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04/23/2012 08:06 PM

Advice

elliotm
Posts: 45
Member

hey everybody

I just had my 5th Lumber Sympathic Block (LSCool shot today and my foot is feeling ok. I am hoping that it will last for a long time. I have my next shot appt in 2 weeks. I have ben disscussing between my family and my PM doc that after my 6th LSB it might be worth to go and have a kedamin infusion. I am honestly a little nervous to get this but off course i would do anything to get rid of my RSD its hell on earth. I have not discuss the possible sideeffects about getting the infusion yet. i just wanted to kbow what would you do in my postion. This wendsday would be 6th months that i have had RSD. The Dr that would be doing the kedamin infusion is Dr Hertz. He was the one who first said that would probably need the infusion.

Does anybody know what are the possible side effrects from getting a kedimine infusion?

Would it be better to get instead another 6 LSB shots?

Is there another course of treatment instead of LSB or the kedamin infusion?

thanks

Elliot

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04/23/2012 08:44 PM
revvanbus
revvanbus  
Posts: 2032
VIP Member

Elliot, there are lots of treatments and medicines for the pain of RSD/CRPS. Not many have legitimate claims at helping you achieve remission. The nerve block injections like the LSB (for foot/leg RSD or Stellate Ganglion blocks for hand/arm RSD) with intensive physical therapy, Ketamine injections (and it is multiple, not one), some have claimed hyperbaric oxygen chamber treatment...Please look in the medicine and treatment area of this group and you can get a better picture at many of the treatments available. So far, nothing works for all pf us. It is trial and error. If your pain doc offers only a handful of treatments, please look for a more experienced pain doc with a wider repertoire of treatments and medicines. If you want more info on any particular treatments, please just ask us. The members who have had a treatment can tell you about their particular experiences. But don't get too down on a treatment because one or a few of us had a bad experience with it. Each of us reacts differently so...

Rev


04/29/2012 11:36 AM
elliotm
Posts: 45
Member

well other than a LSB shot and kedamin infusion/coma what other treatment is there?

a tens unit, accupucture, klaymore therapy, hyporbloic chamber... i consider this to be more for pain relief then an actually treatment. I know there is know offical cure but what ofther stuff are out there. My dr even mentioned something like to snip the nerve off (i am not sure what this is called) as a last case.

also what are the side effects/reason y not to get a ketamine infusion?


04/29/2012 06:38 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member



Post edited by: maddiesgram, at: 04/29/2012 06:44 PM

04/29/2012 06:43 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

The last case your doctor mentioned was a sympathectomy which might work briefly but they are not really recommended anymore because the nerves grow back, sometimes quickly, and create worse problems. Also, someone here had this done not long ago and it caused a big spread. I wouldn't do it, although early in my disease I did do something almost the same. They do surgical sympathectomy and chemical ones where they burn the nerves with injections of caustic things like phenol. I had that done and it made it worse.

You are absolutely right that most of what is done for RSD at this time is pain relief and not actually changing what you have. Early on physical therapy can be beneficial, I think due to the increase in blood flow to the extremities partly, but later on not so much except to get you moving better.

They say that there is no cure. That's the bottom line. It's a stinky disorder with much suffering and little in great treatments. I would try ketamine infusions in a second if I could get them, but some are not so sure about them.

For me, I try to walk around doing things as much as I feel that I can without the pain getting out of control because I don't want to be completely an invalid. Then, I try to control the pain that does occur with strong medications that do help but do not take the pain away by any means. Sadly narcotics are not as effective on this pain as they are with other things. Sadly, again, this is a progressive disorder and we will likely get worse with time. Fighting daily all we can I think is very important. Also, however, I think it's important to find the balance and not expect too much or do too much and get the pain way out of control.

I'm no expert on ketamine infusions. There is a book called Remission Possible by Barby Ingle who went through them and talks a bunch about it if you are interested. The doctors who do them are few so often it would require traveling, but if your doctor does them just ask more about it. Many side effects are temporary (delusions) while under the medication and are controlled by changing the dose is what I read. It is very expensive which is why it's not something in my immediate future. Perhaps it will be in a few years, I don't know, but I hope so. If you are very interested I would say to get this book. It's a personal journey and gives you a good idea of what she went through. They don't do the comas here in the US.

Good luck, Elliot, with find what works best for you. How are you doing? Also remember that there may be something else they develop in a few years that will help us even more.

gail


04/29/2012 10:51 PM
cindy61
cindy61  
Posts: 540
Member

Elliot if the smypathetic blocks are relieving some of the pain I would consider myself lucky. This disease is not known to have a cure. What we all are trying to achieve is to find something to help with the pain and to mentally learn how to live with this. My son's friend lost part of his leg in the war. It's NOT going to grow back!! so he must learn how to live with this and the pain of learning how to walk again. His life will never be the same just as ours will not be the same. WHY I don't know but we must stay strong and learn how to live and deal with RSD just as that young man must learn to live without his leg. I wish you all the best with it and it is harder to hear about you and others that are so young but I will be praying for you!!

Cindy


04/30/2012 01:06 PM
revvanbus
revvanbus  
Posts: 2032
VIP Member

I am one who had the Sympathectomy and the nerve grew back just as painfully. No help for me.

You might look at mirror therapy which can help the brain begin to see the hand/foot as the same as our not affected side (if you have a not affected side.) That has not had a lot of effects on pain but on the disability.

Ketamine therapy (talking here about in or out-patient infusions by RSD experts, not trial by pain specialist who don't know the correct protohols) seem to lower pain or bring remission in an impressive number of RSD sufferers though not effective for everyone. If I could afford it and the waiting lists were not so long, I would try it.

Like Cindy61, I have learned to live with the pain and disability. I go to a pain psychologist who has taught me many mind-body ways to deal with the pain. He has taught me also to accept my families rejection (they cannot stand to see me in so much pain and be helpless so they have chosen to be mostly absent.) So I have made my own family of my friends who I try not to over-burdon with my pain. And he helps me assess the new-to-me therapies to decide which if any to try. I don't fear my pain as much and understand the disease which really helps me assess pain treatments.

That's what I do. But that is after 12 years with the monster so...Though we share the pain, we each have our own road. I pray for you!

Rev.


05/14/2012 07:22 PM
elliotm
Posts: 45
Member

hey all

so for the meantime i am have not been looking into the kedamine. for the past 2 weeks the pain has actually gotten weaker (besides today the rsd is killing me). so this has been great for me. I was suppose to get an LSB shot this past Thursday but my family and I thought that it was best to push it off. I dont know what this truly means but i hope that it is the start of the rsd going away. Besides for the pain, my depression has been getting worse, some days i am in my bed all day crying and on the days that go out there is nothing that interest me. It is a weird feeling, its like nothing seems to matter and i get no enjoyment from life. i dont no what to do about this, any ideas? i am taking anti-depressants no real help.


05/14/2012 08:28 PM
revvanbus
revvanbus  
Posts: 2032
VIP Member

Elliot, going to bed is absolutely the worst thing you can do for depression (and often for RSD/CRPS also). I understand the depression makes you want to go undercovers and sleep your life away, but if instead you go outside and walk a couple of miles, find someone who is hurting more than you and help in whatever way you can, do what you have always loved to do and concentrate on the pleasure of it. It will help your pain and also your depression. Get up, get moving brother.

Rev.


05/14/2012 08:37 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Hi Elliot,

That's really great that you've had less pain and I do hope you're going into remission or something. Have you told you doctor? I don't know what to tell you about the LSB as they helped me but only briefly. If you have never had one and the pain is going away it might be OK to put it off, but if you have had one and there's a chance that it is part of the reason the pain is going away then I would really think about another one. It's very hard to know from here, but if you have a good doctor it might be best to follow what he thinks is best.

Elliot, it often takes a while for an antidepressant to help, but also sometimes they just aren't the "right" one for you. Whichever doctor put you on the antidepressant should be told that the depression is this severe. We don't want you to get any worse. Also, if you're just on one antidepressant often they add another that works with a different brain chemical and the two together will be more effective. I hate to hear that you're suffering that much and want you to get help so that you can put some of this behind you.

There are a number of different medications to try but also with pretty severe depression you really do need to see a therapist for a while for talk therapy. The pain might have brought you to this place of depression, but whatever things are making it this difficult can be helped. I've been through severe depression and have even been in the hospital for it years ago. It really can go away and you really can get to feeling much better, so I want you to know that and believe it. If your general physician or pain doctor gave you the antidepressant you're on, it might help you better to see a psychiatrist. They really know the medications and combinations of medications for depression better than anyone. Please take good care of yourself.

gail

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