GPN Rhizotomy/Neurotomy

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Permalink Reply by svantate on August 11, 2011 at 2:10pm

Hi Ron,

 

I am so glad this has worked for you. I am still in the process of getting diagnosed but if I do have GPN, I would opt for surgery as soon as possible. For me, I have excrutiating pain in the middle of my throat and tonsils that changes from day to day- I mean left to right tonsil. I also have a lot of scar tissue so not sure if this is contributing to it or not. I just know something is terribly wrong with my throat and I have constant debilitating pain.

What were your symptoms before? How did you locate the surgeon to do your surgery?  Glad you are well and pain free.  -Suzie

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Permalink Reply by Ron Hammond on August 12, 2011 at 9:44am

When i was having the pain, it was in the back of my throat, always on the left side (thus, it was the left GP nerve that was causing the problem).  From my understanding, GPN is almost always just on one side.  The fact that the nerve is so close to throat is why the pain is usually located where it is.   If you are having pain switching from left to right, you need to question whether it is GPN, or at least typical GPN).  While they cut and destroyed my left-side GP nerve, i don't know if they can do that to both of them.  I live in NE OH, and our medical clinic in my town is part of the Cleveland Clinic.  My neurologist (he is not a Cleveland Clinic doctor) was the one who set me up with the surgeon in Cleveland.  And as i mentioned in my original discussion, he prefers the neurotomy the preferred choice with GPN compared to MVD.  I consider myself lucky that I live so close to that facility.  Good luck.

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Permalink Reply by svantate on August 12, 2011 at 3:22pm

Hi Ron,

 

I have a constant pain in the tonsil area only and also lots of scar tissue. It usually is on the left side but my pain can also be centered down the middle and sometimes it switches to the right tonsil. I am pretty sure it is just nerve pain and not GPN, but I am not sure, as it is the same nerve. I did receive a call from the main neurosurgeon at University of Pittsburgh who is an expert in GPN. He asked me all of my symptoms and basically said he was 100% sure I did not have GPN. He said the pain would not switch from tonsil to tonsil on any given day or hour and then have excrutiating  pain down the middle of your throat . He said you can have nerve pain for a year after a tonsillectomy and he thought this is what I had. He also said scar tissue can cause severe nerve pain. I am seeing a neurologist in 2 weeks so see what is going on. I don't know why I am not more reassured after speaking with the neurosurgeon because there is the Atypical GPN. But he said you would never have pain down the middle of your throat. He also said that for most people, GPN comes out of nowhere and is only on one side. He said the pain definitely would not feel better when eating

 

So, the confusing part that i don't understand is- isn't the nerve pain caused by the glossopharyngeal nerve no matter where it is or is there such thing as just nerve pain? My pain is only in the tonsils- either the right of left tonsil- that is the scary part because GPN affects the tonsils.

 

Was your pain constant or was it episodic and happened every once in a while? While I am going to see a neurologist, you think I should feel a little better with what the neurosurgeon told me? He told me I would be the first case with my symptoms. But if there was any nerve damage- couldn't that cause the pain to be anywhere? I guess I am confused between the glosso nerve causing pain and GPN. I have been on Gab and not a lot of relief. Look forward to your response. -Suzie

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Permalink Reply by Ron K on September 19, 2011 at 9:32pm

Hi Ron, (from another Ron)

Glad to hear your procedure went well.  I also had a resection of my 9th nerve and partial on my 10th.  I'm in Vancouver, BC, and my neurosurgeon was also adamant that mvd was not the right approach for GPN.  My procedure was Nov. 19, 2010.  So I'm actually 10 months pain free today.  I too had a bit of a headache, off and on, for a number of weeks after.  I have a slight slackness in the lower rear of my throat, on the affected side, but it's nothing that I notice unless I really focus on it.  I'd say the strangest part since surgery, has been just trying to get back to being my normal self.  I had bad pain for over 10 years and the last 3 were brutal.  I think I became a bit of a curmudgeon.  I also think I've had a prolonged reaction to the general anesthetic causing me to be maybe a little depressed for some time.  I think I've only been nearing 100% in the last 2 or 3 months.

Anyway, glad you've gotten relief.

Ron

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Permalink Reply by Ron Hammond on September 23, 2011 at 10:21am

Ron

 

so glad to hear all this from you, especially the comments about your surgeon and his thoughts on MVD for GPN.  at least it tells me it wasn't only my surgeon who thought this way.  so far i have still been ok, although it has only been a few months.  i wonder how my fall and winter will be knowing how dull on drugs i was for the past year.   i expect to have more energy which will be different.  still should have done it years ago.

 

the other Ron

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Permalink Reply by Ron K on September 23, 2011 at 11:50am

Quite suprised how few on here, and on the other facebook GPN support forum, have had the resection or are aware of it.  Not sure why it seems to be so rare.  I've consistently heard of far worse repercussions and poor success with the MVD. 

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Permalink Reply by heidemt on September 23, 2011 at 12:59pm

Hi Ron - could you tell me who was your surgeon at the Cleveland Clinic?  Thanks.

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Permalink Reply by Ron Hammond on September 23, 2011 at 1:54pm

my doctor up there was DR. Joung Lee.   I think he is Filipino, but i think he was born and/or at least raised in U.S.   no accent what-so-ever.  He was great as well as one of his primary nurses that i worked with.

 

good luck

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Permalink Reply by Denise on October 16, 2011 at 11:15pm

I am so glad to hear you are doing better.  I have been pushing out going back to the neurosurgeon.  I wanted to give the NUCCA corrections time to determine if it's helping or not.  I was feeling a little better two weeks ago but seem to be right back where I have been for the past year.  I am not so sure that it is, or was any better.  I think that I have become use to hurting and expect no less.  Thank God I have been able to continue with my everyday duties.  I do hate taking the pain meds.  I have moments where I don't remember actual conversations.  It has to be due to being under the influence of pain meds.  My life and job do not allow me time or free passes because of not remembering something.  So far I haven't forgotten anything serious.  I do hope to hear more good news from you in the future.  It looks as though I am heading in the same direction as you.  Continue to get better!

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Permalink Reply by Ron K on November 16, 2011 at 11:07am

How are you doing now that we're well into fall weather?  Don't be suprised if your energy is still low.  It took me many months to get back to full energy.  I've since been reading about general anesthetic and it seems that it is not uncommon for it to take 6 months or more to recover from the post anesthetic fog.  I'll be one year post op on Saturday November 19th and still pain free! 

Take care.

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Permalink Reply by Kaz on November 19, 2011 at 9:57pm

Wow this is impressive about the surgery!! I'm from the land down under - Australia and a bit of a rariety down here having GPN. For many years it went undiagnosed until I started having massive attacks which went on and on for months relentlessly with no reprieve. It wasn't until the ENT specialist sprayed my throat with local anaesthetic twice and the pain still kept coming that I realised this is bigger than Ben Hur!! He then proceeded to gently touch the area and I went through the ceiling and had a massively long spasm that knocked the wind literally out of me!

I get it right-sided only in the throat and sections of my tongue. It started with the throat, then graduated to the tongue after a few attacks. I used to get niggling attacks constantly over the years where I'd get burning or stabbing but it was intermittent and didn't affect me as much as the big attacks in recent years. Had seen my neuro and ENT about it but the ENT couldn't see anything wrong!! That was approx. 10-12 years ago. It took until 4 years ago to get diagnosed...

 

I still have to be careful what I drink and eat as certain things can trigger it :-(  but mainly I have it under control by means of acupuncture. It's the ONLY thing that has worked for me.

 

Sugery was mentioned by a neurosurgeon on my last attack as I end up hospitalised as so severe. They do the IV steroids and months of oral steroids in a vain attempt to try and settle it aong with anti-epileptic meds which I'm sure you've all been on that same path. But when surgery was mentioned and also the fact they had never done this type of sugery before and that it was extremely risky I was like no way you are touching me. I want a surgeon who knows what he is doing. Seems with the US being bigger you have access to surgeons who have done these procedures.

 

I'd love to learm more about what you actually had done. I'd also like to know what MVD is? We have limited info here from the medical side as I am constantly told I am a text book case; other than reading about GPN in a text book they haven't come up against someone like me. Plenty of cases of TN but not GPN... I actually had on my last emergency admission the whole of emergency in a panic. My BP was high 200's over high 100's from the constant pain. Couldn't talk, only could write inbetween violent spasms. Head of emergency was absolutely panic stricken because I couldn't talk and he couldn't find any information on GPN and what to do. His own words 'I can only find one paragraph about it in the Merck online site, which tells me bugger all. I don't know what to do!! I have never seen this before...' Leaves one with a lot of confidence!

 

I should note in my big attacks that the pain comes every 3-5 minutes and last anywhere from a few seconds to nearly a minute. This is without doing anything. If I am to swallow, or attempt to swallow a little water the pain comes earlier. I was in such agony and coulnd't even cry as even the motion of crying sent waves on continuous spasms. My big attacks last between 4-5 months at this rate. I end up a shadow of myself because I cannot eat properly. Lost around 14 kilos last round and there wasn't much of me to begin with. My intermittent ones are now a walk in the park for me but when they niggle I address it straight away with more acupuncture as I do not want any other big attack.

 

I have found that dry weather is worse for me too. Do you find the same thing? If my throat becomes too dry the pain will trigger.

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Permalink Reply by Ron K on November 19, 2011 at 10:22pm

Your description of your condition sounds very much like mine, except mine was on the left.  For me it started over 10 years ago with the occasional sharp pain in my throat and then months without anything.  Slowly the pain stayed longer and the pain free times got shorter until about 2 years ago when I hit a point of no more pain free times.  My pain management specialist suggested a neuro surgeon she knew who had provided relief for several of her patients that had reached a similar point as me.  I live near Vancouver, British Columbia.  My neuro surgeon, in Vancouver, said I was his 8th GPN surgery in his 20 years as a brain surgeon.  So While it's rare, it's hard to imagine that the major cities in Australia don't have specialists with some experience with GPN.  My surgeon does not recommend the MVD (micovascular decompression).  He feels that there is significant work in exposing the nerve, to move it from arteries, wrap it in teflon and then buffer it with sponges, and that this often results in more harm than good.  He does a resection of the GP nerve and a partial of the vagus nerve.  My surgery was a year ago and I'm pain free with only a slight residual slackness in my throat on the affected side. 

 

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