Help Please! I don't know what to do anymore!!
I had posted this on a different forum while waiting to be activated... Here is my story.
Hello everyone, I am a new member that has been battling with what I think is a Kyphotic curve in the cervical part of my spine since I was in my teens. I am writing this to not only vent, but to help find answers and what I should be doing.
I have always known my back was ‘different’, even when I was a kid. There was always a little hump in my upper back/neck area. It wasn’t until I was 12 years old that I found out it was kyphosis through my middle schools physical testing. However, being 24 and since then, I have yet to be diagnosed by a physician.
I began seeing a doctor about my back ‘problem’ when I was 21. Initially I complained of back pain that had been going on for several years and told him I think I have kyphosis. I ended up receiving x-rays, but only of my cervical spine. The test turned out fine. This, in my opinion, is due to the fact that my whole spine was not x-rayed, the cervical area still showed a natural ‘j’ shaped curve, and without a whole x-ray of my spine extreme forward head posture could not be established. However, my doc did prescribe me hydrocodone, muscle relaxers, and anti-inflammatory medications. All of which I have been taking since then are barely helping with the pain. He did however send me for a referral to a spine specialist and to have an MRI done. I was however not able to do this because my health insurance expired due to my father’s loss of a job.
Fast forward to now. So between 21 and just a few months ago, I felt helpless! I did not have medical insurance and here in the states, if you have a pre-existing condition forget about trying to get medical insurance, it is literally impossible!! At the beginning of the year, I was put on to my father’s Kaiser Permanente health plan. It was a miracle! I finally felt that this was it, that I would be diagnosed, taken through the process, and finally treated! Boy was I wrong!
Kaiser Permanente physicians are crap! If you guys/girls are not familiar, Kaiser is its own Hospital/Plan in itself where you can only use Kaiser Permanente Hospitals and Physicians. So, I set up an appointment immediately. My initial appointment was a physical and to tell my doc about my problems. When I told her the meds I was on and how long I have had this problem, she got pissed! She told me I need to get off those meds now and that I am too young to be taking those. I immediately told her no, I need to be referred to a spine doctor. This didn’t happen. I was referred to a pain specialist. A few weeks later, I go in to the pain specialist, I tell him the same thing. X-Rays are given, and what do you know, nothing again! After years of waiting, the same thing again? Everything is supposed to be fine with me? They did x-rays, supposedly of my whole back, but I have yet to see them to this day. He then refers me to back and neck therapy classes. This just pissed me off! How are you going to send someone to a therapy class to try and rehabilitate them from something when you don’t even know what that something is!!!! So these classes, which I have been doing to this day, have been little to no help.
I mean I have no jaw-line anymore and my face has changed over the years, no one even recognizes me!!! My neck and back are killing me!
Today, I set up an appointment from two weeks from today. What do I ask? What do I tell him? Do I ask for an MRI? Do I take a look at my x-rays? I am in pain 24/7 and have been for years and years and I just want it to stop!! I feel hopeless! The 20’s are suppose to be your growing years and I feel like my life is dead stopped because of this pain that is becoming worse throughout the years!
Please Help! PS…. Sorry for the long-winded intro!
If your X-rays are fine, have they checked your rheumatoid factor? I have a friend who is recently diagnosed with rheumatoid arthritis. She has been suffering for a while before they figured it out. It sounds like a different condition if your jaw-line is disappearing. I have a very high upper thoracic curve that causes me quite a bit of pain in the neck and am also on pain meds. You could also request a full spine myelogram with CT. It's a lot of radiation, but it sounds like in your case you need to know. There could be something not showing up on the x-ray. The myelogram/CT gives more information than an MRI as it outlines the spinal chord, lining, and nerve roots along with bone structure. You would need to see a neurosurgeon or a spine specialist for this. I hope this is helpful and wish you the best.
Thanks rohrer, very great advice, I will ask for a CT scan next appointment. I just sucks not finding answers while at the same time being feed bs, meds (which barley work) and a PT appointments where there is no explanation for this problem. Is it possible to have arthritis at such a young age?
Originally Posted by rohrer01
yes, it most certainly is, sad to say...
there is something called "juvenile rhumatoid arthritis," amongst other arthritis that can and does impact young people!
there are kids effected by arthritis because they contracted Lyme disease and didn't know it, or knew it and were insufficiently treated!
i know how Pfizer Permanente can be...my father had them...they didn't give him blood thinners in his late 80's...as a result, he had a blood clot that went to his brain and caused a stroke when he was 90!! i never have had a high opinion of that place!
i think you should ask for as many tests as you can, including blood tests, to see if there is a condition or syndrome the doctors are not thinking of!
best of luck