RSD and Ulnar Nerve surgery
 

Hi Everyone,

I was hurt on the job 3 years ago, had ulnar nerve moved in my right arm, several months in physical therapy, cortisone injections, desensitising, more therapy and now I had my first Stellate Ganglion Block (SGB).

I have some relief from the block, but not a lot, less burning pain until this afternoon and it started back up. Have some muscle spasms and can not sleep very well at night, but that is nothing new, hand and arm is ice cold and purple mottled again. The doc that did the block said my arm would get warm but it didn't, it went colder by about 5 degrees. What does that mean when that happens?

I have seen so many different doctors and been diagnosed with the RSD by 2 of the workman's comp IME docs.

I have to go back and see the current doc that ordered the block this Friday. I am scheduled for 2 more the next 2 mondays. I really hope these blocks do more than what this first one did.

I have read some of others posts on here about the blocks and different things that have been done, but I am still not convinced this is the right thing. Any help and suggestions would be greatly appreciated.

Anyone know of any doctors in Louisville, ky that are good with RSD?

Hi, Tina, my fiance' and I live in Kentucky, but I can't help you with the Louisville area. My fiance' got a letter today saying his pain management doc in Lexington is no longer seeing patients. We were there last week and nothing was mentioned.
Best of luck to you!

Hi Rita,

Thanks for the reply.

Sorry to hear the doctor is not taking care of him anymore. Did he recommend anyone to you all as a replacement? I know how aggravating it is to have to find a new doctor.

Maybe you could look at the RSDS website and see if there are recommendations for a doctor in the Lexington area or if there is a support group there, that might be able to help.

Hi Tina, Welcome to NT. So sorry you have RSD. Ulnar Nerve Surgery is a surgery that RSD follows many times. The blocks do not cure RSD, but bring pain relief to some, different lengths of times. I got RSD following surgery, but wasn't diagnosed for several years, now have had it 12 years and full body. Started with frozen shoulder. I would like to encourage you to read as much as you can--- the stories and introductions here. Most of us knew nothing about RSD before developing it. Many, many Drs. have never heard of it either. Some Drs. do not like to treat WC patients or RSD patients, they can just choose to refuse to see you. I'm not saying this happened to you, but it happened to me twice. RSD affects circulation, blood pressure, high and low, short term memory loss, bone loss, mobility, I have both burning symptons and cold limbs. High blood pressure and sudden drops to low blood pressure. It is important to have an experienced RSD Dr. and I believe an anethesiologist usually performs the blocks. The not sleeping at night is really difficult. I know it's common among us, not sure if it's the pain, meds, or just part of RSD. I know I have very bad headaches, almost daily. Believe they are from the RSD. I read recently on this forum the headaches follow an injury or surgery on the shoulder or arm. Many of us end up not being able to work, especially if not diagnosed and treated within the first year. I certainly don't want to discourage you, but we run into so many difficulties, we never expected when we start down this road. Hope for the best, Loretta

Hi Loretta,

Thanks for responding. I do a whole lot of reading and learn as much as I can and try to find things that help. I have been fighting it and will continue to fight. It does take a lot more out of me than I want to give, but I keep trying. I do not have a large support system, so I really feel like I am fighting it all by myself. But, I keep going.

I lost the job I had when I first got hurt, because I could not do what I used to do there. Now I have a job and I have several days that it is very hard to do anything, much less get out of bed, but I pull myself together the best I can and go in and do the best I can. The job I have now is in a small company and they are very compassionate and understanding and have been a Godsend. I really do not believe I could handle working anywhere else.

The block I had on Monday worked pretty good and relieved some pain until yesterday. Now it has come back with a vengience. By the time I got home from work, I could not hardly move and last night I could not even unzip my purse without a whole lot of pain in my shoulder and my down into my hand. I guess I will have to believe that the next one will work a little longer and see what happens. I go on Monday morning for another block. We will see what happens.

The hardest thing it finding treatment and finding anyone who knows anything about how to treat my problems. I have been to 8 different doctors since this all started, not all were for the RSD, and all of them, except for one, has been chosen by the W/C insurance company. The doctor I am currently seeing, I have seen one time and he asks me a question and when I start to explain he said, "too much information, I don't need every detail.", and he was on and off the cell phone more than he was talking to me at my first visit. Well, I know he is busy, but I need help and he is the doctor who thinks he can help me, but I don't feel he can really help me if he does not listen to what I have to say. I am really about to go crazy trying to find a doctor who will just listen to me. What should I do? I can't just keep letting him treat me if he doesn't listen to me, should I?

Hi Tina. Sorry to hear you are having so much trouble with the doctors. I live in Indiana and I have been to at least 12 in the last 18 months and most of them do not know about RSD so I feel your pain (sorry for the pun). Anyway, I got so frustrated I made the six hour trip to see a specialist at the Cleveland Clinic. It was an excellent move on my part because I finally got to see a doctor who has been treating RSD for years. It made a big difference just to walk in and not have to explain to yet another doctor what it is I am dealing with. However, the distance makes it hard to have continuous medical care so it is a trade-off.

I too developed RSD from the the transposition of my ulnar nerve, but only in my left arm. It started up right after the first surgery and (stupid me) I had a second surgery in that same arm in the hopes of easing the terrible pain. I did not know at the time of the second surgery that I had RSD. That became much more apparent two weeks after the second surgery.

I struggle with meds and what works and what doesn't. I swear it depends on the day - sometimes my meds help, sometimes PT, sometimes heat and sometimes none of the above. I do know that for me when I am miserable I take my $3.00 scrub brush and scrub a glass cutting board on the kitchen counter. I swear, something about the compression and the routine of going back and forth (just like you were bent over scubbing the floor) helps to reset my sympathetic system just enough that I can get some relief. I tend to do this for about two minutes, and depending on the day, sometimes 4-5 times. You might be able to take a little scrub brush with you to work and scrub on the counter, curb or anywhere you can. I learned this from a hand surgeon. It is particularly helpful for those with ulnar nerve involvement.

As for the blocks, I chickened out and did not do them. From what I have read, it seems three blocks is the magic number - it will either help or not, without doing harm. I think if it doesn't help, then the pain is not SMP (sympathetically maintained pain) but is considered SIP (sympathetically independent pain). This is what I have been told from several doctors. So even if you don't feel you have benefitted from the blocks, it does give you and your doctor some valuable information.

Good luck and I am hoping you have better days.

I really appreciate hearing from someone who has had the same thing done to their arm that I have and I hope and pray for your recovery. IF this doctors helps as much as it sound like he might, then I will be happy to give you his information and maybe you can drive to Louisville to see him. If you want I can send it too you now, just let me know. Don't know if it is any closer. We have family in Cleveland, so I know about the drive there, very long and boring.

I had the second block yesterday, I can not talk very well, my throat is extremely sore and I have some pain going down my throat and up into my jaw and ear. But my arm is NOT having the burning or the throbbing from my shoulder down into my fingers. Last weak it lasted about 2 days. I hope this one lasts longer, but my throat really hurts. The doctor told me that it probably would.

I do the scrub brush things also. It does seem to help releave some of the tighness, which I think plays a big part in pressing on the nerve and I also try to use heat, but that sometimes just irritates it more. Sometimes putting an ice pack on the back of my neck helps. It does not touch my shoulder or arm but the cooling affect not only helps loosen up my mucles but it also helps releive some of the headaches that I get.

I seen the doctor on Friday and he said we are going to do a total of 4 blocks. I go back to see him on Oct 3. I start physical therapy back up tomorrow and hopefully with the blocks and the PT then maybe if will be even better. The doctor who actually performed the block said the PT with the blocks is crucial. So, we will see what happens.

I will keep you all posted.

BTW, we are in Louisville and I am one of the people without electricity from the Hurricane IKE. Never thought we would have a Hurrican in Kentucky. They are telling us it will probably be 2 weeks before we have power back. So, I can only get on the computer at work.

Take care and I will post again soon.

Tina, I sure hope you find help with this new doctor. I would really appreciate your feedback and his name if you think he is good. I am so pleased to hear the good news about this second block you just had done. I think you have a really good shot at getting some pain relief. You are under a lot of stress right now this the loss of power so I can't imagine how you are dealing with having a block on top of the other problems.

I am scheduled to consult with a pain doctor (anesthesiologist) at IU Med Center in Indianapolis (I live close to Indy) next Tuesday, so I will let everyone know how that appointment goes. I saw a neurologist at IU Med Center about six weeks ago and he thinks I should still try the stellate ganglion block; that is how I got referred to the pain management group. I have had RSD for almost two years so I don't know if I can even get any help from a block at this point. How long has it been for you since you got RSD to when you had the block. Is it a full three years?

Oh, and you mention the headaches. Oh yes, I have those too along with the deep pressure in my arm and around the ulnar nerve that radiates from my collarbone, into my shoulder and down to my pinkie. It is miserable. I sure hope the block lasts a long time for you and that you get permanent relief. That would be so exciting.

Please let us know how you are feeling. Good luck with the clean-up after the storm. We had high winds in Indy but not too much damage. Going without power like that is so rough. Thank goodness it isn't cold. Gosh, I would die without my TV to distract me at night. Nights are the worst for me. I don't sleep well and I use TV as to distract me so I don't bug my husband with my pain and insomnia. I am hoping things get resolved for you quickly,

Coffeebean

Hi Lisa,

I saw your post and wanted to say I am glad you have an appointment with IU Pain Management Clinic. :) And especially with an Anesthesiologist. Please let us all know how it goes.

And weren't those winds something else? I was keeping an eye on my pool the whole time but eventually just turned the pump off and let everything fly and land where it wanted to. But no damage was done.

Hang in there and again, let us all know what the pain doc(s) had to say.

Kathi

Kathi, weren't those winds terrible? We have so many sticks down in our yard I can't believe it. I sure hope you didn't get any in your pool. But I can't complain because we have power. I would just be miserable without it.

How are you doing? I have been miserable with pain in my arm and neck this week. I think it was from doing too much last week when I helped my daughter. I just got back from the pharmacy and I am amazed how restricted the mobility is in my neck. I don't know if it is from my arm or neck issues, but it sure hurts and I feel like I am 120 years old! Too funny.

Oh, I just read an article that addressed the issue of cutting out caffeine to reduce pain. It makes me feel so guilty because I was enjoying a McDonald's coffee while I was reading it. I think I am going to set a target and try to wean off of the caffeine. I wonder if it might help with the pain issues. I really love my coffee, I think it may be my only "fun" thing anymore, so it will be a struggle for me. But I can always start back up if it doesn't help. It really is a major comfort food/drink for me.

Coffeebean (I'll have to come up with a new name - maybe Decafinator

Hi Lisa,

Nope, no major damage. But I did have a lot of sticks and leaves and a few big branches lying around. One small log ended up in my pool. Overall, not too bad. I feel sorry for the ones without power; I know over in Ohio all the generators have been bought up in certain areas. The same thing happened when the tornado earlier this spring came too close for comfort. The addition just two minutes from me was without power for days on end and people couldn't find enough generators.

Anyway, your neck pain COULD be contributing to the arm pain. Especially, since there is an issue with C5/C6 which can refer pain to your arms. I know what the NS suggested but maybe you could talk with a pain doc first. I think I would go so far as to talk to Dr. N. again. I really would. Only because I know he is good. ;)

You make me laugh about the caffeine. But it is true. When I reduced it to almost nill, the neuropathic pain really lightened up. But hey, with all the stress I have had the last two months I started drinking iced tea again and too much of it. But I was only drinking it to stay alert enough to deal with all these contractors coming and going while working on my kitchen and pool. I am telling you I had to watch them like a hawk! So, no naps for me. ;) Anyway, I will get back to where I was pretty soon here.

Hi Tina, I wrote a long message to you last night, but it didn't go thru. Lost It. Anyway, I wanted to tell you what an encouragement you were to me. I haven't been fighting, and I want to and need to. I've withdrawn into staying home most of the time. I do have bad bad headaches, pain, low energy,insomnia, and am on a lot of meds. But I'm going to get out, I'm determined. I also mentioned our daughter is a court reporter and has done deposition for a lady with rsd involved in a malpractice suit. Have you ever consulted an malpractice attorney. rsd can be a long road, expensive, and some cannot continue to work. I do feel you were wrongfully fired. You were injured at work and there are definetly laws regarding your employment. It's a long story, but my mother died at 46 because of neglience of a Dr. We won a large settlement in trial. A lot of attorneys don't charge anything unless collect. It's not my business, but a lot of us have ended up on the short end because of not knowing or even not thinking we had the emotional energy to go thru with a suit. I do know there usually is a 2 year statue of limitations in most states from when you were diagnosed, (not the injury itself) I have never had the blocks, please let me know how the second one goes you had Monday. Take care, Loretta

Hi everyone,

I am sorry I did not post before now. I had my 3rd block yesterday and I feel pretty good. I was having a little pain after PT yesterday afternoon, but most of that has eased up. Thank goodness. It is amazing how much energy you feel like you have when you are not in pain.

Loretta - I was hurt on the job, but not at the job I was let go from, but my attorney is aware of this and I don't really see him until next month. I will keep you all posted on what he says.

My determination, I am told by my doctor and my Physcial therapist, is the reason my RSD has not progressed as far as some. Like I said, most of my determination is not necessarily by choice. There have been very many days I did not want to get up, go anywhere or talk to anyone, because I hurt so much, but not having a choice, makes you have to make a choice. I also have 3 grandchildren and I do not get to see them very much because they live far away, but when they come into town, I just get on their level, on the floor, an play away...pain or no pain, they don't know about it, why should they have to do without Nana playing with them. I don't get to wrestle with them, but that is what their dads can do.

I have noticed that alot of times if I type something long, I get kicked out when i try to send it. So when I get typed what I want to type I highlight it all and copy it before I try to send it. That way if I get booted out, then I can log back in and just paste it as a reply.:winky:

Well,

I had the 4th block yesterday. Kind of a weird day. They had to try 4 times to get the IV in, the numbing medicine would not work and they blew out 2 veins and one time it was in and when the doctor started to push the anesthesia in, it blew a big bubble in my arm, now I have a 4 inch bruise from that along with the 4 puncture holes for the IV, a big bruise on my neck and a sore throat. I do not think 4 was my lucky number that day. Glad that day is over with.

The blocks seemed to have helped with the burning and the pain I had going down my arm into my hand. They last a little longer each time I go to get one. So we will see on Friday what the doctor thinks about the blocks.

I do have a problem with physical therapy....because my arm has not been moved around very much, even though I have been going to PT off and on for 3 years now and trying to the routines at home, after I go to PT, I have a lot of muscle, tendon and ligament pain. This goes from around my shoulder blade, scapular region, now my rib cage is getting involved and in my upper arm and shoulder, along with the headaches I get, it just really takes it out of me. I still am not sleeping very good at night.

I have tried to tell this doctor that I need some kind of meds to help with these other things and he said he wanted to wait and see if the blocks took care of it....well, I still had some muscle relaxers left and some Ultram ER and have had to take them. I can only take so much pain and Tylenol just ain't doing it for me. All it is doing is tearing up my stomach.

I emailed a letter to the nurse that has been the go between for me and the insurance company and told her what was going on and she said WE could talk to the doctor about it together on Friday. She used to work for him and apparently knows him pretty good, so I am hoping she can get him to understand how I am feeling. He seems to be a nice doctor, but sometimes, I am not sure he hears me. I know you all know how that feels.

I do not want to have to change doctors again, I am so sick of having to explain everything all over and then truing to find one that knows how to treat the RSD is very difficult. This doctor said the blocks would get rid of the RSD...does anyone know if this is anything close to the truth, or if it will just help with moving?

Thanks for everything you all, it is nice to have someone to talk to about all this.

Tina