NeuroTalk Support Groups - A Prominant Pain doc told me I dont have RSD?

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - A Prominant Pain doc told me I dont have RSD? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/141076-prominant-pain-doc-told-dont-rsd.html)

In regards to the Calmare treatments here in RI with Dr. D'Amato - I have heard both really good reports and really bad reports. The good reports came from an RSDer who had it in just one limb - she was getting better and knew of others that were also having great results.

However, with full body RSD it seems that the Calmare treatments have not been successful. I recently spoke with a Mom whose daughter had a truly awful experience in RI, and who was aware of another full body RSDer who was only 17 years old, who landed in RI Hospital from the treatments, with anti-narc docs who wanted to take her off all her meds!! They were apparently the first 2 full body RSDers that had tried the treatments. Calmare did not work for either one of them at all, it just made their pain worse.

Just wanted to give you the heads up...

Good luck to you, Sandy

Quote:

Originally Posted by rachel's daugther (Post 727624)

Hello Debbie
I can understand your frustration. My daughter who was first diagnosed in Feb 2010 with CRPS in her lower left leg, first by her orthopedic Doctor and than one month later by Dr. Norman Hardin at RIC. She has been through a lot this year and has seen a lot of experts including Dr. Timothy Lebenow at Rush and others all saying RSD. She has done RIC, Nerve Blocks (great relief, short periods of time) lots and lots of PT/OT but one thing did help her. We went to Pediatric pain rehabilitation clinic at Children’s Boston Hospital in Oct. We were there for 4 weeks. When we left she was off her crutches, was able to wear boots/shoes, clothes and starting running. Her pain level never changed but her sensitivity was much better; her skin stopped turning colors and was back in school. Yes, she has her good and her bad days but was functioning well.

Recently, she started getting “popping” in her joints, once in her wrist which lead to a spread in her left arm and then a pop in her shoulder which lead to a spread. I went to see a rheumatologist who knows about RSD to discuss this and he tells us she does not have RSD, if she did have it she does not anymore. He feels she has an entrapped nerve in her knee; trauma educed arthritis in her wrist and shoulder and may have fibromyalgia. Wants to do many tests which includes a EMG (worry some because heard really painful). All of this comes out of nowhere. We were planning to go to Rhode Island to try the Calmare treatments in January, but now we are not sure what to do. We will get ex-rays, blood tests, but hold off on the Bone Scan (doc says this will confirm whether she has RSD, which I don’t believe, to many tests come back normal, and still RSD) and EMG until we get second opinions. We have made plane flights for R.I already so that is still our plan to go. So confusing, so many opinions from different Doctors, very hard to know what to do.
Good Luck to you.

PS: Mike, Thank you for your posts on this site, you are so helpful and I have learned so much from your posts.

I saw Dr D"amato for the treatment and it did nothing for me...I think you are correct that it works better for those who have it only in one limb. The doctor is pretty nice....just be prepared for a long explanation of this machine with a slide show- about an hr. It did not make me worse so I guess it is worth a shot if you have the $$- you may be able to negotiate the price a bit, If you have any questions please ask!

Debbie

Quote:

Originally Posted by rachel's daugther (Post 727624)

If the calmare tx does not work maybe you should consider going back to the Childrens hospital...I would trust them more then the rhemetalgist you saw...

Quote:

Originally Posted by gabbycakes (Post 727690)

Hi Rachel's Daughter,

It is a crazy road but keep pushing eventually the right doctor and facility will click. Have you thought about NYC. From what I read you daughters problems started out to be orthopedic in nature. I'm not going to bore you with my whole story. But after I had a serious fall and almost lost my arm,long story. I went to many doctors allowed them to do surgeries that came out completely unsuccessful. Just my luck my son's hockey coach worked for the NBA and was high in the rankings so we asked him after not getting any better where do the Knicks send there players, the answer Hospital for Special Surgery. I know everyone tells me to get off that HSS band wagon. But to me they saved my life, it's taken some time but I went from absolutly no functioning in my arm, RSD that was making me literally lose my mind and I could only use 1 arm, thank god I am a lefty and my right arm was hurt.

Anyway the facility is unbelievable everything is done in a thoughtout methodical way that's just the way the whole place is run from the best surgeons to the janitor. I have heard the Peds. area's are great. There website is www.hss.edu.

Today,7 years later, I am on permenant disability but do work PT as a Business Consultant,that's what I did prior to getting hurt, I have 1 client close to home. I am able to work while being on SSD, but I have to watch how much I make, it's not the hours. Any honestly I could never go FT, as much as I would like to. My area of work can be stressful and sometimes the stress does flare me plus the other wonderful issues we have to deal with when you have RSD plus I also have PN.

Good luck,

Gabbycakes

I wish you the best. If you are considering going to HSS and have any questions please feel free.

Gabbycakes

Gabby,

I agree with you about the HSS- I had my 5 day ketamine infusion and they were great! But besides that what else can they offer, Dr Richman did my procedure.

Deb

Quote:

Originally Posted by debbiehub (Post 727884)

Gabby,

I agree with you about the HSS- I had my 5 day ketamine infusion and they were great! But besides that what else can they offer, Dr Richman did my procedure.

Deb

Hi Deb,

I think what HSS has to offer that other facilities don't is that they specialize in all types of orthopedic issues which is such a vast statement. The are rated #1 in Orthopedices in the US if not the world. RSD mostly starts with a orthopedic injuiry in 90% of the cases. So if there is any place that can find a possible reason for the RSD, a possible lingering problem other than the RSD or a better way of treating it it's there. They are one of the biggest research facilities for orthorpedics so they always have the latest technology.

I know your saying she just said she's searching for a different doctor, yes but what I'm searching for is someone to find something and then I would bring it right back to my surgeon at HSS and show him. His last statement to me was "If someone finds something I didn't show me and I'll fix it in a minute for you, but I don't think they will and I won't do another surgery on that arm unless it is going to do good". My DX stands now as RSD and PN. But I believe there's a lingering something, that 1 is keeping the RSD going and 2 keeping me from coming full circle with this injury.

It's worth a shot especially if you are willing to travel and have the means to do so.

Gabbycakes

Thank you everyone for your replies, I appreciate hearing from others who know what my daughter is going through. I believe we may wait on getting the Calmare treatments. I did review one of the girl’s blogs who did go for the Calmare treatments and it did not end very well at all. I am also following some other people going and they are not responding very well. I am just so disappointed, the RSD just traveled to her arm within the last 6 weeks. I wish we would have started this road sooner when it was only in her left lower leg.

We are heading to Boston in January; we were to stop at PPRC first for a follow up on her prior treatment and then go up to R.I for the calmare treatments. I will take the suggestion to look into seeing someone there, maybe get a second opinion. I really trust her doctor at the PPRC so it will be good to get his opinion too. Maddy is scheduled to get a blood test and x-rays, that’s as far as I am willing to go as of now.

Gabbycakes, good luck with the IVIG, have read some good things, please keep us posted

Again, thank you everyone for your reply, I will update soon

HI Deb, Well Ive met you- seen you and i think you do have rSD -how frustrating I mean for Gods sake you've been feeding your family off of paper plates for what 5 years now, i am so frustrated for you. I went to a pain management doctor not to long ago that wanted to question my rsd too.This is after all my suffering -the coma treatment etc. I mean give me a break, yes i wish, of course i did not have RSD as you do , but as usual he didn't have another reason for my lesions, full body pain etc. so please do not put too much weight in this , its happened to me too. I m very sorry this has happened to you. its so upsetting. my best to you Deb. cz

Quote:

Originally Posted by CZZ74 (Post 745918)

I know you are right. I was so frustrated with him -especially when he recommended a muscle biopsy!! But when I tired to say something he said "are you the RSD expert or am I" - F-U. I left you a pm

Deb