Mvd not recommended for atypicals

According to the latest information (that unfortunately a lot of neurologists and neurosurgeons aren't familiar with) MVD has a much lower success rate for Atypicals than for Type I Classic TN patients. There are exceptions though. Atypicals who first presented with Type I symptoms (electric shock type pain) have a better outcome than Atypicals who have never had the Type I pain.

I was refered to a neurosurgeon who is the head of neurology at a major university teaching hospital. He refused to do the MVD or any other procedure on me because he said he's been following his patients for a long time and discovered the following:

- MVD on Atypicals can not work at all.

- MVD on Atypicals can work for a short time

- MVD on Atypicals can make the pain worse.

Would like to hear comments from Atypicals who have undergone MVD.

i certainly havent, but what is recommended for us??? not much it seems.

the fact that i need reconstructive surgery scares me.

Gloria,

Sorry for the late reply on this subject, I'm new to the site. My MVD didn't work, because no arterial compression was found. At least that's what I was told. There was scarring on the nerve, but no loop or anything. The surgeon did put teflon around the nerve, and well, none of that has been helpful. As I posted in my blog this morning, another surgeon that did my L5 surgery asked me why the dr. didn't just cut the nerve. ( Ironically my back surgeon did his residency under my brain surgeon).... but of course, I couldn't answer that question. I've been told I have Atypical TN.. I have no idea what that means. I have the shocking pain in my lower jaw up to my lower lip. starts with a throb, then hits me hard. Lasts for about 5 - 10 minutes. This is after the MVD and the gamma knife ( procedures in that order... )...

Hi Gloria:

I had an MVD in 2009 and it made my pain worse then ever. If I had to do it over again I wouldn't of had the surgery. I have pain on the side of my head behind by ear and in my ear in addition to pain in my face. My surgeon said that this is rare and referred me to a pain management specialist. I haven't had any help since. Just learning to deal.

Take care,

Cathy

I had what my neurologist thought was Type I TN for 5 years, finally was sent to a neurosurgeon who performed an MVD a year ago & now I have CONSTANT pain so I guess either the MVD failed OR I had Type II to begin with...so I am now desparate to find some type of treatment to help lessen the constant pain (aren't we all ;) So I guess from this "Atypical" who underwent an MVD, mine seemed to make the pain extremely worse...any suggestions on successful treatment for Atypical TN? I appeciate any feed back! (have already tried Tegretol - couldn't tolerate the vomiting every day & offered no relief.) Thanks!

Has anyone had pain on the side of your head where the incision was made after an MVD (for atypical and typical TN)? I have pain on the left side of my head and ear that consists of a pulling tight feeling as if there are staples in my head. I didn't have this before my MVD in 2009 and my facial pain is worse than ever (btw-I was pain free for 3 months after surgery). My neurosurgeon said this is rare-he didn't tell me what this is from. Three months after I had the MVD the pain came back (after I flew and stayed in NY in extremely cold weather for a funeral - with my doctor's permission). Now I am taking more meds then I was before the surgery. It is getting harder to work due to pain, stress and concentration problems. Any suggestions or input would be appreciated. Thanks for listening.

Cathy

Sadly, I have had a similiar experience since me failed MVD in Sept. 2011. Mine is on the right side of my head & feels like sharp nails piercing in & around the area of the actual surgical incision & where my stitches were from the MVD. My ear now also has a deep sharp pain most of the time & when I move my head, it feels like my ear has water & pressure in it. I can't even lay down to rest or sleep on my back any longer, & certainly not on my right side - the right side of my head feels like it's been hit with a baseball bat. I know this description sounds "dramatic" but that's how bad it feels...I will always regret EVER having that MVD...Like you, I'm in more pain now than before the surgery & it's seems to be getting worse. My neurosurgeon has refused to even see me since the surgery to talk to me about what the heck went wrong or what's going on NOW! Even in my surgical follow-up appointments I always had to see his PA who had no answers to any of my questions. I'm so sorry you're experiencing the severe pain as well...but I did feel it was important to let you know you are not alone! Thoughts & prayers for you!

http://www.livingwithtn.org/profiles/blogs/effect-of-mvd-on-tn-patients-with-or-without-constant-pain

I found this article this year while researching as I have type 1 and type 2 bilateral…
I think we’re all so unique in our TN journeys, some things work for some and some don’t.
It frustrates me . I wish a cause and cure could be found, there are so many of us suffering.
(( hugs )) Mimi

Mimi, thanks for sharing this article! So many articles, studies & even Neurosurgeons seem to conflict each other...I do as you do, research EVERYTHING I can find on TN & ON & treatments of both, trying to make informed decisions on treatment & care! As I have stated before, I had a failed MVD on 9/13/11 & now I've had 2 neorsurgeons & my neurologist all recommend I try it AGAIN...will have to spend much more time in research, thought, & prayer before going down THAT road again...but the pain has been unacceptable at such a high level that I'm actually considering one more MVD because the doctors think some vessels may have been missed the 1st time & scar tissue (which I produce A LOT OF) my be causing the increased pain...

As you said, I too, wish a cure could be found, so many of us are suffering...we just want our old lives back! Take care!

I have TN2, and through a CISS-MRI my Neurosurgeon, who is a director of Neurosurgery at a Major hospital clearly saw where an artery was pressing up against the nerve. We agreed to an MVD since it appeared to be straightforward and hopefully relieve me of the constant pain and irritation. Evidently when he got in there he found not only the artery but also a vein tangled up with the nerve. he successfully separated them and put in the padding to relieve the constant pressure. Two months later the pain is back at almost 100%. We are now looking at radiofrequency rhizotomy which since I have pain in at least two the the three branches of the nerve is not a procedure to which I am looking forward.

I had my MVD on April 9th, 2013 for my left sided predominantly Type 2 TN.
No compressions ever seen on MRIs, 3 compressions were found, 2 arteries and a vein.
I am only just past 3 months post op, and pain free.
I reduced my meds from 3 to 1, and am staying at 1200mg Tegretol for my right sided TN1.

Mimi

I had MVD 12 months ago for atypical on right side , MRI prior had showed vascular loops crossing over 5th 7th 7 8th tri nerves. Still had slight dull / tooth , eye socket pain , but was able to go off meds till it came back 9mths after surgery . Now alsoT1 on left side of face / head so back on Lyrica 150mgs x3 day , Endep 50 mgs at night , also take Panadol-osteo 2tabs. x3 day , Naproxen 1grm daily & Oxycontin 5mgs x2 day & top up with Endone as needed . Saw neurosurgeon again recently who suggested Tegretol could also be added to this cocktail . I am copping at present although I have just lost my job as a registered nurse after 43 yrs at it , as functional assessment done by occupational therapist rendered me unfit for continuing in this job. Centrelink ( social security ) have turned me down on disability pension !!!!!! even after 2 Drs assessment as well ,I have the points required but they still think I can work , even on these meds. !!! I also have appt. to see ENT specialist , just to rule out anything else , but I'm sure all right sided problems are TN . Will try to keep you posted.



Lyn said:

I had MVD 12 months ago for atypical on right side , MRI prior had showed vascular loops crossing over 5th 7th 7 8th tri nerves. Still had slight dull / tooth , eye socket pain , but was able to go off meds till it came back 9mths after surgery . Now alsoT1 on left side of face / head so back on Lyrica 150mgs x3 day , Endep 50 mgs at night , also take Panadol-osteo 2tabs. x3 day , Naproxen 1grm daily & Oxycontin 5mgs x2 day & top up with Endone as needed . Saw neurosurgeon again recently who suggested Tegretol could also be added to this cocktail . I am copping at present although I have just lost my job as a registered nurse after 43 yrs at it , as functional assessment done by occupational therapist rendered me unfit for continuing in this job. Centrelink ( social security ) have turned me down on disability pension !!!!!! even after 2 Drs assessment as well ,I have the points required but they still think I can work , even on these meds. !!! I also have appt. to see ENT specialist , just to rule out anything else , but I'm sure all right sided problems are TN . Will try to keep you posted.

Gloria,

Your point is well taken. I have had ATN for years without classic TN electrical shock-like pains. The research I did before the MVD found little support or discrediting of MVD for ATN patients. There were a few small studies that did support MVD for ATN but the sample group was always less than 10 patients.

After my failed MVD, I did see a surgeon in New York that would not do any procedure on me because he said that MVD not only was a bad idea, but so was rhizotomy and gamma on ATN for those who never have had the electrical shock-like pains. He pointed out a study that supports your conclusions.

Anyway, before surgery I saw 2 ATN specialist surgeons and both of them said they had 60-70% success rates with patients like me. (I don't know how well they kept statistics because I did not feel my surgeon wanted to follow up on my outcome.) I asked both for published reports, and both said there were none. Both said ATN in practice, works the same as TN, it is caused by the impingment of the base of the trigeminal nerve at the base of the skull entry into the brain. Both said the MVD is the best surgery for my ATN without ever having shock-like pain.

Okay. My surgeon was recommended to me by a very respected doctor at a very highly rated medical center. If you google him you will read many impressive accomplishments about him. My neurologist knew of him and said he was well respected. He was known as an ATN specialist. So I went to see him and had the MVD done. He had said a 70% success rate but that is not published anywhere because he said he had an ongoing study that he had not published yet about success rate with MVD for those with ATN. My surgeon did over a hundred MVD's a year.

So what happens to me. The MVD did not work at all. My ATN pain was evident the instant I woke from surgery. It never stopped. Furthermore, the surgeon did a very poor job closing the hole in the skull he made. So I had complications which his staff did not pick up on. My treatment in the hospital was terrible. It was overcrowded so I spent my time in ICU instead of where they normally place post-op MVD patients. Mostly it consisted of me telling them I don't feel right and them saying "Well you just had brain surgery, what did you expect?" But it turned out something was seriously wrong, I had "air in the head" and a CSF leak because there was a small hole in the sealant under the titanium mesh plate the surgeon placed over the half dollar sized hole he cut out of my skull. I went to the emergency room within a day of my release from surgery and was terribly sick with critically low sodium, air in the head and the CSF leak that they could not diagnose even though I told them it feels like it is leaking out behind my ear and fluid is going into my throat and nose. It was 2 horrible weeks until I had corrective surgery to reopen my head, take off the titanium plate and reseal the hole so it would not leak fluid out of my brain anymore. My recovery from the surgeries took a good year.

The surgeon wrote in the operative report that he did find various blood vessel compressions and that he did fix that.


Haha...I had my MVD the same day. They thought they saw clear artery compression. When they got in there ,it turns out it was just a vein. My surgeon said my tissues looked bad. Like I had an infection at some point. MY nerve was very adhered to the surrounding tissue. I woke up pain free but with new deficits. Then my pain returned about 5 weeks out.

I'm glad I took a chance but it just didn't work out.
Mimi said:

I had my MVD on April 9th, 2013 for my left sided predominantly Type 2 TN.
No compressions ever seen on MRIs, 3 compressions were found, 2 arteries and a vein.
I am only just past 3 months post op, and pain free.
I reduced my meds from 3 to 1, and am staying at 1200mg Tegretol for my right sided TN1.

Mimi