So nice to find fellow travellers

General General TN & GPN (Old Site)
1

I am new to all this internet discussion, however hope I am doing it correctly.

About 16 years ago, very strssed, working hard, catering foe 3 floors at a legal firm.

I had been on an early hike with my little son. It was cold, and when I got back I could not swallow properlly. This developed and grew into something far bigger than I could handle.So my journey started. Fron neuro's to chiro's to ENT to dentists and back and forth.Finally diagnosed with GPN. It took me a couple of years to go ahead and have the opp. I woke up after sugrery with all the pain and lots extra.

I feel so overwhelmed even writing about this journey.

What I have found that works temporarily is Antibiotics. This was just by chance. It may just be some anti inflamitory side effect. I dont really know, and every time I have told a doctor this it is dismissed or even laughed at.

I stopped looking for answers about 6 years ago, until I saw another Neuro 8 weeks ago. He put me on a small dose of Baclofan and just gave me a cortisone injection in the occipital area of my head. So far not so good.

I managed to work part time and brought up my son as best I could. He is a Gynocoligist and obstrician now, so I hope I did something right as a mother. My son found it very difficult living with me in such pain. In fact to this day I donT like to talk about it with him.

This pain has taught me so much. That I am so much more than just my body and my pain.

I find I need bits of quiet time in my busy life to cope.

I no longer mix with lots of people. Just a few quality friends. I frame beautiful corals and shells,having peaceful walks along beaches collecting them. I very much watch my energy levels, eat great food and really look after myself.

The next medical stuff for me is botox in the neck muscles just to releive a bit of the spasm.

Acceptance for me ,has been hard but helpfull.Sometimes I feel I am trying to accept the unacceptable.Never give up hope

2

Dear Warrior,

I am so sorry. Have you tried Gabapentin? What other drugs have you tried? How wonderful you have raised a good son, and that you are doing coral framing. Asking God to walk with you is a good idea too.

Hugs,

Funtsie

3

Hi Warrior -

Thanks for sharing your story. Like many of us, sounds like you've been back and forth to many, many doctors. I've gotten to the point where doctors just look at me now and think it is all in my head! I am enjoying a bit of a remission right now (going on two week - knock wood!) but I will take it when I can get it.

From reading your story, sounds like your surgery was not successful. Did you have a microvascular decompression surgery or the nerve rootlets cut? I hope you can find something that works for you to help you with this pain. It can be maddening. I've been on Gabapentin in the past and it's worked.

I am curious about the botox for the neck muscles. When I am having a spell I tend to have a very stiff/painful neck and it runs down the GPN side into my shoulder. Am curious if you've had the botox treatment before and how/if it works.

Wishing you a pain free Sunday!

Kara

4

Usually a medication like tegretal is recommended. I would be curious to see how this works for you. I have been pain free since September 12 when I had surgery. It was the best thing I did because it ended a 12 year battle with GPN and Geniculate Neuralgia. Please read my other posts if you have time. Good luck to you and just please be aware that many people can be cured of this with surgery.

5

Thanks Funtsie,

I did try that drug after the opp, however I found that I could'nt tolerate the side effects. Thanks for your kind words.

God's on board,and I will keep in touch. Regards WW

Funtsie said:

Dear Warrior,

I am so sorry. Have you tried Gabapentin? What other drugs have you tried? How wonderful you have raised a good son, and that you are doing coral framing. Asking God to walk with you is a good idea too.

Hugs,

Funtsie

6

Hi Laura, So pleased that your surgery was a sucess. You must feel so relieved to be free of the pain.

I took tegretal before the opp, and have had times on and off that since.Not for a few years now though.

I look foward to reading your other posts. Kind Regards WW

Laura said:

Usually a medication like tegretal is recommended. I would be curious to see how this works for you. I have been pain free since September 12 when I had surgery. It was the best thing I did because it ended a 12 year battle with GPN and Geniculate Neuralgia. Please read my other posts if you have time. Good luck to you and just please be aware that many people can be cured of this with surgery.
7

Hi Kara, Thanks for your reply. I just ca'nt believe there are so many people out there with similar stuff going on.

I had the GPN section and upper rootletts of the Vagas, and they seem to have cut the nerves in my neck

as well as I have a numb tingley sensation on my scalp now.Not sure if that is always part of the surgery as

the neuro surgeon was'nt very talkative or helpful after the opp was'nt a sucess. Thats why I just had the

injection in the occipital area.

So glad you are having a bit of space from it. When I have that space I feel like I can do anything with such

ease. The Botox will be in 6 weeks so I will keep you posted.Thanks again. WW

8

This is often related to MS, and is frequently bilaterally. Anyone fit this catagory? My Family Practice feels she can handle it rather than a Neurologist, any thoughts? When you get down to it ........it becomes an issue of pain management.

Thanks,

Funtsie

9

It can be related to MS, but many times is not. It is usually unilateral not bilateral. It can be bilateral, but this is not usual. A feel a neurologist is a must…and my best advise…the advise I wish I had gotten years ago…is to consult with a neurosurgeon that has experience with the surgery to fix this. Just so you can weigh all your options. Typically this always gets worse and never goes away. Be proactive and educate yourself on all options. Do not sell yourself short and settle into a life of pain. Options are out there.

10

Hi there, sounds like you have had a long and painful journey.

I was on carbamazepine but after 5 yrs my body rejected it. Now I am on amitryptilline - not quite as effective but making the pain bearable.

There were no abnormalities on my MRI scan so was told an op was not possible, just pain management.

Well done for weathering all the storms and finding some peace and positivity through all your trials.

Hoping you will able to endure and as I am new to this too would say you are not alone, not anymore.

Take care xxx

11

Find another doctor. A neurosurgeon who does this surgery. There is usually no abnormalities on a MRI a doctor that has any idea about this disease knows that, so whoever you are seeing is not the one for you. They go by symptoms and just use the MRI to rule out other problems it could be, such as a tumor. My MRI did not show the compressions and my neurosurgeon said he didn’t expect it to. I went into surgery and they found 2 huge vessels laying on my 9th cranial nerve. They fixed everything and I woke up with the pain gone and there has been no sign of it. PLEASE go someplace else. UPMC, the Mayo Clinic , and others you can find on the Internet. You may need to travel and believe me I didn’t think it was doable, but I traveled 7 hours and am now cured. The pain is unbearable and you don’t have to live with it. I can’t stress enough for you to get a different doctor.

12

My MRI was read as normal in 2007. I suffered on and off for 6 years, Last year my neurosurgeon looked at the MRI and said there is a blood vessel (PICA) on the nerve. MVD surgery 15 weeks ago fixed the pain. I have had a slow recovery and things are still not quite right, but the pain is GONE. It won't work for everybody. It makes some people worse. I was desperate. I am glad I made the leap. But the end of the pain was the beginning of another journey I have not completed. Hope your journey has some brighter days ahead!

13

Dear Warrior,

I am new to all of this now too! I had a right thyroid lobectomy with isthmusectomy on June 6, of 2012 because I was originally diagnosed with right lobe suspicious of papillary carcinoma The good news was that path report came back benign, so I didn't have cancer and all my thyroid tests have been normal. Before my surgery I did not have any throat pain, voice or swallowing problems. After my surgery I started to have many symptoms no appetite, weight loss, chronic pain in throat feels like someone is choking me, The throat pain is there when I turn my head from side to side, and when I look up, even if I'm not swallowing. Talking for extended periods, exacerbates throat pain and makes it more difficult to swallow. When I had the voice test I could not get my voice to a high pitch. The pain when I'm not swallowing is a dry, tightness, pressure, and full feeling like something is stuck in my throat. When I stick out my tongue it is also very painful. The pain when I swallow, ( with no food ) feels like the muscles are struggling, it changes from a sharp to dull pain with the lump in my throat sensation. I have to crush some of my vitamins, I eat mainly softer foods, My voice gets fatigued after talking, so I am finding it so difficult to communicate, causing me to become very introverted. Appears to be getting worse and it has been 7 months since my surgery. The only relieve I get is when I go to sleep as I take Clonazapam for anxiety. I have not been able to return to my work, this problem has interrupted the quality and pleasure I use to have in my daily activities. Up until just recently all the doctors I have been seeing so many ologist's, crazy and numerous testing, no one had any diagnosis It wasn't until I went to a GI doctor, he dilated my esophagus, during a upper endoscopy, said there as an unspecific tightness? Found nothing else so he sent my second opinion neurologist that it was nerve related pain post surgery. My neurologist called me told me to take Gabapentin, it made me very dizzy, double vision, couldn't drive. I decided to get my medical record from neurologist. In there it said I may have GPN. I had a brain MRI done back in Nov 2012. Not sure if it shows 9th cranial nerve? I'm going to a specialty doctor in swallowing disorders. Praying and walking with God has kept me going, as this pain is so horrible. It wasn't until I found this website, it helps to know that I'm not crazy cuz everyone says I look fine on the outside. Is there anyone that can give me feed back or idea's on how they got specifically diagnosed? I am also going to try acupuncture, as I read Kaz's post.

14

Hello,

So glad I read this today. Since today I'm feeling down and like such a curse to my family. I am notable to work anymore, and live life differently now, but you've definitely encourage me today. It is true that the pain is not who we are, but for me it has cause some financial hardship, probably like many others with this. My doctor bills have slowed down, which is a plus. Insurance does great in covering after meeting a 5000 deductible, yikes. I agree with you needing your quiet time, I too need this. After my last MVD it left me deaf in my left ear, which has caused balance issues, but the main problem is hearing when out in crowds. Which is ok with me, I've gotten used to that, along with my husband? Good for you in working part time and do not ever feel bad if you need take off time. Don't know if my pain is normal but it comes and goes in a cycle, and when it is here, it's here to stay a while and visa versa, strange. It is frustrating that many docs really cannot answer simple questions about GPN. Sometimes I do wonder if they really believe that I have pain. I only wish there was something more conclusive as far as tests go for this, then I wouldn't feel as if some people even doubt this disorder, ya know?

I agree with you though, never give up hope, we're all here for a reason, and I believe I have this disorder for a reason also, it has made me much more appreciative of life when I do have the pain, that's for sure!

15

Anyone have MS with it? I have GN bilaterally but Neurontin works for me, so far. I have had this for many years. Anyone on Tegratol? Knee mails for the pain we share.

:)

16

I agree, my MRI showing not one thing, lol. Some have said they can see the abdormalty on MRI's but I do not know how, I didn't think MRI's picked up all the nerves. It is so great that even today compared to 8 years ago when I had my surgeries, how the increase in the neurosurgeons that are studying more and more about these neuralgias. It took the doctors here in Louisville four years to diagnose me and that was after I went to a well know neuro in Cinci. I also agree Laura that even if you need to travel as I did to Pittburgh then it is worth it just to get the best, if not well advised and train doctor.



Laura said:

Find another doctor. A neurosurgeon who does this surgery. There is usually no abnormalities on a MRI a doctor that has any idea about this disease knows that, so whoever you are seeing is not the one for you. They go by symptoms and just use the MRI to rule out other problems it could be, such as a tumor. My MRI did not show the compressions and my neurosurgeon said he didn't expect it to. I went into surgery and they found 2 huge vessels laying on my 9th cranial nerve. They fixed everything and I woke up with the pain gone and there has been no sign of it. PLEASE go someplace else. UPMC, the Mayo Clinic , and others you can find on the Internet. You may need to travel and believe me I didn't think it was doable, but I traveled 7 hours and am now cured. The pain is unbearable and you don't have to live with it. I can't stress enough for you to get a different doctor.
17

Warrier woman

I wanted to tell you that I read an interesting article lately. In the article a woman had had the nerve section for GPN. Her nerve section worked for a while. Then she started having the same pain again. They went back in and found that a blood vessle was laying over her cut nerves. They did an MVD on the blood vessle that laid on these cut nerves and she got relief. I know that there is something called dolorosa? that can happen when nerves are cut but it is not common. It seems like having the nerves cut should relieve the pain with the exception of this problem- that is if they cut the right nerves of course. But this paper explained a completely different reason for pain and that even after the nerves have been cut, if any stray vessels are around they can continue to cause a problem. I myself have not had any surgery yet and my problem at this time is more functional. My pain is tolerable with meds.I am doing the round of docs right now and thinking about whether to try surgery or not.

18

Hi Peacefulbuttons, Love the name and thank you for your reply. I am hopeless at all this internet stuff and never know when I write something where it will end up. Never mind. I would really appreciate it if you could tell me how to get access to the article you read as I am being re assessed by a new Doctor hopefully soon. I seem to be getting so tired with the constant pain and working at the moment. Very sensitive to all the drugs so the pain is not really being controlled at all. Thank you and kind Regards. Sorry not to be very positive at present. Take Care

19

http://www.ncbi.nlm.nih.gov/pubmed/11185643 try this,link. The article is called late recurrence of glossopharngeal neuralgia after cranial nerve IX and partial cranial nerve X rhizotomy. I think publication date is 2000. Interestingly enough it sounds like at this time rhizotomy was the first line treatment with mvd just gaining popularity. Not that long ago really. But anyway, I know that ur surgery just did not work to begin with where this lady's failed later. But certainly it seems this mechanism could be the cause in some failures of these surgeries it seems. I have not seen many people here with rhizotomy failures with respect to pain but I know there r a few. I have never seen anyone say that their surgeon mentioned this as a possibility but it obviously happened at least once!

20

Underneath the title u will c 'free PMC article' click that link and u can download a free copy of the article in pdf format