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| Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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07-17-2010, 01:39 PM
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Hello thank you all for all the support and advice! I feel like I can breathe a little and that I finally have access and support from people with what my husband is going through. And no it is such a big help thank you!
I would definitely love to get contact numbers for any good doctor in Virginia. We actually live in Northern Virginia (Vienna) so DC is an hour drive for us (traffic). Winchester might take 2 hours for us but we will definitely keep it an option. You're absolutely right, it is such a waste of time to travel that far to get treated so wrong. As for how he got RSD, it started with a bone fusion that went wrong. The doctor hit a nerve during the surgery and that's when the migraines and burning started. He had to get another surgery done to fix it by a different doctor in North Carolina. It has been 3 years since he was first diagnosed with RSD and he's had 3 more surgeries. Nothing new there. I am truly very sorry that you all have to go through this, but I guess that's what unites people. Thank you all again for the support! I did tell my husband everything you guys have said and I did read about ketamine. This helps with burning a little? Thank you guys again! |
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07-17-2010, 03:19 PM
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Magnate
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I didn't see this in your thread and I am tired so forgive me if I ask something you have already answered. Has your husband had any blocks. Some Drs. do a series of blocks to see if it will help with the RSD. They aren't just a diagnostic tool as some have thought. Different Drs. do different numbers in a series too. I've seen people who have had quite a few blocks done and they do seem to help.
Sorry to hear what he went through. We have all went through the grabbing and pulling on us. I use to dread to go to a Dr. for fear of how I was going to be Dr. handled. I did go see my surgeon last week and examined me for the surgery and boy have I been in a flare but I know he was trying to figure out where to go in at and what to do. It's too bad that he went through what he did. I would really call that a mean *** Dr. No sympathy for the patient. Ada |
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07-17-2010, 03:49 PM
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I'm so sorry for all you have suffered - the very best of luck to you both. The latest list of ketamine providers that I received from Jim Broatch at the RSDSA listed Dr. Chin at Geo. Washington Hosp., 202-715-4599. Hopefully this information is helpful for you.
Peace, XOXOX Sandy Quote:
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07-18-2010, 02:28 AM
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In Remembrance
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Your husband is with the wrong providers! GET HIM OUT OF THERE! But, be sure he has a supply of meds. Find a good Neurologist that deals with RSD. You've had some good recommendations here.
I got RSD when I just turned 27, and that's half my life ago. It took me 7 years just for a diagnoses! They just didn't know what it was back then. But, everyone here, is correct. Your husband, Sam, is with the WRONG doctor! I think a good RSD lawyer, might be of better help! (tongue in cheek, not to sue, but someone hasto have a better knowledge of RSD, than this doc that you're using!) I wish you the best, and my prayers! Pete asb |
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07-18-2010, 05:56 AM
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First take a breath....And I agree with the others get him out and away from his current doctors.Don't get crazy with them just make the move, if he is still in the hospital let them discharge him on the schedule they think and switch to a more knowledgable doctor. I think you stated you live in DC, I don't know the distance to John Hopkins put they are suppose to have the best PM dept. in the country. Is this a new inquriy? And when was he diagnosed with RSD. As far as the moving of his fingers I had a simular situation, I damaged my elbow and it had to move right after surgery and the first surgery was to just get it put back together was 7 hours. But they inserted a catheter in my chest and ran a interscalene block which numbed my whole arm for 4 days while I was place in a CPM Machine, a machine that bends your arm up and down. The purpose for this is so that scar tissue forms to a minium and function will return. But I found out the hard way as you are that only the best of the best know the proper procedures to get that accomplished. good luck Gabbycakes |
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07-18-2010, 01:34 PM
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#16 | ||
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Some people don't get much RSD pain relief from pain killers.
Generally there are several medications needed and if you can't kick this disease the trick is to find the rioght cocktail of drugs. But pain relievers are the lasty thing. Usually they start with things like neurontin and anything necessary to get a good night's sleep plus mood enhancers and then look for pain relievers. Good luck. |
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| "Thanks for this!" says: | BabyLeilani (07-18-2010), Kakimbo (07-19-2010) |
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07-18-2010, 05:35 PM
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#17 | ||
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@dreambeliever- Yes he has had some, they're of tremendous help! It always brings his pain level down to around a 4/10. Unfortunately, they're very limited with these and the ones they give him only lasts about a day or two. I wish they can give him one that sticks longer that way he can go through physical therapy without excruciating agony. I'm also very sorry you have suffered so much with doctors as well.. Thank you for the concern and I wish you all the best!
@Sandy- Thank you very very much! We're going to try to get in contact with him asap. Hopefully he's not too booked in. @AintSoBad- I'm so sorry you suffered so long and without a diagnosis for quite awhile. And an RSD lawyer is a good idea (God knows we need one lol), but for now we're just looking to find a good doctor for him at the moment asap. I wish you all the best in life and keep your head up! @Gabby- I've just mapquested it and it says it's about an hour away. Not too bad, same distance travel from where we live to Washington D.C. (We live in Vienna, VA) I just told my husband about it right now and we're gonna also try and get in contact with their pain management there. Thank you for the suggestion! @Imahotep- Very true, unfortunately my husband hasn't found the right combo yet. But we're still hoping for the best! |
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07-19-2010, 05:16 AM
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07-19-2010, 12:05 PM
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Hi BL.
I was seen at Hopkins PM center. I saw Dr. Cohen. They are world renound (sp?) for RSD. The head doctor is Dr. Raja. He's very respected and brilliant when it comes to RSD. They wanted to give me an SCS and do a study on me. I thought about it and chose not to have it. (Plus w/C and my primary insurance would not cover it). ($65,000.00). You have to have your insurance company pre-approve and get a referral from one of your Hubbies doctors (ortho, neuro, etc.). It's horrible trying to get out of there, it took us three hours of driving around in a "not so nice" place. I was terrified that we would get shot. I can give you info if you want. Just PM me. Kim
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07-19-2010, 12:27 PM
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My husband also has RSD in his hand but is currently in at least partial remission -- no pain, thank God. He had three nerve blocks which, at the time, provided very little relief but in the long run may have contributed greatly. He was on gabapentin for several months -- eventually up to 3600 mg/day, but never felt that it helped his pain much. His pain doctor was fresh out of residency and had no clue what else to try for him. Randy weaned himself off the drugs and has not had a pain prescription since. I know it's soon after his surgery but my recommendation, based on our experience, is to have him move his hand/fingers as much as he can stand. My husband went to PT three times/week for months, also did all those same exercises at home every single evening, and I believe that was key for his improvement. I also helped with his home exercises and I believe that my touching his hand and manipulating his fingers is one of the reasons he is not sensitive to touch. With my husband, it was always his tolerance level that decided how far we pushed his exercises, not some nurse. And his tolerance was different on different days. He'd have several good days and then a big set-back, so tell your husband to just keep working. Don't give up! As the spouse of an RSDer, I know how it feels to sit helplessly on the sidelines while your loved one is in pain. I educated myself on RSD, searched and searched and searched for non-pharmaceutical options, and did *lots* of praying. The web is your friend! And this forum is a godsend. Even though Randy is in remission, I visit this site almost daily to keep up on new treatments, just in case... Unfortunately, I cannot say for sure what ultimately caused my husband to start improving. We tried several unconventional things post-gabapentin, but always in addition to the exercise. Hopefully you'll find a knowledgable doctor who will put you on the right path. Please keep us posted. We're all rooting for you! |
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