How much do you put up with before docs choose surgery?

I'm just wondering how long everyone waited before their doctors chose surgery? I have had the GPN pains for several years now but before the were only about 1-2 attacks per month and I didnt even know what it was. Now they are hundreds of times per day all day every day. Its aweful and carbamazepine seems to lessen but does not take care of the pain, especially when any type of wind hits my ears.

I've been seeking diagnosis and treatment for over a year. I've gone through more specialists than I can count. Carbamazepine makes me sleep constantly.

Dentist to endodontist to ENT to urgent care to ENT to urgent care to cancer ENT to neurologist... then...

meds to tests to more meds to a diagnosis and more tests to a pain management doctor to a sphenopalatine block (yuck) to him wanting to do Botox but my insurance won't authorize it, to now being referred to a surgeon. I'm exhausted.

I had it off and on for 6 years, most of the attacks stopped after 2 months of misery during that time, and I would have months or years of no pain, and then last year it started up in April and never went away, getting even worse for a total of 6 months of misery, with triggered pain every time I ate, sometimes just coughing, laughing, talking, sneezing, stretching or just washing my hair or brushing my teeth would trigger the 5 to 10 minute attack, so I had to do something or I knew I would starve to death so I went to see Dr. Fukushima in Raleigh NC a year ago, and as of October 25, 2012 I have had zero GPN pain. You need to speak with a neurosurgeon and at least find out your options. My thoughts go out to you since I know exactly what it feels like...

I have suffered with the pain for over 15 years. I have had the surgery and was one of the unfortunate ones that it didn't work on. The surgery was a breeze, as long as you seek a surgeon that is very qualified to do this specific surgery. One who has done this many times before and has had success with it. I realize there will be patients like me that the surgery will be unsuccessful but my doctor has many other patients that it has. I believe a great surgeon is your key. Of course a proper diagnosis is essential too. Getting diagnosed with GPN can often take years unfortunately as in my case and many other people I have spoken to and it seems you weren't diagnosed yourself for awhile. I am still in much pain but hope one day the medical world or pharmaceutical world will catch up and find something for me and others. We really believe that perhaps had I received a better diagnosis earlier and had the surgery years ago before the nerve was so damaged my end results might not have been the same. Who knows? Don't be afraid of the surgery, just check out the surgeon and make sure you go to one who is experienced with this specific procedure. Good luck. If your near New Jersey I can give you a recommendation if your interested.

I have had the pain off and on for about four years. Never sought help, always chalked it up as something that would pass, putting myself on the back burner while caring for family members. The pain worsened last year and I knew I couldn’t take it anymore. Started at the eye Dr, then dentist, the ENT. Many appointments and tests later, I was referred to my neurologist. More appointments and tests,finally diagnosed April this year. I have been through at least eight different meds and combinations of meds with either no relief or horrible side effects. Just referred to Mayo Clinic today to seek out a surgeon. I feel it may be my only option. I have used all of my FMLA time and am in jeopardy of losing my job but my health and sanity are my priority right now. Once they are in order, I can find another job.

I suggest you try acupuncture first. I had put a list of points on your post of new symptoms. In regards to pain, because it is neuropathic pain it is difficult to control. Carbamazepine is meant to try and block the pain messaging side of things that is how it works. So if it was working you should feel reduction in pain. It works in some people and not in others. In some it can actually amplify it more. Because it is neuropathic pain that is why no other pain killers will work, because the pain is coming from the nerve itself. Other pain killers can help make you drowsy so one can rest, as it really does take it out of you when in constant severe pain...

Surgery is a BIG call as it comes with many risks. I have been there a number of times where the pain is relentless all day every day. I had to be on pethidine, tramal, fentanyl, panadol and valium in order to try and get some sleep. My last attack lasted just over 4 months. I learned how to eat during this time as I was not going to spend time lying in hospital (like last time) on a drip. What I discovered was after the longer spasms (that's what I call them) from swallowing food, it would take a minute or two before the brain registered I was swallowing again so I would quickly eat (only liquid foods) in as fast as I could before the next wave. It would take me an hour to have a cup of soup.

Another trick I also learned during this last attack was to drink a little local anaesthetic gel (can be bought from chemist), it numbs the tongue and throat. This actually made it easier to eat (well really drink) my food. So an hour became more like 20-30 minutes. So maybe you could try that. Only stick to liquid foods too. There's no way I could ever eat anything normal during attacks or I'd choke. Swallowing function will trigger an attack so it is easier to swallow liquids than solids. Also talking etc., as you know will trigger it. So it is better to try not to aggrevate the beast by talking. I didn't speak for nearly 2 months and had to use my ipad to communicate during this time - frustrating but my GN is so severe that I have no choice. I'm back having acupuncture now and all has settled well. In regard to your ears, keep a scarf around your neck and cover your ears when out.

I had the pains from GPN in apx. 7 years. It was devided i 3 periods. The first period lasted at about 2-3 months, with very short attacks when i swallowed food with my head turned. I didn´t know what it was and my doctor didn´t know either. The second period started 3½ year ago. I went to a neurologist who tryed to find out what my diagnose could be. After at about 1 month he sent me to an MR scanning. After the scanning he sad to me that he was almost sure that i had GPN.

He has been a neurologist for more than 40 years an he have never befors had an patient with GPN...!!! I live in Denmark, a very little country with only 5½ million people. So there is not many GPN-patients here.

My neurologist sent me to a neurosurgeon Dr. Peter Roschad who is an specialist in GPN. He set me up to an opration. One week before the opration my second period with painattacks ended and the neurosurgeon recomended me to drop the operation because no one could know when/if the pains would come back.

3 years late in february 2013 the painattacks slowly started up it´s third period. I emediatly started treatments at an acupuncturist with good results. It lasted 3 months then the pains came back inspyde of the acupuncture and i went to my neurosurgeon. I was set to an opration on the 16. of July. The painattacks was up to the operation getting worse and worse. A week before the operation i suffered about 10 attacks an hour and i was hospitalized in 2 days getting loaded with Fenytoin. It took all the pains but i was totally doped and could not work, drive car or anything else.

It is now 5 weeks ago i was having my opration and i´m still recovering. I have suffered with some sideeffects: Parralyzed left voicelip causing swallowingproblems, voice problems, dizzyness, dobbelvision, reduced hearing in one ear ect ect... BUT: I have absolutly no GPN painattacks... :-D

Since the opration i have been seeing therapists who is working on my sideeffects with positive results: the dizzyness and my dobbelvision is gone. My hearingproblem is almost gone. My swallowing and voiceproblems are slowly getting better.

I am now starting to work again tomorrow... :-)

Glad to hear you're starting to feel better Brian. You can have acupuncture to help with the swallowing side. Some good research out there to demonstrate it really helps, so maybe do that in conjunction with your other therapy to quicken it up.

I have around 20+ attacks an hour with mine when it is bad. Just came out of a doozy of an attack. Out of curiousity which operation did you have, and did you have Eagles syndrome or pressure on the nerve causing this?

Hope everything returns to normal for you quickly.

Hi Kaz.
I had a MVD-surgery (micro vascular decompression) caused by an arterie around the 9. and 10. craniumnerves…
I have already thought about trying acupuncture for my swallowing problems… :slight_smile:
20+ attacks an hour…!!! OMG…! I really feel for you, and hope for the best for you in the future. I can defenately recomend you to get the surgery. It’s rough to get through, but compared to the horrible pains, it’s absolutely worth it…
Best hopes for you…

Hi Brian,

unfortunately when there isn't a physical reason for my GPN like your artery, or Eagles syndrome etc., so it cannot be operated on. Mine is caused from Multiple Sclerosis (MS), so that actual part of the brain stem has a small lesion. This cannot be operated on.

With MS is it very unpredictible and we go through periods of inflammation in the central nervous system (CNS) which is the brain, optic nerve and spinal cord. We have no clue as to what part of the myelin sheath (this is a fatty type of insulation that wraps around our nerves to protect them. Think of it like the outer plastic of an electrical cord with the wires wrapped inside) will be attacked in flare ups, and old lesions can become reactive again which is what happens in my case. I just have to try and keep inflammation down in my body by diet, supplements and acupuncture to keep the CNS quiet.

I do not want to end up with this permanently, which can happen if the inflammation keeps attacking the same area, as what happens with MS is the body natural defence system (white T cells) thinks the myelin is an invader and attacks it. Each attack leaves more of a scar and that in itself with me is what keeps getting irritated. However, it could be worse as it can keep attacking until it destroys the myelin and goes straight to the nerves leaving them bare which means permanent problems day in/ day out that can never be repaired by surgery, nor does myelin reproduce itself enough to repair damage on its own. MS is an insidious disease for which a cure needs to be found...

So for me when I have these big attacks I am also dealing with other issues with MS, with my eyes, legs etc., depending on where it is attacking, so it lays me out for months, and then takes further months to get over it although never fully recover in some aspects. Just had another MRI on Friday to see if the inflammation has settled and what residual damage I have been left with from this attack. Hopefully no further damage - fingers crossed.


I am assuming you also were experiencing blood pressure problems too as the vagus nerve (cranial X) was affected? With my GPN I actually have a rarer form called vagoglossopharyngeal neuralgia as my vagus nerve is also affected which directly affects my blood pressure and heart rate during attacks.

In regards to surgery I am so glad you are seeing the benefits. I suggest to anyone who has GPN to ensure they have CT's, MRI's etc., to rule out the cause as sometimes it can be operated on, but other times it cannot but one needs to know what the actual cause is first before exploring surgery.

Hi Kaz

I´m so sorry for your situation.

It´s impossible for me to put my self in your place. I simply don´t know what to say to your situation. I can only say that i hope with all my heart that a surgeon somewhere, some day will find a cure who will be able to help you and make your life a lot easier....

I sent you my best wishes and hopes for the future...

Brian

Kaz said:

Hi Brian,

unfortunately when there isn't a physical reason for my GPN like your artery, or Eagles syndrome etc., so it cannot be operated on. Mine is caused from Multiple Sclerosis (MS), so that actual part of the brain stem has a small lesion. This cannot be operated on.

With MS is it very unpredictible and we go through periods of inflammation in the central nervous system (CNS) which is the brain, optic nerve and spinal cord. We have no clue as to what part of the myelin sheath (this is a fatty type of insulation that wraps around our nerves to protect them. Think of it like the outer plastic of an electrical cord with the wires wrapped inside) will be attacked in flare ups, and old lesions can become reactive again which is what happens in my case. I just have to try and keep inflammation down in my body by diet, supplements and acupuncture to keep the CNS quiet.

I do not want to end up with this permanently, which can happen if the inflammation keeps attacking the same area, as what happens with MS is the body natural defence system (white T cells) thinks the myelin is an invader and attacks it. Each attack leaves more of a scar and that in itself with me is what keeps getting irritated. However, it could be worse as it can keep attacking until it destroys the myelin and goes straight to the nerves leaving them bare which means permanent problems day in/ day out that can never be repaired by surgery, nor does myelin reproduce itself enough to repair damage on its own. MS is an insidious disease for which a cure needs to be found...

So for me when I have these big attacks I am also dealing with other issues with MS, with my eyes, legs etc., depending on where it is attacking, so it lays me out for months, and then takes further months to get over it although never fully recover in some aspects. Just had another MRI on Friday to see if the inflammation has settled and what residual damage I have been left with from this attack. Hopefully no further damage - fingers crossed.


I am assuming you also were experiencing blood pressure problems too as the vagus nerve (cranial X) was affected? With my GPN I actually have a rarer form called vagoglossopharyngeal neuralgia as my vagus nerve is also affected which directly affects my blood pressure and heart rate during attacks.

In regards to surgery I am so glad you are seeing the benefits. I suggest to anyone who has GPN to ensure they have CT's, MRI's etc., to rule out the cause as sometimes it can be operated on, but other times it cannot but one needs to know what the actual cause is first before exploring surgery.

Julie:

GPN can affect heart rhythm, from what I read on a google search of "glossopharyngeal neuralgia and heart rhythm". Print out some of the articles and bring them to your doctor or surgeon. You need to have it checked out before you have a problem. You might need to wear a Halter monitor (a recording device for your heart rhythm) to see the affect your GPN has on your rhythm. Good luck!

This is some of what I posted on another discussion regarding my decision making:

I am headed for a MVD in November and will post updates as soon as I am able. Having thoroughly researched this and had three medical opinions, I am fully "all in, "spiritually, mentally and physically (trying to exercise...keep lungs healthy and clear). I'm updating various items such as my will and advanced directives because that's what responsible people do, not because I am particularly concerned. I kept a log and spreadsheet of my pain levels (and some jottings of the meds) so that I was as fact-based as possible on my decision making. (You tend to be very emotional on high pain days and the meds can make you foggy, so I wanted a clear-headed decision-making process.) I found I was in untenable pain (level 8 with meds) on 40 percent of the days and barely in-check pain another 40 (level 4-7), and only 30 percent of my days were pain free. For me, the level of the pain the last two years has been the tipping point. I have a fairly high pain tolerance and a decent pharmaceutical regimen (tramadol day time and aleve or hydrocodone at nights) so I had been able to deal with this for years. But the constant level 8s have robbed me of the quality of life I want, so the trade-off for risk is worth it. My doctor says he'd rather operate on a relatively healthy 58-year-old than have me try to tough it out for years on end and ask for surgery at a later date. For me, it's time to do it!

I chose surgery at 58, six years after diagnosis. Even with the advanced techniques using very small openings, it is still a craniotomy. I can’t imagine going through this at 65. And I feared the “Blue pill vs surgery” decision being made for me. Had my doctors been supportive of MVD early, I would have done it at the beginning.
Nerves undergo permanent damage from pressure which becomes less reversible with time. I have my life back, the past 2 years have been a blessing. I wish you well on your journey and a complete pain free recovery.

Thank you friend across the miles.