Just a question for all on how long you had TN symptoms before you had an MVD? I am certain that an MVD is the right thing for me. I have had my diagnosis of Type 1 TN confirmed by several specialist, including 2 neurosurgeons that have said I am an ideal candidate for the surgery but that after having symptoms for only 4 months, it is too soon to consider an MVD. I have chosen my neurosurgeon, as his qualifications are outstanding - a great "bedside manner", knowledge, and lots of experience doing this surgery with great success. He has agreed that he would do the surgery but not now.
I guess I just don't see the point of waiting any longer on these meds that have terrible side effects when I've already made up my mind for a solution to my TN.
Any experience with this or thoughts from our seasoned members?
Hi Mybell,
We all do what we feel is right for us. Do not be discouraged if some os us have had returing symptoms. I had MVD and for 6 momths I was better. If I was given as an option to redo, no hesitation, do it again. To have a chance of being without pain for me was worth the try. Each person is different. If you are ready and feel comfortable with your decision and your neurosurgeon then do not hesitate. There are great recovery stories from alot of folks here on website. Just browse thru discussions the most recent ones were. Mimi, Shindig, LoriB are a cew who just had MVD. Message them for their experience also. I am having MVD soon on the opposite side and feel very confident that this will help me. Good luck and go into with a positive attitude. Talk to the folks I mentioned for some feedback.
My Best
Joanne
I have had TN for 5 years before I underwent mvd surgery.
My medication stopped working and I was in horrible pain and then I started over medicating myself. It has only been 2 weeks since the surgery. I’m still healing. There is no Tn pain.
I wish I would of done this sooner, but I am afraid of surgery, but I was at the point where I couldn’t live with the pain. I think Iade the right choice. Good luck with the choice you make. I think the sooner the better. Why suffer for years? Just remember it’s a serious surgery and it’s not a piece of cake afterwards. But it’s all worth it in the end.
Good luck to you
Thanks to both Lisa and Joanne for your replies. I really appreciate your sharing your experiences. I have already decided 100% that I will have an MVD and honestly am anxious to have one ASAP. The problem is that the two neurosurgeons I saw told me that I HAVE to wait that it is too early to go to surgery now. I guess I just don't understand why I have to wait when I am 100% sure, have a confirmed TN type 1 diagnosis and have been told I am a perfect candidate for an MVD. I guess I don't think it matters much that I've only had symptoms for 4 months, I'm ready to have the surgery tomorrow. Was curious if anyone else encountered this with their doctors or if anyone else did have an MVD just months after diagnosis.
Hi Marcelle,
I started experiencing the classic shocking pain of TN1 in January 2012. I have had the burning, pressure pain of TN2 for years, but as I have a condition called a Chiari Maldormation, I attributed those pains to that,and never sought treatment. To make a long story short (I hope lol ) I got the TN in June of 2012. I started on Tegretol, but was allergic, so had to switch to Gabapentin. Unfortunately for me, I ramped up to 2400 mg of Gabapentin a day, and still had pain. My neurologist and I agreed that this was the maximum dose for me, and that this was the end of the medication route for me. On my own, I went to NY to one of the leading neurosurgeons for MVD in November, and had my surgery in January. I am happy I had it done, even though my pain is not completely gone. I know the nerve is still healing, so I have hope that I will continue us to improve.
I have read on this site that people wait years to have an MVD, mostly because of fear. I personally felt that since the first line medications were not helping me, surgery was my best option. I am glad you have decided to have the procedure, and I hope you continue to look for a surgeon who will work with you.
Best of luck!
Christine
Marcelle, I was reading that docs wanted you to wait to have MVD. I wish I had been diagnosed some 25 years ago when I spent a year in the most horrific pain in my life. I was not properly diagnosed until Sept 2011 after years of dentists, orthodontists,braces , invisalign, ENT specialists , neurologists, endodomtists you get the picture. I think would have had a better outcome with my surgery. I was diagnosed in Jan 2013 with TN on the right side my neurosurgeon booked me immediately for Feb 2013 had not postpone for bone infection. Meeting with my surgeon May 13 th rebook for surgery, cannot wait to rid myself of pain at least on right side and maybe will be ok with my meds on left. From what I have read over time they say if TN is diagnosed and you have surgery with a few years time frame you have better chance of excellent result. So for me its logical to go Proceed ahead and give myself a fighting chance to be pain free and try to have some sort of normalcy in my life. Right now there is nothing, negative life. So Marcelle its personal and if they say your a good canidate find a surgeon who will perform the surgery. Good for you, we are our only advocates.
I had pain for 10 years without a proper diagnosis. It was approximately last July/Aug that I was diagnosed. I saw the neurosurgeon in September and i had my MVD done in November. My neurologist didn't think surgery was the right option for me but pain management, the neurosurgeon and I did. I had tried so many medications (including the 3 that the NS requires his patients to try first) and therapies for so many years that I was willing to take the risk immediately. Thankfully the neurosurgeon agreed. My chances of having good results wasn't that great because I had been suffering for 10 years already, but in my case it worked out. I'm about to be 6 months post op and my TN and ATN is gone. I'm finally getting control over my life. I had 2 arteries compressing 3 cranial nerves (including the TN). The way we saw it was: the arteries are not going to unwrap themselves on their own and drugs aren't helping, why suffer longer when we finally know what the problem is? And again, that's what worked for me.
If it comes back and surgery is an option again I would do it immediately again.
Hi all , I had Mvd done over 3yrs ago now and my whole left side of my is still numb , and no doctor will help me and no one understand just what I go through every day.
I had MVD just 3 weeks ago after having TN for 11 yrs. I was diagnosed in 2002 at age 29 with bilateral TN.
I was VERY lucky to have an 8 year remission for my right side and 10 year remission for my left side.
The ONLY reason I chose to have the mvd surgery was because the Left side came back with a vengeance! It increasingly became worse and more frequent and didn’t respond to ANY medication and we tried many over the course of a year. I just turned 41 and since Nov. 2011 my quality of life had deteriorated. I’m on long term disability from a job I love, unable to drive due to side effects from the meds and pretty much home bound. And nothing worked to control my pain, nothing. I chose mvd because although it is invasive, it does not damage the nerve. I still hold out hope for a cure for TN in my lifetime and want my nerve intact to be able to benefit from a future cure to this horrid disease.
MVD is not a solution to TN, there are no guarantees.
MVD is a hope that pain will be reduced or eliminated for an extended period of time.
It’s so important that you read and research as much as you can before you make a decision.
I knew going into surgery that no compressions were visible on my mris, I also knew that there are/were no guarantees. 3 blood vessels were compressing my Trigeminal nerve. As I’m only 3 weeks into recovery it’s too early to tell if my surgery was successful. I can honestly say that I feel it has reduced my pain, in comparison to pre-mvd…
All this being said, choosing a procedure is a personal decision, one that should be made after much research and a few consultations with specialists who are top in their field.
I wish you well mybell.
(( hugs )) Mimi
I had TN for 3 years, managing quite well on meds, although was having increasing attacks and left on higher meds each attack. I never considered surgery due to the risks and I thought my pain was manageable. However last Xmas I had my worst attack with meds not touching me at all, and was also having facial spasms up to 10 times a day, each one up to a minute long, leaving me in tears. I couldn’t function on the meds (double vision and sleepiness) and went to my neuro who I had researched and chosen and told him I wanted the surgery ASAP. I was in hospital 5 days later for my MVD. This was in January. After the surgery i had no facial numbness at all, have only had a cople of twinges of TN pain while in hospital, but am still recovering…tenderness to scar, and I get little nerve twinges all over my head throughout the day. This is so bearable, considering what I went through prior to surgery!
It is best to have the surgery as early as possible. Even though you might be painfree on meds, there may still be compression of the nerve, which leads to permanent damage of the nerve, which MVD will not fix.
It’s a big decision, but you have to make the decision which is right for you. Good luck and I hope your neuro can give you a good reason why not to do the surgery yet!
Hi, I was told exactly the same thing and now 10 months on since I was diagnosed I had my MVD last Tuesday. My neurosurgeon advised that TN is only progressive and that the pain will get worse and the earlier you have it done the better chance of success. MVD is major brain surgery and should be carefully considered with the risks but I personally feel that most risks can be mitigated with a very good surgeon. I couldn’t cope with the severity of the pain and side effects of all the meds so MVD was the only solution I found to getting my life back
Best of luck. I will keep updating my discussion board re: MVD progress.
what if they did not see a compression on the nerve is mvd still successful? I have been having more tn1 but not constant my meds seem to still b working i may have 2 to 3 strikes a day some days more in the beginning it was tn2 have had remission it began in dec 2009 should i think mvd everything I read on here says that this is going to get worse....??? Any advice to appreciated!!!
Kc Dancer Kc said:
1 year 2 weeks -
my insurance (or Dr. Casy, not sure which)
only required that I tried 3 meds
and that the side effects were making my quality of life go in the trash!
only 2% intermitent pain type one / 1.5 years later
I was actually in a kind of remission when I went under - very low dose ---- if your surgeon is a REALLY TOP TN surgeon - follow them
..... I normally would stomp around here (ask anybody)
to get another doctor and don't be in pain one more day.
But you have to make those decisions. As long as you get MVD in first 1-3 years -- your rate of success with TN1 is high.
Ayre,
My mvd was on my left side which was predominantly TN2 and as it got worse the last few months, also TN1.
No compressions were ever seen on MRI. In fact surgeon prepared me by saying he didn’t think he would find any in his opinion. When he went in he found 3 compressions, 2 vessels on top 1 rather large vessel compressing from underneath the nerve.
I’m into week 4 post op so too early to say if successful BUT I feel it has improved so far.
Dr. Casey did not look for compressions on mri…most times cannot be seen…MRI was to rule out brain tumor etc… One tool dr Casey uses was. McGill pain scale… Google and print off…found two compressions once inside… Get his book… Striking Back…helps much…updated version would include higher success rates for mvd as of present time…yeah!
Read. Ask. Read ask
Learn all you can
It is progressive. It will get worse but nobody knows when…I am 50 and will probably have to do mvd again…someday
ayre said:
what if they did not see a compression on the nerve is mvd still successful? I have been having more tn1 but not constant my meds seem to still b working i may have 2 to 3 strikes a day some days more in the beginning it was tn2 have had remission it began in dec 2009 should i think mvd everything I read on here says that this is going to get worse....??? Any advice to appreciated!!!
Kc Dancer Kc said:
1 year 2 weeks -
my insurance (or Dr. Casy, not sure which)
only required that I tried 3 meds
and that the side effects were making my quality of life go in the trash!
only 2% intermitent pain type one / 1.5 years later
I was actually in a kind of remission when I went under - very low dose ---- if your surgeon is a REALLY TOP TN surgeon - follow them
..... I normally would stomp around here (ask anybody)
to get another doctor and don't be in pain one more day.
But you have to make those decisions. As long as you get MVD in first 1-3 years -- your rate of success with TN1 is high.
I had experienced symptoms for 3 months, than pain went away for 3 months. It came back with a vengeance in April 2009. I was diagnosed in early May and put on tegretol (allergic) and eventually baclofen and gabapentin. Three weeks later i was calling my neurologist asking for a referral to Mayo because meds weren’t working. Had consult in late June and back up for surgery 3 weeks later. So…all in all, 3 1/2 months after official diagnosis and “trying” the meds. MVD was the best thing I did…make sure your surgeon has ample experience. Seems like this surgery is somewhat of an art. I wish you the best of luck.
I'm not even sure where I read that, but this year sometime it came out that the More years that the nerve is pounded on - the more damage and the harder to reverse.
If pounded on or compressed by a blood vessel for 10 years
- harder to resolve with surgery than if in the first 3-7 years.
A new study that came out. There are very few studies on us!
ayre said:
Why is it important to have an mvd within the first 3 years of getting tn?
Kc Dancer Kc said:
1 year 2 weeks -
my insurance (or Dr. Casy, not sure which)
only required that I tried 3 meds
and that the side effects were making my quality of life go in the trash!
only 2% intermitent pain type one / 1.5 years later
I was actually in a kind of remission when I went under - very low dose ---- if your surgeon is a REALLY TOP TN surgeon - follow them
..... I normally would stomp around here (ask anybody)
to get another doctor and don't be in pain one more day.
But you have to make those decisions. As long as you get MVD in first 1-3 years -- your rate of success with TN1 is high.
Thanks! Thought I was crazy -- If I had a dollar for every hour I read on here --- I could retire! It all gets scrambled sometimes -- even though not on meds anymore!
Gen said:
That's correct KcDancer. That's what I have read, but it's also what my Neurosurgeon told me before and after my MVD this year. :-))