I went to Lubbock to visit Dr. Gabor Racz.
First of all, and totally off subject, Lubbock is so FLAT and WINDY! Wow!
Just in case you don’t believe me, I took a few pictures of Lubbock during the few hours I was there.
Okay, anyway, my appointment was at 1:30pm and the doctor didn’t show up until 6:00pm (not kidding) and my flight left at 7:45pm. Calling it close! ;) He was late because his surgery was delayed so, I couldn’t hold that against him.
Dr. Racz has fellows and doctors from Europe that follow him around and study his methods. It is impressive.
When he entered the room, he had a fellow with him and a doctor from overseas.
According to him, he is the “father” of pain management. He is the inventor of some of the leading pain management procedures used today.
During our short visit, we discussed some of the treatment options that I have had for RSD/CRPS and why they didn’t work. He was actually able to tell me why my SCS isn’t working and that it is because of my SCS that my pain is spreading. Very interesting.
Dr. Racz also discussed what treatment options would be best for me. In September (we are having to wait for my insurance to kick in and for him to come back from a talk tour in Europe), he wants to do a lumbar epidural with a 7 day infusion. This will give me a pain “vacation” and help to break the pain cycle. Then Dr. Racz would like to do peripheral nerve stimulator to make it so that my spinal cord stimulator will work again. He said that my spinal cord stimulator is too far up on my spinal and cannot handle the type of pain of have. <Side note: Dr. Racz said that the battery pack to my SCS should have been placed on the right hand side of my body, where I do not have RSD/CRPS. That way, my body could have healed and my RSD/CRPS wouldn’t have spread. Instead, it is on left side of my body (the same side as my RSD/CRPS) and hurts like crazy.> He also said that my scars haven’t healed correctly which can cause even more pain. He wants to do something to correct them and clean up the tissue.
All of that being said, I honestly don’t know what is the best decision for me right now.
Every doctor that I have seen for RSD/CRPS tells me something different and that they have the latest and greatest treatment. I just wish two of them would agree on a treatment plan! It’s madness.
When I went in June, I was excited, ready.
Now that I have had time to reflect, I feel like I need to pray about it.
Hi Danielle. Please forgive my delay in response.
Congrats on your next step to beating RSD/CRPS! :)) I know how difficult it can be to make the decision to put a SCS in your body as it is life changing, but in a good way. I had to fly all the way to Russia and spend time with my love ones before I made the decision. Sure, I will be more than happy to tell you a little bit about my experience with my SCS but my experience cannot effect your decision. Everyone’s body is different and their RSD/CRPS is different. I am by no means a medical doctor and just because I’m having issues with mine right now, doesn’t mean it isn’t a good option for you. :)
I had my Medtronic SCS implant on 11/11/11. It was done at St. Luke’s Hospital by Dr. Viswanathan. He is a wonderful neurosurgeon and I would recommend him highly. They decided on the day of my surgery to do paddle leads so that it wouldn’t move since I do travel a lot. Since they did the paddle I was in the hospital for five days after the surgery, recovering and two weeks in bed after I was released. I was in horrible pain, in my lower lumbar area, after the SCS implant, and no pain killers could touch it. This does go away, no worries! :) What the doctor didn’t tell me is that the battery would hurt and be uncomfortable for 4-6 months after my surgery. :( For a month an half after my surgery, I had weird side effects. At night, I was so hot that I sweated through everything and I couldn’t get comfortable (the battery pack made it so I couldn’t get comfortable). It was a little ridiculous. I told all of my doctors about this as it was robbing me of my sleep and they said it will go away in a few months. Thankfully, within a month and a half, the side effects did go away. :) To help me cope with the weird side effects until they went away, I went to the store and bought two King size spa pillows and lined they up with my body and one Queen size spa pillow for my head and some how that allowed for me to relax enough to sleep.
I tired to do physical therapy the week after I came home from the hospital, it was horrible. :( I continued but saw no improvement. So, after three weeks of that craziness, I stopped.
The wonderful news is that by the middle of December 2011, I was feeling like my old self again. I was able to put my cowgirl boots (RSD made it so I couldn’t wear a shoe on my left foot), I could walk long distances, I could do household chores (I would get tired easily but I could still do them), and I even registered to go back to university. It was awesome! I did have some pain but it was only at night and it was manageable! Really!! :) So my doctor’s told me that I was doing great and I could fly on a plane. :)) I booked a flight to spend New Years with my friends in Atlanta and left on December 28th. Everything was great in Atlanta until I was in my friend’s basement and we were doing stretches for Tescao (Tibetan Martial Arts ). I collapsed on the floor and couldn’t move. My back was killing me! I laid on his floor for what felt like forever, as my friends tried their best to comfort me. I asked them if my battery packed looked “red” or “infected” and they said, “no”. So, we couldn’t figure out what was happening to my body. Since my insurance only works in the state of Texas, we couldn’t get me any help. The pain passed and I was able to stand up and walk over to the sofa but I started to have intense RSD pain again. I turned my stimulator on higher but it wasn’t touching my pain. Every since that day, my stimulator hasn’t helped with my pain. I have since been back to Texas, had my SCS reprogrammed, with no relief. I have seen my pain doctor, told him everything and he thinks it’s the way my body reacted to the plane pressurization. :( So, he asked for me to have the SCS reprogrammed again this coming week, which I am.
I’m a little discouraged as I’m having horrible pain flares again. I’m not sleeping due to pain, wasn’t able to go back to school, can’t wear normal shoes anymore…it’s like I never had the SCS put in at all. :( If the reprogramming doesn’t help, I’m going to find a new doctor. I will keep you updated.
Hope this helps. Please keep me updated with your situation as well. I will keep you in my prayers.
It is now three months post-opp and my Spinal Cord Stimulator has stopped working. Has this ever happened to any one else? It seems as though I got more pain relief the first month it was in and then no matter how many times Medtronics reprogrammed it, I couldn’t get the same relief. I also noticed that my RSD/CRPS is spreading to my right leg since the surgery. Looking for some HOPE! :)
I have really great news! I had my Spinal Cord Stimulator surgery on October 25th and it went very well. My Spinal Cord Stimulator trial is working so well that when I went to see my doctor last week, he refused to take it out. My pain level (measured on a scale of 1-10…10 being the worst) has been at a 3 with the SCS trial, which is amazing because without the SCS trial, my pain level is normally a 10. In reality, I normally say it’s a 15 because the 1-10 scale doesn’t apply to people who have RSD/CRPS. I have had a few times of my pain level being at an 8 with the SCS trial, but my doctor said that is totally normal because my body is getting use to moving again. I am able to put a shoe on my left foot (I have RSD/CRPS in my whole left leg) for the first time since I was diagnosed with RSD/CRPS and yesterday I walked for one hour. I almost cried because I was so overwhelmed with happiness. It’s amazing. :))
I spoke to the nurse of the neurosurgeon who will be doing the permanent implant of my SCS and they have everything set up for this week. :)) I have a clinic day on November 8 where I will get to meet the neurosurgeon who will do my surgery. I have already done a lot of research on him and am feeling quite confident in his abilities. He is a professor at Baylor College of Medicine and he has his own medical practice. He has also won a few awards for his work. So, I am praying that God has put me in good hands. My surgery for the permanent SCS implement is scheduled for November 11 at 8:30am (it might be 11:00am…the nurse is trying to figure out what is better for the hospital) at St. Luke’s Hospital in the Medical Center in Houston, Texas. So that is pretty nifty!! My prayers are that God has led me to this neurosurgeon and now I won’t have to deal with any other silly doctors anymore.
The only thing is that I am having a lot of trouble sleeping with my SCS trial. It’s very painful/awkward on my back and I cannot find a comfortable position in my bed. I even spoke to my doctor about this and he suggested that I just turn off my trial SCS while I am sleeping. The issue with that is my RSD/CRPS will flare up while the SCS is off and I will be in so much pain that I won’t be able to sleep. So, as you can see, I am kind of in a pickle. Max suggested that I go to the store and buy as many soft pillows as possible to make myself comfy, which I did today and am going to try tonight. I called the Medtronic representative and asked if he could come to my house and reprogram my stimulator as I feel something is wrong. I have noticed that if I am not on my back or sitting/standing straight up, I don’t receive any stimulation. It’s so crazy! If I sit incorrectly, the stimulator vibrates my right kidney. Not very pleasant.
Today, my left foot felt like a watermelon and it was very hard to put a shoe on due to my RSD/CRPS pain. This is the first time this has happened since I have had the SCS trial. So, I just think the stimulator needs to be reprogrammed to give me more stimulation in my left leg (since that is my RSD/CRPS is located) than my right (no RSD/CRPS at all).
Anyway, besides that, I am a happy camper. I never thought my pain level would be below a 5. :))
Did anyone else have this issue with their trial Spinal Cord Stimulator?
How is everyone else managing their pain this week?
Don’t forget, November is RSD/CRPS awareness month!! Wear your orange support ribbons to raise awareness!! :))