Wanting to know how long your mvd has lasted? I was told it could last 5 to 15 years....
There are some variables that affect how long the MVD will keep you pain free, as I understand. I am 8 months post MVD and look forward to the rest of my life being pain free. I have my life back and am happy!
could you share or know what some of the variables are?
Ayre, I understand that many many things come into play. The patients health/ situation, the surgeons experience. I am only a week and a half out of surgery. I felt relief immediately, some people don’t. I am very happy with my choice of doctors. I spent a lot of time researching. I feel that the MVD is the best for me, it doesn’t destroy the nerve, and can be repeated if necessary. Staying on drugs for the rest of my life is not an option, I wish I had done it last year. Read the book “striking back” by Drs Ken Casey and Peter Janetta . And look through the “recommended Dr” list on here. A knowledgeable Dr can really put things into perspective. Good luck.
I am sure there are other variables, but the first few as they apply to me are: who performs the surgery, at what institution it is done, is the compression due to a vein or artery, are multiple vessels causing the compression, how long have you had TN before the MVD, what is your overall general health. These are thoughts that come to my mind first. Now in my case, I am an extremely healthy 68 year old, I dealt with type 1 TN for about a year and a half. I was on Lyrica for about a year that controlled the pain somewhat but the side effects were unacceptable to me and I understood the ONLY way to correct the compressing artery was by having an MVD. (I am a retired open heart surgery RN, by the way.) I did all my research on this site and found Dr.Ben Carson @ Johns Hopkins Hospital in Baltimore was the man I wanted to do the surgery. I live in the Florida Keys and had to fly up for the consultation and then fly back up for the surgery and one follow up visit. I approached the surgery with a very positive attitude and a strong faith in God--I knew I would do great-and I did. I believe Dr.Carson has retired @ Hopkins but Dr.Lim is excellent & I think there are one or two other neurosurgeons there equally competent doing MVDs. Boston @ Mass General has a good program. Dr.Jeffery Brown in New York has excellent results. I still shudder when I think of the pain I experienced and also how the medication affected my life. I come to this site to read the stories of others and to offer encouragement when I can. You are in my thoughts and I know you will make the best decision--let me know, please.
I have had 2 MVD’s. the 1st lasted 3 1/2 years but was NOT pain free immediately. Found out later my surgeons specialty was not TN. I found the 2nd surgeon through the Facial Pain Assoc with the guidance from this site. Had immediate relief & 7 months still pain free:)
I do agree a skilled & knowledgeable surgeon is imperative. I too come to this site now to help & guide people to consider the surgery. The stats as I understand follow patients @ 10 years & after 4 the success goes down. To me the rewards outweigh the risks by Miles & the worst part of my recovery both times was nausea & that passes & drugs help. Hope this helps & good luck!
I also found the 2 nd hospital’s staff to be more knowledgeable & caring & sure it’s because of my surgeon a truly wonderful & caring man Dr Sanan in Tucson Az.
I have had my first attack nov 2009 it has been a roller coast of a ride with no one really telling me what i should expect I have researched and am reading the book by dr casey I live in michigan I have been to dr case's office but did not see him he had an emergency surgery so I am going back tomorrow to meet him I have both the tn 1 and atypical(tn 2) lately it has been just tn 1 I have read the surgery does not help tn 2 my mri showed nothing on the nerve but I have read that that does not mean there is an artery or blood vessel hitting the nerve or on it plus my mri was reviewed by someone other then dr casey and I have not been able to talk to hime about if he had a chance to review it
Hi Linda! I am getting my MVD done by Dr. Sanan in Tucson, AZ on July 8. I think he's great and I'm glad to hear you were so happy with him as well!
Linda Faye said:
I have had 2 MVD's. the 1st lasted 3 1/2 years but was NOT pain free immediately. Found out later my surgeons specialty was not TN. I found the 2nd surgeon through the Facial Pain Assoc with the guidance from this site. Had immediate relief & 7 months still pain free:)
I do agree a skilled & knowledgeable surgeon is imperative. I too come to this site now to help & guide people to consider the surgery. The stats as I understand follow patients @ 10 years & after 4 the success goes down. To me the rewards outweigh the risks by Miles & the worst part of my recovery both times was nausea & that passes & drugs help. Hope this helps & good luck!
I also found the 2 nd hospital's staff to be more knowledgeable & caring & sure it's because of my surgeon a truly wonderful & caring man Dr Sanan in Tucson Az.
Hey Ayre...I am seeing Dr. Casey on Tuesday...my first meeting got cancelled also because he had had to go to emergency surgery....
Good luck to you both as you see Dr.Casey. The book you refer to must be "Striking Back", is that right? I read it soon after my diagnosis and it helped me understand a lot about TN.
Thinking of you!
Yes thats the book…
Hi ! I just had my consult and MVD with Dr Casey, on the 11th and 12th. I must have been lucky, as he was also the on call trauma Dr. At the 2 Oakwood Hospitals. Everything went just fine. It’s worth rescheduling, he is fantastic! Good luck!!! Oh, I highly recommend the Biddle Brighton bed and breakfast. We were there 6 days, the innkeepers, Gerry and Vicki are really thoughtful, and his breakfasts are really great!
Ayre,
I have TN 2 & TN1 on left side and NO compressions were ever visible ( have had bilateral tn since 2002)
I’m 11 weeks post mvd, and NO TN pain.
Day before surgery my NS said, I doubt will find anything, but if there’s a compression, I’ll find it.
He found 2 small blood vessels on top and one large one underneath my nerve all compressing.
My TN was med resistant for a year prior to mvd. I took a leap of faith, researched, found the most skilled neurosurgeon ( which as others have said is vey important)
I’m pain free.
I wish you the same
(( hugs )) Mimi xx
Dr. Casey should be a great resource and give you a ton of information! I have heard nothing but good about him on here.
I am 8 months post MVD and 90% pain free. I have TN and ATN. I had/have the boring ear pain, horrible tooth pain and the lightning strikes all at the same time. I live in Newark Delaware and first had a glycerine rhizotomy at Johns Hopkins with Dr. Lim, then they referred me to Dr. Brown in Long Island NY because Hopkins doesnt like to do surgery for ATN
I loved Dr. Brown when I went for the consult, he spent close to 2 hours with me, reviewed every question I had and was just wonderful. He also has an average of 15 years for the surgery to last, so I really liked that number. I cant tolerate any of the meds, so surgery was the only option for me,and also , with my job, I drive a company car and could not take the narcotics or pain killers if I was working.
The only reason I have 90% pain free is I have another underlying autoimmune disorder of which I am waiting for insurance to give approval for treatment ($$$$) so its causing me to have some pain. The steroids I am on also seem to trigger some of the ear pain and lightning strikes but on a scale of 1-10 they are a 1, where before they were at "kill me now" levels.
I have been told that if the treatment is approved (IVIG) then my TN should go away, but at the point it is now, I could live with it.
Let us know how your consult goes
Wendy/crashgirl
I saw Dr. Casey yesterday...it was great!!!
Finally after 3 years meeting with someone who is knowledgeable AND seems to care about what I am going thru...
Explained everything in detail, and asked over and over any questions? Didn't seem rushed at all we talked for over an hour....totally opposite of my 3 previous neurologists who seemed too busy to care, or listen and just pushing meds.....
I think I want to get MVD with him but I'm scared as most probably are (never had any surgeries), and what messes with my mind is I had a year and a half remission and am on a 2 month remission...........I know the pain is going to come back but doesn't seem like I need surgery since I feel fine (other than meds making me feel blah)....but in reality it will come back just a matter of time when........
Anyone had a MVD while they were in a remission for a while?
he is awesome he made me feel so comfortable i am with you it is a big decision i know i should just do it im scared it wont work but the way i am looking at it if i had cancer i would try chemo/radiation even thought the chances are not 100 it cant make it any worse!!!
tunetokyo said:
I saw Dr. Casey yesterday...it was great!!!
Finally after 3 years meeting with someone who is knowledgeable AND seems to care about what I am going thru...
Explained everything in detail, and asked over and over any questions? Didn't seem rushed at all we talked for over an hour....totally opposite of my 3 previous neurologists who seemed too busy to care, or listen and just pushing meds.....
I think I want to get MVD with him but I'm scared as most probably are (never had any surgeries), and what messes with my mind is I had a year and a half remission and am on a 2 month remission...........I know the pain is going to come back but doesn't seem like I need surgery since I feel fine (other than meds making me feel blah)....but in reality it will come back just a matter of time when........
Anyone had a MVD while they were in a remission for a while?
But the tricky part is, cancer is fatal.....and TN isn't (even though it feels like it can be!)
I guess my theory is
you have to try and yes sometimes it feels like it life can be pretty bad:( And these meds are not healthy for you! My remission have not been very long a week here and there the first time it was gone for a year then 8 months the 5 months now I am lucky if stays settle for 2 weeks I really want to have the surgery but get scared of all the risks and reading all the failed mvd does not help. I need to put my "Big girl pants" and just do it!!!
tunetokyo said:
But the tricky part is, cancer is fatal.....and TN isn't (even though it feels like it can be!)
Yeah I need to man up too :/
So what are the highlights of what Dr. Casey said to you? Didn't he seem different than any other Dr. you've talked to about TN?
Tunetokyo and Ayre, I see you two are having a healthy discussion about your meeting with Dr.Casey and making plans for your management and probable future MVDs. I remember when I had my first conversations, via e mail, with Carol James, Dr. Ben Carson's P.A., I was reluctant to admit that having an MVD was my best choice. I kept hoping the TN would just go away. I remember her words, "Get your head out of the sand and deal with it." As you said Ayre, "Put on your Big Girl pants and do it." We all know the TN pain is not going to go away or get any better--it gets more frequent and it gets worse. You will make the right decision, at the right time. My thoughts are with you.