Diagnosis

I saw the Neurologist/Pain Management specialist today. He came highly recommended from my vascular surgeon, and I can see why. He also sang Dr. J's praises to high heaven (as I do, too).

When Dr. K came into the examination room, he sat down and told me this would be a one hour visit. He would take my medical history, review my charts and then we would go over treatment options. I was quite impressed, because most doctors don't spell it out for you-and I wondered if this was because I was seeing him in a teaching facility. I just now googled his name, and he is the first google entry-more on that later.

He does his exam after taking my history and the nurse assists me in removing the Unna boot. It has definitely done its work-the wounds are shallower in the week's time. He notes the muscle atrophy, the degradation of the skin,, color abnomality, and a temperature difference of five degrees between the two legs. What does this mean? I appear to have classic symptoms of RSD, Reflex Sympathetic Dystrophy. I asked why this and not Peripheral Neuropathy and he explained that RSD is a form of PN.

Treatments for this, you ask? Well, not simple ones, that's for sure. He's recommending that I get one to three spinal blocks. These must be done under general anesthesia, because if they puncture an artery, I would stop breathing. Okay. I understand that, and oh joy, going under general? That means I don't really eat for about a week afterwards. My small appetite is going to get smaller, that's for sure.

The muscle atrophy leads him to recommend Watsu exercises in a warm pool three times a week. That's going to be tougher. I don't have a heated pool and don't know anyone with a heated pool. Because the wounds are open, public facilities won't allow me to use their pools, and I don't know that I'd want to put my open wounds in a public pool.

He mentioned that if I did have an unheated pool, insurance companies typically will pay for a heater to be installed. I joked that I wanted to buy a jacuzzi spa, would they cover that? Dr. K then said he has seen that happen, but they need to have proven therapeutic benefit noted by a doctor. So, I have to find some way to get the exercise in the heated water, have him or Dr. J note the improvement, then lobby my insurance to pay 4 grand for a jacuzzi. Have I paid enough into the karma account that this would actually happen for me?

I should also note that when I put my painful plantar faciitis heel against a jacuzzi jet for 10 minutes when we were in one in California, the relief was incredible? So two medical issues would benefit from the one jacuzzi, to be honest. Hmmm.

So, I leave with a script to get into a warm pool 3x a week. I also am given two packets of information about RSD and Watsu exercises. Then I notice that the RSD Clinical Practice Guidelines were authored by my doctor. Dr. K leads the International Research Foundation for RSD/CRPS. Dr. J, while being a good doctor and a fine person to work with, INSISTED that I must see this man. No one else. He sent me to the expert. Wow.

So, I see Dr. J in the morning to get a new Unna boot. At this point, I think I need to figure out just how long I'm going to be using them, because I can't really work on the Watsu as long as I am wearing them. Then again, I need to do some work in finding out just where I can go to actually do the Watsu.

It just hit me that if I'm up at these crazy hours, it'd be damn nice to hop in the jacuzzi to make the pain go away. Cruddy part is that I'd probably have to lay the money out and then have the insurance reimburse me. Bummer.

Comments

tobs said…
Good Blog and have added a link to you at my RSD site http://health.groups.yahoo.com/group/RSD-WorldNews/
Best wishes
Tony
Teresa said…
So Sorry you have RSD - wondering if you can give me some advise on medical insurance in Florida, we will be moving there for my daughter who has RSD.

Thanks Teresa
Suzanne said…
Teresa,

I have group health through my employer. However, if your daughter is under the age of 18, Florida has a healthy kids initiative. I don't have a link, but if you google Florida Healthy Kids, it'll probably come up with insurance information.
jeisea said…
Hi Suzanne
You are very fortunate having such a good doctor. Are you aware of mirror therapy? V Ramanchandran in the USA invented the first mirror box. Since then Australia and the UK have been involved in research. In the UK a drug company donated mirror boxes to pain clinics across the UK. Mirror box therapy was first used for phantom limb pain and now is used for crps and other things. I'm giving you the USA link to the NOI Group who have done a lot of research. I'll also give you the UK link as Dr Ilan Lieberman explains things well on that site. I know mirror therapy works for crps as I've had great relief. It is drug and pain free. Your doctor might be interested in the research.

http://www.noigroup.com/faculty-usa.html
NOI Group -

http://www.mirrorboxtherapy.com/
Mirror Box Pain Management Therapy for Hand, Foot and Phantom Limb Pain

I have a blog about what works for me. In the August archive you'll see photos of what I do which is different from a box. To the left of my blog are links to Ramanchandran's video showing the first mirror box as well as other research. I'm particularly interested in the virtual reality work being done in Manchester in the UK.

http://www.crps-rsd-a-better-life.blogspot.com

I wish you well and will put your site in my favourites to see how you go. If you have any questions place a comment and I'll reply promptly.

Jeisea

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