Had hand surgery in 08 and have suffered from RSD ever since. Been through months of OT had the blocks through the chest and T2 spine all were agonizing to me and the T2 did nothing through the chest worked about 10 days after second one which was done a week later. Pain doc is leaning towards a SCS, this terrifies me even to think about it. I think it is a roll of the dice whether it will work or not and I am so exhausted from this pain I don't know if I can go through it without general anesthesia. I have read all sorts of stories about this
and I get the idea the procedure is awful. I am getting old and would like to find some golden years. Can someone please tell me about this and how painful the procedure really is. Thanks in advance.
I just wanted to welcome you to the board. I can't help you with the SCS for the upper extremity as I have RSD predominantly in my legs, but I did have an SCS trial for my legs, but it didn't work. The trial wasn't bad at all. Hopefully someone will come by who has one for the upper, but offhand, I can't think of anyone at the moment who does have one for upper. Good luck. I hope you can find something that will help with your pain.
I'm so sorry to meet you on these terms but welcome. You've come to a great place to get lots of support and advice from people who know first hand. It always saddens me to hear about people who aren't getting benefits from treatments.
I have a close friend who not only has had to get the scs for her legs but now for her right arm. The trial isn't bad at all,and the actual placement of the permanent one isn't to bad depending on your pain tolerance. They do put you under,it is a surgery but the results can differ between people just like anything else.
There are side effects that you need to know and things that can make the scs have problems. This information is at the spine journal. Be very open with your doc on your concerns so that you can make the best judgement for your own situation.
You aren't in the hospital for very long as long as everything goes smoothly and you are only down for a couple of weeks from my knowledge of when my friend went through with it. Since this treatment is kind of a big one you need to educate yourself as much as you can. As with anything you never want to walk blindly to it.
If you have any questions please don't hesitate to ask. I'll answer as best as I can. I hope that if you do go through with it that it brings you much relief. No one should have to deal with what this disease does physically and emotionally.
Take care and stay warm,
Thank you ladies for the welcome and understanding.Talked with my GP today and he thinks it may help, will see the pain doc again in a month,after that I don't know where we will go, the pain doc says they are going to set me up for a session with a psychologist which leads me to believe an SCS is next and they showed me one the last visit. Some times I think all the painful blocks are used to sell you on SCS but I know that is not true. I do have faith in the doc and I am told he is one of the best around, it is just that I am 73 years old and am becoming exhausted fighting this. Thanks again and hope you all find peace.
Another option may be a pain pump. Have you talked with your doc about that? I've had mine for 10 years and it has helped me a lot. They can put a number of different meds in a pump depending on your symptoms.
I'm glad to hear you have faith in your doc. That is so important, in my book.
Hi again Sharon, no I have not considered a pump as I don't know if it would help my arm and hand.I really don't like narcotics, but have used pot in the past and it helped a little but not enough for the expense and I told my doc I tried it and he said that did not worry him but he could not help me with other treatments that contained narcotics as long as I used it so I stopped using it. I have tried a lot of things to get some comfort as I suppose many people here have, so now where the doc takes me from here is any ones guess.
I am taking 2400 mg of gabapentin a day now it helps, a bit but still can't seem to get rid of the daily agony. I am just waiting now for the next step.
I too had surgery in 08 and now have RSD. I have tried all of the injections there are and now am facing the stimulator. I have researched it and met with someone from the company and asked every question there is. As far as I can tell, the main problem is infection of which they will give you antibiotics after the procedure. You cannot get the are wet for 5 days- if you do you are asking for infection. You can take like bird baths and wash your hair but not actually get the injection site wet. With the trial you should know if it works for you - if it does then they will go ahead and permantly implant the device. If it does not then they just take it out - that is what my pain doc and then person from the company said. They want me to do it too. I have 3 small children and am starting to need crutches the last few days from pain and no pain fills and patchs on my back for pain is helping any more. The feeling of lost sets in and my poor husband - I feel bad because I cannot sleep with him because our kids crawl in bed with us and I cannot take that chance of someone bumping into me - I barely sleep as it is I cannot have someone touching me and me screaming and waking them up. I feel for you. I hope I was able to answer some questions. I have researched for months to get to the decision of finally doing it.....I was to have surgery to correct my back - now I have RSD and my back still is in pain - things usually do not work in my favor so I am very hesitant these days.
Thank you entre3 so far have not had the patches maybe that will be next.
My poor wife does most everything, we live rural and have a few acres and there is lots of mowing in the summer, if I get the scs I am afraid I won't be able to operate my tractor anymore. I am sorry to hear of you situation especially with small children, maybe some day someone somewhere will find the answer to this horrible disease.
Sorry it has taken me so long to reply. You are more than welcome for any help that you may need,even if it's just to vent. We all get to that point where we need a lending hand from someone who really can understand. The scs trial is pretty much like entre said. It can be helpful and if you don't want narcotics which we all can understand then that might be a way to go. There are somethings that can help. I'm on patches but also on quite a few narcotics. The patches are new but I've been liking them when it comes to dealing with air movement and especially when going outside. I'm not sure if you have tried it but some people get relief from a TENS unit. There are also home versions you can try if not in PT. It's light stimulation and can also help to control atrophy. Some people do very well with this. Seems like either you do well with some or do really bad. It all really depends on the person and how their rsd is. There are tons of places to go for research and studies if you want to know more about different treatments. I hope that you are able to find some relief.
Take care and stay warm,
Thank you harmony 85, I am starting to think more about the patch and narcotic treatments as I am very hesitant about scs. I really don't know if a tens unit would reach the areas I need relief in. My rsd has now spread from my hand into the wrist up the arm across the shoulder and into the back shoulder blade and it is agonizing, the only meds I am on now is gabapentin 2400 mgs daily , it helps a bit but not enough for any real relief plus it makes me very drowzy and unsure on my feet so I have to use a cane. Don't really know what will come next from the doc although I am sure he is going to advise me for the scs and if I refuse that not sure what he will want to do.
You are very welcome. Never forget that this is your body,you are the one who has to deal with the rsd every moment of your life. No one can force you to do a treatment that you are not comfortable with. Educate yourself as much as you can so that you know you made the right decision for your well being.
There are things out there,even in narcotics that can be helpful. I was always against meds until I really had no other choice. I had to do something and I really couldn't do the scs. I know that it can be helpful for people and you always go through the trial first to see if it works,if it doesn't it is fairly easy to remove the trial.
There are other treatments out there that can help. It all really depends on your rsd pain,what you can handle and what you are willing to go through. Just because you may not want the scs that doesn't mean that you don't want to get better. I say that because some docs will say things like that to try and persuade you into things.
I've had pretty good luck with my pain management. I started a little over a year ago after being in incredible pain for 2 years. I did go through with the narcotics and patches because at the time the self insurance comp. wouldn't acknowledge the rsd as part of the injury. When I started the PM most my days I couldn't even walk across the floor,I was quickly losing all my abilities to be able to move around,I was stuck in bed all day and couldn't even go to the bathroom without someone helping me. Now I still have to be careful and I do have flare ups that cause me to not be able to walk or move around without help from a cane or wheelchair but my quality of life has improved. That is the biggest thing. It doesn't matter what you choose,it's your choice. As long as you feel it's helping your quality of life. That's all that matters.
If you have any questions please ask away. The people on these boards are more than willing to help in any way we can. The only stupid question is the one you don't ask.
Take care and stay warm,
I also have RSD in my left hand. I hear you when you say the pain is exhausting. Do you have someone who is going with you to the appts.? Sometimes I am so tired from the pain and not sleeping that it helps to have someone else hearing the same info so they can help me with my decisions.
I'm sorry the blocks have not been successful for you. I have been getting them for about a year... my dr. is also encouraging me to get the implant but I'm not ready. I think it's a good idea to check out all options before making a decision. I've heard that the pain pumps have helped some people who were not good candidates for the implant. Good luck! Lynne aka toughkid
Thanks for the response toughkid. Yes my wife goes with me to the doc and listens to what is said so we both are on the same page. As for the injections my doc said you won,t feel a thing well I did feel it and it was agonizing to say the least. I am so exhausted the idea of the scs surgery even the trial and the additional pain involved seems too much for me now. But we will see what happens soon, they did send me a cd and brochure about the medtronics device so this leads me to believe that is the next thing he will want to do. I have total trust in the doc but I don,t know if I can do it. Also the healing time seems a bit long and I am a large person ( 260 lbs ) and I don't know about being able to sit or lay in bed with something implanted in my hip. I also live rural and have to mow on a tractor all summer which I probably can,t do after surgery. If I have problems it is 70 miles to the doc so that is a factor also. Again thanks for the response and I hope you can get help also.
I'm sorry..it sounds like you are really stuggling. I'm a bit spacey tonight from pain so forgive me if I ask the same question again..was it the stellate nerve block injection that you said was so painful? I am not doubting you but I have just never felt like it was that painful after the local anesthetic. I'm really sorry. Be sure and ask the dr. about your need to ride the tractor. I've known a number of people that have had to turrn off the cns when they are in a car becasue of vibrations. Keep us posted and know that we all have fears about new procedures... and even old ones! It's hard being in pain and then going to someone for more pain even when it's supposed to be for something that helps. Sorry..hope I'm making sense.. it's been a hard few days for me.
Lynne aka toughkid
Hi again toughkid, sorry to hear you are in that dark bad place that our kind of pain puts us. Sometimes I feel as if I am in a pit that I can,t climb out of.The first stellate injection was the worst as they did not give me enough sedation the second one a week later they adjusted the sedation and it was not bad. The T2 and T3 were really bad at first and I complained and they knocked me out, I was sore there for quite some time and neither worked. Today is not so bad but some days I can,t even type on the puter, so as I have said before we will see what is next.