NeuroTalk Support Groups - Husband has RSD and need advice/support/vent

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- - Husband has RSD and need advice/support/vent (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/128227-husband-rsd-advice-support-vent.html)

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!

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

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:

Originally Posted by BabyLeilani (Post 676334)

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

Quote:

Originally Posted by BabyLeilani (Post 676152)

Sorry this is so long! I just haven't vented to anybody for so long. I am new here.. My 26 year old husband has RSD on his right hand/arm and is currently an in- patient at a DC hospital. His Pain management doctors aren't much help at all. (And yes I did say "doctors" as they keep trying to pass him around as they don't know what to do with him.) He is currently the only patient in their hospital that has the highest dosage of medicine due to his pain (Oxycodone 10mg, MS Contin 60mg, Hydromorphone 4mg, Lyrica 100mg, Baclofen 10mg, Verapamil 80mg) Most of his nurses keep accusing him of being a drug addict and he's far from it. One of my questions now is: Is this too high for any of you or sounds about right? One of his pain management doctors is trying to lower his dosage to about half and I'm a bit concerned with that as he is in enough pain as it is. I'm also pretty sure that one of his past doctors mentioned that his current dosage isn't high enough for liver damage. I would like to know exactly what is the harmful amount just for knowledge?

Also just to vent, we went into his appointment a week ago to get his stitches out (to loosen his tendons on his fingers) and one of his PM doctors came in to tell him there is nothing more they can do for him besides amputation. She told him the only thing he can do for his self is to force his fingers to move before they tighten up again. And she literally grabbed his hand right there (with the knowledge of his burning pain and that he just got his stitches out) and screamed at him to move it. My husband was so overwhelmed with pain that he started crying as she held it forcibly. I started to try to reason with her and tell her to please give him a break or atleast some kind of sedation/medication before she does that. She screamed at me and told me to stop it, that this is what he needs to do. The other two doctors in there literally got quiet but didn't do anything. I know he needs to move his fingers but was it necessary for her to scream or to hold his arm/hand in such a manner? Isn't that the job of his physical therapist anyways?

I need advice/ support as I have no idea what to do anymore. I feel like he is being mistreated in his current hospital. Is there also anything we can do about the pain management doctor that I've just vented about? She is also his main pain management doctor and the lowering of medicine dosage is her idea... And I'm getting overwhelmed. I just hate seeing my husband cry (which he's been doing this whole week in his in patient stay at the hospital). He used to have such high pain toleration before his RSD diagnosis because he was in the Marines.. and when he cries I know it's intolerable. His pain scale has been a high 9 and 10 this whole week and I want it to atleast go down to a 7. (With nerve blocks it has gone down to a 4 except they're very limited with nerve blocks and it usually only lasts one or 2 days.) I'd also just like to ask if there is any other thing he can do for the burning pain as they're trying to lower his dosage?

Overwhelmed wife,
Sam

Sam,

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

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.

@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!

Quote:

Originally Posted by BabyLeilani (Post 676595)

So glad I was able to help. We have all been in the same situation when first dx. It definitly gets better in terms of care once you find someone who treats RSD. If you go on the Hopkins web site and look up the pain dept. it should list the pain doctors then when you look at each individual it will say what they treat and it will say RSD or CRPS OR COMPLEX REGIONAL PAIN SYNDROM. Good Luck...

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

Quote:

Originally Posted by BabyLeilani (Post 676334)

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!