I'm so sorry your daughter has this terrible disorder. I'm a Mom with it, including the internal area and full body. What kind of treatment is she getting. I'm fully mobile thru physical therapy, massage therapy and swimming with exception of one hand- 50% frozen like a claw-delayed diagnosis and treatment. I have a wonderful neuro, psych, and pharmacologist call him my 3 in 1 doc. I'm thinking of HBOT treatment. He just built two clinics with them. Arizona Lots of wonderful informative, caring friends here. Please let us know how we can help. One of your new friends, loretta

Kate is 22. She has 3 inch lesions all over her skin, and is barely mobile. her right leg is almost fully shut down. She cannot eat and we are lucky to get the drinks in her. Her Gastro Paresis has caused bezoirs in her stomach and they intern caused a fungle infection in her GI tract. She is becommimg incontinent as well and is actively bleeding from her kidneys. She is on the normal meds Neurontin, Kalonopin, Trazadone, Morphine ER as well as Percocet as needed. she in on a water pill, Cardio meds for rapid heart and some GI meds. All the docs around here dont know waht else to do. Her doc here got in touch with Schwartzman who advised that nerve blocks etc at this point will do nothing. I thin they are discussing the 4hour/3 day Ketamine. but of course who knows when that will happen. Prayers!!

Lisa,

What concerns me about your post is that you say your doc said if this doesn't help nothing will.

To the best of my knowledge, that is just plain wrong !

The SCS does work for some people, which can be important to remember because many of the success cases are not still posting here. Maybe you can ease your pain with a SCS

There have been many posters here who have unfortunately found it has made their condition so much worse. That is a serious consideration.

There are other options out there. It concerns me that your doc wouldn't mention them and totally discounts them. HBOT and ketamine might not be realistic options for you (or many of us) because of insurances refusal to pay, but there is also the implantable pain pump. Look for posts by Lost Mary....she is having great results from hers

Since I messed my post up I will rewrite it and I am sorry about the mistake. I was told similar as you by a doc but it was wrong cause then I went for other opinions and was given many other less invasive options. I am not sure what treatments you have had but could you go for another opinion? Sorry again about my post. I have to proof read more.

oh, I have said and typed things before that really sound desperate and end of the line for me.. it just plainly comes out wrong! I hope this what you possibly mean't by that statement..it may have been what was in your heart at the time, which one of us have not been there before?? Or it may be what the dr. said or implied..the bottom line is we are never with out hope or intervention..our greatest determent is money and the lack of medical knowledge, and Dr.'s... the hop in our hearts and determination far our exceeds the support, medically that we receive..thankgoodness we have eachother to clearify and bounce our sad, ill hopeless feelings off eachother..as lets face it..we have a huge painful monkey on our backs..and we can't shake it..no matter how we try...it's going to be ok..one day at a time and please... never give up hope on trying..as our lives are priceless and we only get one shot at it..so do your best as well we all should..and when you are at a loss..come to us..just don't ever feel you are out of options!!

Many painfree hugz....

Kathy

[QUOTE=keep smilin;643105]oh, I have said and typed things before that really sound desperate and end of the line for me.. it just plainly comes out wrong! I hope this what you possibly mean't by that statement..it may have been what was in your heart at the time, which one of us have not been there before?? Or it may be what the dr. said or implied..the bottom line is we are never with out hope or intervention..our greatest determent is money and the lack of medical knowledge, and Dr.'s... the hop in our hearts and determination far our exceeds the support, medically that we receive..thankgoodness we have eachother to clearify and bounce our sad, ill hopeless feelings off eachother..as lets face it..we have a huge painful monkey on our backs..and we can't shake it..no matter how we try...it's going to be ok..one day at a time and please... never give up hope on trying..as our lives are priceless and we only get one shot at it..so do your best as well we all should..and when you are at a loss..come to us..just don't ever feel you are out of options!!

Oh I AM SO SORRY! I am going to correct what I meant on my post. I meant I agree with the other poster that the doc who made that statement to you is wrong. That is why I went to explain how I was told what you were about the scs but did not do the scs and ended up trying less invasive and was given other options in treatment. I agree we can never give up hope.I know a girl who it took trying many different treatments but she is in a really good place now with her rsd and back to living life. I am so sorry again. I have had lack of sleep for many days in a row and high pain. I have to proof read.

[QUOTE=daniella;643135]

Lisa,
If the SCS doesn't work there is the pain pump. They can put just about any mix of meds a person would need in one of those & they go into the spinal fluid directly. SCS is not the only thing that can help. In fact I would go for the pain pump before I would go for an SCS. I have just read too many horror stories vs good ones.

DebbyV

Saw Dr Schwartzman on Monday. Katie's involvment will need the coma treatment, however we are trying the 5 day in patient ICU at Hahnamann first to see if she can get some relief in the mean time. Praying that Katie experiences the benefit like so many have....Katie's bladder has shut down at this point and she is near inability to swallow. Cleareance from Cardiology and Physc and then admission