MVD Surgery Scheduled
Posted , 12 users are following.
I have been suffering from TN for 5 years. The medicine is just about useless at this point so I finally met with a neurosurgeon and he's agreed to do the MVD surgery. He wasn't thrilled about operating on a 24 year old but I haven't eaten in almost 4 days so it's pretty bad. I'm not sure it's ever been as bad as it is right now. Has anyone else had this surgery done? How was your results and what was the recovery time like? I'm so nervous to have this done. He said there is an 80% chance that it'll work and he's done well over 100 of these surgeries. I'm so worried he's going to open me up and not find anything on that nerve. I'm not sure what I'll do if the surgery doesn't work. It's one of my last options. I just need some advice from fellow people with TN. Thanks for any helpful advice!
1 like, 63 replies
marlene36342 hsisk24
Posted
Hi hsik - My name is Marlene and I had MVD surgery in 2009. Unfortunately, my surgery was unsuccessful. I do know of three people who had this surgery and are now living pain-free lives. Before I had the surgery, my surgeon told me that the surgery may not be able to reveal anything wrong. But this does not cancel out the pain issues I was having. While in surgery, all my blood vessels in my right jaw area were all co-mingled and had to be straightened out. Also, I had a blood vessel that grew up to my trigeminal nerve and was chocking it off. After surgery whan I was told this I was so happy because at times I would think that it was all in my head but still knowing the pain is real. If you have anymore specific questions, I would be more than happy to answer. Because the surgery was unsuccessful I am now on permanent disability but please know that each and every patient 's outcome is not the same. My very best wishes to you.
laurel3865 hsisk24
Posted
Hi,
I also had 2 failed MVD's. I'm not sure if I called it failed...it got rid of my electric shock pain, but left me with even more severe pain which is constant 24/7 burning and squeezing pain like my face is in a vice grip 24/7 for the past 3 years. I also have severe involuntary movement of facial nerve twisting, spinning and pulling in my mouth, lips, face and head. This is very painful and it does not stop moving. I had to quit a very well paying job because I cannot sleep nor focus due to this horrendous 24/7 madness. I also had to go on disability. It has been a very tough road. I have exhausted all medical professionals in Houston, Tx and no one can help me. I also have traveled to Pittsburgh to see Dr. Raymond Sekula and to California to see Dr. Mark Linskey. Neither one can help me. I was told my several top notch neurosurgeons that my nerve was damaged from the MVD and as a result I am experiencing these weird sensations and constant pain. I was diagnosed as having trigeminal deafferentation pain by Dr. Mark Linskey. I've also contacted the Mayo Clinic in MN two years in a row requesting for a consultation but they turned me down both years saying they have never heard of this condition and they don't think they can help. I am not trying to scare you because I do know MVD has helped so many people. I do suggest you get a consult with one of the best neurosurgeons who trained under Dr. Janetta who pioneered the MVD. Dr. Mark Linskey in California is one of the best neurosurgeons for MVD because he has performed so many. He also has done many redo MVD's. I was super upset when he couldn't help me. I know money can be a factor when we have to travel out of state, but I've learned the hard way. I chose, who I thought was one of the best neurosurgeons in Houston, and he totally screwed my life up...not once, but twice (same neurosurgeon who did both of my MVD's). Good luck to you.
marlene36342 laurel3865
Posted
Hi Laurel - I just read one of your posts where you mentioned you had two failed MVD's. I had my MVD surgery in 2009 and unfortunately, the surgery was not successful. Over the past 2 - 3 years my pain levels have increased so much that my social life is now down to about 20%. Have you ever thought of gamma knife. I have read some successful reports about this and plan to speak with my family physician to get her input. Along with the good reports there was also negative reports. I even thought of a second MVD. I am at my wit's end - really seeking a procedure which will help me. I have always been a fighter with TN but that fight is now leaving me. I am so very sorry for your outcome. I wish you the very best.
maryam20950 laurel3865
Posted
Hi Laurel, I am sorry the surgery did not work for you. I had two MVD on 1996, 21. and my surgeon was the best at that time and he was very famous unfortunately he told me, " you will be fined 99% and after two weeks, the weakness goes away". but it did not happen. After 24 hours my pain increased and it was killing me and my surgeon came to me and again told me "if you want to feel better, we should do the second MVD." At that time because I had so much pain, I DESPERATELY LOOKING FOR SOME RELIEF AND I TRUSTED HIM AND LISTEN TO HIM, HE SAID:" I AM SURE YOU WILL BE FINE AFTER THE SECOND MVD". I wished always time came back to 1996, but it's too late.
I had visited one of the top neurosurgeon, he said:, I can not to have 3rd one if I do it, I will die.
Now, I feel very miserable and have so much pain.
I do not know about you but I was told that " no Gamma, and radio frequency."
I am desperate, looking for some things that help me out.and research it, that gamma is not going to be helpful at all when you had two MVD.
marlene36342 maryam20950
Posted
Hi maryann - we previously had corresponded. I did mention that my MVD was not successful and have been seriously thinking about gamma knife. If you don't mind, I would like to know how you felt after the gamma knife. Did you experience any more side effects? I am seeing my family physician soon and would like to being this procedure to her. Any details you can give me will surely be appreciated. Thank you for reading.
maryam20950 marlene36342
Posted
Hi, Marlene, after my two MVD that I HAD AND I've got Paralysis on the right side, and my TN'S PAIN, increased very bad, and miserable, I CAN NOT DESCRIBE HOW THE PAIN WAS BAD, anyway, after all these problems, It's long story HOW I suffered all year after that, may be another time I will tell you. but about Gamma Knife and also radio frequency, even though, my neurologist told me," I have doubt that the Gamma knife helps you but you can give it try." and he was right it did not help me. because as I understand when we do MVD, not once but twice, not of them helping us.
One of the Neurosurgeon, that I had an appointment, he said;" In MVD, the nerve is being touched enough and the damage is been done, and expect Gamma knife and radio frequency work."
and the side effect was more pain, I mean in a different way, like electric sharp pain every few min, and last for 24 hours and then stop for few days, and each time is hurting me very badly.
That's all I can say. BEST WISHES FOR YOU.
maryam20950 hsisk24
Posted
Hi, hsisk 24 , my name is maryam, I have TN over 21 years, since 1996. I got TN after dental procedure. As of now, I have severe pain, actually I can tell worst and horrible pain, is constant, and ever be with out pain.
I had this stupid surgery that you want to do it and it was wrong, sometimes, some days, I am thinking I wish it was April 1996, AND MY LEG WAS BROKEN AND I DID NOT GO OVER THIS STUPID SURGERY. I read your note, and I've got very nerves because I do not want another person do the same mistake that I've done.
Believe me, in case if you do surgery, when you wake up, you always regret that, why you have done this surgery.
All the Neurosurgeons say the same thing, "nothing goes wrong, that's easy surgery when you wake, is going to be a little bit weakness, but after two weeks you will be back to the normal."
Listen, HSISK24, I DO NOT KNOW WHICH SIDE, YOU HAVE TN, ( RIGHT OR LEFT) BUT IF IS ON YOUR RIGHT SIDE YOUR WEAKNESS IS GOING TO BE ON THE LEFT SIDE OR THE OTHER WAY AROUND.
AND let me explain it more for you, Trigeminal neuralgia is going to happen, in few different ways,
1: AFTER DENTAL PROCEDURE, ( MOSTLY)
2: AFTER SINUS SURGERY
finally, happen with out any reason. but as your information, this Nerve in the face is the 3rd and important nerve in your body, especially its role in the face is really important, also has a lot of BRANCHES of the blood vessels and from this nerve, a lot branches of small nerve goes under your eye, ear and lip, Jaw, then when the Neurosurgeon works on that, he has to touch most of the branches, when the nerve is been touch,
be sure, it never ever is the same as that it was before because it's been touch.
Like, when breaking a glass, you try to glue it as it was before, even you are the best person to fix a broken glass.
So, based on the Marlene36342 speak, that she said her surgeon was not a good surgeon, I should have to TELL you and let you know, it does not matter, the surgeon is whether good or bad. This surgery and TN are very complicated.
Please, I AM BEGGING "DO NOT DO THE SURGERY, DO NOT THINK IS GOING TO BE LIKE MAGIC, AND WHEN YOU WEAK UP YOU WILL BE FINE, DO NOT LET ANY ONE TOUCH THE NERVE".
.Try to control your pain with right medication with right Doctor.
I am going to give some advice that helps you out that you can control your pain and tolerable.but do not do the surgery. Forget about the Neurosurgeon, any kind.
First, you do some research that you go to the pain clinic. The pain CLINIC HAVE SOME DOCTOR WHOME ARE SPECIALIST TO WORK WITH PAIN AND CONTROL ANY KIND OF THE PAIN.
But before you to that office do some research as of told you before, you can do it over the internet.
The Doctor you want to work with him in the pain clinic, you look at his reviews on his profile over the internet.
I mean, choose a couple of them, a couple of the best Doctors in the pain clinic, see and search how many patients he had over his practice, is he caring and understanding Doctor, and how many years he has experience and he is being Doctor. ( you know what my meant is).
I do not know what Medication, you are on right now, but as usual, in a first place they put, all the patients with TN, ON THE Carbamazepine, up to 1200mg, a day, or Ultram ( Tramadol). After few months your pain is being out of control and you should change the medication or you think the surgery is going to be the best option but is not.
The best Medication and safe one are Neurontin or( Gabapentin), and Baclofen together.
or LYRICA AND BACLOFEN TOGETHER THESE MEDICATIONS ARE THE BEST AND SAFE.
The other option is Narcotic medication, like Oxycontin or Mscontin or Morphine as a pill.
but first, go to the pain clinic and see what they are saying. I can not tell you what is good for you or what is bad, and listen to your body,
the other suggestion does exercise when you do that increase your blood flow, and you feel your pain less. go to the pool and swim. and GOOD LUCK.
hsisk24 maryam20950
Posted
I appreciate your honestly. However, just because yours was a total fail doesn't mean mine will be. The neurosurgeon I have chosen is the only person around my area who does these and he's done 100s. He was very honest with me about what could happen and go wrong during surgery. I am on tegretol (carbamazepine) 1400mg/day, baclofen 40mg/day, lyrica 450mg/day, gabapentin 1800mg/day, and oxycodone. I've also had tremadol and hydrocodone. Nothing works for me. Nothing. Tegretol worked for a really long time but there comes a point when your body and this condition becomes medication resistant. When that happens you can't really do anything besides surgery. My neurologist agreed that at this point in my diagnosis surgery is the best option. I have done extensive research on the MVD surgery. I'm not naive, I know things can go wrong during any kind of surgery. I'm a nursing student so trust me I understand this. I haven't talked or eaten in over 4 days and living like this isn't an option for me. I have 2 small children I have to raise and I feel I have an obligation to them and to myself to at least try and get better. Like I said, just because it was a complete disaster for you doesn't mean it will be for me. I would appreciate if you didn't tell me what to do with my life. The surgery scares me but living with this pain forever like this scares me a heck of a lot more.
marlene36342 maryam20950
Posted
maryam20950 marlene36342
Posted
Hi every body in TN Group, when I had this surgery 20 years ago my surgeon was the best and very famous also I had this surgery in one of the best hospitals in the US, but, unfortunately, the surgery was unsuccessful that I was told by my surgeon," is easy surgery and you are going to be fine after the surgery and your weakness will go away after two weeks."
I never ever forget his words, especially he gave me 99% successful chance, if he told me 50/50, the same as our friend, I never done that.GOOD LUCK TO ALL.
also i never ever done the surgery. good luck to all.
marlene36342 maryam20950
Posted
Hi maryam - you have me very confused here. your last sentence - "also I never ever done the surgery". During my surgery, there were problems with blood vessels and the trigeminal nerve itself and my brain stem. Much work had to be done to make these repairs. I do not regret the surgery because I now know "things are in place." My very best wishes.
maryam20950 marlene36342
Posted
ignore that, please.
and I am glad this surgery worked for you.
best wishes for all of you.
wavedancer hsisk24
Posted
Hi, I had this operation in February. Like you I'd had pain for a long while and the me weren't helping. I had an MIR scan and it showed quite clearly the blood vessel strangling the nerve. I don't know if you can look back on these posts or not but trust me I was terrified. The operation was a success. I couldn't believe the difference it made. I got my life back. I'm still pain free. If the pain comes back I wouldn't hesitate to have it done again.
As for recovery time I think it depends on the person. I was pain free immediately. I tended to get tired quicker for the first month or so but that was really the only thing I remember. The only drawback was that I couldn't fly for 3 months. It would have been great to have had a holiday! I'm much older than you and have other neurological problems that affect my everyday life, so I expect my recovery time would be longer than yours. I've heard of others going back to work after a few days. The normal stay in the hospital I had my op done in was 48 hours.
I hope that helps. Don't hesitate to ask questions or talk about the operation. There's always someone that has been through it and understands how you're feeling. Take care.
hsisk24 wavedancer
Posted
Finally a success story! I'm just about desperate so I will try anything at this moment. My neurosurgeon was very honest and clear about what could happen. He said there was an 80% success rate. The other 20% of the time he said he's gone in there and nothing has been wrong to fix. Sometimes you just have to believe it's going to work you know? I'm not too hopeful just because I can't imagine a life with no pain but I'm going to try my hardest that's for sure. I'm so happy for you and that your surgery worked! I know how hard this pain is to deal with so I really am so happy it worked for you!
wavedancer hsisk24
Posted
It is a major op and like any op it carries risks. I was given the same statistics but like you I was desperate. The thought of living with debilitating pain wasn't an option. I remember waking up and slapping my face and the nurses said I was asking where the elephant that was stomping on it had gone!
I think the lack of 'positive' replies to your post is because when we are suffering we need to ask questions and know that that there are people here that understand. Once you've had 'positive' surgery or treatment you don't need the forum as much so you tend to not check in as often.
Have you got a date for your surgery? Have you had a MRI?
Take care.
hsisk24 wavedancer
Posted
Oh yes I am more than desperate. I'm taking so much medication a day I can barely function. So I am so desperate. I didn't think about that being the reason I'm having so many negative replies but that does make sense. I'm just glad I've finally found someone with a success story lol. I'm not sure how I'll react when I wake up lol. Originally they had scheduled but for August 22nd but we are attempting to get that moved to August 11th. As long as the doctors send in the correct paper work tomorrow morning the insurance company said they would approve it for that date. I hope it's earlier rather than later. I've had 2 MRI's and 1 MRA. All came back normal which is good because I don't have a tumor or anything but bad because what if he gets in there and doesn't see anything wrong? That's my biggest fear!
gill32586 hsisk24
Posted
Hello There, I've ben following your story and looking back at the posts,I realise you must be terrified! Please remember that only the people who have not been lucky enough to have a complete cure are likely to stay with the forum. It's common sense to realise that once support is no longer needed, any former sufferer is likely to just get on and enjoy life. I hope and pray you will be in this category after your MVD. I have had T.N really long term ( 20+ years of suffering) and now considered to be not a good candidate for the op, but I do wish I had taken the chance and had it years ago.
As I understand , there are variable results but in the main it is a success. I have a good friend who had this years ago and has been completely pain-free since.
I wish you the greatest of luck, Please do come back and let us know. There are so many following your story.. Gill
hsisk24 gill32586
Posted
Hello!! Yes I am 100% terrified. I never thought about it like that (as far as people who have a successful operation end up not needing the site anymore) that makes total sense though. I can't imagine having this awful pain for 20 years. I've only had it 5 years and I'm totally over it. Is there a reason you decided not to have the surgery? I feel like I'm out of options and this is the next thing to do. I have heard of a ton of success stories, just not particularly from this forum! I will absolutely come back and let everyone know how it goes. I enjoy talking to people who understand what I'm going through. My family tries but no one truly understands this unless they have it. Fingers crossed my surgery works!!
gill32586 hsisk24
Posted
Hello Again and thamks for your fast response. You really need support at this time and I realise how you feel when you're waiting for your op. Each day seems a lifetime and it's your first thought in the morning and your last before you go to sleep. However,there's just a few daysand your surgery will be over and lets hope you can get on with your life. Remember that many people have done this and you have a really good chance that this is likely to happen in your case too.
You ask why I didn't go ahead when I was younger. The only reason was that my neurologist takes such a long time before his appts are met and when I did finally see him he kept changing or increasing medication and eventually offering themocoagulation. I have had four of these under anaesthetic, each one years apart and each one offering partial success. Meds were tried again and it just got too late. Take note and don't delay as I have done.while you're young. You need to enjoy your life and your family.
I'll be praying for your success and the power of prayer is a wonderful thing.
Love to you, Gill
hsisk24 gill32586
Posted
You are so right about needing support! I'm not sure what I would do without my family or this site. Everyone has been so nice. I really hope this surgery works. I've never had surgery so I'm really scared about everything! I had no idea they could do that kind of procedure for TN. I understand why you waited. Surgery is no joke. I've thought about not doing it but like you said I don't want it to get too late to the point to where I can't do surgery. I appreciate your prayers! I need all the prayers I can get!
Thank you so much
Hailey
gill32586 hsisk24
Posted
Hello Again Sweetheart,
I just wish I could take away your fear. You've made a big decision considering how scared you are but I do feel it's the right one. After all you know it's the most effective way that you can help yourself and you've taken that brave step forward. Now, I'm going to say something which you can either dismiss ot take on board.
I'm certainly no Bible-puncher nor religious fanatic and I attend a perfectly ordinary church but I really want you to think about this. Believer or not we often say in moments of extreme or fear 'God help me'. I think that is an instinct inherent in most of us when there is nowhere else to turn, but I believe it is there for a reason. I will be praying for the success of your op but maybe, on the day, you could also pray for calm and peace. It always helps me. You'll take someone into the theatre with you who knows your suffering.so you're not on your own. I say this because not matter how close our family, I know we still feel completely alone when we face something that scares us so much..
With Love , Gill
marlene36342 gill32586
Posted
hsisk24 gill32586
Posted
You are one of the sweetest people I have ever come in contact with. You truly are a good and caring person. I also believe in God. I don't go to church as I should but I believe He exists. I have to believe it. I am terrified of that surgery but I'm going to do my best to give my fears to Him. I appreciate your responses to me so much!
Love,
Hailey
wavedancer hsisk24
Posted
Fingers crossed for the 11th! However even if you have to wait until the 22nd it's only a little while and after having the pain for so long it is only a short time in comparison. I know i was really desperate and I was told my op would be early in the new year year. I expected it to be in January and when I got a letter saying it would be the middle of February I was so disappointed. Let us know when you hear when it will be.
Try to stay positive. It's only natural to worry about what the surgeon will see once he's in there, even more so if the scans have come back normal. However the pain has to be caused by something and its good that they have ruled out a tumour and other serious problems. I truly hope that this op will take away all of the severe pain you're suffering and that you can start to enjoy life once more like everyone else your age. Please let us know how you are doing. You are in many people's thoughts. Huge hugs xx
hsisk24 wavedancer
Posted
It got scheduled for the 22nd. I was okay with that though because I don't think I'm mentally ready for brain surgery yet! And the past several days have been good days so that's another reason I'm okay with it. I said the same thing about I've already waited this long. What's a few more days? I was terrified when they told me the MRI was used for ruling out a tumor. I've always had really bad headaches so I was worried about that. So I was relieved when everything came back normal but also frustrated because I still didn't know what was causing my pain. I'm too young to be feeling like crap all the time so I'm ready to get my life back. I feel like such a crappy mom sometimes because I never feel like doing anything. The other day my daughter wanted me to read her a story but I couldn't because the pain in my jaw was so bad and I just broke down. So I really hope this surgery works. My kids need their mom back and my husband needs his wife back! Thank you so much for all of your kind words!
gill32586 marlene36342
Posted
Hi Marlene. not sure I deserve that but thank you and the let me send you also my love. I've learned that you have been a great support to many on this forum and it really shows your true character. We know what everyone is suffering and just can't help trying to do anything at all that we can. I pray for all those with T.N., especially those like hsisk24 who are so bewildered and frightned, and also we must remember those in countries where no help is available. I know you are with me.
Best love, Gill
gill32586 hsisk24
Posted
Hello again Hailey and thank you for such a kind reply. I'm just out of 4 days in hospital with broken arm and other complications, so frustrated that it's made typing so difficult and can't reply as I would wish but be sure that I will before 22nd. Your young life has been so bllighted that I could weep for you but. hold it together for now sweetheart. I'll be in touch later. Love and prayers Gill xx
gill32586 hsisk24
Posted
Hello Hailey, I haven't forgotten you , my darling. I'm finding a it a bit difficult to type as i broke my arm just over 2 weeks ago. I'm praying and will continue to pray for you. Just concentrate on what I told you and remember that you are not entering that surgery alone. The power of prayer is a wonderful thing and I am certain that our prayers answered recently when my first grandchildren ,twins, were born 4 months early and are now beautiful, healthy babies, against all odds.
My love to you and my thoughts will be with you all the way.xx
catherine_81712 wavedancer
Posted
Thank you.