PDA

View Full Version : Looking for ideas please!



heatherf
02-08-2012, 08:15 PM
I was diagnosed with congenital scoliosis (a hemivertabrae) at a very young age (really not sure) and had two surgeries at ages 7 and 9 to do a spinal fusion which involved two rods and some bone graft work. I was so young I really didn't (and still don't) know all of the details, but they took bone grafts from my left hip in order to do the rods. I am now 29 and have had herniated discs off and on for the last 5 years. I recently had another shot, and it has helped, but the basic message I got from the dr was that it would only help so much because 1)the pain in your middle back comes from the curve (by the way we wouldn't do rods now, but that was what they did then and it served it's purpose and you're lucky you're not more 'deformed' - his words, not mine) and 2)the pain in your lower left back comes from where they did the bone graft (by the way we don't do that anymore either because of the residual pain). SO I can live with it, have a shot, or have a surgery. Amazingly, I did like the dr okay because he did help, I just didn't like what or how he told me. He didn't recommend surgery yet and I don't want it. The shot did help about as much as I expected. I really don't think more would help though because the remaining pain is not on the right where my herniated disc was. However, I can't remember a pain-free day. I'm lucky if I get a day of 3-4 on a pain scale. Are there any suggestions or things to maybe ask my doc in terms of dealing with the left hip/back pain as well as the muscle pain on my middle/right side? I'm getting ready to start at a rehab/fitness center; any suggestions of what has worked in terms of this? Anything would be greatly appreciated; thank you!

rohrer01
02-08-2012, 08:45 PM
Welcome, Heatherf!

I don't really have any advice to offer except to ask you what kind of doctor you were seeing. I would recommend seeing a scoliosis specialist and a pain specialist and see what they had to say. I know the pain guys can come up with treatments that I myself don't know about. I hate to hear people living in constant pain. It's sad. I hope you can find someone who can give you some relief. I know a pain doctor offered me an intrathecal pump that would put morphine directly into my spinal sac and bathe the whole spinal cord in a small amount of morphine and/or muscle relaxant. But as you know, every surgery has its risks. I opted NOT to do that for myself. I don't know the condition of your spine, how bad your curve is or anything. I would hate to recommend anything to anyone, really, as I don't want to be responsible for someone making a choice that is not suited for them. That's about all I can say except for what I do. I get lumbar epidurals and trigger point injections along with oral meds. But my situation isn't your situation. So my best advice would be to see those two kinds of doctors that I mentioned. I wish you all the best in your endeavors.

Take Care,
Rohrer01

heatherf
02-08-2012, 08:58 PM
Actually it was a scoliosis specialist who then sent me to a pain management place for the shot. His words were harsher than necessary, of course, but I wasn't upset about having gone to him. He just told me a lot of things I didn't want to hear. It had just never been put so blunty before. I know I am very lucky because had they not done the surgeries they did at the time, I would not have the life I do now. This is terrible to say, but I don't even know the extent of my curves. I only know that it was very large curve and they would've done surgery even sooner than seven years old had I not had heart surgeries that needed to be done first. Overall, it is just hard knowing that at 29 I know the pain may not get any better. My hope is to get dedicated to a physical therapy/exercise regimen that can help me from looking at more serious disability in the future. I'm just not real sure what to do. Or if there's a shot for the hip pain maybe? Most oral meds that they've given me really do nothing. So we're going with doing whatever I can to be stronger and hopefully in less pain and getting the shots when need be for the herniated discs. I certainly hope that the injections and epidurals are helping you with your own situation. And thank you for your help and thoughts!

Take care-

rohrer01
02-08-2012, 10:35 PM
For me, some things help. But it is temporary and I have to keep going back. Is there some way that the nerve root can be decompressed to relieve the pain in your hip and leg? I, too, have been battling near constant pain since I was about your age. Yet, I don't have the serious problems that you do. My pain doctor told me that with the amount of pathology that I have I will always be on narcotics. That really made me mad! There have been times when I was able to get off of them for periods of time, but it always comes back. I'm 43 now and don't know what my own future holds as to pain. Like you, all I want is relief. It seems when I get one area feeling better, another area hurts. Some doctors say it isn't related to my scoliosis and some say it is. If you want to hear more about my story, look under the thread "I have some imaging CD's" in the non-surgical area of the forum. I wish you all the best!

Rohrer01

heatherf
02-10-2012, 01:00 PM
Thank you very much for the support. It has been a very trying time and has made me very mad and upset to hear that it's just going to be that way. Although I function very well, and could be much, much worse, it is very upsetting to hear your six-year-old very nonchalantly say 'you shouldn't do that, you have a disability'. She was very accepting of it, but I found it hard to swallow because neither my heart or back problems have ever kept me from doing that much and it was an eye-opener as to how much it is affecting my life. As far as I have been told, he made the left hip pain sound less like a nerve problem and more like a residual ache problem from where they did the bone graft. Almost like that of someone with pins in their ankle always having some pain after. I hope that makes sense. But I completely understand when you say that it seems you can never get the pain to go away and that it starts hurting elsewhere. I may have to look yet again for a different dr because he is very far from home and insists that I be seen down there for the shots/etc so that he can be more involved and know they're being done a certain way. Unfortunately, I live in a very rural area so finding someone is easier said than done. But we'll keep looking :-)

I will be sure to read your other post. Again, I really appreciate your words and help.
Take care!

rohrer01
02-10-2012, 01:14 PM
Heather,
If it makes you feel any better, my family is constantly on me not to do this or that or "you'll pay for it later!" Then its the "your not getting any sympathy from me if you hurt yourself" bit. I do what I feel I am capable of at the time. If I "pay" for it later, I deal with it. I'm not looking for sympathy from them, anyway. I just want to live a normal life. Having any physical restrictions is very frustrating to me until I think about those that have it WAY worse than me. Then I'm pretty thankful. But I understand the frustration you felt when your seven year old made that statement. Keep plugging away. I'm sure you'll get resolution somehow. That's how I feel about myself anyway. I vent my frustrations here instead of on them. It's been a good place for me to come and learn and know I'm not alone.

Take Care!

heatherf
02-10-2012, 02:48 PM
Very true! I have been very grateful to have found this forum. My husband and two children (12 and 6) are wonderfully supportive, and I am very lucky on many counts. All I ever wanted going through surgery after surgery was 'normal', and my family and teaching career are my 'normal'. (As normal as my crazy family can be :-) .) But I truly believe that I was allowed to make it to this point with few limitations just so I could have them. I don't like asking my 12-yr-old son to carry something for me that I think I should be able to, but I'm trying to be smart about it and get over it. And I've never been one to say that much about my health and pain, but I'm trying to do it a little more because I think it's better for me. I hate the memories I have of drs, hospitals, etc, so I've never said much, but I'm trying to be a grownup about it now :-) I was so bad that none of my coworkers even know I had health issues and I probably wouldn't have gone in for my last valve replacement five years ago had I not had my family to think about. But as I said, I'm trying to be a grownup about it, so I guess it's good that I've found this place to talk about it. I don't like it that other people have to go through the same things because I wouldn't want anyone to be in pain and go through the things I see here, but it is nice to know you're not alone in some of your frustrations. So thanks for listening and sharing.

Thanks, and I wish you all the best as well!