Hey everyone. I am new here.
My husband suffers from RSD although I guess by now it would be stage 3 of CRPS a
Here is our story
13 years ago my 23 yr old husband who was in great shape, played rep baseball and hockey for many years hit a rut in the ice while playing men's hockey.
He tore his ACL meniscus tear, ( in half) mcl strain.
After a year of suffering in pain and reinjuring a few times the dr did a ROUTINE scope ( I hate that word) he promised my hubby that he would be golfing 2 weeks later.
First after filling out the lonnnngggggg presurgey booklet and stating that both sides of his fam suffer from blood clots, the DR decided against giving him a blood thinner with surgery. ( back then it was up to the DR) so!! He had surgery on Monday. By wed I was on the phone to the dr. My husband was in excruciating pain and nothing was working. So we went in to the dr.
He told us everything was fine go home here are some perks.
So days go by, weeks and he is still in a lot of pain, we go back. Dr. Says ok let's do an ultra sound and see. Then they did a vascular ultra sound
At that time there were 23 superficial blood clots in his leg. Some the size of quarters.
Doc says " they aren't in any danger of moving so nothing we can do, here are some more perks"
Let me just add that during that time my husband was taking 6-8 Percocet at a time,
So weeks go by and we go back in and say something isn't right. He has burning pain, can't move his leg,
Dr says ok I'll send u to another dr.
We go in there is a pic behind his desk of our surgeon and him playing golf together, that doc says I know what's wrong, we are going to cut u from hip to ankle and strip your veins let's sched for tomorrow.
My SO (significant other) says wait I have to talk to my wife.
He came home and we said " no way is he going under the knife again, not when they are friends" we found out after that if we had consented to the surgery then DR. Asshole wouldn't be liable for any injuries caused.
So months go by and I'm calling the receptionist weekely to let her know SO is out of his meds, she is faxing scrips to the pharmacy at an alarming rate.
So about 9 months in my SO looses it on the surgeon. He says u know what it's all in your head, your hooked on perks I'm done, kicks him out of his office.
So for 2 years we go to dr after dr and they all say the same thing, it's in your head here is antidepressants and Percocet.
So we get in the car and drive to sunnybrook to a dr who we had heard could help us.
We sat in his office all day begging him to help us we have 5 vascular ultrasounds, bone scan, x- rays and other tests. He finally agrees to see us. Takes one look at my husbands leg and says you have Reflex sypothetic dystrophy. We asked him what that was. He said its nerve damage
It's treatable not curable and you will have it for the rest of your life.
You need a pain dr.
So we leave there relieved because we now know what's wrong, but!! We know it's never going away. So we see drs, pain management we see many people nobody knows what to do, or how to treat this, they send him for test after test and give him all kinds of meds because nobody knows enough about this and they are just taking guess after guessby this time he has started to have seizures and "dizzy spells" his leg feels like his bones are melting his skin.
So it's been 13 years. Approx 30 diff drs hundreds of tests, hundreds of meds.
And my husband suffers every day with crippling pain.the one pain medication that actually helped him after years of trying a cocktail of meds was OxyContin and the people that abuse that have made it impossible to take. His dr just decided to move to another Province and we can't find a dr to take him because his dr. Of 8 years had him on such a high dose that nobody will even speak to him, even with all of our tests, results, reports.
He gets dizzy, sometimes for a few mins, sometimes for hours, I just found out tonight that the dizziness is a form of seizure. Which no dr. Has ever told us before. Drs. Really don't know much about this crippling condition.
So! That's our story. He has been living with this pain for 13 years, we have 2 children, have been together 16 years, I love my husband but I hate his pain. It runs our entire lives, I sympathize with him. I feel for him, he has a hatred for drs that is well founded, he lashes out when he is in pain, I receive most of that anger which is very difficult, but I don't live with pain.
Thank you for letting me share my story. I apologize for any spelling mistakes or punctuation I am trying to type this fast while dealing with a two year old.
I logged on to this forum tonight to see if there was any new info on this condition, I was pleasently surprised to read a bunch of new treatments and information that we didn't have before. When my SO was diagnosed there were only 500 documented cases and none of them were anywhere close to where we were.
Incase anyone asks or is wondering we live in Canada and before u have surgery u have to sign an agreement stating that if something goes wrong u are unable to sue. Now we could have sued within 2 years of the surgery but because the dr kept sending us to trusted colleagues who covered for him we did not get a diagnosis until after the three year mark. By then it was too late to do anything about it. We have logged a formal complaint with the dr. We have also contacted the college of physicians, so this mistake and terrible treatment is logged on his permanent record as a dr. We also have one other person who had surgery the same morning as my husband had problems as well, his were not as severe and has since been corrected by a different dr.
Thank you.
Tammy.