My first day on this site. I've read a lot of blogs and comments and it's very disheartening. I'm considering MVD due to my age and years dealing with TN. Fearful current meds will eventually lose their effectiveness and by then I won't be a good candidate for surgery.
But everything I've read is downright beyond scary. Mortality rates, worse after surgery, hearing loss, etc.
Is there ANYONE who had a positive experience??? I did talk to one person who had the surgery done in San Francisco and raves about it. WOKE UP pain free and has stayed pain free two years ago.
Has anyone heard anything about Dr. Bettegowda at Johns-Hopkins??
For people with classic (Type 1) TN, MVD is successful about 90% of the time. About half of all those operated on will remain pain free for 12 years or longer. The "mortality" rate I have seen reported in Peter Janetta's papers showed 3 deaths in over 1200 patients, none of them for reasons directly related to the surgery. About 12% of MVD patients experience serious side effects, some of them correctible. The most bothersome for the most people generally involve facial numbness, though a lot of patients prefer numbness to pain. Anesthesia Dolorosa seems to occur in about 4% of those who have an MVD, and it is a bear to treat.
I'm basing these observations on papers by Dr. John Tew and Peter Janetta, among others.
Plenty of people get a positive response from MVD, but as this site has stated before, these folk generally move on and don't report their outcomes. I know nothing to report about John Hopkins. The fact you had teeth whitening which you state was the cause, I would question ( if you are considering vascular compression of the trigeminal nerve as a cause), whether MVD or any other TN procedure is for you. THIS is a positive. Having a dental procedure doesn't mean blood vessels crashed with your trigeminal nerve root (there are people on this site, and some who have left this site, who would be 'putting you right') I'm sorry they are not here to add their bit. Assuming no direct trauma to trigeminal facial nerves, a likely candidate is cervical/ neck dysfunction. As a start
Thank you! MRI at Johns-Hopkins showed damage to trigeminal nerve and both neurologist and neuro-surgeon confirmed their opinion that I have TN. My symptoms have been classic, first relatively mild intermittent shocks, remission for months at a time, return and progressively worse. Coincidentally, most severe following surgery for knees this past summer. All the classic actors: wind, touch, biting, brushing teeth, etc. Whether the teeth whitening had anything to do with it or not is questionable. First symptoms just appeared following that procedure. Perhaps coincidence. Wouldn't I be thrilled if you are right and I will certainly check that out.
aiculsamoth said:
Plenty of people get a positive response from MVD, but as this site has stated before, these folk generally move on and don't report their outcomes. I know nothing to report about John Hopkins. The fact you had teeth whitening which you state was the cause, I would question ( if you are considering vascular compression of the trigeminal nerve as a cause), whether MVD or any other TN procedure is for you. THIS is a positive. Having a dental procedure doesn't mean blood vessels crashed with your trigeminal nerve root (there are people on this site, and some who have left this site, who would be 'putting you right') I'm sorry they are not here to add their bit. Assuming no direct trauma to trigeminal facial nerves, a likely candidate is cervical/ neck dysfunction. As a start
For people with classic (Type 1) TN, MVD is successful about 90% of the time. About half of all those operated on will remain pain free for 12 years or longer. The "mortality" rate I have seen reported in Peter Janetta's papers showed 3 deaths in over 1200 patients, none of them for reasons directly related to the surgery. About 12% of MVD patients experience serious side effects, some of them correctible. The most bothersome for the most people generally involve facial numbness, though a lot of patients prefer numbness to pain. Anesthesia Dolorosa seems to occur in about 4% of those who have an MVD, and it is a bear to treat.
I'm basing these observations on papers by Dr. John Tew and Peter Janetta, among others.
I have bilateral ATN, with both the shocks and burning boring pain, in all three branches on both sides. My right side had been affected ( undiagnosed) with intermittent boring pain for close to ten years before the shocks started in January 2012. I tried different medications for 10 months, and then developed ATN on my left side. In January 2013, I had MVD on the right side, where my nerve was compressed by an artery and two veins. The surgery immediately relieved the pain, however the burning boring pain returned within 6 months. This was likely due to the length of time the nerve had been compressed, causing irreparable damage. In August 2013, I had a peripheral nerve stimulator implanted on the right side to manage the pain, and it has worked exceptionally well.
I had MVD on my left side in October of 2013, and that procedure was completely successful. I no longer take any medications!
I had no complications with any of the surgeries, however I did have some diminished hearing on the surgery side following both MVDS. This is due to internal swelling, and resolved within a month both times.
I traveled out of state to my neurosurgeon, as he is an expert in TN , and highly experienced with MVD surgery. It is very important that you find a doctor who has done many of these procedures, as that can greatly affect the outcome of surgery.
Finding the right Doctor, and treatment for TN can be very daunting. This group is a great source of information and support, so please ask any and all questions you have.
Christine