[llrn7470]

Hi all-I am new to the board and new to CRPS. I have just been diagnosed about three weeks ago after elective knee surgery and a nerve block for anesthesia (or lack there of, in my case). Anyway, my PMR doc is pushing for a sympathetic nerve block. Ironically, I am a neurosurgical ICU nurse by trade, so I am not afraid of the procedure itself. I am afraid of what it may or may not do for my condition. Any experiences or suggestions? Just got off steroids and am being trialed on Neurontin and Lyrica with Ultram-my mental state is shot due to all of these medications and all I can be is afraid. Hope someone feels like being the voice of reason for me.
Thanks for giving me a safe place to talk about this incredibly crappy condition with those who can relate.
Lori Lee

[GalenaFaolan]

The sooner you get a series of sympathetic blocks the better off you are. Getting them done in the 1st 3 months might just be what makes you one of few, the proud, the one in remission. After 3 months it can still happen but changes begin to take place in the nerves that are permanent. Most of us are dx'd too late.

My experience wasn't a good one but only because I was a work comp case and they didn't feel like getting me any treatment though I was dx only a month and a half after it all began. Nothing about a block will harm you, only help. Getting normal skin temp and a reduction in pain or complete relief is the goal. It'll take more than one and say you get 8 hours of relief from the 1st one, you may get more than 24 hours from the second and maybe 48 hours or longer from the 3rd.

Welcome to the board, sorry it's because of the crappy stuff though.

Hugs,

Karen

[Mslday]

Hi Lori Lee,

You are very fortunate to be able to get this treatment so early in your condition. Don't be affraid! If you respond well to these blocks than it will certainly confirm the diagnosis. In that case you may want to seriously consider having a continous peridural anastesia for 1 week. This is the "gold standard" treatment used in Germany and they have very good rates of recovery for newly diagnosed RSD cases with that treatment, I wished I had been offered it early in my diagnosis.

Personally I had many lumbar sympathetic blocks in the beginning, I always did very well by them. I stopped having them when I started to have IV lidocane treatments, less invasive than the blocks.

I'm very sorry to hear you are going through all this but want welcome to the board.

Good luck with your treatment.

MsL

[kejbrew]

Welcome Lori Lee,

I am so sorry that you have been introduced to this monster (CRPS/RSD). However, you have come to the right place for understanding. There are wonderful people here to communicate with any time you like.

Please be brave and keep a positive outlook. There is life after CRPS! Always expect the best, even if you don't see the light at the end of the tunnel right away. This will help you tremendously.

I agree with Karen that it is important to get aggressive treatment immediately if not sooner. Time is of the essence if you want optimal results.

Best regards,

EJ

[loretta]

Welcome Lori Lee,
I'm so sorry to hear of your diagnosis. It's so good, you got it early on. You have the very best chance of going into remission. Obviously, being a neuro. nurse, you know of the things that can go wrong, but you are in a position to pick out the best anethesiologist for the procedures. READ READ READ here on the forum, there are many good results from early treatment.
Watch for range of motion changes, like stiffening of your knee or less range of motion. Usually PT goes along with treatment.
Mine RSD started the day after breast surgery for two benign tumors. My arm swelled up and shoulder froze up solid. Referred to Rehab Dr. for PT. Wasn't diagnoses for four years.
I can't give first hand experience, but can encourage you to be agressive in treatment, early is good, very good. Try to stay positive, and ask the Dr. lots of questions. Are they familiar with RSD in your hospital staff? They must be for you to be diagnosed so early.
We'll all be thinking of you with positive thoughts of a very good outcome from an early diagnosis. Read as much as you can. Please let us know what you decide and how it is going? Loretta

[llrn7470]

I must tell you, this is wonderful. I feel so much better since reading all of your supportive responses-this board rocks. I actually have never been one to use online boards or chat rooms. But, as all of you know, there isn't likely to be someone around you that can really understand this rare condition.
I have been reading a lot of what is on the boards and find this such a blessing. There is so much good information and wonderful support. You can see everyone going through the roller coaster ride together-sad, angry, frustrated, hopeful, etc. It really is an easier ride together, isn't it?
I will keep asking questions (maybe newbie ones) and reading up on the boards. Know that my prayer list has expanded greatly since "meeting" all of you.
Lori Lee

[dreambeliever128]

Welcome to the group.

I had blocks later on with RSD and they helped me so I don't believe they are just for early treatment. Some people however do respond to them and others don't.

I have a good friend who is a Nurse in the operating room here. She's been a great support for me when I go in for surgeries. She has RSD in her right foot up to her knee. I have known her for over 10 years and she had it before we met. She told me that when it starts coming out she goes in and gets blocks to help get it back into remission and it has worked for her to keep her working. This may be your case if you'd like to be able to keep working. We can only hope anyway.

Don't pass up those blocks.

Ada

[katro]

Originally Posted by llrn7470

Hi all-I am new to the board and new to CRPS. I have just been diagnosed about three weeks ago after elective knee surgery and a nerve block for anesthesia (or lack there of, in my case). Anyway, my PMR doc is pushing for a sympathetic nerve block. Ironically, I am a neurosurgical ICU nurse by trade, so I am not afraid of the procedure itself. I am afraid of what it may or may not do for my condition. Any experiences or suggestions? Just got off steroids and am being trialed on Neurontin and Lyrica with Ultram-my mental state is shot due to all of these medications and all I can be is afraid. Hope someone feels like being the voice of reason for me.
Thanks for giving me a safe place to talk about this incredibly crappy condition with those who can relate.
Lori Lee

I have had crps for 30 years and only diagnosed 8 years ago. I have had the blocks. DO NOT GET A SYMPATHECTAMY. I did as they said it would work but it has made things worse and spread to my whole body. Question Lyrica for lung problems as reading on this blog alot of people or or have been on are experiencing lung problems. Not to scare you but just make you aware.

[Gymjunkie]

Originally Posted by llrn7470

Hi all-I am new to the board and new to CRPS. I have just been diagnosed about three weeks ago after elective knee surgery and a nerve block for anesthesia (or lack there of, in my case). Anyway, my PMR doc is pushing for a sympathetic nerve block. Ironically, I am a neurosurgical ICU nurse by trade, so I am not afraid of the procedure itself. I am afraid of what it may or may not do for my condition. Any experiences or suggestions? Just got off steroids and am being trialed on Neurontin and Lyrica with Ultram-my mental state is shot due to all of these medications and all I can be is afraid. Hope someone feels like being the voice of reason for me.
Thanks for giving me a safe place to talk about this incredibly crappy condition with those who can relate.
Lori Lee

LoriLee
There should be relatively little harm if you have the block done by an experienced and competent anaesthetist. However, some people do have massive, ongoing problems after routine blocks are done. For others, although they have a diagnostic benefit, they have little or no therapeutic benefit. It is all well and good to have these blocks done quickly after diagnosis but it doesn't automatically follow that it will make any differencve for you (it didn't for me).

Make sure you are happy with the person doing your block, discuss the risks and benefits beforehand and do what you think is right for you. The liklihood is that if it is done properly it won't do you any harm and if you are fortunate it may give you some relief.

[loretta]

Hi Katro,
I have been taking Lyrica for about a year and have developed a rattling in my lungs.
I was on Neurotin for about 3 years before that. Have had RSD 12 years, now full body, but not diagnosed for four years, then misdiagnosed a few months. I hate both of them, gained weight, which is very unusual for me. But of course, I'm not playing tennis every day. Anyway, any info on the lungs would be appreciated. I think I see my Dr. tomorrow.
Thanks, Loretta