Hi all,
Hope this finds everyone doing well today. We just got out power back on. Been without heat, water, tv, internet for several days now. Good to be back with everyone
I'll start with my story for those that don't know me. I'm Mary and I've had rsd for about 4-5 years. I got my first scs over 2 years ago. I had the trial and after 3 days the surgical pain went down enough that I could get out of bed. I put shoes and socks on and went out. I had a cane to help me which was better then my walker. A month later I had the perm unit implanted. The recovery was really bad, and it took almost 4 wks before I wanted to get out of bed. I never really got the relief from the perm unit as I did the trial. I kept having the scs (stim) reset and I never had any luck with it. About a year later I noticed that the battery, which was placed in my butt, had started to turn around and it was hurting when I wanted to sit, etc. well the next dr. did an xray to see what he had to do, and he discovered the leads had pulled out and were somewhere else. So he replaced the complete unit moving the battery to the side. I knew something wasn't right, but as the dr. passes you over to the company rep after surgery, I didn't know for sure what was going on. I woke up one sunday nite, went to try to move, and discovered that I was soaked in pus which was pouring out of my side where the battery was. Long story short, ended up in ER, then surgery, then a nursing home. It was the worse experience in my life. Never again. In surgery, they had to remove the scs as the infection had gone up the leads to my spine. I don't think this would have happened if the dr. would continue to see you after surgery instead of passing you off to the comp. rep. who talkes over the scs side of things.
I swore I would never have another surgery and it took me over a year to decide that I really wanted to have my life back. I was on enough pain meds to knock out a horse, (of which I have 3 lol). I wanted my life back so bad that I started looking for things that I could do. I had been studing the pain pump for quite a while, doing research and talking to many pple who had one. Finally I decided to go for the trial.
It was the best thing I have ever done in my life.
The trial was 5 days in the hospital with an internal cath into the spinal fluid and an external pump. I woke up from surgery sleeping on my back. No pain from the surgical site. THey started me on Morphine, but it turned out I was allergic to it. THey were giving me zofran to stop me from throwing up, but guess what..I'm allergic to that also. (this is why the trial is done in the hosptial. they have to know that you are ok with the meds.). THey switched me to diluidad, which is more powerful the morphine, but less side effects and my life changed in that one day. the pain was almost gone. I could touch my feet and legs and walk without pain. even my butt was doing great. I didn't want the trial to end, but all good things must. It was 2 months before I could get in for the perm. THey kept me in the hospital for an overnighter to make sure I wouldn't get sick again. No problem. back a little sore from surgery, but I was up and walking without much pain. By day 3 I felt so good that I started ordering some scrubs as I'm going to go back to work as soon as I get the ok from the dr. The one thing I have found out about the pump is that you may have to search for a distance to find a dr that will do the pump. Why??? I don't know for sure but I have my theories. With the pump, you will be working with your surgeon/dr for the rest of your life. It is a commitment on your part and your drs. part. It's not put the unit in and leave, its monitor the pump, try different things in the pump so that you can get off the oral meds. I have horses and I want to ride again. WIth the scs I couldn't ride again, have to worry about the leads pulling out. ( of course they did anyway). with the pump, there are a few things I can't do. Bunge jumping. (darn it lol) and jumping out of planes. besides that I can do almost anything I want.
I know this is long, but I did want to explain how the pump works. You have a resivoiur that is implanted under your skin. Mine is to the right of the spine. to that is connected a cathater which goes into the spinal fluid in your spine. The dose of meds that you recieve is 1/300th of an oral dose. As this doesn't go thru the rest of your organs, it doesn't affect you like oral meds. I don't think thru a fog anymore. I can laugh at jokes because I really understand them again. Life is clear and brighter now. You can tell that I'm happy with it. I just wish I knew about it before and had done the extra that it took to find a dr. that would do it. None here would. They all hated it and said no no no. I found one in another state 3 hrs away, and it was well worth it to have my life back.
Any questions...I'll answer them Have a good evening
Hugs
Mary
