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

Dear Tina, Please don't try either one. I have had RSD since 1986 and had 3 sympathectomies, they do not work! the sympathetic chain grows back with a vengence and I think they did mine so many years ago that they had'nt realized that they are worthless, I didn't even know that they did them anymore. And to have your leg amputated is just too final and you most likely will have phantom pain, so you may as well keep the leg. What else have they done for you to try to keep your pain under control? You will most certainly get advice from other people on this board, so don't do anything drastic. The group of people on here are a wealth of info., so please stay strong and wait for more people to answer your dilemma.
Your friend Wendy

Hi Tina,

I'm so sorry that you are having such a hard time.

Do you have a good PM doc?

It has been proven that sympathetomies and amputations don't work for RSD. I've had lidocaine infusions and ketamine infusions that have worked. Lidocaine was very effective for relieving some of the terrible burn in my leg. And ketamine has given me my life back (although it's not perfect).

I would suggest that you keep fighting for the treatments that work, and not focus on the ones that don't. A good PM doc will help you with that.

Please take care of yourself and good luck. We are always here for you.

XOXOX Sandy

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

Tina, I feel your pain. I have been that desperate. Sympathectomy doesnt work when you have SIP which i am sure you have. This means the brain has found other paths so cutting the nerve wont help. Amputee, especially after living with pain for so long will have a risk of phantom limb pain and risk RSD spreading worse because of surgery. I agree with Loretta, there are so many different combinations of meds. I, with my pmdr. have changed one at a time and found Elavil helps me to finally sleep. It is time consuming but its worth it to find just what works for you. Hot water therapy has really made a difference with my mobility. Psych relaxation techniques and learning to let go of the fear and living in the moment has helped. He has also recommended books like, full catastrophic living or nothing special living zen.
hang in there. momof4

I agree with Sandy on this. I would find the right Dr. that will try new treatments on you and get your pain level to a place where you don't think of either of those options. From what I have seen with friends, neither work.

I begged my PCP for years to cut my arm off. The man was determined to get me to a place where I didn't want that. I spent years in PT, saw several PM Drs., and Neurologist. I was very suicidal too. I was to the point, had my PCP not jumped in and studied up on my RSD and other medical problems to help me, I know I would not be here today.

There are a lot of options that might help you that most likely you haven't tried or had and each Dr. has new ideals so don't think one Dr. is going to help you unless he is caring and determined to.

I get Lidocaine injections now, but I have had blocks, PT, surgeries, any meds I need and have gotten to a better place. I am not well but better.

I see a lot of improvement on here with a lot of the people who have been on here for years.

It did take us about 8 or 9 years to get me to where I am and we still work at it but you can get there.

Councelling I believe is very important too It helped me as much as the other treatments I have had. Learning relaxation, meditation, and just finding someone that I could talk to when I needed to vent.

I hope you find relief soon, but those two treatments aren't the answer.

Ada