Hi Ann
Thanks for checking for someone that was at mayfield clinic
Hey mike,
i had surgery to cut nerves (9th & partially 10th) with dr. Michael Brisman in NY (long island). it didn't work for me but i didn't have any short or long term complications.
also i see that ann suggested dr. slavin in chicago. about 5 weeks ago i had motor cortex stimulator implanted. i'm still having settings tweeked but so far this surgery (considered last resort) hasn't worked. slavin is good, highly respected and deals with challenging cases.
are you type I or II? the latter as you may know can be more difficult to treat.
even though cranial rhizotomy didn't help me i don't regret having it done. i would have always wondered. if you proceed with rhizotomy, NS may suggest you have a lidocaine block as a diagnostic. it's not to diagnose that you have gpn but rather to determine if pain is still based at cranial nerve site. if it is you may get pain relief for a few hours. still that test is not a 100% predictor of having successful surgery.
if you have any questions, please don't hesitate to ask. this condition, this pain is dreadful.
i wish you all the best!!
Hello Blue sea
Thank you for your post.
So you had the 9th and the sensory part of the 10th cranial nerve cut and had no issues with your voice or swollowing ? This is great news, I headt that a lot during the last week.
What did you mean by asking if I am type 1 or 2 ? I donât know what you are refering to.
could you please tell me if the guy in the link below is the right Dr. Brisman? Is it hard to get an appointment?
http://nspc.com/dr.mbrisman.html
Are you from the NY area? I am going to NYC next week to see Dr. Winfree. Maybe we can meet and talk. I need all info I can get ⌠this surgery is a big big step.
Thanks
Michael
yes 9th and partial 10th nerve. sensory fibers only on both. for 10th, it's too dangerous to cut all sensory. if i remember correctly too closely bunched with motor so they only cut partially on 10th. i think. no swallowing problems. no complications at all. in fact my recovery was somewhat easier than my recovery with MVD.
didn't see link. Dr. Michael Brisman. his practice is called Neurological Surgery PC or NSPC. tel:516.255.9031. his colleague Jeffrey Brown i think also performs this surgery. Type II is also know as atypical. it's not the electric shock pain (type I) but constant pain. Brisman was not that difficult to get appt with.
i don't live in NYC. but would be happy to answer yr questions here, by msg or phone. i'll send you a message with my tel.
hello bluesea
I contacted Dr. Brismanâs office today and they gave me an appointment this week !!!
Fantastic. I talked to Romana over there and everything went professional and smooth.
Thank you so much for your help 
Oh and please contact me regarding your phone number.
regards
Mike
bluesea said:
Hey mike,
i had surgery to cut nerves (9th & partially 10th) with dr. Michael Brisman in NY (long island). it didn't work for me but i didn't have any short or long term complications.
also i see that ann suggested dr. slavin in chicago. about 5 weeks ago i had motor cortex stimulator implanted. i'm still having settings tweeked but so far this surgery (considered last resort) hasn't worked. slavin is good, highly respected and deals with challenging cases.
are you type I or II? the latter as you may know can be more difficult to treat.
even though cranial rhizotomy didn't help me i don't regret having it done. i would have always wondered. if you proceed with rhizotomy, NS may suggest you have a lidocaine block as a diagnostic. it's not to diagnose that you have gpn but rather to determine if pain is still based at cranial nerve site. if it is you may get pain relief for a few hours. still that test is not a 100% predictor of having successful surgery.
if you have any questions, please don't hesitate to ask. this condition, this pain is dreadful.
i wish you all the best!!
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Hey Mike ,Hey Bluesea ,Hey to all
I would like to ask Bluesea if this rhizotomy has truly this procedure? It would be very painful and hard to bear?
Thanks to all of you for your help
All together more easy to fight and win!
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Following a rhizotomy, the patient trades their pain for numbness in the corresponding division(s) of the trigeminal nerve. The operation is performed as day surgery (i.e. the patient goes home the same day). The procedure is performed in the sterile conditions of the operating room. A brief pulse of anesthetic is given through an intravenous line and the patient is unconscious for a few minutes. A needle is introduced through the cheek and up through the foramen ovale (the hole in the skull where the trigeminal nerve enters). An electrode is then placed through the needle so that its tip is touching the trigeminal nerve. When the patient wakes up, we confirm that the tip of the electrode is touching the correct division of the nerve. Small pulses of electricity are sent down the electrode until the patient feels âtinglingâ in one division of the nerve. The electrode is moved slightly until the âtinglingâ is felt in the same division of the nerve that is causing the pain. Another pulse of anesthetic is given while the electrode is used to burn the offending branch(es) of the nerve. When the patient wakes up, we check that the nerve has been sufficiently lesioned. They will have numbness in the division of the nerve that was lesioned.
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Hello
Well the procedure described above is regarding the Trigeminal nerve.
This is a totally different procedure and nerve !!!
regards
Mike
Mike said:
Hello
Well the procedure described above is regarding the Trigeminal nerve.
This is a totally different procedure and nerve !!!
regards
Mikeyes,i know, the nerve is different but the way to cut would be the same?Way to search for the right point and anesthesia will be in this direction? I found only the description of the trigeminal nerve so detailed.I would like to understand precisely how it works for GPN.I hope in your helpThank you for everything
Hi Lisa
The way they cut the GPN is the following:
First they make an incursion behind your ear (about one inch in diameter). That is the entry to your brain. Then they take their âtoolsâ and cut the GPN off and in most cases they cut the sensory part of the 10th cranial nerve aswell.
The whole procedure is performed under full anestesia and they will not wake you up during the surgery 
As far as I know they donât use any fancy stuff like gamma knife or electrodes to âburn offâ the nerve, they just use a scalpel.
PLEASE CHECK THE LINK BELOW:
http://www.mayfieldclinic.com/PE-Glossopharyngeal.HTM#.U40Cytq9KSM
Most of the feedback that I received was positive and that there are no side-effects in most cases.
If you send me your e-mail address I can send you one more pdf files, explaining the procedure in detail.
I can not upload any files from my Ipad to this forum.
regards
Mike
Hi Mike!
How's things going with your appointments? What did you choose?
Ann
hello ann
well Imhad 3 appointments so far and I heard all sorts of approaches to the problem.
Ranging from âcut it all offâ to gamma knife and âdonât touch anythingâ and nerve stimulation etc.
well there are about 5 or 6 options on the table and it is up to the patient aka Me, to decide which one to choose. The doctors canât make the decision for me.
I am tending towards the radical solution but there is still some time to think about it all.
time will tell
ann,
just wanted to see how you're doing. earlier in this thread, you described hellish 24/7 pain (i'm sorry) and thoughts of euthanasia (i'm know those thoughts very well). i'm thinking of you. as cliche as it sounds, you are not alone. i wish you relief from this hellish nightmarish monstrous pain. be well.
mike, i wish you all the best with whatever you choose to do next. i have a good feeling; it's gonna work.