is a lifesaver! Full of information and support.
I am 40, type 1 TN for 5 years, medicated for 3, with the last year ramping up to unbearable levels.
My local Neuro Dr.would have followed the standard- medicate and deal with it for the rest if my life.
I read the book by George Weigel and Dr Ken Casey. “Striking Back- TN Handbook”. I decided to seek out the most experienced Neurosurgeon that I could find, and see if I was a candidate for MVD. During that process, one of our forum friends suggested Dr Casey.
The MVD: even though my MRI was clean, he saw the compression right away. I had 2 compressions, nerve had turned grey, and the relief was instant. I was out of the ICU the next day. I took 2 Advil for pain for about 4 weeks. A few weeks of a stiff neck, no lifting, and taking it easy.
No meds, 2 months and counting. Side effects now: a bit of numbness on the top of my ear, and numb sensations on my lips and chin, that seem to be improving each week. Scar is 3", hidden in my hair, aches from time to time, not bad at all. I took 8 weeks off work, could have gone back at 5-6weeks, but didn’t want to pressure myself.
It is definitely a personal decision, you have to be mentally ready. I used the “recommend dr” tab on this forum, there are many great doctors. It was such a breath of fresh air to speak to a Dr that had more answers than questions!
I feel that in the right hands, the MVD really is our best chance at fixing the problem.
I am thankful for each day that I can eat, smile, kiss my Hubby and kids! If I have 5 months or 5 years or more, I take each one as a gift!
Feel free to check out my conversation threads, or send me a MSG if you have any questions.
Tiffanie
I can’t thank you all enoh for sharing your thoughts and stories this place is truly a god send for me. I’m so scared that something will happen and I can’t give my daughter 100%. It’s hard to talk to friends and family as they don’t understand it truly but you guys do. X