Hi from New Zealand

Hi everyone

I'm a Japanese lady living in New Zealand with my kiwi husband and children.

I had my first pains occur December 2013 (Christmas Day, talk about bad timing). I had no idea what was going on, but had severe pains in the left side of my throat for about 4 months before they gradually disappeared. I had cameras up my nose and down my throat twice, but no one had any idea what was happening. Once the pain stopped, I thought everything was okay, but at the end of November last year it started again. I went to more specialists but no one seemed to know what it was. Just before we left for a months holiday in Japan, one guy suggested it could be GPN, but thought I should check with specialists there. After another couple of specialist visits, one neurologist in Japan said it was GPN. Since then I have had MRIs but there appears to be nothing causing it.

I just visited the local neurologist in Auckland, but he said there is nothing he can do other than give me more medicine (he said any kind of operation will most likely just go back to the same condition after a while).

Regarding medicine, I was put on Tegretol in Japan and that stopped the pain immediately, but after about three weeks I started reacting very badly to it (basically anaphylactic reactions) so I am now on Gabapentin.

I am very frustrated with this and would love to know who the best specialists in NZ are.

Also, if there are any others here in NZ with similar experiences who have any advice, it would be appreciated.

Hi Eiko,
We have a few Kiwi’s in the community who may be able to help you. Welcome to the community :slight_smile:

Hi Smiley,

Thank you for your reply. I hope there are some New Zealanders who are able to help me :) If there are people from other countries who have had similar experiences then I would love to hear from them too.

Hi Eiko

I am sorry to say there is no reliable test that always shows the problem.

I would throw out a wild guess and say 75% of GPN patients are told there is nothing wrong based on MRI's.

I posted a picture of what the surgeon found in my head, that could not be seen on any test. even he could not explain why it didn't show up. Forget the tests if you have the pain you have the condition. for me the only fix was surgery.

Good luck, hang in there I hope you find a fix soon. Chris

Hi Eiko

Like you I started having pains three years ago. Three MRI scans show nothing. I am on Tegretrol, Gabapentin, Epilim and Baclofin three times a day. We (my family) looked at me having the operation but we all decided against it. We talked with the specialists at Auckland Hospital who were fantastic and spent ages talking with us before we made the decision not to operate
I still have pains, nothing like they were before, but my medication seems to be working. I have to use a special pen to write this on my iPad as my arms jerk and I keep hitting the wrong letters. The jerking is a caused by the medication I have to take.
I find cold winds or high levels of stress aggravated my GPN. I was a teacher but have had to retire. Luckily I was a retirement age but it was still hard.

I do agree though it is hard to have a name put to GPN even after cameras up your nose hands down throats etc.

Best of luck

Pam also from NZ

Hello Eiko

I am sorry to read of your experiences and hope to help shed some light, as per my own experience.

I have to agree with Chris, sometimes these nerves do not show up when being compressed by vessels, but that does not mean you do not have GPN.

You do not say where in New Zealand you are, but I had my operation done by Mr Martin Hunn, at Wellington Regional Hospital in 2005, in Wellington. It may be worth having your GP contact him and get a referral to be seen by My Hunn. It certainly worked in my case, and I am now 10 years on pain and drug free.

Feel free to ask any questions you may have.

Michael

Hi Michael,

Thank you for your reply. I was wondering which operation you had, did you have the nerve cut or did you have a sponge placed in between the nerve and blood vessels, or something else? Also did you have any side effects after the operation eg change in voice or losing taste? Can I also ask why you chose to have the operation?

Thanks

Eiko


KiwiSurvivor said:

Hello Eiko

I am sorry to read of your experiences and hope to help shed some light, as per my own experience.

I have to agree with Chris, sometimes these nerves do not show up when being compressed by vessels, but that does not mean you do not have GPN.

You do not say where in New Zealand you are, but I had my operation done by Mr Martin Hunn, at Wellington Regional Hospital in 2005, in Wellington. It may be worth having your GP contact him and get a referral to be seen by My Hunn. It certainly worked in my case, and I am now 10 years on pain and drug free.

Feel free to ask any questions you may have.

Michael

Hi Eiko

The operation I had was a Microvascular Decompression, which is performed by placing Teflon pads between the offending vessels. I had no change in voice or in taste sensation. The lack of taste was pronounced PRIOR to the operation. Wether that was because of the Tegretol (Carbamazepine) or symptomatic of the condition, I do not know.

I had the operation to stop the pain attacks. Which it did.

Michael

Eiko said:

Hi Michael,

Thank you for your reply. I was wondering which operation you had, did you have the nerve cut or did you have a sponge placed in between the nerve and blood vessels, or something else? Also did you have any side effects after the operation eg change in voice or losing taste? Can I also ask why you chose to have the operation?

Thanks

Eiko


KiwiSurvivor said:

Hello Eiko

I am sorry to read of your experiences and hope to help shed some light, as per my own experience.

I have to agree with Chris, sometimes these nerves do not show up when being compressed by vessels, but that does not mean you do not have GPN.

You do not say where in New Zealand you are, but I had my operation done by Mr Martin Hunn, at Wellington Regional Hospital in 2005, in Wellington. It may be worth having your GP contact him and get a referral to be seen by My Hunn. It certainly worked in my case, and I am now 10 years on pain and drug free.

Feel free to ask any questions you may have.

Michael