I had my initial consult with a top pain specialist yesterday morning lasting about 45 min with the doctor. Luckily my wife goes with me on all of these appts and provides the docs with her perspective, which is very helpful to them and me.

Bottom line, the doctor was wonderful in that he did not beat around the bush, performed a thorough physical and neuro evaluation and was straight forward with is assessment. I was a tad surprised as I believed he was the pentacle of the medical field of treatment, if not a last resort.

He said there was nothing he could do for me due to the severity and advanced progression. He confirmed I was a very complicated and complex case and he had only seen about three other patients like me in his career. OK! So what's new, right? Not like I haven't heard all this before. He suspects something I've never heard of called Central Pain Syndrome, I think. He did say he knew of someone who is a top physiatrist (sp) who specializes in patients post severe stroke and with advanced neurological diseases. I've never heard of this type of doctor.

The pain specialist said he knew him personally and would call him that afternoon, discuss my case and arrange an appointment for me. He fully understood I'd been dealing with this for 10 ears now, no longer interested in further testing, 2nd/3rd/4th opinions, university visits, etc. I am tired and don't want to play that game any more. In addition, he is going to call my PCP, whom he knows, and discuss my case, giving his recommendations how to tweak a couple of meds for greater efficiency.

Now I have to research what a "physiatrist" (sp) is and what they do. I wouldn't have even heard of "PN" had it not been for the specific board but anyone know of this Central Pain Syndrome? Still cautiously optimistic and will continue to simply "go with the flow." I'll keep you informed.

I'm scheduled to see one next Mon. This will be my 2nd visit. The first time he was painfully candid. He said my chemo induced PN is irreversible and prescribed Cymbalta which I haven't started yet.

He sees mostly cancer survivors & treats them for residual chemo effects. I'm going to request an MRI just to see if there's a spinal cause for the PN progression.

I hope you get some answers if you see the rehab doc.

Physiatrist.

http://www.aapmr.org/condtreat/what.htm

Hi Craig!

I am glad you have had your appointment!
I am sorry it is leading you places you feel you are not so interested to visit.
I do understand being tired of the talking, the testing, the med trials, the re-testing, the various opinions, the politics, the re-testing, the side-effects, the re-testing and the... overall chase.

Yes, I have heard of this type of specialist. Our hospital system used to have a physiatrist. With budget cutbacks, we do not have a qualified one anymore. (We have one, but he is reportedly so poor at this that no doctor will refer patients to him.)

I have also heard of centralized pain syndrome.
I have also been told I have this in addition to my other issues.
Do I truly have this? It may depend upon whom we ask.
At this time, all of my current doctors agree on this.
Yet, they may change their minds anytime. We will see.

They had started to add in meds like Namenda, etc.
I had tried it for awhile and then stopped most of the extra meds.
In this past Fall, I was told there was nothing more they could do for me, except to admit me to the ER for a few hours when in severe pain and give me more morphine IV to try to break the pain cycle for awhile. This was their bottom line as the very best they could offer to me.
(There was talk of a drug called ketamine, as well. I have never taken it. I hope to never have to take it.)

They also had told me to order my wheelchair now. (Last Fall, and again.)

After dumping a few meds, again, I am still in pain, but I am not needing crutches to walk to my kitchen. My feet are recovering yet again.

Everyone is different. I cannot suggest anyone else is reacting badly to meds. I only know myself, my own pattern, and I also know when I truly think "they" are "off" in what they are saying or in what they are prescribing.

Please allow me to say I have good doctors. Most of them also teach at a teaching hospital and/or do research...and are published. Yet, I still l have really good hunches about my own treatment(s). They types of treatments I had wanted to try were the types they had said my insurer would never cover for a centralized pain syndrome patient. Yet, hey... why not and.... that is not all I am! I am still bucking them on this.

I do hear you, Craig!
It all gets old!

Please let us know how you are doing!

My very best to you and to yours!

~DejaVu

Hi DejaVu,

All I can say is "THANK YOU" with sincere gratitude and appreciation.

OH! Just one more thing................

"AMEN!!!!!"

Well, Craig... I am glad you appt went well. That's most of the battle over.

Keep us in the loop about solutions, and how you are doing, okay?

--refers to a particular type of stubborn neural pain that results from damage to the spinothalamic tracts in the brain, which run from the thalamus, a central relay for sensory information, down the spine and upwards into the cortices. Damage there tends to compromise the ability of the body to switch pain signals on or off so that one has severe allodynia (pain perceptin wothout noxious stimulus causing it) along with pain perception way out of proportion to central stimulus.

It is common among post stroke patients if that stroke involves the spinothalamic tracts, and is also the source of a lot of pain in people with sensory multiple sclerosis who have lesions in the area (Montel Williiams is a well-known sufferer) and can also result from meningitis, B12 deficiency, and a host of other conditions.

See:

www.centralpain.org

It's certainly not easy to treat--many of the strategies are the same as others used for neuropathic pain. I've known central pain people who are on much higher doses of anti-epileptics than most doctors would feel comfortable with (such as 900mg Lyrica, or 4800mg Neurontin) in order to get some decent relief.