I'm looking for a new neurologist. From what I can tell only one does the MVD. I'm not saying that is what I'm ready for just yet. I am looking into my options though.
My neurologist is Dr. Mike Banowetz at Mercy Neuroscience Center
He seems like a nice guy but i have only been seeing him since April
Seeing a lot of people from oklahoma on here
maybe its something in the water…lol
lol Naw it’s gotta be the oil…or no the wind turbines. I have been suprised more than once by this. I’ve talked to alot of people that say they have it. At the same time their stories are very different from mine, so I don’t know. I’ve been hearing that Mercy has a very good Neuro center. They do the gamma knife up there right or do you know if they do MVD as well?
Rick Smith said:
My neurologist is Dr. Mike Banowetz at Mercy Neuroscience Center
He seems like a nice guy but i have only been seeing him since April
Seeing a lot of people from oklahoma on here
maybe its something in the water…lol
Please check out the story at the doctors tv show… i think it is thedoctors.tv; they recently did a story on the MVD and some new imaging that can tell the physician if the blood vessel is touching the nerve. The doctor I saw told my family that he could see why I was in so much pain because there we multiple blood vessel touching the nerve so he went ahead and “wrapped them all”. Five months later, I had Anesthesia Dolorosa. My other neurosurgeon had warned me that he knew this doctor and he was afraid that I would end up with a disease far worse, Anesthesia Dolorosa. Well, I did. Later when I went back, he said, “If you didn’t have it then, you definitely have it now” … now why would he say that? If it was a "classic case’ then what happened?
All I know if I went back to the neurosurgeon who did my stereotactic radiosurgery and he confirmed the diagnosis of AD. He said, “there is nothing else anyone can do for you”. At age 40 I was struck down with this disease. I was on a wild ride of diving in the South Pacific; inducted into the Women Diver’s Hall of Fame. And, what? I gave that up for this? No way. I made some bad choices. At least I had times of remission with the TN, but now it’s all chonic all the time. The pain pump helps a lot. I’d rather seem you get a neurostimulator or at least trial it before you allowed them to drill a quarter size hole and then tell you how bad it was when you get out of surgery. Why not try a neurostimulator… it is very likely that it will stop your pain. God Bless. Julianne
Thank you Julianne I will look in to it. I have pain every day now, but it has been much worse. It scares the crud right out of me the very idea of someone cutting into my head. However, the drugs are…well, you know how they are. I have very little quality of life as it is right now. This round has only been going on bad for a few weeks this time and I am fighting with depression already. You can be sure I will be checking into the neurostimulator to see if it will help me.
Julianne Ziefle said:
Please check out the story at the doctors tv show… i think it is thedoctors.tv; they recently did a story on the MVD and some new imaging that can tell the physician if the blood vessel is touching the nerve. The doctor I saw told my family that he could see why I was in so much pain because there we multiple blood vessel touching the nerve so he went ahead and “wrapped them all”. Five months later, I had Anesthesia Dolorosa. My other neurosurgeon had warned me that he knew this doctor and he was afraid that I would end up with a disease far worse, Anesthesia Dolorosa. Well, I did. Later when I went back, he said, “If you didn’t have it then, you definitely have it now” … now why would he say that? If it was a "classic case’ then what happened?
All I know if I went back to the neurosurgeon who did my stereotactic radiosurgery and he confirmed the diagnosis of AD. He said, “there is nothing else anyone can do for you”. At age 40 I was struck down with this disease. I was on a wild ride of diving in the South Pacific; inducted into the Women Diver’s Hall of Fame. And, what? I gave that up for this? No way. I made some bad choices. At least I had times of remission with the TN, but now it’s all chonic all the time. The pain pump helps a lot. I’d rather seem you get a neurostimulator or at least trial it before you allowed them to drill a quarter size hole and then tell you how bad it was when you get out of surgery. Why not try a neurostimulator… it is very likely that it will stop your pain. God Bless. Julianne
Julianne,
What is AD?
Jamie
Thanks for asking: In brief, here is the definition, to know more click on the link below.
Anesthesia Dolorosa is one of the most dreaded complications of neurosurgery and is considered to be non-reversible. It occurs when the trigeminal nerve is damaged by surgery or physical trauma in such a way that the feeling sensation in part of the face is reduced or eliminated entirely while the sense of pain remains. According to Dr. Steven Graff-Radford, director of the Head and Neck Section of Cedars Sinai Medical Center’s Pain Center in Los Angeles, there are two forms of anesthesia dolorosa, each of which responds best to different treatments.
Causes
As far as can be seen from the medical literature, anesthesia dolorosa is caused by injury to the trigeminal nerve or as a complication of surgery to correct a condition such as trigeminal neuralgia It can occur after glycerol injection, alcohol injection, partial nerve sections, radiofrequency rhizotomy, gamma knife surgery, balloon compressions and microvascular decompression.
Symptoms
The two main symptoms of AD are facial numbness (much like the numbness from a dental anesthetic injection) and constant pain. The pain is usually burning, pulling or stabbing but can also include a sharp, stinging, shooting or electrical component. Pressure and “heaviness” can also be part of the pain symptoms. Often there is eye pain. Cold increases the feeling of numbness sometimes making the face feel frozen.
http://facial-neuralgia.org/conditions/ad.html
jamie leigh said:
Julianne,
What is AD?
Jamie
http://facial-neuralgia.org/coping/express/pauls_story.html
I would advise anyone who is thinking about a treatment for Trigeminal Neuralgia to read Paul’s story. Grant it this was back in 1984, but it’s really worth a read. Damn, how I wish’d I had someone to tell me about these cases and many more. I’m sure I would have tried something besides the MVD. But we have no way of telling the future. And I guess it is just natural to jump at the first possible cure. But, the truth is… it’s not all it’s cracked up to be. i’ve met more people who were messed up by MVD than those who were cured by it. And that is why I have to be an advocate for change or for knowledge… read as much as you can as soon as you can.
Dr. Tew’s office from the Mayfield Clinic contacted me this past week with a possible treatment for me. Sounds like the stimulator. I simply don’t know if any of it worth my time. But I am praying about it.