Recently Diagnosed Glossopharyngeal Neuralgia

General General TN & GPN (Old Site)
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I have been dealing with one sided throat pain and have bilateral palatal tremors. The right sided throat pain, i would have sharp pain or a constant burning pain when speaking. Also when i eat hot food or drink cold food I have this odd sensation feeling that does not feel normal compared to the left side of my throat. Went to a neurosurgeon for an opinion as he works in the same hospital my mother does and he confirmed based off my symptoms that it is glossopharyngeal neuralgia. Then after he told me that we looked over my mri scans and he said that I have a blood vessel pressing on my glossopharyngeal nerve on the right side of my head and was pretty upset that the radiologist never picked it up. The neurosurgeons name is Dr. Ken Casey and the hospital he works for is in Trenton, MI. He worked with Dr. Janetta over at the University of Pittsburgh who developed the MVD procedure. Dr. Casey told me that virtually no medication will help glossopharyngeal neuralgia and that the only way for my pain to go away is to do the MVD. He also said that the palatal tremors could eventually go away with time as the palate involves the glossopharyngeal nerve. I was hoping to hear from peoples perspective on this topic and advice from those who actually got the MVD and their outcome after the surgery. Im 23 years young, recently graduated college, and have been dealing with this pain since May, 2013. My mother is terrified of me doing the surgery, but i told her there is going to be a point in time where the pain is going to take a toll on me and I say enough is enough. Its hard for others to make comments about my pain when they are not in my shoes to feel what its like.

Tony

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How fortunate that you saw Dr. Casey, tjones. I know the surgery brings relief to many, and I hope our members who have had MVD will share their experiences with you here. Best wishes!

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Hi,
I am a bilateral GPN patient. I had an MVD done on the left side last year. It made me almost pain free; I get a twinge now and then. I just had the right side done; I am being released today. I had some major problems with the GPN nerve and the recovery will be a little slower. I am being sent home home with a feeding tube; this will be temporary.Had collagen injection in vocal chord yesterday to plump it up and make it stronger. there was an immediate improvement just as there was when I had the left side done. Bottom line, I am so much better for doing this and I know I will be back to normal soon. the tests on the GPN nerve shows it is like in a sleeping state but tests indicate all is normal. you have to make the decision; let no else’s concerns interfere with whatever decision you come to. These are difficult to weed out but in the end you will know which course you will take. Best wishes.

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Hi Tony -

I'm sorry you are experiencing this. I successfully had MVD surgery in March 2013- but only after trying other medical routes first. I would also consider seeing a Neurologist as well (a Neurosurgeon naturally wants to fix with surgery). First the first years of my disease, I tried several pain medications that did give pain relief. You'll probably see around on the site, but generally these fall in the class of anti-seizures medicines that act as a side effect to calm the nerve. For some of us the side effects are tolerable and for others they are not. But I think it is worth investigating as there are some that receive pain relief for many years with this route.

My neurologist also worked with me to see an ENT and the ENT actually gives me periodic nerve block injections in the GN nerve (it is near the skin at the back of the throat.) With the medicine, the block would help me be reduced pain for a few months at a time. The block was no more difficult (in the skilled hands of the ENT) than receiving a Novocain injection before dental work. This also had the side effect of confirming the diagnosis - since it took the pain away for a while - my scans weren't as clear to confirm the problem.

After 2 years, my pain was continuing to get worse and I did decide to finally seek out help from a Neurosurgeon. The neurosurgeon did tell me that he did mostly Trigeminal Neuralgias (more common) and that the improvement for the GN nerve is less successful than for the TN - but I decided to go through with it. From my surgery, they actually decompressed 3 nerves and I had a great amount of relief. I still do have to manage some ongoing pain with nerve injections - but that is now enough after the surgery.

Good luck on your journey - and keep asking questions. I agree that you don't want to rush to surgery and it doesn't sound yet as if you have exhausted the non-surgical medical options that are available.

-Jessica

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Dear Tony,

I am so sorry to hear that you are experiencing this pain at such a young age. I, myself, wasn't diagnosed until I was 43 yrs.old and I am now 50. I've opted for the use of medications for my pain but everyone is different. I disagree that meds don't work however, it is true, that some become intolerant of the benefits of these different medicines. All that being said, my neurologist prescribed Tegretol and Cymbalta, along with recommending the non or minimally invasive Gamma Knife surgery. This procedure is usually performed more so on patients with Trigeminal Neuralgia, a similar condition. My husband and I decided that I would have this procedure and although it was not hugely successful, it did seem to lessen my pain by enough of a margin. Of course, that being the case, I have felt it to be well worth it. In the future I may consider another Gamma Knife surgery and hope for a better outcome. Again, I do believe it has helped me, along with the meds, as I am not ready (and may never be ready) to undergo brain surgery. Just an FYI about one of my concerns regarding the MVD surgery and please, I would encourage you to investigate this yourself as medical science gets better and better all the time. When I was inquiring, I was told there is no guarantee (just like in life) that there will be any relief with the MVD surgery, or if it was successful, that the pain could resurface after just a few years. Well, unfortunately, at that point in my life, that didn't seem good enough and I decided I wasn't ready for the risk of brain surgery, however again, I encourage you to talk to your doctors and get their opinion.

Tony, I wish you the best of luck on this journey of yours and I hope you eventually find permanent relief or at least relief that you can live with!

God bless!

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I haven't had the surgery as mine is due to MS. However, if it is a blood vessel the only resolution is surgery. Believe me you don't want to live with this if you don't have to as it can get a hell of a lot worse. However, that is just my personal opinion if mine was a blood vessel, I'd be in there tomorrow getting it fixed... Only because my attacks are so severe when they strike.

Doesn't surprise me about radiology report. They level of reporting is atrocious now. So many things missed. Did the neurosurgeon show you the blood vessel, as he should have been able to point it out if it was seen.

There will be plenty of people on here who can offer you good advice as quite a few have had MVD. :-)


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Dr. Casey is a leader in the medical community for Trigeminal Neuralgia. You are very lucky to have seen him and to be under his care. I am facing the possibility of having GPN but was diagnosed with ATN over a year ago.

I am so sorry that you are facing all of this and at such a young age.

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Dr. Janetta is the expert and Dr. Casey worked under him, so if and when you decide to undergo surgery, you have the best of the best. I wanted to go to Pittsburgh for my procedure, but the attacks were too severe to put it off any longer. I was blessed to find a competent and compassionate neurosurgeon in the city near me. I had suffered for 7-8 years on and off before conceding to the procedure. In the beginning I was dead set against it. I had hoped it would go away and never return. I wonder for how many it actually does that, go away and never return? I opted against the Gamma Knife procedure which is minimally invasive, but damages the healthy nerve by shrinking it, and only last about 10 years when the procedure may need to be done again.

You are very young. I am sorry that you are dealing with this condition. With any surgery, there are risks. My neurosurgeon was not quick to put me on a table. He suggested an rx to my pain management doctor, Trileptal, and that worked for two years. The best of any medication I had tried and with the least amount of side effects. As you know each person is unique and what works for one might not for another. Once I had break through pain, I returned to NYC for tests. Like you I was fortunate enough that the vessel and nerve appeared on the films to be in conflict. That conclusive diagnose is not true for many. That helped me make my decision. Still, the post surgery journey was long. I was fortunate enough to be out of work seven months and truly heal. (That will not be the norm. For me, I lost my voice and couldn't work without it.) I still consider myself fortunate. My voice returned. I still have my job. Best of all I am Pain Free! Research as much as you can. Keep a journal on the meds you take and the side effects. I will be praying for clarity and relief for you.

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Sadly with all medications for neuropathic pain they tend only work for so long and then become ineffective. Some people they work longer than others. So it generally ends up a cycle from one to another finding one that works best for you. Each person is also different to how they tolerate different medications as well.

You are lucky that your blood vessel shows on MRI as many people have no true indication of cause. Surgery is a very personal choice as many factors need to be considered. Only you can make the decision but only do so when you have researched and asked all the relevant questions so you can make a well informed decision on the best approach for your situation. Find out all options and work out which is more suitable for you. That's the best advice I can offer on surgery. By the sounds of it you are in the right hands. :-)

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i had the procedure done on jan2 2014, i had throat pain very bad, the procedure worked great on me no symptoms since , i recommend i.t no medication worked for me

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I would just like to ask all of you who had this operation, how severe was your GPN. Could you eat and talk?? Or are we talking about twinges on and off throughout the day versus constant 24/7?

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HI There,

Hope your day is going well. I have several post on here about the surgeries that the famous Peter Janetta did on me. All three were unsuccessful, and the third one put me in ICU for two days. They have no clue as to what happened, but they cut the 7th cranial nerve I think it is, that is the nerve responsible for hearing, balance, and basically coordination on that side of my body, which was my left. My pain originated in my throat and left ear after a hysterectomy. I awoke with a bad burning pain in throat and left ear. No one knew what it was until I saw a Dr. TEW IN CINCI who told me that it was untypical glossopharyngeal neuralgia, it took me four years to get that Diagnosis, and I live right outside of Louisville. There was no one here, doctor wise who had a clue what pain this was, but I had a friend tell me she had trigeminal neuralgia, which by the way, I now have that since my last and final MVD. Dr. Tew doubted the regular MVD would help due to it me atypical, in other words my symptoms were all the time, for three months, then off two months, on four months then on three months, until one day it never went away. The pain intervals kept getting closer and closer with little time of having no pain in between. I knew I had to do something, so the same friend who told me about her trigeminal told me also about Dr. Peter Janetta, and I was quite impressed by him. I do not think he does these surgeries anymore, if he does, he should have retired from this before I had my first MVD by him. He has many doctors helping him both in and out of surgery, which now I think since he was teaching this procedure to so many, he may have allowed others to partake in this surgery. He was at a point where he walked with a cane, and couldn't stand for very long, and these surgeries can be from four to five hours. I think if you have been diagnosed with typical glossopharyngeal where the pain comes and goes, only lasting minutes, then the surgery is what I would consider. If you have a constant burning pain that last days on end, a shocking, freezing, burning pain, that no meds help, then it is definitely worth having ONE try at surgery. If your pain last as long as a day, I'd ask about this pain being atypical, therefore Dr. TEW was correct when he informed me this surgery would not work, because it didn't. I now have pain, near my lips, into my mouth, tongue, cheek area all on the same left side, and I am not sure which pain starts first, it seems to all begin at once. Maybe this is common? Now when I awoke from my third surgery, the left side of my face also was paralyzed, causing me to have problem up to today with sight out of my left eye. The eye specialist I see had to put a weight in my eyelid, since after they cut the nerve my left eye never closed all the way, causing it to dry out, causing pain, and irritation. I am now legally blind in my left eye and before my last surgery I could see fine out of that eye having the same 20/15 vision as my left eye, and of course my left side of my face was equal to the other. Today I have a smile that is way off, lol and one side of my face is dramatically different. I hope you do your research before any surgery, and maybe get three different neurosurgeons who do these procedures to evaluate you for MVD. I think if all three agree, then you have to decide which one, but take in account and ask questions as to why one may and another would not consider this surgery. There are many neurosurgeons that today do this very simple, "I might say" procedure, because my first two were, they just did not relieve the pain. It is amazing how many doctors do this MVD today, considering when I was first diagnosed in 2006. We have a neurosurgery group here in Louisville that do many MVD's, it just amazes me, and they are on one entire floor of one of our newest hospitals. I know I am rambling, but there is much to consider. Good luck with your decision, and let me know what you decide or what three doctors you've considered getting an opinion from? Hope your pain is helped now by some meds, at least for the short term. Hope you are getting a little relief. Please KIT, and keep all of us posted!

Kim

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Hi Tony

I´ve had GPN in 7-8 years. During these years it came to me in 3 periods and each period lasted 2-3 and at last up to 5 months. In these periods with painattacks i couldent eat, swallow, drink, talk or even turn my head without having a horribel pain in the left side of my throat. The pains can best be described as stabbing or powerfull/painfull electric shocks. Each attack lasted between 10-40 seconds.

The last period lasted 5 months (february-july 2013) and the pains got worse and worse. My biggest fear was that the pains would get permanent... so i contacted the neurosurgent who had diagnosed me a couple of years before.

14 days later july 16. 2013 i was having my MVD surgery. The neurosurgent told me that when he was operating, he found that the bloodvessel not only was pressing the 9. craniumnerve (GP) but also was totaly wrapped around the 10. craniumnerve. So he had to fix that too.

One month after the surgery i was back at Work as a truckdriver.

I´ve had some sideeffect : parralyzed left voicecord (9. craniumnerve), parralyzed throat muscles (10. craniumnerve), weightloss, hearingdisabillities, visioninterruptions. Today all i have left is the parralyzed throat muscles and that is beeing well taking care of by therapists who is trying to get them started again.

Most importent: I HAVEN´T HAD A SINGLE PAINATTACK SINCE THE MVD-SURGERY.....!!!!!

All in all, if the pains ever come back, i woulden´t hessitate a second to get a new MVD-surgery... inspyde of all the sideeffects....

I hope the best for you

Brian

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I had sharp stabbing left tonsillar pain with extreme spasms lasting 5 to 10 minutes every time I ate, laughed, coughed, sneezed, brushed my teeth, even wiggling my tongue.



I saw Dr. Fukushima in Raleigh who did MVD in Oct 2012 which cured the problem nearly 100%, immediately. He saw a vessel pressing on the nerve on MRI.



The recovery for me at 58 was pretty rough but now nearly complete.



I would do it again if the severe pain came back.