Questions as I am new to the board

21

Hi Kara,

I met another friend who is going through the same thing. We have been in constant contact and have similar symptoms. We both had tonsillectomys and are both really concerned that there may have been nerve damage. I would think that is the same glosso nerve that would have been affected. I keep calling every day to get in earlier with the neurologist and want to find another ENT. When my pain is in the middle it is the worst, but not as bad as when it is through my tonsil area. I took 2 Gabs this morning so we will see if it helps. I hope to God there was not nerve damage. Like the neurosurgeon mentioned he did not think it was GPN, but does not mean there could not be some nerve damage involved. No, I am not going to think like that. It is going to go away :) How were you finally diagnosed by the way? Did you ever get your pain in your tonsil area? Hope you are having a good day. -Suzie

22

Suzie ~

The ENT suggested I had Trigeminal Neuralgia, (more of a facial pain) because I have having pain in my sinus and nose area, and then by the time I saw the neuro it had moved to my tonsil area...and also my ear area. So ENT thought it was TN, but sent me on to the neuro. By the location of the pain, she diagosed me with GN....and said, "For some reason, one of your cranial nerves is irritated" Remember, it came out of the blue, after suffering from a cold.

In all of the Internet info and literature I could find, more often than not, they cannot find a cause for it. In your case sounds like the cause was the tonsillectomy. I would try to be patient(I KNOW IT's HARD) but give it some time and then follow up with your docs.

Good luck today...and don't hesitate to write back!! Kara

23

Hi Kara,

Thank you so much for your support and I am so glad your throat pain is gone. It gives me hope. Well I had pharyngitis for a long time/throat infection and my tonsils were really infected. Then had to have surgery because my throat was so bad. The one thing the neurosurgeon who called me said is that 100% if you have GPN, you would not have pain switching from tonsil to tonsil and he said it is a stabbing episodic pain. I never had that before and I don't have that now. He also said you would not have pain down the middle of your throat which seems to be where most of the pain is now. He really said I would need to give it a year, which is about 5 more months, but the pain seems to be getting worse not better. How long does it usually take for the Gab to work? I seem to be getting some relief now. I took two pills this morning and it seems it takes a couple of hours to kick in. I just want the test to see if I have GPN as fast as possible. So, I have not had a normal throat in almost 2 yrs. I just want my throat back :) Thanks again for being there during these hard times. -Suzie

24

Hi Kara- So you said your pain was mostly on one side or was it down the middle of your throat? I know there are a few people on here who have constant pain. It seems Katherine may have similar pain to me- in her throat and tonsils. I wonder if her pain is just on one side. Anyway, I have taken 4 Gabs today and it seems to help but I can still feel the pain and it makes me really tired. I imagine your body adjusts after a while. How long was it before you went into any remission. Also, do you need to take a nerve medicine in order to go into a remission? Just curious. Hope you are doing well. -Suzie



Kara Wilson said:

Suzie ~

The ENT suggested I had Trigeminal Neuralgia, (more of a facial pain) because I have having pain in my sinus and nose area, and then by the time I saw the neuro it had moved to my tonsil area...and also my ear area. So ENT thought it was TN, but sent me on to the neuro. By the location of the pain, she diagosed me with GN....and said, "For some reason, one of your cranial nerves is irritated" Remember, it came out of the blue, after suffering from a cold.

In all of the Internet info and literature I could find, more often than not, they cannot find a cause for it. In your case sounds like the cause was the tonsillectomy. I would try to be patient(I KNOW IT's HARD) but give it some time and then follow up with your docs.

Good luck today...and don't hesitate to write back!! Kara

25

HI there ~

My pain mostly was just on the right side of the throat and right ear (deep). I had one or two days there where it switched and went to the left side of my throat only (not left ear, though). You should have a discussion with Katherine and see what hers was like.

BE SURE to check with your doctor about the dosage and frequency of your meds. I remember it making me tired at first, where I had to take naps, and then my body adjusted to it. And when I went off of it, I gradually took myself off of it, going from three tabs to two tabs, to one, and finally to none.

Mine has just been disappearing on its own. I doubt that a nerve pain med would "send it into remission".....I think Nikki on this Board has also experienced remissions, and I think hers came back, but I am not positive. I hope it went away for her!!

Gosh, I know you are distressed about this. I have also heard that the more stress you are under, the worse it is. A few people have told me that. I also was taking hot baths daily. Something about it made the pain ease. Did not feel the pain AT ALL while I was in the bath. Try it!

Take care!!!! Kara

26

Thanks Kara,

For some reason, I was thinking the nerve medicine was actually what put the nerve in remission. I think I am just getting paranoid because the pain is so constant that there is some sort of nerve damage. The Gab definitely works but wears off really fast. My one ENT does not want to up my dose until I see a neurologist. I don't know the more I think about it I have pain everywhere so maybe it is just the healing and the scar tissue causing the pain. I will get my answers soon. I will try a bath and see if it helps. Thanks again. -Suzie

27

Hi Suzie ~

I don't think the nerve meds can put it into remission, just help with the pain. Your neuro will be able to explain things better. Mine, I think, just started to subside a bit on its own. I have a little "twinge" in my right ear today,. very deep down inside, but I am trying not to think about it!

Take a bath and see if that helps and let me know what your neuro says. When do you see him again?

Feel better, Kara

28

Hi Kara,

So, I met retired neurologist yesterday and he seemed convinced that I may have a deep infection based on my symptoms. He said the fact that a piece of infected tonsil was left in my throat could cause severe sore throat, and also explain why most of my pain is in the left and down the middle. He also said the fact that my pain goes away when I eat could suggest acid reflux. I worry that since the pain is so severe and down the middle that I may have nerve damage. Isn't this when you have pain all over? Nikki talked about it but she also said it was because she waited so long to have surgery, not necessarily based on her symptoms. I am having a party today so hopefully that will at least keep my mind off of it. Hope you are having a pain free day. -Suzie

29

Hi Suzie ~ Did you ever hear back from a doc whether it was a throat infection? I hope you are getting some answers! And maybe it is acid reflux? Not sure how old you are, but that might be the cause too.

It's strange, with this condition, I was always looking for SOMETHING to have caused mine! I was having a hard time believing that it just came to me out of the blue. Mine is better, though. I see my neurologist next month (6 months after my last appointment) and I hope I can still report to her that I am almost pain-free, except for little tiny spurts here and there.

I also thought I saw that you had commented about getting MVD surgery...or were interested? (on another discussion page) Be careful with that. I have heard some horror stories about people ending up with facial paralysis!!!

Did you try a hot bath yet? I hope you are feeling better today!!

Kara

30

Hi Kara,

Thank you for your response. I wish I could report that I am feeling better, but I am actually getting worse. The nerve medicine has not been working at all so I stopped taking it for now. Most of my pain now is in the pharynx and it is unbearable. I see the neurologist next week but am growing more worried that I have nerve damage. Why else would I be getting pain down the middle of my throat and then to the left and to the right. Perhaps I have Eagles Syndrome. But, most of the pain is back and forth and in the middle of my throat. The ENTs said I do not have Acid Reflux- at least not what they think. I know that one neurosurgeon said my symptoms are not common to that of GPN, but what about possible nerve damage. I am so scared and this is affecting my whole family. I don't even want to get out of bed in the morning and I used to love life. I tried to go to a concert last night (Sublime) and was in so much pain I could not even stay. I was reading somewhere that if your pain is in the throat and tonsils that they can go in through your neck and cut the nerves- have you heard of this? Eagles Syndrome would seem to make more sense to me. I see my neurologist next week so hopefully she can provide some answers. Have you ever heard of anyone with GPN who has pain in the middle of their throat as opposed to just one one side? That one neuro said he did not know of one case of GPN where the pain went from side to side in a given hour and then down the middle. I decided not to go to the ER this week and just to wait until I see the neuro next week. I just want my throat back and this is ruining my life. I am not sure how to function like this.

31

I am so sorry to hear this. I have not heard about GPN running down the middle of someone's throat, but, rather, it being one-sided. I have heard that they can cut the glosso nerve, or put a Teflon sponge between the nerve and the blood vessel (if a blood vessel is hitting the nerve-causing the pain). I have seen it done on a YouTube video. I just know that there are a lot of risks that go with it. Go to Youtube and look up "microvasular decompression surgery" and it will show you how the surgery is done (in the case that the offending nerve is touching a blood vessel)....

I hope there is something you can do today that will help. Try the bath. Keep me posted!!

xo, Kara

32

Hi Kara,

Yeah- seems my pain is pretty much all over and it switches all of the time. Yes, if I had GPN, I would have very unusual symptoms. I just thought if somehow the nerve was damaged that it could cause chronic pain all over but I am not sure. I have been doubling my dose of Gabapentin and it does not seem to be working. One thing I am confused about it what is the difference between general nerve pain and GPN? That is the most confusing to me. You would think if I had pain all over and in the middle of my throat it would be more nerve pain- but isn't that the glosso nerve? One more week and I will have some answers. I have been calling every day for a cancellation but nothing yet. I have been seriously considering getting rid of this scar tissue, but needs to be the right surgeon so as not to create more scar tissue. I am going to another doc in September who hopefully can provide me some answers on surgery or if it is better to wait. I think I could deal with the pain in my throat more if it at least felt like a normal throat and not like something was stuck in the middle of it. I also need to get a CT scan to see if I have Eagles Syndrome- makes more sense with the scar tissue. One thing is for sure is I am going to get to the bottom of this- one way or another. Thanks for your support. -Suzie

33

Hey Suzie,

I'm sorry it's taken me so long to reply to you properly, I've been off the boards a lot this month, I've had a couple of trips back home, once for birthdays, and once for a family emergency and working 13 hour shifts in between in truth I'm little more than running on fumes right now, but bye's the bye, I'm here now and will reply to you to the best of my ability, for the last few weeks I've been reading the boards and following your story closely. And from a purely outside perspective to me it doesn't sound like you have GPN at all. I'm not a doctor, but believe me I've been through this mill for the last 4 years and I understand, sympathise and empathise with your pain, but from 4 years of pain, and research what you're describing to my understanding it doesn't fit with this at all.

That said that's not to say you're glosso nerve isn't irritated following the surgery, as can happen, but glosso doesn't tend to swap sides like this, I'm billateral myself, but sometimes I question my own diagnosis, ( I think for me at least on my left side the problem may be genticulate neuralgia, but that;s another story)

The cranial nerves opperate in pairs, and supply motor and sensory function to each side of your head and neck, but they do NOT cross over, and unless there is the same kind of damage ( for whatever reason) to the nerves on each side the pain shouldn't cross over from one side to the other, however if you have a deep tissue infection within the tonsillar area, that could certainly radiate from one side into the central region, and possibly the other side if there;s infection there too. Alternatively it could be post tonsillectomy eagles causing you problems.

There is a big difference to the feeling of horriffic strep aching burning awful radiating throb, to the sensation of neuralgia, it is an entirely different sensation, neuralgic pain is a different beast, as neuralgia is different sensation to neuropathy. ( on that note, I also ended up with atypical pain from gabapentin, and that really screwed my diagnosis for a long time, which although is unusual I wouldn;t wish on anyone either, but again that's another story)

A lot of what you're saying is reminicent of my own experience of this, and many many years before I ever had so much as a twinge of neuralgia, the awful throat pain, ( for me it was right sided and didn't really switch at that point) it would plague me, then would go away, then come back, no infection, no nothing just awful awful pain, on and off this went on probably for a good couple of years, ( all about 15-20 years following a tonsillectomy, later on the clicks started, the gagging, "nothing significant" found, so I never followed up on it, and that portion of the pain eventually subsided, then, the real nightmare started with the neuralgia, but at the time I never really pieced it together or made any kind of connection of one to the other. Then drugs screwed things up, diagnosis got confused, TN was what we thought I had ( facial pain caused by drugs and familial history) then the drugs were stopped, and it clarified things, then eagles was diagnosed, there were tests of every form. I was gonna have eagles surgery but due to the ear pain didn't go ahead with that.

Anyway, what I will say is that diagnosis for these things is a very very difficult process a lot of the time, and I would also strongly caution against cutting out the scar tissie without VERY DEFINITE CAUSE. If you cut out the scar tissue, you have to cut the scar tissue itself out, and will likely further damage the lining of your throat and currently healthy tissue> Then where there had been healthy tissue, further scar tissue is going to form, deeper than it was previously, and if it is the scar tissue is contributing to your pain, it would, by my understanding of medicine and these procedures, cause yet further problems for you. BUT I AM NOT A DOCTOR, OR IN THE MEDICAL PROFESSION IN ANY WAY SHAPE OR FORM, I'm just offering my understanding as a lay person, so bad as it may be, please think about the consequences of cutting out more tissue without being told it is absolutely necessary, cause it could do more harm than good.

I would definitely wait till you've had your CT and take it from there, I know that's of no real help to you now, just offering a word of caution against surgery unless you know its the right surgery for you. Meantime, about the only things I can offer that might be of any help, is to maybe keep an anaesthetic throat spray to hand all the time, and for me, although my throat is hardly ever an issue now cause of the meds ( except for the damned eagles clicking, which I try not to think about ) would be to try keeping a hot drink with you, if you can tollerate it, holding a hot drink in your throat ( almost a gargle) when its bad might help to keep the edge off, it certainly gives me the illusion of helping when mines bad,although whether it does or not or if its just an illusion of doing something to help I'm not sure though! ;) But if there's any question about an infection meantime, get yourself some heavy duty antibiotics, and try the salt water gargles, and the bicarb gargles too, if nothing else they might ease it, and its not going to do any harm!

I wish I could offer more help or advise on this, believe me I know what you're going through, and have been on this mission and had so many build ups and knock downs on the road to diagnosis that I can understand it all too well and am not envious. I really hope you get some answers and some relief soon.

Much love

Gracie x x x

34

Hi Gracie,

Thank you so much for your reply and I really appreciate your support. I have been staying at my parents right now until we can get some answers because my pain level is unbearable. I go to the neurologist on Thursday so hopefully she can give me some answers, as well as do the tests I need to figure out what is going on.

I think you may be right about the GPN, but then what is it causing the pain? My pain is always down the middle and then switches from the left to the right tonsil- sometimes in the same day, But often one day it is one the right and then one day it is one the left. I have scar tissue on both sides and would be surprised if that was not part of the problem. I only have the pain in the tonsil area and in the pharynx- not in the ear, face, etc.

I received a call from the head neurosurgeon at U of Pittsburgh or somewhere in PA who is an expert in GPP and he spent quite a lot of time on the phone with me waling me through my symptoms, etc. What he said is he is was almost 100% sure that I did not have GPN because the pain does not go back and forth on a given day and the pain is not down the middle. He also said scar tissue can cause excrutiating pain. He also said that nerve pain can take a year to calm down after a tonsillectomy. I should be encouraged but my feeling is if it is not GPN then what is it? What is the difference between nerve pain and GPN? My biggest worry is that I have nerve damage on both sides. I never have the pain in the tonsils at the same time. It is either left or right. Will they be able to tell from the MRI if I have nerve damage on both sides? Is it possible I have GPN on both sides and that is why the pain fluxuates? That would be really rare to have it on both sides wouldn't it?

What happens then? Does that rule out possible surgery? I spoke with Katherine last week and she said she had pain down the middle and then just on one side and that it has never gone to the other side. She was very helpful and said my symptoms are much more common of that of Eagles Syndrome. The weird thing is I feel the pain in the side that I am most feeling the scar tissue at that given moment.

I am not getting the scar tissue removed at this moment but if I did I would go and have the skin graph done so the scar tissue cannot come back.

So, you mentioned neuralgia versus neuropathy. Isn't neuropathy when you have the constant pain and it is more permanent? I definitely have constant pain and it is not intermittent and today I feel a big chunk of scar tissue on the right and this is where the pain is.

So, if you have Eagles, is it possible for the pain to go back and forth? Also, how can they tell if you have a deep tissue infection?

I took 6 Gabs yesterday and after the 6th the pain did subside a bit but it did not last long.

I'm just so worried that I have the pain switching between the left and right that I have it on both sides and that the nerve is just firing where ever.

I want the neurologist to put the lidocaine in my throat or tonsils to see if the pain goes away. On a good note, if she is not familiar with possible GPN, I have located doctors at the Teaching/Learning hospital that do.

I really appreciate your help and support and look forward to your reply. -Suzie

35

Hey Suzie,

Hope you're doing ok, I wish I could answer your questions, believe me I know what this fight for answers is like, but like I say it really doesn't sound to me like you have GPN, but I'm no doctor just someone who's been through th the mill with this. I really wish you the best in getting answers, I would imagine that nerve damage wouldnt be apparent on MRI, I believe seeing the glosso on MRI is rather difficult anway and unless there are obvious compressions they often come back inconclusive unfortunateley.

Billateral GPN is very rare and the surgeon I spoke to said that he had NEVER seen a case of it, but like I say you don't sound like GPN is the problem anyway. Whatever the problem is though is almost irrelevent, it leaves you in pain, and the first thing that you want to do is get that under control first, once you get some relief dealing with the rest should ( hopefully!) become easier, once the pain eases, finding the strength to carry on looking for answers will get better, but then again there's the flip side of find out what the real problem is and treat that from there, but the thing is that that's not always possible, so to my mind we have to take what we can get, and celebrate the little victories, and if that is getting some good pain relief then that to my mind is a victory in and of itself.

Much love and all the best

Gracie x x x

36

Hi Gracie, I am sorry it has taken me a while to get back to you. My dad is in the hospital and has to have triple by-pass heart surgery. It has all come as a shock to our family so I have been spending most of my days at the hospital.

I wanted to let you know that I went to the neurologist last week and she insisted that I did not have GPN. She was awful and not very nice at all. She kept telling me that the pain would not move around from tonsil to tonsil and in the pharynx. When I asked her about Eagles Syndrome she said she had never heard of it. When I asked her to numb my throat she said she did not do that and ENT's were the ones who did that.

She diagnosed me with something similar to burning mouth syndrome which makes no sense and upped my dose of Gabapentin which does not seem to be working.

Meanwhile my pain seems to be getting worse and still switches each day. Yesterday I had the pain in my left tonsil and today it is in the right. So, quick question, does bilateral mean that it occurs in both tonsils at the same time, or does it mean my sort of switching pain back and forth? Does the fact that my pain is on the left one day and the right the next still mean it is unilateral?

She basically told me that what is going on is that my brain is emitting pain signals but that it is not nerve related and that I don't have nerve damage. It still makes no sense to me and I really disliked her so am going to find someone else.

I am having a CT scan next week to check for Eagles Syndrome and then going to find a teaching hospital and someone who deals with GPN.

I still can't shake the fact that the pain goes back and forth but is still in the tonsil area. The fact that it is in the left and right- does that mean bilateral? I never have pain at the same time in both sides but just the switching back and forth.

I am more depressed than ever and on top of all of this have to deal with what is going on with my dad.

Looking forward to your reply- Suzie

37

Jumping on your discussion guys as also new to the board. I have only just been diagnosed with GPN after about 18 months of being told it was tonsilligtis. In response to your early question Suzie, I'm not sure there is a final "test" for GPN - well, not that I've discovered anyway. My diagnosis seemed to have come about after having had every other test in the world and it being the final "option" and because gabepenthin seemed to be "working" (not without pain though!) the specialist decided that gpn was it! In saying that, reading the online descriptions of symptoms etc. I doubt the specialists are wrong and I agree I have ever symptom - stabbing, burning pain in right side of my neck, extending to ears and neck on really bad days, can be crying with the pain some days, can't swallow and it's ALWAYS on one side I've never had it on the left. And the pain is now CONSTANT, has been for 4 months whereas before it was coming for a week, leaving then coming again which I now hear are called "remissions". Wish I would have a remission now I tell you! I had a quinsy 2 years ago and ever since then have had a reoccuring throat issue with the right side and every time, Docs said it was tonsilligtis.

So where are you at now with treatment/diagnosis from a Doctor Suzie?

Kara, I literally feel your pain!! I have just had an x-ray of my teeth as my doctor believed the pain in my ears was to do with grinding my teeth to alleviate the pain. I do feel at times I clench my teeth a lot but doubt that it has caused the ear pain. Has accupunture worked for you? I'm interested to give it ago but am sceptical.

Hope you guys having a "pain free day" as they say!

hugs!

Amanda

38

Hi Amanda ~

Glad you found us! Sorry to hear about your pain and what you have been suffering with.

I did try accupuncture, and I think it did help, but I think it was going towards a "remission" anyways. I have not had very much pain at all lately. Saw my neurologist Monday for a 6 month follow up, telling her I was basically pain free, and asking her what it was I had suffered with AGONY for the previous 9 months, and she said they think it is/was a blood vessel hitting against that nerve that comes out from that part of the brain stem. I said, "Well, I am not in pain now. Did it move?" She said maybe so. I think she has a hard time explaning it because she is not really sure.

I am off all of my meds at the moment (have been for about three months) but what worked the best for me during that time was Gabapentin. Took most of the pain away, but not all.

I hope and pray that it STAYS away. It is horrible to deal with, and I wish you the best of luck. In the meantime, I am trying to wear a night guard on my teeth so I don't grind at night. Maybe that was it? Maybe the accupuncture worked? I think it would be worth a couple of treatments. Mine ran $60 each and many insurance companies will co-pay for it.

Best of luck to you and please keep me posted!!

Kara

39

Hello,

It is really painful to hear that you are suffering from GPN.

My wife is suffering from the same. I am doing some research on Pulsed Radio Frequency treatment. If I come to know more on it, I will certainly post here.

If you are facing problem while eating things, you can try to eat and drink in sleeping position; this certainly gives my wife relief from pain while swallowing things. You can give try and give me feedback of how do you feel as it may be helpful to others too.

Regards.

40

That's really interesting about the blood vessel moving Kara AND the fact you're off the drugs!! Being recently diagnosed I have spent the last few weeks coming to terms with being on drugs for the rest of my life, and worse, not being able to have another child because being on drugs I wouldn't be able to.

Thanks for your support, lovely to hear other peoples' stories.

Amanda

Kara Wilson said:

Hi Amanda ~

Glad you found us! Sorry to hear about your pain and what you have been suffering with.

I did try accupuncture, and I think it did help, but I think it was going towards a "remission" anyways. I have not had very much pain at all lately. Saw my neurologist Monday for a 6 month follow up, telling her I was basically pain free, and asking her what it was I had suffered with AGONY for the previous 9 months, and she said they think it is/was a blood vessel hitting against that nerve that comes out from that part of the brain stem. I said, "Well, I am not in pain now. Did it move?" She said maybe so. I think she has a hard time explaning it because she is not really sure.

I am off all of my meds at the moment (have been for about three months) but what worked the best for me during that time was Gabapentin. Took most of the pain away, but not all.

I hope and pray that it STAYS away. It is horrible to deal with, and I wish you the best of luck. In the meantime, I am trying to wear a night guard on my teeth so I don't grind at night. Maybe that was it? Maybe the accupuncture worked? I think it would be worth a couple of treatments. Mine ran $60 each and many insurance companies will co-pay for it.

Best of luck to you and please keep me posted!!

Kara