Hello.
I was diagnosed with GPN recently, after suffering from the condition for more than 3 years. I read "Ron K"s message from Nov.23rd 2010 about his surgery. He had a resection or removal of the GN nerve and said he has no problems swallowing or talking.
I would like to go for the same surgery option but need to know more about the risks. I also need a doctor who,can perform the surgery.
can anybody help me with this issue ?
Kind Regards
Michael
You need to find a good one in your area. My neurosurgeon just does the MVD procedure, no rhizotomies. If my MVD was any indication, just doing that made my voice like Mickey Mouse for months, and it was hard to swallow for a couple of months, too. If it were permanent, that would be hard to accept. My pain is gone, 19 months now, I've recovered everything pretty much, and I'd do it again. My surgeon was Dr. Fukushima of Raleigh: some have not had good experiences with him, but mine was good and the outcome good. Hope you get some relief.
I am surprised to hear no resulting problems in swallowing. Is there a reason why you would prefer this and potential permanent numbness to side of tongue, back of throat rather than consider MVD surgery? I had great success with MVD surgery in 2013 and really didn't even consider Rhizotomy.
-Jessica
Dear Jessica
I am considering this option because I had several MVDs on other nerves on my head and neck without any positive results. I will have the occipital nerves and the greater auricular nerve removed within the next few weeks because MVD did not help. I think that the nerves might have some damage inside or might be cronically infected. It is not an easy decision, but I want to remove the nerves because life is hell in my current condition and removing these nerves has no big side-efects beside numbness and no more sweatting in the supported areas.
Removing the GP nerve is a big issue on the other hand !!!
I was also surprised reading about having no problems swallowing avter GP nerve resection. This is why I am seeking advice from people that had the surgery done.
regards
Mike
Hello Vic
Thanks for your information. The part of not beeing able to swollow and the Mikey Mouse voice realy scares me. Good to hear that you are fine again. I am realy afraid of cutting off the GP nerve and might try the MVD first … there is nothing to lose by doing MVD first.
Thank you
Hi Mike!
I'm sorry to see how struggling you in fighting with this bloody disease. I'm in the same boat with you. There is a list of the neurosurgeon names who operated on our members with good or excellent result. They performed exactly that type of procedure that you are interested in, i.e. resection of the glossopharyngeal nerve and without any side effects.
Dr. Honey is in Canada in particular. You said you can travel. I'm from the UK and it is incredibly difficult to find a knowledgeable neurosurgeon here.
http://www.ucsf.edu/news/2014/01/111506/ucsf-team-reveals-how-brain...
http://www.drkencasey.net/why.html
http://www.goodmancampbell.com/faculty-and-staff.cfm/staff/85
http://www.mayoclinic.org/biographies/zimmerman-richard-s-m-d/bio-2...
Join our Facebook groups to ask more information from people who had their surgeries recently. There are two groups there :
https://www.facebook.com/groups/133259106808388/
https://www.facebook.com/groups/16645264123/
Stay in touch!
Ann
Dear Anna
Thank you for the information. I contacted Dr. Honey’s office 2 month ago and never got a reply. I sent an e-mail again yesterday and will just give them a call tomorrow.
I suspected to have GPN but for quiet a while now but the doctors in Austria and the rest of Europe have just no clue about neuralgias.
I came to Detroit ( MHSI with Dr. Gilmer) and she diagnosed me with GPN after examining me.
I think I will be traveling to Vancouver for the GPN part of my condition (I have multiple neuralgias).
Do you know anybody who had the Glossopharyngeal nerve removed or how can you tell that Dr. Honey’s patients have no side efects after the surgery. I hear very contradictory stories, ranging from no side efects to the classic textbook problems. I have to admid that I hear the bad news only from doctors that have NO experience with the procedure.
If you could give me some guidance and advice I would much apreciate it.
Do you also have a simmilar problem ?
Thanks
Mike
Of course, I know :)
This is my friend Ron Koros who you mentioned in your text. And some other people. There is a link where is a member of Trigeminal Neuralgia site Bellalarke is telling that they are going to have the Glossopharyngeal nerve resection with Dr Honey soon.
And Ron BubbaRonDas tells them about his experience
Please read the posts. I think it is very encouraging!
Yes, I'm in a hellish pain every day and nothing does help. I'm on norco at the moment.
I'm very depressed and seriously started to think about the euthanasia.
I think I have to stop writing now because I'm really depressed because of pain.
And of course I'm pleading my GP to refer me to a GOOD (not to any) skilled neurosurgeon.
Ann
Thanks again for more input.
The only medicine that kills my pain is a mixture of 0,5 mg Clonazepam and 60 drops of Tramal. I take both with 20 minutes inbetween in the morning about an hour before I get out of bed. This makes me about 95% pain free. This is a selfmedication project that was finaly aproved by my doctor 
all the other crap like antidepressants, Lyrica or Neurontin did not help at all and actually increased the pain and the side effects where unbareable.
Try the Tramal and Clonazepam thing. Tramal makes you stoned for the first one or two weeks but then you will feel normal and almost painfree with little side effects.
Ciao
Mike
Mike!
Thank you for your advice! But if only I could buy Tramal here without prescription! I cannot. I f*cking cannot do anything but suffer :(
I wanted to explain why people don't have any side effects such as swallowing difficulties etc. after the Glossopharyngeal nerve resection.
The point is that the Rhizotomy (resectioning) it is a selective procedure, i.e. during the operation the neurosurgeons choose what exactly they need to cut.
So as our nerve consists from two roots - the motor root, which is responsible for the movements and sensory root, which is responsible for the feelings and pain in particular. Please see the pic.
http://tinypic.com/view.php?pic=2s13ajc&s=8#.U4ej3HKSwm0
During the Rhizotomy the neurosurgeons cut just the sensory root and the motor root is preserved. That's why after the operation people don't feel any difference than they did before. The only the pain is gone.
If you read the link I have sent you you could notice that Ron has attached the article that his neurosurgeon wrote shortly after his surgery. This article tells how they use electrodes to definite where each root is.
BUT the most important part will be now - only neurosurgeons that are skilled in this type of operation can correctly differentiate sensory vs motor rootlets.
Because if the neurosurgeon hasn't got a clue about this procedure, even if they have all the equipment, they can mess everything up and receive results with complications.
That's why I think if you get to Dr Honey you will be in a good hands.
Also I know that the neurosurgeons usually start with MVD. When they get in and if they see that the nerve is damaged, they cut it. If it isn't damaged, they decompress it.
There is a link about the Glossopharyngeal Neuralgia. Maybe you will find it interesting.
http://www.mayfieldclinic.com/PE-glossopharyngeal.htm#.U4ekMHKSwm0
Also, yes, I personally know a woman who had this procedure done 18 years ago. Still no pain.
Ann
Hello Ann
YOU JUST MADE MY DAY !!! Thank you for this fantastic explanation. I already contacted Dr. Honey and I will consult him because he is the only doctor I know off that has performed many Rizotjomies of the GP nerve.
Thank you thank you thank you 
Regarding the tramal: It is a controlled substance and you will not be able to buy it without prescription in any western country. Go to a doctor and specifically ask for it and if he/she does not give it to you just ask the next one !!!
Tramal and clonazepam changed my life 3 months ago. I went from beeing dissabeled, depressed and suicidal to almost back to normal within a few days. My life was hell before and now I can drive, go out and meet friends again. Due to my professional occupation it keeps me from working and I have to go for the surgery to return back to work ASAP. There are some days when I sleep 17 hours and have severe pain again but this goes away after one or two days. I would not be able to work a heavy roster with a lot of early morning or night shifts because my body is only functioning if I keep a more or less regular sleep pattern, if not, the pain comes again and the lights go out for several hours. Tramal MIGHT also lose its effectivness after a few years and because of these reasons it is (hopefully) only an interime solution for me. The main reason for me to start taking Tramal was to be able to travel for my treatments.
Keep,on Fighting !!!
Aww, I'm so glad I could help you! I wish you the best of luck with your appointments!
What about me though I'm in such pain now that I want to hit my head against the wall :(
Also I wanted to add regarding your nerves. I don't think that they are infected. I think that it is a demyelination process.
Your nerves probably lost their protective covering (myelin sheath) and became very sensitive. And most likely mine too.
However, surgery has to help with it.
Will ask my GP about Tramal tomorrow.
Keep in touch
Ann
Hello
I’m Bellalarke, mentioned in one of the previous posts. I will be seeing Dr. Honey in July. It’s not easy to get an appointment with him but from others I have spoken with, he is worth the wait.
I had an MVD last September by Dr. Gooderham in Vancovuer. Both 5th and 7th nerves decompressed but we had agreed before surgery not to cut the ninth and see if things improved from the surgery. I did get some relief with second branch of trigeminal, I can chew food again and my gums and teeth are not in so much pain. Have also not had many hemifacial spasms. But the glossopharyngeal neuralgia is getting worse and the occipital shows no signs of relief despite one round of Botox.
I wake up in the morning painless but things degrade from about 11:30 onward. Talking is one of my worst triggers.
I take 3,600 gabapentin, 75 tramacet once a day at about 12:30 (it seems to boost the gabapentin but it is a on e a day deal, really offers no relief later in the day). I’ve added a bit of baclofen recently to see if that will help. I take zoplicone every night because without it I can’t lay my head on the pillow. Mostly I am laying low until I see Dr. Honey.
Mike, I wish you success getting in touch with Dr. Honey’s office. This is a hellacious disease.
Keep Heart
Bellalarke
Thank you Ann,
you where of great help. I,learned more in 2 days in this forum than in 3 months of research before.
Try the tramal, 30 to 50 drops in the morning plus a few more for lunch,that keeps you running all day and mix it with clonazepam 0,5 mg, also in the morning. Do not take more clonazepam since it makes you realy tired and dizzy. As I said before you might feel “stoned” from the tramal in the beginning, but this feeling goes away after one or 2 weeks. Start with a low dose of about 30 drops and work your way up to a level that controls the pain. You have to “play” with it and listen to your body … it knows better then your doctor
it is important to remeber to take as much as needed but as less as possible in regards to the tramal.
Hello Bellalarke
Thank you for your post and the information. pleas let me know what Dr. Honey has to say.
For how long did you have to wait for the appointment?
Do you also have problems with the occipital nerves? I am currently with Dr. Holly S. Gilmer at the MHSI in Detroit. She just cuts the occipital nerves off, if MVD didn’t help like in my case.
Unfortunately I have several neuralgias … the entire left side of the head and neck plus the GPN … carpal and tarsal tunell and something in the back.
You can get an appointment within 2 weeks (if they reply to your mails) and surgery dates seem to be available within another 2 weeks after first consultation.
She is very nice woman and seems to know what she is talking about. Actually the entire Staff at MHSI is outstanding.
I had my firs examination with her 2 days ago and am expecting the surgery very soon.
If you are interrested I can provide you with the right contact to get an appointment very quick since I am already here in Detroit.
Also check out this video about the surgery …
http://m.youtube.com/watch?v=OpRco_DPE3k
http://www2.mhsi.us/doctors/gilmer/
Keep in touch
Michael
Hello Ann
Do you know anybody that had a surgery done at the Mayfield Clinic in Cincinnati Ohio ?
thanks
mike
Hi Mike!
Sorry I didn't see your msg before. I'm now trying to remember if I know anyone who done this procedure at the Mayfield Clinic. I'll let you know about the result.
So far check this guy
http://www.healthgrades.com/physician/dr-konstantin-slavin-2xk8b
He definitely operated on the Glossopharyngeal nerve.
Ann
His email address
I think it would be great to contact our member Suzanne and ask her who was her surgeon as she says that she is greatly improved after her MVD/resectioning procedure.
Ann
Hi Mike
I got put on Dr. Honey’s list more than two years ago. I live in British Columbia, the province where he practices from.
In the meantime I choose to have MVD for TN and hemifacial spasm by a younger vascular neurosurgeon (Dr. Peter Gooderham) who works in the same department. We were hoping that that surgery might do the trick…and it was somewhat helpful for some of the TN relate issues. I went back for second follow- up a month ago with dr. Gooderham and he said for cutting the nerve it would have to be Dr. Honey and it might take six months to see him. I just about flipped but kept my cool and said, “listen, I’m living in the land of seven, and when the big pains come it’s through the roof…”. I came home feeling quite deflated and then the call came from Dr. Honey’s office with the July appointment. I actually wept with the relief.
To tell you the truth I don’t think anybody believed I had compressions of three cranial nerves until they drilled in and had a look. Lo and behold, I did. Also there’s the occipital neuralgia as well which my neurologist was hoping was “conversion” and would clear up after MVD. So basically I’m like you, total side of my head on the left is a mess. Pain also goes into neck and shoulder.
Thanks for the links to the Detroit doctors but I’m not I a position to travel and at this point am just going to hang on to see what Dr. Honey plans.
It’s been 4 1/2 years since this mess started when I woke up in the middle of the night with piercing ear pain. It’s so weird being such a medical rarity. You’re the first person I’ve chatted with who has as many neuralgias as I do. I used to hang out on the LwTN site quite a bit but not so much the last six months. After a while there’s not much left to say. I answer questions now and then, but sometimes I just feel worse when I read all the misery…
Have you had an MRI of your cervical spine done? I’m getting one on Sunday. This will be my fourth MRI, oh god, how I hate them…
But on the bright side of my life, I have a grandson who will be a year old in a few weeks. Honestly, he is the main thing that has kept me going. I will be seeing him this weekend when I travel for the MRI. Another wonderful thing is my younger daughter who lived in the east has just moved to Vancouver so she can be nearer to me. In the really bad moments I try to take my thoughts to my daughters and my grandson and feel their love. Also I have some very good friends in life who are hanging in with me through this.
I hope you get some relief soon for your glossopharyngeal neuralgia. Did it help to get the occipital nerves cut? Some days I think, oh just cut the whole head off…
I will keep you posted with my progress.
Keep Heart
Bellalarke
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Mike said:
Hello Bellalarke
Thank you for your post and the information. pleas let me know what Dr. Honey has to say.
For how long did you have to wait for the appointment?
Do you also have problems with the occipital nerves? I am currently with Dr. Holly S. Gilmer at the MHSI in Detroit. She just cuts the occipital nerves off, if MVD didn’t help like in my case.
Unfortunately I have several neuralgias … the entire left side of the head and neck plus the GPN … carpal and tarsal tunell and something in the back.
You can get an appointment within 2 weeks (if they reply to your mails) and surgery dates seem to be available within another 2 weeks after first consultation.
She is very nice woman and seems to know what she is talking about. Actually the entire Staff at MHSI is outstanding.
I had my firs examination with her 2 days ago and am expecting the surgery very soon.
If you are interrested I can provide you with the right contact to get an appointment very quick since I am already here in Detroit.
Also check out this video about the surgery …
http://m.youtube.com/watch?v=OpRco_DPE3k
http://www2.mhsi.us/doctors/gilmer/
Keep in touch
Michael