[Dubious]

My last visit with my surgeon who perfromed the surgery which started my whole RSD experience, told me something very interesting last week. I am 15 months out from a horrible shoulder surgery.

He said, "I really don't know what to make of your RSD; I've had several RSD patients over the years and they ALL got better after stellate ganglion blocks."

I was speechless.

Has this been ANYONES experience with their MD? You were fine after stellate blocks? Everyone get better?

I'm curious...

What do you all think?

[Dew58]

I was dx with CRPS I 15 months out, and told that too much time had passed for blocks or stimulator to do any good for me. I feel "kicked to the curb" as I wasn't give the opportunity to have treatment other than pain medicine.

However, from what I have read in here, the blocks don't always last or work..so, maybe I should be glad..I don't know.


Dew

[hope4thebest]

Hi Dubious,
First of all, the ortho surgeon who did my ankle surgery consistantly ingored my complaints about how much pain I was in...my appts. would last for two to five minutes...

One day he didn't even ask me to remove my sock so that he could look at my ankle/foot....
In June I had asked him if he thought I had RSD ...he responded "no."...(I had never heard of RSD but had recently encountered it on the web as I was trying to self-diagnose as to what the h--- was going on with my foot..

Finally in August he said..I think you have RSD.....

Then he said, "Ah, but they have so many wonderful things now, like lumbar blocks and cymbalta..." as though he was talking about something superficial and not serious....almost like 'small talk'

(keep reading...I have a point to my story...)
he then told me he would not have any more appts. with me and that he was turning me over to a pain management doc...not the one he usually works with, but a new, young promising pain management doc....

My opinion???? I think he was trying to minimize his part in a delayed diagnosis....

I think, perhaps, your doctor made that comment because he wanted to convey a message that his RSD cases always resolved successfully...that he didn't have 'unsuccessful' experiences in his practice...
This was my first reaction when I read your post....
I am truly, truly sorry your surgery and recovery have been so challenging...

hope4thbest

[Jimking]

My wife who has RSD has experienced everything stated so far. Amazing how those with RSD experience the same thing dealing with this system 90% of the time. My wife was kicked to the curb for years before getting good treatment and never had blocks performed because of the risk and length of time she's had the condition.

I do realize time needs to pass in order to give a firm diagnoses of RSD, this is not always the case however, there are other reasons for this behavior. I'm very curious to know if those in Europe experience this kind of treatment frequently.

[Jomar]

He said, "I really don't know what to make of your RSD; I've had several RSD patients over the years and they ALL got better after stellate ganglion blocks."


I'll add too, that most likely ones that did get cured or into remission aren't on forums or searching for answers because they are doing well...

On the Thoracic outlet forum we wonder that same thing .. how many did find help or have a good surgery result, we'll never really know because they are not online looking for answers.

[Dubious]

Originally Posted by Jo*mar

He said, "I really don't know what to make of your RSD; I've had several RSD patients over the years and they ALL got better after stellate ganglion blocks."


I'll add too, that most likely ones that did get cured or into remission aren't on forums or searching for answers because they are doing well...

On the Thoracic outlet forum we wonder that same thing .. how many did find help or have a good surgery result, we'll never really know because they are not online looking for answers.

That is a very good point, Jo*mar. There would truly be a little selection bias here, but then on the other hand, when looking at a diseased population, it doesn't get anymore concentrated that this!

[loretta]

Hi hope4thbest,
Your reaction to Dubious is right on target in my opinion.

The first thing your orthopedic surgeon needs is a big WAKEUP CALL of being handed notice of litigation (LAWSUIT)
I got handed off too. after my surgery, The rehab dr. oversaw my 100 physical therapy sessions. I did the 100 massage on my own. The physical therapist told me, not to be surprised if my other shoulder froze up too. It did about a year later. We had moved to different state. More therapy and massage therapy. got most of use back. Then it got in my left hand, which is partially paralyzed. Was misdiagnosed, and by the time I was diagnosed with RSD (which began with the breast biopsy four years earliear) four years had passed. I have full body RSD, but am doing better than ever thru a wonderful Dr. swimming,meditation, still working on 'letting go' Guess I need to write those Drs. a letter for my mental health. smile Your and Dubious letter set me off this morning. I feel so bad for ones like us that get delayed treatment and diagnosis and all the Drs. think about is getting rid of us and hope that statue of limitations pass so they can go on with their 'perfect' record. When in reality, they should be paying our medical bills and meds. I'm going to do a little journaling and make my huge list of things to be grateful for, which i am grateful for a lot, including this forum and all you wonderful friends on it to encourage each other. Thank you, loretta

[ali12]

Hi Dubious,

I too don't really understand why your MD said that everyone he has treated as got better after a stallete ganglion block! He should know if he knows anything about RSD that what works for one person, doesn't work for another and that there is no treatment that will 'cure' RSD!!!!

I think some doctors like to make themselves sound good and as though they can make everyone better, rather than admitting that they wont be able to in all cases unfortunately. My Doctor used to be like that but has times gone by, he has realised that there isn't much more in the way of treatment options he can do for me unfortunately.

I'd talk to your MD and let him know that you are confused about what he said. I hope you get some answers soon - please let us know how things go!

[loretta]

Hi Dubious,
I think your surgeon is a jerk and can't wait till the statue of limitations passes, when you won't have any recourse for his responsibility in delayed diagnosis and treatment. I don't believe what he said. Only a subpoena would tell the truth.
Most states, the law reads you havae 2 years from the 'incident' or surgery' or omission of diagnosis or treatment. Or 2 years when he should have known you had RSD.
Have you considered seeing an attorney, not his golfing buddy, but a malpractice attorney in the closest large city from you?
It's not easy, but we sued the Dr. that misdiagnosed my mother and caused her death in less than a year. We had her video deposition, due to knowing she would not be alive for trial. It was shown at trial by judge-not jury and were awarded very large settlement.
I couldn't have filed a suit for myself, but didn't. I had no idea I would go full body from a simple breast biopsy. He couldn't wait to refer me to a rehab Dr. for physical therapy. I had huge amounts of green fluid withdrawn from swollen arm, which now I know means infection) I wasn't diagnosed for 4 years.
Just my opinion. My daughter is a court reporter and did a RSD deposition because the surgeon failed to inform the patient the possiblity of getting RSD from the type of surgery she had.
I'm sorry you are going thru this. If I had it to do over again, I would have filed a suit
They aqren't easy, but a good attorney makes it easier.
Do you have any limitations? I got frozen shoulder in my surgery side, then after 100 physical therapy treatments and 100 massage therapy sessions, I call almost full range back. After a year-I got the frozen should in the other shoulder. More therapy. then a year of wellness, then frozen left hand. Didn't get right diagnosis and have a crippled hand. Got partial use back, which I'm grateful for. Then moved to other hand, therapy and full use of right hand, then one foot and leg, then other foot and leg. Now full body.
I'm grateful for a wonderful Dr. I have now. Of course I miss my 'other life' but am doing the best possible considering this disorder. Take care, loretta

[maryam71]

[QUOTE=Dubious;544086]My last visit with my surgeon who perfromed the surgery which started my whole RSD experience, told me something very interesting last week. I am 15 months out from a horrible shoulder surgery.

He said, "I really don't know what to make of your RSD; I've had several RSD patients over the years and they ALL got better after stellate ganglion blocks."

I was speechless.

Has this been ANYONES experience with their MD? You were fine after stellate blocks? Everyone get better?

I'm curious...
hi i had my surgery on may6 2009 3 days after the surgery i go in to to see the doctor he tells me i have rsd because because my foot is sensitive 2 touch ,heat,and cold he tells me im so sorry i have a good doc i can send you to he sends me to pain management she says its rsd they give me all these pills they dont help alot of narcotice pills im so sick of pills i get lots of electric shocks in my foot so now all i do is go see pt and they hurt me even more the pain management doc says they want to schedule me for a nerve block to my spine i read on the internet that its not 100% effective so i cancell the procedere dont think i can take any more pain because im always in pain 24/7 i hope you get better soon