Appointment with Dr. Honey

I had an hour and a half with Dr. Honey in Vancouver last week. He is not going to operate. He believes that I have Neuropathy and that possibly a virus got into my 7th/8th cranial nerve complex and then spread. But he is not sure and asked for time to think about what is going on. In the meantime he is sending me to a researcher at UBC to check out viral possibilities and also genetic culprits.

He’s also sending me for a current brain MRI, just checking out MS, but that is a long shot.

He has committed to getting me a better diagnosis and will stick with me. In the meantime they need to put a better pain management plan together.

So there it is. He believes the damage is done. Cutting the 9th/10th will not help.

In a way I’m relieved not to have to go through that after experiencing that kind of surgery with the 5th/7th decompression. But sad that it can’t be cured.

Still, I am impressed with Dr. Honey’s commitment and perhaps other therapies will emerge from a deeper diagnosis.

Wishing everyone a pain free day.

Keep Heart
Bellalarke

I'm sorry that surgery isn't going to help,but am relieved that the doctor came to the conclusion prior to operating. That is a sign of a confident physician. I had a similar situation flew to Pittsburgh fully expecting to have surgery then next day, then 12 hours before the scheduled surgery the doctor looked at my MRI and said there is a chance he would be more damage rather than helping. I respect him for being honest with me and took the time to go over the reasons it could cause problems then another 1/2 hour discussion other medications, chiropractic treatments and other things he had heard helped, but had not had full on experiences with these treatments. But wanted to give me some hope. And sure enough, 9 months later I tried change of medications and then botox injections and between both I am doing much better and am so releived that I didn't have the surgery and all of the complication that can arise from that type of surgery.

Hang in there, you will have times when it will get better. Enjoy those days when you can!!

Gail

Wishing you many blessings for a positive outcome...

Hi Gail
Thanks for your quick response and sharing your story and very good to hear you are doing better. I will reply in the next day or so with a full reply and more info. My house is for sale and I have a showing tomorrow and was in town all day today so a little under the gun here…

Bellalarke

Bellalarke, sounds like you have a full plate. Hope all goes well.

Bellalarke said:

Hi Gail
Thanks for your quick response and sharing your story and very good to hear you are doing better. I will reply in the next day or so with a full reply and more info. My house is for sale and I have a showing tomorrow and was in town all day today so a little under the gun here...

Bellalarke

Well, it has taken me almost three months to get back to this discussion. Partly because I was thrown into a tailspin by the thoughts from Dr. Honey. I’ve had my head down in research … or drawing or painting or writing which is what I use as a focus to NOT think about pain or pain stories or therapies, etc when I just can’t deal with the whole pain world.

But I do want to share what I’ve been learning about: Voltage Gated Calcium Channels (VGCCS), the TRP family of ions, and another biggie, Acid Sensing Ion Channels and how all this relates to pain and neuropathy.

I had one Botox treatment last May for occipital neuralgia but it didn’t do anything. I will be seeing my neurologist in early December and will discuss a new plan of action now that I have been diagnosed with neuropathy and not four different neuralgias!

Travel from where I live on my small island to Vancouver is difficult because it’s so painful for me to travel, and expensive. Still have not sold my house. (A couple came close to offering and then she fell suddenly I’ll with colon cancer…oy vey.)

I do hope better days are coming. I’m now five years in to daily pain. It’s wearing me down to the ground. But oddly, I find the science of the ion channels comforting in the fascination of it all. So now that I am not hoping for surgery to help I am hoping for science to help.