GPN Rhizotomy/Neurotomy

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Permalink Reply by Jade O. on February 13, 2012 at 7:33pm

Hey Ron,

I'm having my surgery a week from tomorrow. Im confident I have a great surgeon. He has written in several medical journals about glossopharyngeal neuralgia and Eagle's Syndrome and has performed several MVDs and rhizotomies. I am a bit nervous about getting the surgery, as I have talked to a lot of people who have no pain following their MVDs/rhizotomies, but I've also talked to those who despite have the surgery, still have pain. That scares me the most. Waking up with the same old GPN pain and a new pain from the surgery. I have had a couple of nerve blocks that didn't work and that was disappointing, so I can't imagine how I'll feel if this doesn't work. Anyway, I'm glad this website exists. I'll be posting how my surgery goes and will continue to help other people with this horrible disabling disorder, regardless if I get better or not.

Oh and just a general comment, when I say it's a process of elimination, it's not just to diagnose GPN, but also the opposite: to make sure you don't have any other disorders/diseases. I was also diagnosed with TMD and they thought I had a neuromuscular disorder. $6,000 and 6 months later, no amount of adjustments or orthodic pieces were helping me. They were actually making it worse. I also was told I had something called NICO (Neuralgia-inducing cavitational osteonecrosis). Which basically means that Holistic dentists believe you have holes in your jawbone that have low-grade infections lingering around in aka toxins. I had a $6,000 jaw surgery that was supposed to get ride of the toxins in my jawbone and the neuralgia. What a joke. When you're in so much pain, you'll do anything. I also had all my lower right healthy molars removed because there was a tight pressure pain inbetween my molars that wouldn't go away. I'm not saying do these things, but you have to be careful with GPN because it masks itself as other things: TMJ/TMD, Trigeminal Neuralgia, Sore Throat, Ear infections, ect. ect.

Obviously, I tried a lot of crazy things before I ever considered doing neurosurgery haha.

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Permalink Reply by Ron Hammond on February 13, 2012 at 7:53pm

Obviously we can all understand. Unless a person has it, you really don't have have any idea what pain really is. Good luck and let us know how things go!

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Permalink Reply by Kaz on February 13, 2012 at 11:56pm

Hi Ron, maybe I was just lucky. I got the gag reflex too but that is typical response from the GP nerve. But the one thing that I found was that local didn't have any effect on the pain, it just kept on coming and the moment the ENT touched the pharyngeal area it set off another violent round which was quite traumatic as I had the scope down my throat at the same time and with each spasm, as I call them, it would touch the area moreso and make them last longer. It was quite a horrific at the time even trying to get the scope up my nose inbetween spasms. The ENT specialist was really concerned. He is one our leading ENT specialists in Sydney.

I remember writing down why isn't the pain stopping as he had given me two large lots of local. He just looked at me grimly and said we really need to do this procedure, do you think you can bare the pain. Afterwards he said to me it was a rare neurlagia and there was nothing he could do for me. He had done his bit with helping diagnose and now it was back to the neuro for treatment options. I was already on anti-epileptic drugs at this stage with no effect on it. Didn't even take the edge of it. Instead all I got was other nasty reactions.

Prior to my ENT guy stating this my neuro had tried to rule other things such as tumours etc, but it is believed that mine is linked to my MS as I have other issues with other cranial nerves damaged. Out of curiousity if you were having attacks at the time, did you have an attack whilst in the chair? Did you find the local did zip for the pain? When I saw my ENT I couldn't talk as talking would trigger violent spasms of around a minute in length. Whereas without talking, swallowing (well trying not to) the spasms were coming regularly at intervals of between 3-5 minutes continuously. This is what my bad attacks are like, constant and consistent with timing aggrevated further from talking, swallowing, sneezing etc. Any of those reactions would ensure the spasms lasted not for a few seconds but up to a minute which these ones would stop my heart and bring me to my knees. I couldn't even cry as the motion of crying would trigger them. These attacks would last for many months at that intensity. So having the what I dub niggling attacks where I get random pain a few times a day here and there is nothing for me in comparison. Can handle those and control it from getting worse by acupuncture.

@Jade, all the best for the operation. Go in with positive thoughts. Hope it all works out and look forward to reading updates on here as to how it all went.

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Permalink Reply by Sibarna on February 14, 2012 at 12:51am

Hi all

I have been reading and following all yr comments. Am in the same troubles as u and dont know which is the right solution. Was pain free for two weeks and right now the pain is going to deep in my ear starting from the throat, but is mild and i know it will become stronger with time. I just wish i could open my head and see whats wrong? I just want to inform u that to get  relief I use a combination of accupunture/accupressure and tablets - Lyrica and Amipritlene. But am scare if one day it dont work anymore and want to prepare myself what surgery and where to go????

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Permalink Reply by Ron Hammond on February 14, 2012 at 12:18pm

My only suggestion if surgery is needed to try and go to a major medical facility with a lot of neurosurgeons and expertise, especially in trigeminal neuralgia (chances of finding surgeons with GPN experience will probably be limited).   And keep in mind that some will do MVD, others only rhizotomy.  which is better seems to be up in the air and probably just a difference in doctors.  Definitely talk to them about it.  Obviously MVD keeps the nerve alive; rhizotomy destroys it, but from personal experience, it did stop my pain.   Good luck and hang in there.  I know i just got tired of all the drugs and was to the point they no longer worked that well, which took quite a few years and episodes to get to that, but i was at the endpoint with them.  maybe could have tried others (had been on Tegretol, Neurotin (both at extremely high doses) and also Elavil).  i was just sick and tired of it and wanted to try a permanent fix.

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Permalink Reply by Mark on February 22, 2012 at 11:55am

Hi Ron,

After reading some of your post, I may need this same surgery. My pain is a sharp stabbing pain deep in my right ear (no infections found by ENT's over many years of my life). At times the pain will be below the ear and down the backside of the neck. The reason I am posting here today is because for the first time in my life this pain has been ongoing now for over two months (typically leaves in a couple weeks). Without strong med's I can not function.

Now that your pain has stopped, can you please tell me what else you feel with the 9th & 10th cranial nerve cut? Do you have numbness in your face, tongue, throat, etc.? Could you end up like some Bell's Palsy patients and one side of the face droops? I'm just trying to get an understanding of the risk involved with this Rhizotomy. Thanks so much for your information on this forum!

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Permalink Reply by Ron Hammond on February 25, 2012 at 11:33am

I have absolutely nothing happening that suggests I had surgery. At most, sometimesit might feel like the skin is slightly stretched as if I had surgery, like any surgery sometimes feel. I have had many and it is common in all. But in terms of the GNP nerve, nothing. No pain, no lack of feeling or taste, no droopyness. For the first time in a long time, feeling thebest I ever had except for. All my other aches and pains from being old and out of shape. But they all feel like a hang-nail by comparison. Good luck!

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