it looks like to me the surgery is a success why has everyone not done it i just want to know cause i want information on it and why if so effective why?????i have spent enough money messing around is with these evil drugs can u all give me your oppinion on surgery please
Holly,
7mths. ago I did Gamma Knife, & then in Feb. I got worse. I thought if Gamma Knife could make my nerves so much worse, then I’m not letting them open up my head. Obviously my body did not respond well, & these nerves need to calm down in my face. I wish we could all be free of this.
I am finally having the MVD after 6 years of this, but only because I got fed up with neurologists who never seemed to really understand what I was going through. They just kept giving me more drugs to try, and nothing that helped… most made me worse. They also insisted that surgery wouldn’t help since they believed it to be Atypical TN. I finally went to my GP and begged her to let me see a good neurosurgeon that I had done some research on, someone who had a lot of experience with TN. I finally got my consult with the surgeon, surgeons actually as they work as a team. They listened when I described my symptoms, and told me they believed I have TN and that there were surgical options. They explained the different procedures available, but let me know the MVD was the “gold standard” as far as the options go. They were puzzled that I had “waited” so long to see a surgeon, I told them how no doctor would even discuss the option of surgery, it was only after my GP saw me during an attack (sobbing, drooling, nose running… very pretty!) that she referred me to them. It would have never happened if I hadn’t begged!
Hi holly-
I have had TN since I was 13 and I am now 20. I have atypical TN, bilaterally. I have had 4 MVD’s. It is not that it never worked, but vessels kept growing back . Obviously, I would always do it again. It does work! As long as you go to a KNOWLEDGEABLE surgeon you will be fine! It is an intense surgery, but it helps, so it is worth it.
As far as info on it…they go in behind your ear (they have to shave some hair) and lift the cerebellum then the trigeminal nerve is there. They will take a patch and pad the nerve and the vessel. this will prevent the from pressing, therefore no pain : ) Recovery takes time…just depends on your body.
It is rough, but worth it! good luck!!!
Hi Holly
I,m one of the fortunate ones.I was diagnosed in late June 2009 with TN,seen a nearologist who could not help me but suggested it was Atypical not Classic TN.He referred me to a excellent Neuro surgeon.Dr Micheal Tymanski (Toronto Ontario Western Hospital)Ofcourse before my appointment with him in the few short months I had this terrible disorder did a great deal of research.Best proceadure for pain relief ofcourse was MVD surgery.Researched more on the surgeons track record asked him how many MVD’s he had performed…to my amazement he had done 400.Did not take me long to sign consent for surgery.January 29 2010 I had MVD surgery.Was very scary leading upto this day but my outlook was very possitive and this lifted my spirits.I had my wife who supported and researched everything with a fine tooth comb and informed me very well.After surgery I did have a CSF leak and was confined to bed in hospital.Took 2 days and the leak healed itself (thank god) was more frightining.5 days in hospital.
It is now June 7th.I am pain free & completely off the Tegretol (2000mg day).If you asked me a few days after surgery if I would do it again?I would probably said no only cause of pain and axiety from the surgery.
If you asked or if I had to decide now to have MVD again?I would jump at the oppurtunity.Remember we are all so different and this may or may not happen for you.
If I may give any advice…I would advise do your homework research research research…surgeon,hospital,after care.Find out as much as you can to make your decision.I wish you the very best and if ther is anything I can help with please just ask. GODBLESS
Brian
I had the same question when I was first diagnosed. The research I have doen leads me to believe the surgery will only work IF there is a vein compressing the nerve. Have you had an MRI?
I was diagnosed with TN, on the left side, in the summer of 2009 and had MVD in Nov. 2009. I was found to be allergic to most of the meds given to treat TN and my MRI showed a compression, so I was a candidate for surgery. I too have wondered why so many people wait so long and take so many toxic drugs before going for the cure of surgery. My surgery was a complete success and I’ve been pain free until just recently, when I developed TN on the right side. I couldn’t get into my neurosurgeron until June 17th and that appointment can’t come soon enough. I will not hesitate to have surgery again. I’ve had 14 surgeries, of varying types, and actually the MVD was one of the easier one to recover from. I’m not saying it was simple, but it wasn’t too bad either. One of the reasons people may not have the surgery done, is the cost. I have insurance, but hospitalstay alone was over $75,000.00. That didn’t include the Dr., anesthesiologist, labs and so on. My feeling is that there is no price on getting my life back, but at that cost, some people just can’t do it. I wish you the best.
Hi Holly;
I lived in Utah for 20 years, so nice to talk to someone from there. I live in Canada now, and the failure rate of MVD surgery is so high that my province (where the gov't pays medical bills) won't even pay for the surgery anymore. It seems to work part of the time if you have typical or type 1 TN, but it doesn't work at all if you have atypical or type 2 TN. If you go to discussions, I just added one that describes all the different kinds of TN. Did you end up getting the surgery?
Best wishes, Sheila
I had MVD in 2007 with no results, I am Type 1 with problems in the second branch of my nerve.
Holly,
MVD has a very low success rate for Type II, or ATN patients.
Many Type II patients are told they have "Atypical Facial Pain", and that doesn't warrant surgery. But, it does not work very well when they do it anyway, or so I've read in many places.
I didn't read the responses below, but that's why a lot of people haven't had it, including myself.
Have you had an MVD?
Hugs,
Stef
In re: It does work! As long as you go to a KNOWLEDGEABLE surgeon you will be fine!
Not so, I went to the Trigeminal Specialist Neurosurgeon in St. Louis, had MVD
It did not work, at all
Ally Castellano said:
Hi holly-
I have had TN since I was 13 and I am now 20. I have atypical TN, bilaterally. I have had 4 MVD's. It is not that it never worked, but vessels kept growing back . Obviously, I would always do it again. It does work! As long as you go to a KNOWLEDGEABLE surgeon you will be fine! It is an intense surgery, but it helps, so it is worth it.
As far as info on it...they go in behind your ear (they have to shave some hair) and lift the cerebellum then the trigeminal nerve is there. They will take a patch and pad the nerve and the vessel. this will prevent the from pressing, therefore no pain : ) Recovery takes time...just depends on your body.
It is rough, but worth it! good luck!!!!!!!
Suzanne Marriott - it only confirms that a person have to take care of himself... had we not care of ourselves nobody will :(
did you MRI showed something that they were willing to "open" for MVD ?
wish you so much good luck
I agree with Stef and Maddy. I started with bilateral Atypical and progressed to having both Type I & II pain.
I’ve heard so many personal experiences where MVD was a failure or in many cases makes the pain worse. We have a moderator here who was the perfect surgical candidate, with a highly respected neurosurgeon with MVD experience, but had every brain surgery complication known to medical science - cerebral spinal fluid leak, meningitis, brain infection, crainial skull infection and coma. She spent a year in and out of intensive care, had countless brain surgeries to try to correct the complications and it’s still not over. Ironically the MVD relieved her Type I pain, but at a very high cost.
I think it’s tragic that the neurosurgeons don’t explain complications and admit that there is no guarantee that MVD will be successful, regardless of the “success rates”. People think this surgery is a “cure” and it is not. Even if it’s initially successful the pain can come back in weeks, months or years. The doctors don’t know what will happen.
I personally feel the negatives far out-weigh the positives. I won’t subject myself to an MVD - ever!
Mvd can cause hearing loss as well as anesthesia delorosa and even death in rare cases. I know the desperation is there to rid ourselves of the pain. But there are the risks to weigh in...
The Dr that did my surgery told me about the possiblity of Cerebral Spinal Fluid Leak but downplayed that as 1% of patients and that it could be very easily fixed. He told me about the possible hearing loss in that ear, but I would give up my hearing in that ear if it would stop the pain, I still have a second ear. When I asked him about other complications my G.P mentioned, he just laughed them off, saying he has had nothing else happen to his patients. My G.P. did mention loss of balance and I do have that. Now my kids are wanting me to have the Cyber-knife, sounds so easy when you read the ads or talk to the office of the Dr.'s that do that.
Min said:
Mvd can cause hearing loss as well as anesthesia delorosa and even death in rare cases. I know the desperation is there to rid ourselves of the pain. But there are the risks to weigh in...
Maddy, I personally believe “success rates/percentages” are useless because there’s no way to predict if anyone will fall into the (for example) 95% success or the 5% failure or the 1% cerebral spinal fluid leaks or the hideous complications that I’ve never heard percentages on. No guarantee whatsoever! It’s rare that a neurosurgeon follows their patients post-op, so how reliable are these alledged success rates? **And from the cerebral spinal fluid leak patients that I have personal knowledge of, they are NOT easy to fix, requiring repeated surgeries.
What people need to understand is that WITH ANY BRAIN SURGERY THERE IS THE RISK OF DEATH, COMPLICATIONS AND/OR DOCTOR NEGLIGENCE. Even the best neurosurgeons are capabable of making a mistake.
There are so many members here who have an MVD scheduled and then we never hear from them again. What happened? Did the surgery eliminate the pain and they’re no longer in need of support or did they have serious complications or die? We’ll never know.
I live in Canada and I have not heard of the surgery not being covered under our medical system. Which province do you live in?
Sheila W. said:
Hi Holly;
I lived in Utah for 20 years, so nice to talk to someone from there. I live in Canada now, and the failure rate of MVD surgery is so high that my province (where the gov't pays medical bills) won't even pay for the surgery anymore. It seems to work part of the time if you have typical or type 1 TN, but it doesn't work at all if you have atypical or type 2 TN. If you go to discussions, I just added one that describes all the different kinds of TN. Did you end up getting the surgery?
Best wishes, Sheila
Why was this old thread resurrected?
Some people just aren't candidates for MVD, though they wish they were. Some people just don't want that major of a surgery, especially those who respond well to meds. An MVD breaks the blood/brain barrier. Hello meningitis. Some people aren't healthy enough to chance such things.
It's a personal choice, and is nobody's business but the patient, their family, and their doctor, unless they choose to share. Personally, I thought the thread was in poor taste (as well as ignorant) when it first showed up, and now we're at it again?
I take Topamax, why doesn't everyone just take Topamax? See how silly that sounds.
Excellent points, Crystal!
Sorry, some of us are newbies here, I guess I better be more careful about posting.
I thought this was where you could come and talk out your feelings, I guess I was wrong.