Hi, I am also desperate for some advice, I have a very similar story. My scoliosis was diagnosed when I was 7. I am currently 24. I wore a back brace during middle school (ugh that was miserable) and without any improvement I had to have spinal fusion surgery in 2004 when my top curve reached over 50 degrees. I had a backwards "S" and my bottom curve was smaller but almost "evened it out" as they said, so it was a pretty drastic curve as well. During the summer before I entered highschool I had the spinal fusion surgery along with my sister! She had more of a C curve but what are the odds that we both had to have it...in the same week! She does not feel as much pain now because she is fused all the way down unlike myself. My rods go from the bottom of my neck about 3/4ths down leaving the lumbar not fused (so I could play sports). So I played soccer and ran track throughout highschool just suffering from mild chronic pain..which I thought at the time was sooo intense, until I found out within the past year how bad it can really get. In highschool, I suppose that being active really helped, but I also was prescribed Tramadol (Ultram) for all of my highschool years and a lot of my college years...until I finally found a doctor that told me to get off of them and I would feel better. I was so naive at the age of 15 thinking that they would help me because terrible doctor told me so..he originally offered fentanyl patches!...to a 15 year old!! Thankfully I did not pursue that route but I was still falling asleep and drowsy all of the time in classes from the ultram. It fogged up my whole highschool years and I really regret that. So after I finally went off the the Ultram, I was feeling pretty good actually. Then, something changed. I started feeling more intense pain than I have ever felt. It feels like I can't even hold my own Head up on my neck. And it also feels like there are 20 elephants sitting on my shoulders at all times. This new feeling of the intense neck pain has gotten sooo bad that I have been miserable. I usually have such a positive attitude, even knowing that I will be dealing with this pain for my whole life, but once it gets to a point where there are no moments of relief EVER, it really takes a hold of you. My personality has changed and I've noticed I have become very short with the people I love due to how intense the pain is at all times. It feels like someone is strangling me in my sleep every night and I wake up with my neck feeling so weak and sore and literally every single muscle is so tight that it feels like they could rip at any second. I have tried everything that the doctors have ever offered. I have gotten different types of injections and none of them helped. I couldn't even sit through acupuncture due to how incredible tight ALL of my muscles are everywhere. I had also gotten a mylogram done and of course the 15% chance of getting a spinal headache happened (where your spinal fluid is still leaking from your spinal cord). So they had to do a blood patch where they take blood from your hands and patch the whole in your spine with a giaanttt needle!...and they ROYALLY messed that one up. The so called "doctor" is sitting there for 45 minutes pulling the needle in and out of my spine saying he cant seem to find the right spot due to my scoliosis, while the people getting the blood from my hands could not seem to get the blood into the containers so there as blood everywhere. It was the most traumatizing experience of my life and I thought I would not be walking out of there. Thank goodness eventually they finally did it and it got rid of the spinal headache..but all of tha to find out tht there was no nerve damage! I knew this at the beginning because I can feel that it is alllll muscle inflammation and spasms. They are constantly being pushed and pulled form the rotation of my spine. I believe that my neck and lower back (the parts that are not fused) are trying tocontinue to curve which is not fun at all and I am so scared of the thought to have to get another surgery...although I am sure that the new technology is a lot better than my Harrington Rods. I have tried basically every single possibility of non-narcotic pain treatments including some anti-depressants that claim they help pain and have had no success. (and at the age of 24 that is pretty sad) I have been taking Soma which helps temporarily, but I have gotten to the point of needing it too often. I dont want to have to take anything too often. It has gotten so bad that I cannot stop losing weight, along with my hair constantly falling out more than I have ever experienced. I AM SCARED. My weight went all the way down to 104 and I was able to bring it back up to 109 which is still a little over 10 pounds less than my normal weight has been. I am very worried about my hair loss and I was wondering if these symptoms are really from how terrible the pain has been for the past 6 months. I am sorry for writing such a long post, and I really appreciate it if anybody made it through my whole story. I am also in dire need of some help. I did not want to go back down the road of pills but it has gotten so unbearable lately that its hard for me to work, and just live. I recently got prescribed Tylenol 3 with codeine temporarily with the soma so that I can not be so miserable. It has helped to take the edge off but at such a young age, I would rather not take tons of pills everyday. I am desperate and I would appreciate any advice soooo much. I am searching for another physical therapist to try because at this point I am open to anything. I was informed about InferRed light therapy as well so if anyone knows anything about that I would greatly appreciate your input. Thanks so much again for reading, I will NOT let this keep bringing me down. A change needs to start now. Any advice is good advice at this point so please if you see this and can help, you are amazing. <3
Sincerely,
-Alisa