[momzpeachy]

Hi everyone,

Well it's definitely been a while since I've posted. I'm sorry I've been away so long. Life has been pretty hectic and I have been going through hell the last year and a half.

I was diagnosed with TOS in January of 2007 and went through so many courses of treatment and all FAILED! I was in so much pain and my right arm was pretty much useless. I couldn't hold a pen or write my name. It was horrible! I was told that the only thing left was surgery and that was what I needed. I was scared and I worried about it but I was told it would most likely be a success for me and I would see improvement. I did have improvement for a little while but things started going down hill. I never really received post op physical therapy which I think is some of the problem. 5 months after the TOS surgery, I was back in the hospital with thoracic spine surgery. I had a major herniation at T10/T11 which was causing spinal cord compression. They have no clue why this happened. So I had 2 MAJOR surgeries within 5 months of eachother. The spine surgery was very successful. I was feeling better immediately following the surgery. I was still having lots of issues with the TOS though. I started going to physical therapy 2x per week and traveled almost an hour to see this therapist. He is an expert with TOS but even still he had trouble. We just couldn't seem to get anywhere at times. We started making some progress and I felt a bit better. I started exercising and even doing light jogging on a treadmill but I would do ok then have a huge flare for a week or two. We were constantly up and down with things and he said we just kept hitting a dead end.

I started going to multiple Dr's once again because I knew something was wrong. I was losing my hair, irritability, skin and hair changes, constant vision changes and headaches. My pain management Dr tried a nerve block which went horrible wrong! Instead of getting relief, I was in major burning pain for 2 weeks! I was trying different things and nothing was working. My Dr's looked at me like I had 2 heads. My primary Dr wanted to think that this was all because of STRESS! I begged for these Dr's to look and find the problem..something was wrong and I knew it! Things were changing rapidly! I had 3 different pairs of eyeglasses in a year! The headaches were getting so bad and I couldn't see. I was dizzy and feeling awful. I was scared to death. My primary Dr called in a prescription for antibiotics to try and treat what he thought may be a sinus infection! What a joke! I wasn't even sick! I called my surgeon's offie and they told me to get to the ER. My husband drove me down to philly to Hahnemann Hospital because that is where my neurosurgeon was at and my spine surgery was. I trusted them. They knew I was coming so they brought me right in and took charge. They called in Neurology also. They definitely could see something was wrong and they admitted me for 3 days and did every test under the sun. I even had a spinal tap done! OMG THAT WAS AWFUL!!! I never ever want to do that again! My neurologist in charge was pretty sure he knew right from the start that this was CRPS/RSD once he heard I had TOS and was still having problems. But they had to rule everything else out to get the diagnosis for sure. I left the hospital with the Dr telling me he was sure that is what I have. I saw him almost 2 weeks later in the clinic and it was confirmed that I have severe RSD.

I'm a real mess at this point. I was told that the only treatment that will possibly work at this point is the Ketamine treatment. I was a little bit in shock and quite upset. I went down for the QST (sensory test) and it showed exactly what I figured it would. I have hypersensitivity BIG TIME to cold and also to hot but cold is SEVERE. I can't stand fans, air conditioning, wind, changes of temperature, the shower, just about everything drives me NUTS! My family is going crazy with me because I hate the fans on or the cold AC and now it's hot outside. I can't stand being anywhere! I hate going into the grocery store, especially the cold sections..OMG I freak out!

I have constant burning pain. I feel like my right arm is on fire from the neck to the hand. It's horrible, It also spread to my left foot and now starting in the left arm and left leg. It's been spreading and pretty fast. I am having diffficulty using my right arm now and bending my wrist. My hand at times just doesn't work. It hurts so bad and is so stiff. I was picking up an empty soda can and I just couldn't hold it with my right hand. I cried! My skin is dry and sweaty all the time. I feel hot like I'm on fire but if someone else touches me they say I feel cool. My hair on my legs changed to coarse hair and I can't stand it. I have a red rash on the right arm and other places at times. I look like I have a bad case of the goosebumps most of the time. My legs and arms get red and blotchy looking then they can change pale white then blue/purple. It's horrible. It's also in my face. My face hurts and I get all red and rashy looking. My vision has changed for the worse again. I can barely see at times. It comes and goes. Sometimes everything in front of me is a blur. I have lost peripheral vision also and my right eye is now drooped and I have trouble opening it. The Dr's have to actually try and lift the eyelid up. It looks swollen and droopy. My scalp hurts, my ears hurt, everything hurts at times. My joints get stiff and I just can't stand being in this body!

I totally hate this..I am so darn frustrated and can't take anymore! My body has been through so much. I also now have trouble concentrating and thinking. My short term memory has gone bad also. It's becoming full body RSD and I guess my only chance of having any life is to have the ketamine treatment. I can't picture another 5 years of this. I don't think I can tolerate another year! It's horrible and I cry at some point every day. It's just so hard.

I'm looking to talk with others and learn more about the ketamine treatment. I'm on the waiting list for inpatient (5 day) but they will start me on the 10 day outpatient. I would like to hear from anyone who has gone through it and the outcome. My family is freaking out over this. I need some help through this ..I don't think I can do this alone. I've been fighting but I'm losing the fight it seems.

I hope to hear and talk with you soon!

Momz