It dawned on me today that I am the one who has managed my neuro care. My neurologist just writes the scripts. Last year when I went to him about Gamma Knife, he brushed it off. I found a neurosurgeon and had it done. I had to call my neurologist to let him know after.
Today I met with a neurosurgeon about MVD. It's scheduled for May 19th. I called my neurologist to let him know. He seemed uninterested.
Granted, I know I have a bad neurologist and I am an aggressive person. But I have also noticed there is a chasm between neurologist and neurosurgeons.
The neurosurgeon I met with today said it's hard to be in his field because he wants to help everyone but can't always fix them. I wonder if the neurologist feel the same...Just musing.
I have a tumor that seems to like this spot in my head. Its grown back. The last MRI showed Gamma did its job but apparently its fast growing and made itself known in Feb. My neuros response is to throw more drugs at it. I had 3 MRI’s before Gamma and one since.
I see you are type 1...
Did your MRI show nerve compression before gamma knife? what about now since you have MVD scheduled?
I am excited for you, because you are Type I, and MVD has a fairly good success rate for curing Type I symptoms!
Honey, you know, by being in the medical profession that we know more than they do about this "rare and vicious animal".
In fact, many of them don't want to treat us, especially us Type II people, because they don't want to work with what they don't really understand. Pain Management, as is required a lot of times for both types, is not even a requirement in med school, right?
But, please keep us informed as to how the stages, emotions an preparations for your MVD unfold. We care for you. You're part of our little family of chronic sufferers now. I hope you get the best care possible. I think it is an asset that you are an aggressive person with doctors, when dealing with Trigeminal Neuralgia.
Sending good vibes for healing and prayers your way,
Thanks Stef. I did tell the doctor Wednesday that being a doctor does make for a bad patient. He understood. Even worse, some of my friends are doctors so don't be surprised when they nosey about the chart and ask LOTS of questions. I hope I am educating as I go.
We did talk about Type 2's. He said as a doctor its very hard because you want to help and fix but with Type 2 you can only manage. He and I both hope there is something found that helps Type 2 very soon. I send you mental hugs daily.
B
Stef said:
Dear Bobbie,
I am excited for you, because you are Type I, and MVD has a fairly good success rate for curing Type I symptoms!
Honey, you know, by being in the medical profession that we know more than they do about this "rare and vicious animal".
In fact, many of them don't want to treat us, especially us Type II people, because they don't want to work with what they don't really understand. Pain Management, as is required a lot of times for both types, is not even a requirement in med school, right?
But, please keep us informed as to how the stages, emotions an preparations for your MVD unfold. We care for you. You're part of our little family of chronic sufferers now. I hope you get the best care possible. I think it is an asset that you are an aggressive person with doctors, when dealing with Trigeminal Neuralgia.
Sending good vibes for healing and prayers your way,
Thanks, Bobbie. I need them. You're sweet, and I'm sure, a good patient.
Everything that you told me that you and your doc talked about regarding Type II, you know, I wholeheartedly agree with. It can only be managed, really. There needs to be more research. Hoping for a miracle, but at least managed well, for now, on meds.
Yeah, like I said, keep us posted on how your feeling before and after this. :)
Bobbie said:
Thanks Stef. I did tell the doctor Wednesday that being a doctor does make for a bad patient. He understood. Even worse, some of my friends are doctors so don't be surprised when they nosey about the chart and ask LOTS of questions. I hope I am educating as I go.
We did talk about Type 2's. He said as a doctor its very hard because you want to help and fix but with Type 2 you can only manage. He and I both hope there is something found that helps Type 2 very soon. I send you mental hugs daily.
B
Stef said:
Dear Bobbie,
I am excited for you, because you are Type I, and MVD has a fairly good success rate for curing Type I symptoms!
Honey, you know, by being in the medical profession that we know more than they do about this "rare and vicious animal".
In fact, many of them don't want to treat us, especially us Type II people, because they don't want to work with what they don't really understand. Pain Management, as is required a lot of times for both types, is not even a requirement in med school, right?
But, please keep us informed as to how the stages, emotions an preparations for your MVD unfold. We care for you. You're part of our little family of chronic sufferers now. I hope you get the best care possible. I think it is an asset that you are an aggressive person with doctors, when dealing with Trigeminal Neuralgia.
Sending good vibes for healing and prayers your way,
I am also scheduled for MVD in September (if I can hold on that long...). Please let me know how your surgery went! I have heard very good results from this. I had the injection surgery which did nothing but empty out my wallet of about $3000.
Hi, how did you find out about what type you are? My pain is located in the right side of my face, but lately has been moving around to under my eye and my upper lip. Any info? I am scheduled for MVD in September...the drugs are not very effective anymore...have to take 4 a day. I am a singer, and the moving of my mouth by the end of the evening makes it kick in. Very embarrassing as well as that extreme pain which we all know and dread.
Sally
Stef said:
Dear Bobbie,
I am excited for you, because you are Type I, and MVD has a fairly good success rate for curing Type I symptoms!
Honey, you know, by being in the medical profession that we know more than they do about this "rare and vicious animal".
In fact, many of them don't want to treat us, especially us Type II people, because they don't want to work with what they don't really understand. Pain Management, as is required a lot of times for both types, is not even a requirement in med school, right?
But, please keep us informed as to how the stages, emotions an preparations for your MVD unfold. We care for you. You're part of our little family of chronic sufferers now. I hope you get the best care possible. I think it is an asset that you are an aggressive person with doctors, when dealing with Trigeminal Neuralgia.
Sending good vibes for healing and prayers your way,
Bobbie - I can totally relate to your statements about the seeming disconnect btw neurologists and neurosurgeons. In my particular case, the neurosurgeons have been much more effective.
By the way, I had a brain tumor as well (meningioma), which was luckily removed on February 16, successfully I might add.
I will keep my progress posted. I am excited and nervous about the MVD.
I did botox 3 times at the tune of a $1000 each time. Living with our pain we would do almost anything to find some relief.
I hope time flies by for you.
B
sally langer said:
I am also scheduled for MVD in September (if I can hold on that long...). Please let me know how your surgery went! I have heard very good results from this. I had the injection surgery which did nothing but empty out my wallet of about $3000.
How has your pain been since february? I am told it shoul be a big relief but only after the nerve fills out again. Please share.
Thank you, B
Brian Rawson said:
Bobbie - I can totally relate to your statements about the seeming disconnect btw neurologists and neurosurgeons. In my particular case, the neurosurgeons have been much more effective.
By the way, I had a brain tumor as well (meningioma), which was luckily removed on February 16, successfully I might add.