My doctor didn't help me! Need help!

[sane333]

Hi guys, I'm new here so I apologize if this kind of thing has been posted several times already.

I am nearly 24 years old and I have excruciatingly bad back pain from scoliosis. My everyday back pain I've become numb to for the most part, but every now and then I have these incredibly bad "episodes". My back will suddenly feel like it's crushing itself under its own weight and knock me to the ground. It sends shooting pain sensations down both my arms and sometimes numbs them for a couple minutes to an hour at times. My arms will curl up against my chest as a reflex to the amount of pain I'm in. It even hurts to breathe when this happens. I will get migraines from it as well. I seem to experience these episodes more often during the change of seasons.

The doctor I’ve been going to for years has been of absolutely no help to me. I've never been told my curvature. I've never been told the results of my x-rays. I've never been told what my options are. All he does for me is give me a prescription for an anti-inflammatory (Methocarbomol 500mg) which do nothing for the episodes. My doctor tells me that the pain is due to muscle spasms in my back, hence the anti-inflammatory meds. I believe it may be a pinched nerve because of the shooting pain down my arms. Maybe it’s not a pinched nerve, but I’m inclined to believe its nerve pain of some sort.

I did not know I had scoliosis until I was about 19 or so. I went in because the pain was interfering with work to the point where I couldn’t get much done. I had to lay flat on my back several times a day to alleviate the intense pain. At one appointment he finally told me that I’ve had scoliosis for basically my entire life, but did not tell me. He told me that my parents had told him specifically not to tell me so that I wouldn’t limit myself during activities growing up. I was not very happy with this. Nothing has ever been done to help me with it. No brace, no information, just anti-inflammatory meds that don’t help. I think the doctor thought that I just wanted narcotics. I don’t want to abuse prescription drugs! I want help! At least information as to what my options are!

A couple years back, I moved to a new town that offers much better medical care but, I can no longer afford the insurance necessary to allow me to get medical attention. So, my main concerns are, is this pain going to get worse? What can I do to ease the pain without medication? Is this amount/type of pain common? What should I do from this point?

Thanks in advance for your help!

-Jim

jimbrodhagen@yahoo.com

[Carmell]

Jim,

I don't usually post on this board, but your post left me wanting to help you! I can't imagine the treatment your "doctor" (and I use that term loosely) has provided. UGH. No wonder you are very frustrated and angry (I would be, if you aren't).

Now, you need relief. If your doc is correct and you've had this "condition" of scoliosis all your life (basically) you need to be seeing a scoliosis specialist. You can't change the treatment (or lack thereof) that happened in the past, but you can move forward. Is there anyway you can afford insurance or payments to see an orthopedist who specializes in scoliosis issues? And, if you've had this "basically" all your life, I wonder if you have congenital malformations in one or more vertebrae. If that's the case, you need to see an ortho who understands congenital scoliosis issues. The least the doc should have done was SHOW you the xray and inform you of any options.

The pain you describe definitely sounds nerve-related. A full spine MRI would help a doc see what the soft tissue and spinal cord are doing in your spine. It could be a pinched nerve, or it could be something related to congenital problems. You won't know anything until you actually meet with someone who has some intelligence about scoliosis.

I see you are in Nebraska. Not a lot of spine specialists there. I did a quick search in the Verizon yellowpages for orthopedists in Nebraska (Lincoln, specifically). There are quite a few orthos. My suggestion is to start calling the offices and find out who is a scoliosis specialist. That's a start, at least.

Good luck and let us know how things go.

[sane333]

Thank you so much for your concern!

So far you are 1 up on my doctor for genuine concern!

I have been very upset with the “treatment” I’ve received from my doctor for some time now. As is stands, I have very little money after paying the bills and such. So, health insurance is mostly out of the question. My father is an insurance adjuster, so I could get a good deal through him. Unfortunately, it is just beyond my monetary resources. I’ve asked my parents about help with my issue, but I think that they think it’s not as big of a deal as I tell them it is. Probably because we use the same doctor and they have never had any problems with him. But, their health issues are different from mine. Neither of my parents have scoliosis.

The pain you describe definitely sounds nerve-related. A full spine MRI would help a doc see what the soft tissue and spinal cord are doing in your spine. It could be a pinched nerve, or it could be something related to congenital problems. You won't know anything until you actually meet with someone who has some intelligence about scoliosis.

I appreciate your insight. I’ve always thought it was nerve related. Like I said above, my doctor apparently thought that shooting pain equals muscular spasms. I’m not a doctor, but shooting pain is usually akin to nerve problems. I’ve told my doctor several times that the medication does not solve the greater problem. He would say things like “lets try to up your dosage and have you come back in a few months”. Well, I did that until I could no longer afford to go back and now I’m in worse pain then when I started!

I do appreciate the research you’ve done for me. That’s very considerate of you! I very much appreciate your concern. That’s something only my girlfriend has provided throughout the years. It’s nice to hear from people who care!

Please keep the suggestions coming!

[LindaRacine]

Hi Jim...

My only recommendations would be to see if you can find a job that you can do, and which provides insurance, or see if you can qualify for SSDI. I'm really sorry that you're having so much pain.

Regards,
Linda

[sane333]

Fortunately, I’m working at a different job than the one I referred to in the above post. The job I’m at now is, ironically, health care research. I have been able to perform my duties 100% here and have had only a few occasions where I’m in extreme pain on the job. So, that helped a lot. I don’t think I’d be able to qualify for SSDI as I can do work that requires me to sit for most of the time. I’ve figured out that I can stretch my back over the backside of the chair periodically and that seems to keep my back from having “episodes”, for the most part anyway.

I can’t believe the concern I’ve received here already! I’ve never had anybody show any concern for my condition other than my girlfriend before. It really makes me feel better about my problems. Thanks guys!

[angelic00]

Iam going through all the same things i am 24 years old and found out about my scoliosis about 4 months ago i went to see a doctor because of back pain and alot of it,my doctor told me i couldnt do my job anymore so i had to quit well its been 4 months with no income no nothing and my doctor wont help me and i supposably still cant go back to work until he gives me the ok,iam stuck at home in constant pain and my doctor wont tell me what i can or should be doing.so iam lost and confused and dont know what i can or should do.When my doctor didnt tell me anything i went to the internet to find out what i can then i told my doctor what i found out about certain things like the degree of my curve and he told me not to worry about it.

well thanks for listening to me ramble on

[angelic00]

oh yeah and i also have 4 fused lumbar discs and narrowing of the spine to add to my pain and concern.