Klippel-Feil Syndrome Support Group

Hi, everyone, my name is Melissa and I have KFS. I was diagnosed in grade school during a school mandated scoliosis screening. Of course that led to a lot of tests. They revealed that I had KPS, spinal stenosis, 1 kidney, and I am not sure what else. It was considered mild when compared to other symptoms of KFS. I was actually living my life normally. I was careful doing activities, avoided contact sports...which was easy because I am not athletic anyway.. (haha), and tried to be normal. Only those in my family that knew could see my raised shoulder. I honestly did not have any pain or aches until October of this year (work related). I suffered a trauma to my body where my whole body shook and slammed to the ground with force. I suffered a head injury too. For most people it should have been a quick recovery...or at least in time. It is now the end of May and I still feel like absolute crap. I am in pain all of the time. I take narcotics 3-4 times a day for a tiny bit of relief, if at all, and have had injections and nothing has worked. I am honestly miserable. The pain is hard to describe, the tingling and arms falling asleep are absolutely annoying and make for a restless night of sleep and I honestly do not know what to do anymore. I am a workaholic and I am not able to work. Is it possible for me to all of a sudden feel this way? Pain is here and not going anywhere. I wake up in pain. I go to bed in pain. I spend my day trying to avoid pain by minimizing my activities...I avoid things. I cannot wear a bra...it sends my spine in a rage that takes 3-4 days at the least to bring down to where I can shower and get dressed. Is this honestly how I am going to feel the rest of my life? Sometimes I feel so alone because it is like how can someone feel this way all of the time and all I did was experience a trauma that could have had less of an impact on a non KFS individual. Am I even right to blame my deformity? Treatments have not worked and yet I continue to suffer through them. Some doctors just do not get it.

I did take matters into my won hands and research doctors. I am willing to travel. I am willing to take suggestions and recommendations. The injections bring about so many side effects that I do not need....I want to get better, feel relief, and get on with my life.

Thanks for listening...I hope my post makes sense. I do not think my husband understands... I feel alone.

I did not proofread and I am a teacher or at least I was anyway...

Hi, Melissa! It's good to "meet" you, and rest assured, you are not alone! It sounds like your spine got a good jarring, and that's not good for anyone with KFS. Have they done an MRI since the accident? I haven't had a chance to read your post closely, and will have to get back to you. We had a family emergency, and I have been "off the grid" for a week. Came back to 143 messages on one e-mail account, 75 on a second and 318 notifications on facebook. It's going to take some time to work through the backlog, and I've got a week's worth of work to catch up on, too. I've got to run for now, but wanted to welcome you to the group and let you know I'll get back to you as soon as I can!

--Gilbert

Welcome, Melissa. Our William (age 19) has KFS and his right shoulder is lower than his left. He has pain in his right hand although it is numb with no sensation to hot/cold. He also has scoliosis/kyphosis. He is on Gabapentin for nerve pain and Mobic for degenerative disc disease. Your message will ring home to many members here. A minor trauma that will only slow a "normal" person down for a day or two can be life changing for someone with KFS. You are not alone, but it can be lonely as you look for help because it is difficult to find a physician that is knowledgable about the ramifications of the syndrome. It is a holiday weekend but others will be here to welcome you soon.

Post edited by: grandmabrk, at: 05/27/2012 05:28 AM

Hi, thanks so much for your kind words. I have not been on here since I first signed up. I was supposed to have an injection in my neck, but it was postponed because I still had a huge bump from the first one. Uhhh. Always something, isnt it?

How are you? I hope you are well. Thanks again for your supportive words.

Hi! Wow, thank you so much for your support. I feel bad your son is experiencing so much. I feel for him, I really do. It is comforting that I am not the only one, if that makes sense. Thanks for the welcome.

Talk to you soon!