Sunday, August 31, 2008

Sorry we haven't written in awhile!

Trust me, ALOT has been going on!

First of all, I want to thank everyone for all the emails (to my mom!) and for the continued thoughts and prayers. They mean more to mean than you know!!

A few weeks ago I got approved for Social Security which is great being I'm so young and they never really seem to approve younger people and that I did get it so fast. However, the downfall is I won't received any "real help" from them until April 1, 2010 when I will received Medicare. To receive Medicare you have to be in the applying process of Social Security for two years so until then I will be paying COBRA. And, so since I was approved so fast, I have to wait the full two years.

So here's the down low on what's going on with my RSD. Unfortunately, lately it's been a living hell. First, I saw a doctor down in Miami - University of Miami - Jackson and he was willing to do the low-dose ketamine drip. Basically, this drip is almost equivalent to a horse tranquilizer. They have only done it to one other patient but, he only had RSD in one leg and it worked great for him. The low-dose ketamine drip is supposedly one of the last options a person with RSD tries and it should help with the pain somewhat. Then there are patients who go on to do a five day ketamine coma, which they only do in Germany and Mexico and it costs at least $40,000 and insurance doesn't cover it.

Here's my experience with the low-dose ketamine drip which was done August 26th. Beforehand, everyone was a little excited and hopeful that this was going to help my pain somewhat. We got up bright and early and drove to the hospital in Miami and surprisingly there were nurses waiting upfront for us...and she escorted us straight back to the recovery area where the procedure was done. We were the only one's in the room and all attention was on me. I was able to take a velum since I was very nervous and they put some numbing cream where they thought certain veins would work for the i.v. Since we had gotten up so early that morning and didn't get much sleep the night before, I was very very tired. I ended up falling asleep at this point. There were about three doctors in there all the time along with a couple nurses (one being Asian - remember this part for later). Since I had been sleeping for about an hour the doctor told my mom and Craig to go downstairs for a bit to eat since it will be awhile. While they were gone, I had a bad hallucination which I felt like my body was awake but my mind was somewhere else. When I looked up at the doctors I had been crying and I had no idea where I was...they kept asking me where I thought I was and I kept saying in a China and I didn't want to be in China anymore and I wasn't making any since at all. At one point I said I was in Africa and I basically couldn't fully wake up. Around this point, mom and Craig came back and saw the curtain around me and the doctors and nurses all around me. Then I looked at my mom and I realized that it was, I kept saying okay and finally started coming out of it. So, after everything was fine, they were all wondering why I thought I was in China..they thought for sure it was because I watched Olympics and so I just went with that...but, actually it was of the Asian nurse as I stated earlier! About 5 minutes later my legs began to hurt and that is when I knew the drip didn't help at all. The doctor recommend I do a second one in a week or two and increase this certain amount of drug they give you beforehand so you have pleasant dreams. Since I'm taking so many medications they figured out that I would need more than the usual RSD patient would need. So, the whole night I didn't sleep well and my legs kept hurting me. Mom got up around 5:30am and to her surprise I had already been up and in sooo much more pain then ever before. Mom tried calling the doctor and left messages and to this day he still hasn't returned any of her 5 messages! We ended up going to my Pain Management doctor and told him about the situation and he was pretty surprised that it didn't help at all. He thinks we should go to Philadelphia to see the RSD Guru. We did call up there at one time and there is a two year waiting list! My doctor was very sympathetic and increased my meds and we are now thinking of having the Spinal Cord Stimulator implanted eventually.

So, there ya have it....not the great news we wanted to share...but, just thought we better keep you all updated....good or bad. We will try to updated this more often.

Thanks again!


Jim said...

Thought you might like to know that our daughter (19yrs old) has had a stimulator for close to 3 years now.
While it hasn't cured the RSD/CRPS it has enabled her to cope, most of the time. Recently switched from Neurontin to Lyrica and that seemed to cause a flare up. Has had to have a series of 3 injections to get under control and is back on neurontin.

Don't be frightened or listen to too much of the negativity surrounding the implants. They are no more dangerous than any procedure that is close to the spinal column.

Dory said...

My daughter was 19 when she had stimulator implanted. That was b/c what used to work for her no longer did. For most of the early part of 2004 she was in a hospital, on IV morphine, fentanyl, gabatril, zanaflex, elavil..countless other narcotics. She was in a wheelchair and gained 40 lbs as she was unable to get around. Although she had some problems w/SCS, and no it doesn't cure RSD, she is out of wheelchair, doing college online, able to work part time and have a social life again. She continues to have break through pain but the SCS was a God send for Amanda. If you have any questions please feel free to email me at Praying you get the relief you deserve.
Dory Marcinelli