new member looking for help for rsd problems
 

My name is Vicki...I had rotary cuff surgery 3 mos. ago. I am nearling the end of PT but am very concerned because I am still in alot of pain in my hands. It start within days of surgery and at one point it was burning, sensitive skin, nothing helped. Every five minutes something different goes on from pain to burning. Weird because its both hands!! Three fingers are better but the little finger and ring finger remain numb. I am frustrated as the surgeon doesn't really think it is rsd but primary care dr. does. I just saw the surgeon and now he gave me a card to go to a MD that is locared in his PT center. I keep praying, meditating doing everything I can think of to no avail. It seems like a Neurologist would be next...Any comments. Also this is the first time I have used a forum so not quite sure how it works,,thank you:(

Re
 

Hi there
Welcome to Neurotalk you will find many people that will be happy to help you on here.
My name is Alison I am a 12 year old girl and I suffer from RSD in my left leg and right arm. I have had RSD in my leg since the 16th March and RSD in my arm since July, my arm is getting better though.
It sure sounds like you have RSD, many doctors don't believe what sort of pain we are experiencing. I would suggest either seeing a Neurologist or getting a referal to another hospital. Are you seeing a Pain Managment doctor? Psychologist? Nurse? Occupational therapist?
Physiotherapy doesn't work on many people. I also suffer from Dystonia which causes muscle spasms, deformitie etc.

Pain free hugs
Alison
PS: To reply click on Post reply at top of where it says Vicki lee

Hi Vicki,
I am sorry to meet you under these circumstances.
Welcome & I would back up what Ali posted completely.

Of course, I don't know your insurance situation but the one thing I would suggest is to press on & obtain a definitive and TIMELY diagnosis & then pain relief & all the medical help Ali suggested + whatever else you can do.
Your idea of a neurologist is sound as a next step but a Pain Management Doc / team might be a better way to go but getting the right treatment soon is so very important.

Finding a doc who has experience in this syndrome is most important.
AMA 5 is just one of the many outlines for diagnosis (depending on the policies & country you are in). The management of CRPS is approached very differently depending on where you are in the world. In some areas they (pain management centres) are run by aneasthetists but they can be neurologists.

A doctor competent in this area as well as being caring & understanding with empathy for your situation is also important.

Meditating is a very good adjunct to chemical pain control as is Reiki but you need to really confirm that it is RSD or CRPS as it is called presently as soon as you can.......but your prompt & accurate diagnosis is pivotal.

Lots of good caring people here with a great knowledge base.
Best of luck on beating this situation. :)
Auberon

ok shoulder surgeirs now you are in my kinda world (i had a bankarts process on my right side in 2004. there are a couple of things that should be looked into. 1)ask for ct scan form lateral from the shoulder to the neck and then one down your injured arm. ooppss i probably totally should have asked is are your symptoms on the same side as your surgery...if so try to get step 1 done. if it is not it may be because of the time you were on your side during your surgery...lesslikely but possible and at least it will give you a place to start. back to number 1 if your ct scan shows no nerve damage. and nothing seems to hurt or help...hot or cold water, temperature of the air..a cool breeze, a hot sun. is the area sensitive to the touch, or can you put no fabric on the area. im only asking the question because while any doctor can order a ct scan if you tell him what you are looking for after you have the scan done you will need to see a Neurologist, PM&R,or a PM specialist. If you can find a team with multiple docs and knowledgeble staff to assist in treatment with a lot of PM patients. If not call your current doc and ask them to track one down for you.
you need to get a scan and into a pain related doc as quickly as possible.

when i had my surgery my rsd wasnt a problem but a week later i started to show symptoms so i had the ct scan and discovered that along with a dislocated shoulder i had dislocated my ulnar nerve that then sat locked up in a sling for 2 weeks...the end result a second surgery and a huge battle with CRPS:(

Hi, and welcome to the forum,
 

Another thing to do along with what the others said is to ask your PCP to send you to an Anesteologist that has an office set up that does blocks. The block will help with the diagnoses and it might help to get it into remission.

I ended up with RSD from Thoracic Outlet Surgery. I had a rib removed in my lower neck/ clavicle are to release nerves being pinched. I do believe I had the RSD from falls but the TOS surgery just brought it out more promenently.

Also as the others said, a good PM group would be another choice. I saw several Drs. PM's, Neurologist, a Rhemotolgist, 1 other TOS Drs. and none of them would diagnose me. I believe also some don't won't to diagnose it because they have it figured out how to make money off of a person and if they say you have the RSD along with what they take care of such as the tos or the rotator cuff surgery then they can't cut on you. I also saw an Orthopedic Dr. and I believe he knew what I had and didn't want to say the words but he knew not to do surgery either. He was ignorant about blocks. I have a block before any surgery now to keep the RSD from spreading.

What helped me tremendously was blocks, Triggerpoint injections, Physical Therapist that are very up on RSD, meditation, and prayer and meds. I am on very minimal meds due to getting mine into remission to a big extent.

What you will learn it is sure not an overnite thing to get diagnosed or try to get undercontrol. It seems like years for most to even get it to where they can live with it and then it's a day by day thing.

Don't give up though, you will finally find a Dr. that will know it and diagnose it and maybe help get it under control. My thing is not to stick with a Dr. that is not doing anything for you even if you like him. I have Drs. I like but that doesn't mean they are always doing what's right for me.

I hope you stick around. There is so much to learn here and many to learn it from. You will also be in a place here where you are with friends and people who can relate to what you are going through.

Ada

Some additional thoughts
 

Hi Vicki,
I echo what everyone has said - probably better than I did but would stress what Ada said in the quote below:

Don't give up though, you will finally find a Dr. that will know it and diagnose it and maybe help get it under control. My thing is not to stick with a Dr. that is not doing anything for you even if you like him. I have Drs. I like but that doesn't mean they are always doing what's right for me.
Could I add:
Never give up, NEVER give up, NEVER GIVE UP!
Be prepared for each consult with your questions organised and what you want to say planned....even using point notes.....research before you go so you already have a good idea of what to expect and if you aren't happy with what is said ask for a new appointment SOON so you can research before you commit to a treatment.....and if you can say it if you are not comfortable - say NO (I know that depends on circumstances).

then.....if you remain unsure throw it out onto this forum or any other you feel comfortable on.
I hope you don't mind.
Cheers
Auberon