Quote:
Originally Posted by snowboredchick1
PLEASE RESPOND AND LET ME KNOW OF ANY IDEAS YOU HAVE.....
I want to know if anyone has found a way to make doctors listen to you when they have tried everything and none of it works. How do you get them to do what you want them to. Because I know what I'm asking. What I am asking is that they do a Sympathotamy or amputation of my right leg from about 3 inches above my knee. These are the last two things that the military doctors have not tried and they are not giving in to what I have been asking. The Sympathotamy is less drastic then the amputation of course but at the same time with the Sympathotamy I wouldn't be able to move my leg anyway so I still wouldn't be able to learn how to walk again. Incase you don't know what a Sympathotamy is I will tell you: for me the doctors would go in my lower back and follow the synethic nerve to the spinal cord and then they would cut it as close as they can and then carterise the nerve. It has been proven that it provides relief but it is really risky because of how many nerves are there and cutting it close to the spinal cord wouldn't be easy because the closer you get to the spinal column the closer the nerves are to one another. But to me I told the doc's that I don't really care any more about side affects and stuff like that because I have already been through so much and I don't see how it could make my leg any worse because I am already wheel chair bound. And that is why I am pushing for amputation because with that at least I will beable to try and learn how to walk again. And to try and live my life again.
Thank you and PLEASE RESPOND TO ME.
Tina
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Hi Tina, I am so sorry you are suffering so much. RSD is a terrible disorder, with so many losses. I didn't really find a well qualified Dr. for 9 years and have been with him 6 years. I have full body RSD or generalized and internal RSD. He is a neurologist, psychiatrist, pharmacologist, internist-board certified and a couple other areas. Being on the right meds can make a huge difference in the qualitiy of our life. Besides pain meds-vicodin, anti-anxiety meds help keep our anxiety down, thus the pain level. Also take one anti-depressant that also works on nerve pain-Cymbalta. two high blood pressure meds, and a sleep med. I quit sleeping on Ambien and would be awake all night till about 6 a.m. He put me on a 200 person trial study for seroquel and I started sleeping 10 hours a night. I didn't need the 300 mg. of seroquel xr so asked to cut it in half and he did. I still sleep 10 hours a night.
Where do you live? My Doc built 2 clinics and put HBOT in them both. HBOT increases circulation and has been known to help. The Military just put in I think 20 HBOT in a VA hospital in Florida. The world renoun neurological hospital Barrow's Neurological Institute , here in Phoenix, AZ send their patients to my Drs. clinics for HBOT. Also other VA patients are sent to my Dr. Clinics for HBOT.
Maybe about 3 years ago, my toes started curling up off the floor, my doc had me swim everday and do certain exercises-In 4 months, my toes were touching the ground again and walking good.
My Dr. has a high regard for the ketamine infusions. He is in the process of having a compounding cream made up for me that includes ketamine, lidocaine, a couple anti-inflammatory meds??
Tina, in the last few weeks, there has been a lot of discussion on NT about amputation. If not this front page, look at the one before it. A lot of good thoughts.
When I was diagnosed full body or generalized, my neuro suggested I see a psych. and I found this dear psych that also has all those other degrees.
A great number of us have seen a therapist. In fact back in early 80's I saw a therapist for 2 plus years to help with loss of my parents. I still use the skills I learned to help me deal with this monster.
From reading others, a great number of us have taken different med, till we hit the right combination, that is different for our individual bodies and reaction to meds.
My Dr. just reminded me water therapy, swimming was one of the ways I did best with. All massage therapy was exceptional along with physical therapy. My left hand is crippled-delayed diagnosis and treatment, but the rest of my body is mobile. But I exercise everyday and struggle with pain and inflammation- I work on anti-inflammatory diet.
There is so many compassionate, combined educated friends here that will be willing to support you and share their knowledge. Again, welcome, one of your new friends, loretta
