Friday, July 16, 2010

Lack of Resources-

I spent yesterday looking through RSD pages online (my favorite), in hopes of finding a a specialist or center that would be more effective in my treatment.  In one support group, the most common thing I read was- "don't let your doctor just put you on a some opiates, and forget you for a month or two".  That rang too true to my ears.
Since being diagnosed this past Spring, I had only seen my doctor twice, and all he had done is recommend that my GP continue to prescribe me Percocet, and that I have 3 Stellar Ganglion Blocks (my second one was today).
 Essentials of Musculoskeletal Care (3rd Edition)
I still haven't seen him since my RSD, or what I am certain is RSD, spread into my leg.

But I did finally locate a group that promotes RSD research and Legislative Change.  Check it out. I found it helpful.  It has great resources.

After a long night of intense pain, I woke up, and was denied breakfast.  Luckily, the block was scheduled at 11AM, or I might have become ill tempered. My mother and I made our way to the out patient clinic, a 45 minute drive from our home, where sat in a overstuffed plastic chair, covered in heated linen.
About one hour later, I was wheeled into 'surgery', where they proceeded with the Stellar Ganglion Block.  An overly creepy nurse would stroke my head, and tell me I was a 'good patient'.  I better be, to allow a woman who just told me I was crazy to think I had RSD in my leg to shove a needle in the front of my neck, with no medication.
On the Functions of the Sympathetic System of Nerves
But I digress. I had been having chest pain for the past week.  I was reading from the first site, where I get the most consistent information-

The staging of RSD is not as critically done on the basis of dysfunction (stage I) meaning abnormal function of the sympathetic system in the extremity, dystrophy (stage II , meaning trophic and inflammatory changes, skin changes and other signs of inflammation), atrophy (stage III, meaning usually minimal degree of atrophy in the involved muscles), or stage IV (meaning disturbance of the immune system, suicidal attempts, stroke, heart attacks, intractable hypertension and chest pain, and in some cases development of cancer). The prognosis is more related to the temporal development of the above four stages.
 And there was more involving Stage Four-
Stage  IV: Identifies the final stage of  RSD / CRPS manifested by:
1. Failure of the immune system, reduction of helper T-cell lymphocytes and elevation of killer T-cell lymphocytes.  This is in contrast to the opposite, up-regulated function of immune  system in early stages.
2. The hypertension in early stages due to alpha-1 up-regulation reverses to eventual exhaustion and to the common occurrence of orthostatic hypotension in this late stage. Blood pressure changes in this stage are due to autonomic failure. The failure of the sympathetic system exaggerates the response to drugs that lower or raise the blood pressure.
3. Intractable  generalized extremity and visceral edema involving the abdomen, pelvis, lungs, and extremities due to long-standing disturbance of sodium-potassium and calcium magnesium pumps usually left untreated for several years.  The same organs may eventually be subject to multiple abscesses due to failure of immune function.
4. Ulcerative skin lesions.
5. High risks of cancer and suicide.
6. Multiple surgical procedures seem to be precipitating factors for development of stage IV.
This late stage is almost the flip side of earlier stages, and points to exhaustion of sympathetic and immune systems.  Ganglion blocks in this stage are useless and treatment should be aimed at improving the edema and the failing immune system.

These all led me to believe my symptoms were all related to the RSD and much more serious than I thought.  I wanted to talk to my doctor.  But he was not there today, as I was told he would be.  
The Stellar Ganglion Block only increased my suspicions.  So far, 4 hours after the procedure, I have had no chest pains. Is this a coincedence?

And the pain in my leg is significantly less.  Do I wait until August to see my doctor, or do I switch teams, and start the trip almost 2 hours to get what could be better care.  I would have to rely on my family for rides, but it would be for my family's best interest that I recieve better care.  They are the ones that are truly suffering.
The Caregiver's Survival Handbook: How to Care for Your Aging Parent Without Losing Yourself
For me, I am learning to cope.  I have a TENS machine for my really painful days.  My son is content to play in his playpen and watch Sesame Street.  I have a Ketamine cream.  I am thinking about getting a cane so I am not hoping around on one foot.  
But I don't want my coping to interfere with my family's happiness either.  Any sign of stress on them, and I will call the other pain treatment physicality.If Only I'd Had This Caregiving Book

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