Symptoms...lump, swelling, tightness?

I'm still trying to figure out what goes with GPN and what doesn't...does anyone ever get the feeling of a lump in their throat or the feeling of swelling or tightness in their throat during an attack?

Yes, all the time.

The lump can feel like it is as large as a softball or as small as a bean. This makes it hard to swallow.

The swelling tends to be concentrated in my soft palate almost like I have a cold.

The tightness feels like I am being strangled. It causes my head to feel like it is swelling.

I also have Vagal Neuralgia so I am not sure if the feeling of swelling in my head is due to VN or GPN.

Mine hurt so much, I can’t say the feelings you describe ever made it to the surface. The horrible stabbing pain overrode all other sensations. If the pain weren’t so severe, it’s possible that the tightness might have been there, but all I remember is the pain. Everyone is different. Perhaps the feeling of a spasm, like a Charlie Horse, might have been there.

Yes, mine first started like this as feeling like a lump in my throat. The first time an ENT looked down my throat for this in 2000 he said no lump but there is irritation as in inflammation and like small erosion. It felt like a lump though. He told me this could not be causing the pain, and that it must be my MS but now it appears this issue may well be the direct cause of my pain and not MS. Specialists are still trying to work out this cause. Looks like I will be undergoing tongue biopsies in the new year. The area does not look sinister in the look of the holes (ulcer type things) but they do also bleed because they are so deep. I wake up with blood on and off.

I would strongly suggest that you see an ENT whilst you have this feeling and be checked thoroughly. I would also recommend you have your pallatine tonsil area and beyond checked as well. This area is very difficult to see via normal oral examination and needs someone very experienced to be able to pull the tongue out enough (past the arch) and check all areas as deep ulcerations, lumps and other issues here can actually also cause GPN as the GP nerve endings are in this area. Try doing some self evaluation in good light with a mirror if you have any tongue pain. This is very difficult to do when the neuralgia strikes but worth doing. I use Xylocaine Viscous to help do a self examination.

I say this as many years ago I got diagnosed with GPN and it was instantly put down to my MS. Mine become very severe too when the attacks strike 24/7 with no reprieve and affects my vagus nerve as well. During an attack earlier this year I decided to investigate my tongue as it was also deviating to the side (which also was put down to MS). I discovered I have a deep hole in a very awkward position. Not ONE specialist could see it (even oral) when they examined until I located it for them...

I have the GPN back just now and yep, another hole and a lump. So I strongly recommend anyone who has no known physical reason for GPN, as in Eagles Syndrome, or compression of the nerve, to ensure they check out their tongues very carefully. Also pay attention to whether you tend to get any ulcerations in your mouth in general like soft palatte etc.

Hello, I am an Otolaryngologist and agree that you should have a completed evaluation by an Otolaryngologist to rule out the most likely causes. Very few have ever seen a case of GPN and it is not commonly thought of. I had never seen a case before I developed the symptoms and self diagnosed the eventual cause of my problem. Assuming that the physical exam is negative, then you will need a specific MRI, I believe that it is called a "fiesta" scan, the radiologist will know, the one that I used in Jacksonville Fla, at a large hospital, had never done one before. Simply looked it up and dialed in the necessary instructions for the MRI machine. Bingo, there was evidence of the blood vessel banging on the nerve. The CT was previously neg for eagles etc. With the MRI finding and the recurrent clinical symptoms, I was set to go( Neg. response to Meds). Initially was to have this done in Pittsburg where the procedure to decompress was developed but the symptoms worsened to an incapacitating degree and I was lucky enough to have a remarkable surgeon here in Orlando, Dr Melvin Field, who actually trained at Pittsburg and then continued on with endoscopic training. Thus I had endoscopic GPN decompression here in Orlando. 2 years ago, total relief when I awoke form the surgery. Moved several vessels on the primary side and then went over to the opposite side an placed telfa sponges between several vessels and the nerves there as well. Good to go since.

Thanks everyone! As I mentioned in a previous post, my primary care doc and ENT both thought my pain was from tonsil tissue that was leftover from a tonsillectomy 40+ years ago. I had surgery for that in October. Everything has healed fine from the surgery and there are no other ulcers or "holes" as Kaz mentioned, but the pain remains the same as it was before the surgery. I wanted to give it some more time to see if the problem would correct itself, but it seems that is not going to happen.

I live in a rural area and travel an hour one way just to see my ENT. My health insurance is limited to local doctors, so GPN specialists are probably not going to be an option. In November the ENT said that if it didn't correct itself or if it got worse then further testing would be in order. (He agreed that I could wait until spring, if I wanted.) I'm still holding out hope that it will get better on its own.

Yes, I feel like my throat is closing up. but I have this feeling even though its not a full blown attack.

Suzymc44 it sounds like there could be permanent damage to the nerve endings there from the operation. I would suggest trying acupuncture to get the pain under control. It works well and is the only thing that manages my pain when it is severe. However, I do think you should be screened for Eagles Syndrome and/or also for if there are any blood vessels pressing on the GP nerve if you have not had this done already. CT of the styloid processes will rule in or out Eagles, and an 3T MRI with contrast to check for any compression of the nerves.

Thank you, Kaz! I had never heard of Eagle Syndrome, so I did some research and things all of a sudden started to fit together. After the ENT did the physical exam he said that he suspected calcification of the styloid might be causing the GPN, but right after that he also said that the tonsillectomy could have aggravated it as well and that it might get better with time. "It might get better on it's own with time" was all I heard and that is what I have been hoping for since. Anyway, I see that many of my symptoms (things that I hadn't even thought of being related) fit into the Eagle Syndrome category, so there's a good chance that is what is causing the GPN. I guess after the holidays I'll make another appointment and see about having some more tests done. I'm also going to see about trying acupuncture, as I'm not crazy about the idea of pain meds and/or more surgery.

Kaz said:

Suzymc44 it sounds like there could be permanent damage to the nerve endings there from the operation. I would suggest trying acupuncture to get the pain under control. It works well and is the only thing that manages my pain when it is severe. However, I do think you should be screened for Eagles Syndrome and/or also for if there are any blood vessels pressing on the GP nerve if you have not had this done already. CT of the styloid processes will rule in or out Eagles, and an 3T MRI with contrast to check for any compression of the nerves.

I am glad things seem to be falling into place Suzymc44. I would definitely be asking for a CT scan of your styloid processors as Eagles is diagnosed by the measurements of these, and/or calcification. I am very surprised the ENT did not order a CT with making the comment about calcification of the styloid. As you probably have read this issue can occur after a tonsillectomy... It is so easy to rule in or out. So I would push to have that CT done. A GP can refer patients for these although health systems vary around the world and may be different where you are. If your GP can refer you it may pay to have this done before seeing the ENT again as if it is positive then you can discuss options with him. If it is negative, then you can discuss having an MRI with contrast to check for any obstruction or compression with the nerve. Please do let us know how you get on.

Yes but only on the left side of my throat. This is the side where I have the GPN pain. Also have problems swallowing solid food. I have had 2 MVD surgeries 7 years apart neither helped my pain level. Taking gabapentin, tramadol, cymbalta & nortriptyline at night to help with sleeping.I have tried 3 different acupuncture docs.The Chinese doc seem to help most but certainly not stopping the pain. I am a member of this site and found each one of us has unique health issues and none exactly alike. Seems like 50% having MVD surgery had success in stopping pain. It is enlightening to read about the various symptoms and remedies we all deal with each day.
Wish I had a magic wan I would make everyone’s pain go away!!

I need Information please from " mrr" regarding the FIESTA scan he or she had done mentioned in the 12/26/14 posting . I contacted my local MRI specialist and asked if any of my previous MRIs or MRAs would have included a FIESTA type scan . What followed from this very helpful but very academic doctor was an explanation about how companies market their scans as being superior based on mildly different scanning parameters ( IF I understood him correctly ). He said he would love to know from the radiologist or ENT who ordered the FIESTA scan that helped 'mrr' what paper or other document led that person to think to order that type of study …he wants to see it so they can consider adding " FIESTA scans" if this will help their patients ( No animosity --true intellectual curiosity ) ..IF that group can be convinced that this addition to what they offer would help he would like to add it on . Can anyone help me contact "mrr" so I can ask ?

Thanks !

Click onto his name (mrr) that is highlighted in blue in his post and it will take you to another page and on there there is a link that states send message under mrr's discussions. You can contact him directly via that as he will receive it as an email. Hope that helps.

Former Medica said:

I need Information please from " mrr" regarding the FIESTA scan he or she had done mentioned in the 12/26/14 posting . I contacted my local MRI specialist and asked if any of my previous MRIs or MRAs would have included a FIESTA type scan . What followed from this very helpful but very academic doctor was an explanation about how companies market their scans as being superior based on mildly different scanning parameters ( IF I understood him correctly ). He said he would love to know from the radiologist or ENT who ordered the FIESTA scan that helped 'mrr' what paper or other document led that person to think to order that type of study …he wants to see it so they can consider adding " FIESTA scans" if this will help their patients ( No animosity --true intellectual curiosity ) ..IF that group can be convinced that this addition to what they offer would help he would like to add it on . Can anyone help me contact "mrr" so I can ask ?

Thanks !