Hope For Treating Intractable Pain

Here is part of an email I received from a mom friend who recently attended a national conference:

"I met Dr _______ at the conference, he is a functional neurosurgeon who specializes in surgical treatment of intractable pain. He said there are only 30 of his kind in the US and there are lots of things that can be done for patients, but they never get to see a doctor like him so they suffer needlessly."

This doctor spoke at the conference where most of the people at the conference (or their family member) suffers from head pain.

I searched for him on-line, and I see he does intrathecal pain pumps.

I haven't talked to my friend to find out what other treatments he may have offer to people with head pain.

But it just gave me hope, and I wanted to share it with you.

She is thinking of taking her daughter to see him.

He is in Texas. If you would like his name, you can PM me.

Cheryl

Cheryl,

I'm glad you found someone who gives you hope!

Hugs!

No thought of seeing him because we have a pain doctor here in my state who is treating intractable head pain patients. Last year he approved Anna for a trial of an intrathecal pain pump. We just don't know right now if that is the right thing to do.

But I just wanted to share with others here--the possibility of finding an innovative doctor, when traditional migraine treatment doesn't work out.

Cheryl

I just did a google search on the pump. Very interesting. I'm glad you have someone closer who is considering that option for Anna.

What are some of the criteria you're considering?

We need to have a face-to-face discussion with a Chiari neurosurgeon to talk about the possibility. Maybe we can talk about it tomorrow in our appointment.

Her LP shunt leaked CSF, perhaps because her dura is weak. We don't want another CSF leak with a pain pump. And we need to talk to a Chiari neurosurgeon about threading the pain pump catheter up to C-1 to C-2 because Anna has had three surgeries in that area.

We don't know enough about any possible risks in Anna's case to move forward with it. We need a neurosurgeon to help us sort through it. That's the scoop

Cheryl

Thanks Cheryl.

I read something and it sounds so ideal, so I'm always interested in the pro's and con's. Thanks for taking the time to educate me.

How is Annas vision? Still improvement?

It is Anna's unique circumstances that cause us to hesitate. Otherwise I think we would have immediately jumped into it. It was in March 2009 the pain doctor offered to do the procedure on her.

There is someone here from Ronda's (he never posted much though) who has the pump for HA pain. He said it is the best treatment yet for him. He lives about fifteen minutes from us and sees the same pain doc. Every time I talk to him, he is so enthused about what it does for him. And I think it has been about two years now?

Today Anna has the eye HA again, and her vision is blurry (but not terrible). Yesterday her vision was good though, and a few days before that.

I have no idea what is going on

Cheryl

Another friend called the doc I mentioned at the top of this thread. This friend's daughter has an extremely complicated history, and her head pain is horrible. They got an appointment very soon. So I'm anxious to hear how it goes for them.

Cheryl

The appointment went well for them. He has a whole team that will be looking over of my friend's daughter's medical records and scans. One of the things he mentioned was deep brain stimulation (for head pain). I'm not sure how it works, but I have heard of it.

Cheryl

Other than deep brain stimulation and pain pump, are there any other options with this doctor?

Just to explain that my friend's daughter is super complicated because she has a history of multiple CSF leaks, a shunt for elevated ICP, plus some other serious pain "stuff." (Dr. Grumpy's favorite word, LOL)!

So the things he was mentioning for her were probably unique to her situation.

He didn't even get into everything that he does in his practice.

So I don't have a good answer for that question, Leslie! But I'll sure be interested in how it goes for them.

Cheryl