Is Cleveland Clinic worth the trip???
 

My husband was diagnosed with RSD last year in June. He did intensive PT all summer and while we feel it ‘saved’ his arm, his arm still is in pain every day, still occasionally changes color, has the white blotchy spots, no hair, nails growing like crazy. PT released him saying they have done all they can do in October. He has body wide tremors and is feeling the same symptoms in his right arm (but without the color changes). He tried 2 stellate ganglion blocks last month that did nothing so his doctor did not want to do anymore of those. He was referred to Cleveland Clinic in January to see a movement specialist, who said his tremor is due to all of the pain that he is experiencing. He is currently on Neurontin, baclofen, Mobic, and Zanaflex. He also has Ultram that he can use p.r.n. His fatigue is constant. His doctor in MI wants to start him on the Butrans patch and has referred him back to CC to see if they can do anything to help with his pain. Cleveland is a good 8 to 9 hour drive for us. Obviously, my husband is no longer working. My job has gone from less than part time. Feeling so frustrated as he applied for SS, which was denied. We are now at the hearing level (just started). He is worried that if he says no to Cleveland, that will adversely affect his trying to get SS. He has been referred to a neuropsychologist, who is basically saying that someone can ‘convince’ themselves that the RSD is spreading…he feels like the doctors are saying this is all in his head. We are beyond frustrated and scared. My husband is 49 (soon to be 50) and I’m 44. Just wondering what good/different are they going to do at Cleveland? If he doesn’t go, will that adversely affect social security? This is such a nightmare….:(

Probably depending on the state, when applying for SS one thing that you would list are medical professionals who have charts pertaining to the reason you're needing to be on SS.
I am no expert and do not have all the facts. But the more doctors you have on your side, the better your chances. Get a good SS attorney, most are denied first time(s).

Reasons for being denied vary greatly!!

I have been diagnosed by several different doctors and had a great lawyer but my case went thru multiple appeals and was denied at the federal court level.

My RSD is from head to toe. I know of others who went through the same thing as I. BUT, I know others that won fairly easy. The system has no rhyme or reason and definitely is not fair.

Abbie

Ugh...How frustrating!!! We knew he would be denied at the application. Hoping the RSD with his terrible anxiety (not to mention all of the sleep inducing meds he is on) will help him win at the hearing stage. He has been diagnosed by 3 different doctors, but I get a funny feeling when they are puzzled over the stellate ganglion blocks not working for more than a day or 2. Crazy in his country how benefits that he has worked for are so hard to get...Guess we get to go broke first...what a shame.

Hang in there, I'm a husband who's wife has RSD. During our battles with doctors, insurance companies, SS, lawyers, the declining economy, almost lost the house, wife loosing her mind, denials from SSDI, me loosing my mind--on and on, but we came out of it Ok but a bit broke. My wife won her case finally, we saved the house, her stress is much lower and deals with it much better, I think, with her pain because of the lower stress. Stay focused like a laser and you both will pull through.

I keep hoping your post count will go up, so your private messages will be enabled. I'm uncomfortable giving recommendations on the forum.

When you have made a few more posts, your private messages will be enabled and then either PM me, or I will try to keep checking so I can PM you. I think I can help you with finding out info about Clev Clinic and docs etc.

Thanks for the post! It sure made me laugh...I so get the feeling of loosing our collective minds...This is one wicked *** disease that I would not wish on my worst enemy. You sure never truly believe when your that young couple up there taking those vows (better or worse, sickness and health) that anything like this will ever happen. At least we've been married for 20 years. Not sure I could have handled this early into our marriage. I think the humor (and the occasional tears) have helped us through this so far :hug:

Thank you! I will try to post some more!

Ok, I was able to send it now! Hope the info helps.