Wildberry,

Welcome to this site. I'm also from MN. I think that you need to be seen at a Pain Clinic, that will do a block which will help in th dx of RSD. I've been seeing the same Dr since 1998. If it wasn't for my Physical Therapist, I don't know how long it would have been before I was dx. I've also been seeing a Psychologist for my depression. If you're interested in getting the names of my Drs, please let me know and I'll definitely get them for you.

I know that I wouldn't be here today without the help that I've received, from my team of Drs. I wish you the best of luck in getting a proper dx and hope that you start getting some pain relief.

Gentle Hugs
cjay

I have spoken with many, many RSD patients through running an RSD forum, as well as emailing, IM'ing, etc. I am not trying to come across as a know-it-all, because I certainly am not, nor am I a medical professional. But, I can say that some of my members, as well as other people I met on the internet have had blocks and then had their RSD spread. Not all of them, by a long shot, I am not looking to scare anyone, but it can and does happen a lot more than one might think.

For example, my situation... I have what my PM dr called a "bizarre RSD presentation" because it started in my neck and shoulder area, then moved as follows: back, sides, right arm now left leg. Mine was all in the neck and shoulder areas until I started having injections of different meds to help with the pain, it then began to spread. Now my PM doctor has said NO MORE - even anything minimally invasive CAN cause the RSD to spread. So, in my case, I cannot have SCS, blocks (would be injecting my RSD area), no IV's or blood draws above the waist, etc. all because anything, even minimally invasive, can cause the RSD to spread. So, unless a surgery is a life or death situation, I have been told not to do it, and with the amount my RSD has spread, I wouldn't consider it.

Just thought I'd throw my 2 cents worth in on the topic, just to warn people. I was always told that all these things could be a help, but I am living with the results of what they can do, and what I have witnessed others go through.

The blocks are used all of the time for diagnosing RSDS.

I have seen so many people around here improve so much from blocks that I would encourage anyone to have them.

We had a group going for awhile a few years back and in my time with RSD I have met at least 12 people. All of them have had blocks and I think maybe one said they didn't work.

From what I see on the forum here people only have one or two. Around here Anesteolgist do a series. I had 3 but was suppose to have 15 more. I had a panic attack during my 3rd one but it did do the job. We decided to quit due to my panic attacks at the time.

I know a girl who had 100 of them to get her up and walking. I saw another girl with RSD for most of her life go to have them and she said she had never felt better in her 40+ years. I have a friend 4 doors up from me with RSD. She just went through blocks and she says she is doing better. I have been trying to get her on here but she is still working to get her mobile sat up and underpinned.

I have seen a lot of good come out of blocks and triggerpoint injections. They are using the TPI's. I have not seen many Drs. that give them though. I guess they aren't getting that popular yet. I think it's due to the fact that it takes time to give them and it's too time consuming for the Drs. There are 3 PM Drs. around here now that do them and my PCP does.

I think different areas must do different things at different steps of RSD. I would rather try the blocks and TPI's first rather then have a SCS put in or a Pain Pump put in until the last resort. I'm not saying people don't need them but they should be the last resort.

When mine first started I wanted the pain pump and my PCP held me off of getting it and keep doing the TPI's and Physical Therapy. I spent over 3 years in PT to get it calmed down. I had a great PT team.

To me calming down RSD is not an overnight thing. I think it takes a lot of time and a Dr. that is willing to give it.

I do believe in the blocks and I always hate to see someone say that they don't work because there are too many out there that they have worked for.

Ada

I understand that I should have been more clear in my reply... I am not saying that blocks have not helped many people relieve their pain, not at all. I am saying that after blocks, many people have experienced their RSD spreading, sometimes not immediately, sometimes never, but it does happen.

Let me be clear on my point. If I had RSD in my leg, would I want and receive a block? YES... But... my RSD is IN the area where they administer the blocks, etc. After telling other RSD'ers that I know, that I couldn't have blocks because they feel they could cause my RSD to spread, they were hesitant and thought that my dr and I didn't know what we were talking about. I heard a lot of "well, they helped me tremendously", etc.
But my question to them was this... "would you let then stick a needle into your leg (arm, etc) where your RSD is?" They emphatically answered "No, never"... So, that is my point. We all have to do what is best in each situation. There are many doctors who are now realizing that there are factors which can cause RSD to spread. I am not saying that this happens in a majority of cases, I am saying that it can and does happen. I would never try to talk someone out of getting pain relief, we deal with too much pain. I just feel that, depending on where your RSD is located, there needs to be some caution, as well.

Nowhere in my previous post did I say that having blocks would not relieve pain, but in my situation, as I stated above, it is not in my best interests to try.

Hi Jacquelina, and huge ((hugs))

Dealing with this is very hard! I know!

I was wondering- in all your symptoms you mentioned you didn't say that you had color or temp changes in skin, hair/ nail changes or swelling?

Just curious, because RSD includes those types of things...


Huge pain free hugs and prayers being sent your way!

Hi Jacquelina,

,

I have Bilateral TOS and had been diagnosed last April with RSD following a Right sided re-do of a brachial plexus release and scalenectomy.
My surgeon was very reputable and skillful although I had the misfortune of having RSD appear 3 months post op of a severely compressed ulnar nerve due to a large amount of scar tissue.

I had undergone one diagnostic block by my neurosurgeon. I had then been referred to a Pain management clinic when my PM doc who is an anesthesiologist did 3 Stellate Ganglion Blocks with no relief. I am currently undergoing treatment with him and looking into a spinal cord stimulator. They also have me in Bio-Feedback which has been "GREAT" for relaxation, lowering my pain levels and increasing the temp in my hands.

I had previously been advised by my neurosurgion that I should have surgery on my left TOS side due to nerve compression but I have declined due to the RSD diagnosis.

As other forum members have asked have you been to a pain management clinic that has been treating RSD patients. It is important that you find one and get a referral to be seen. These doctors have seen many RSD patients and will be able to diagnose you. If in fact you do have RSD it is important that you start a series of SG Blocks to help place your RSD into remission. You also need to know in the event you need to undergo any further surgical intervention with your TOS.

I know how frightening this is but it is also very important that you sit down and take a deep breath and find a doctor to diagnose you so you can start treatment ASAP.

I wish you the best of Luck...

&
Dawn

Here something i posted a few days back in the TOS forum... It was my first real sign of RSD.... My doctor side i already had it... No i havent seen a PM doctor because i cant get anyone to listen to me... My doc said RSD was no big deall... FINDING OUT IT IS!

I need some help with this question.... I was playing cards which really upset my symptoms.... Durning the game all of a sudden a got a really burning pain inside my elbow and then up to my shoulder neck and right side of my face... and finally in to my finger... The burning turned my arm red.... and it was a terrible pain.... Has anybody every had tempture changes in their arms.... The pain is the worst today then it has been in awhile...

I am kind of freaked out... .dont really know what it could be... Visbly having it beat red compared to my other side....

Please if anyone has any info let me know i dont see a TOS doctor for 3 weeks same with a neuroligist...

Jacquelina,

Please don't take this wrong... But in my opinion you need to find yourself a new Dr. Any Dr that tells you that RSD in no big deal has no business treating you now. He also didn't think TOS was a big deal and believe me it is people can loose complete use of there arm due to nerve or vascular compression if not treated correctly. I was fortunate that I only had to travel two hours to find a TOS specialist. Others have to fly to Denver for there treatment.

Quote:

Originally Posted by wildberry2277 Please if anyone has any info let me know i dont see a TOS doctor for 3 weeks same with a neuroligist...

I'm sorry let me correct myself are you currently waiting to see a TOS Dr for the first time or is your current TOS Dr telling you it is not a BIG deal.

"You are going to need to find yourself a PM Dr" if your Dr isn't going to refer you. My neurosurgeon had referred me to a PM Dr that was almost two hr's drive from my home. There was no way I could do that so I found my own PM doc. I knew of a large university only 20 min from my home and I called them up and did all the ground work myself. I then called my neuros office and they faxed the referral and paperwork over to them. I had also found others by researching my medical insurance and making phone calls asking how often and how many RSD patients they treated.

As for your arm turning red. I can't give you a concrete answer only your Dr can do that thru diagnostic test. That's why you need specialized test to determine your type of TOS. The redness and burning in the arm is a tell tail sign of RSD but neuropathy from TOS can also cause burning. The area that you are explaining is the pathway for the brachial plexus http://neurotalk.psychcentral.com/sh...ad.php?t=11493

The RSD forum and the TOS forum in the Sticky located in the upper left hand corner are full of information. It is so important for you to read and understand what you are going thru. On the TOS forum there is also a sticky with recommended Dr's http://neurotalk.psychcentral.com/showthread.php?t=135

I do hope that you are able to find the help you need. Neither RSD nor TOS is a problem you need to let go. They are both debilitating conditions and RSD isn't something that you want let go untreated anyone on this forum will tell you that. And the McGill Pain Index rates it the most painful form of Chronic Pain that exists today http://www.rsdhope.org/ShowPage.asp?page_id=116 So what I am saying is you need to find a PM doc that can treat you...

Please it is so important and as I said I am sorry if I am scarring you that isn't my intent but you do need to find a PM doc and a good neuro that understands and will treat your conditions.

Many Hugs and Good Luck

&
Dawn

Jacquelina,

I told you in my earlier post that I lived in MN also....forgot to tell you that I live in the Twin Cities area. My Pain Clinic is located also in the Twin Cities...in fact they have quite a few office throughout the metro area. So as I said before if you'd like the name and phone # of a clinic that deals in RSD, TOS, Chronic Pain and ect...just give me a shout and I'll get it for you.

Gentle Hugs,
cjay

Cjay,

I sent you two private messages! Doctors names and numbers would be greatly appericated! I have to make a whole bunch of phone calls tomorrow and if you already have some one good with handling RSD I would love infromation!

Please contact me!