1year post op and extreme pain

[Christine84]

Hello everyone! It seems like it has been quite some time since I was last on here. I hope everyone is doing well. I am wondering if anyone might have some advice, or possibly experienced something similar to my situation....

My one year post-op will be on July 10th. The main reason why I went through with surgery was to reduce the pain I was experiencing from the scoliosis. Well, this year of recovery has been very difficult pain wise. I stopped taking pain meds in September. The pain has been so dibilitating this whole year, but I felt like I needed to wait it out until my one year mark...thinking it was just surgery related. I am unable to do ANYTHING without being in pain. The only thing that helps is laying down and even that doesn't seem to help a whole lot. This has just been so depressing because I am in so much more pain than I ever was before surgery. I am only 23 and I truly can't imagine living the rest of my life like this. I went in to see my surgeon today and his response was "well, the hardward is in place, it looks like a good fusion, and there really isn't anything else we can do." He had just suggested taking anti inflammatory meds. I feel so hopeless right now. Does anyone have advice on what I should do? Thanks.

Christine

[Pooka1]

YIKES!

Maybe a neurosurgeon and a pain specialist???

You have a relativcely short fusion. I don't understand why you have such pain a year out.

I read on spinekids where some kids developed complex regional pain syndrome. One is going, or will go, to rehab for it. Maybe you have that?

When (not if!) you find and correct the cause of the pain, could you please post it?

Thanks and good luck.

ETA: http://www.mayoclinic.com/health/com...ndrome/DS00265

[Christine84]

Pooka,

Thank you for responding so quickly. I am going to look into what complex regional pain syndrom is. I just had to respond because I see that you are from NC. I am actually moving there for grad school in august. I can't wait to experience NC!

[Singer]

Christine -- do you have nerve pain (stinging, burning) or muscle pain (stiffness, soreness that goes away when you lie down)? If it's muscle pain, physical therapy can help a lot. But if you still have nerve pain at this point, I'd be a bit worried.

I'm at the one-year mark also and I still have discomfort -- sometimes a lot --but I am confident that it will continue to ease with time. Also, I am completely comfortable lying down or sitting.

[Christine84]

Chris,

Sometimes it feels as if it is burning, but it is very hard to describe the pain. It is deep and very achy, sometimes sharp. Once mid-day hits, it hurts even when I take a deep breath. My skin is also pretty sensitive to the touch. It feels like my muscles just can't hold my back up without something supporting it (bed/chair) The most severe pain is on my right side from mid back up.

I just hope I find some releif because it is really just too much pain for me to deal with.

[Pooka1]

Pooka,

Thank you for responding so quickly. I am going to look into what complex regional pain syndrome is. I just had to respond because I see that you are from NC. I am actually moving there for grad school in august. I can't wait to experience NC!

It just seems very unusual that you should be having so much pain this far out at your age and fusion length.

If it is CRPS, you need to find that out soon because time is of the essence apparently.

In re NC, I'm not from here. We moved here in 2006. I'm from NYC.

This place (ETA: meaning the piedmont and coastal plain, not the mountains) is a hot house for a large part of the year and you are moving here at the balmiest time of year. But there are a bunch of damn fine schools and grad schools here, I must say. NC State has one of the 23 vet schools in the country and even though it is one of the newest, it is ranked near the top. There's an equine lameness specialist there who absolutely SAVED my horse from becoming a pasture ornament. My dream is that both my twin girls get into Duke. My nightmare is figuring out how to pay for that.

Sorry to go on but this is a great place for schools.

My doctoral adviser got his doctorate from UNC-Chapel Hill so I can say that is a great grad school.

Good luck solving the pain issue and in grad school!

Best regards,
sharon

[bsprings]

Christine,
I would seek another opinion if I were you. I just can't believe that your pain is normal-maybe a different doctor would have some insight. Best of luck Christine!
Cathie

[Linda W]

Hang in there!

Hi Christine,

Sorry to hear that the last year has been so painful for you. The others who have already posted have given you excellent suggestions: determining the nature of your pain, getting a second opinion, trying physical therapy or acupuncture and finding a pain management specialist. Did you wear any type of brace post op? Are you at least able to get out for a daily walk? Do your best to keep your spirits up and do not hesitate to ask for help if you need it.

Hang in there,
Linda

[DebbieM]

I am so sorry that you are going through this. Pain can be very debilitating and depressing as we all know. As bsprings suggested about going to see another Dr. I am with her all the way on that. Another scoli specialist would be best. I would definately not hesitate on that. There's no reason you should be in that much pain. I know that feeling of your muscles not being able to hold up your back and the need to lay or sit down. I had that pain pre-op.
Please let us know if you go see another Dr.
I wish you all the best and try to be positive as I feel in my heart that there is hope for resolving your pain.

[Christine84]

Thank you for all of the support. It is very helpful to hear that it is ok to get a second opinion. It is also encouraging to hear that many of you believe that I can resolve this pain. My surgeon did not require a brace after surgery. I did, however, spend months in physical therapy. It helped me with confidence and learning how to bend and twist agian...but there wasn't much relief with the pain. I am definitely able to take walks which I have been trying to do. Because I would like to continue living my life I have just been enduring the pain and participating in normal activites (really what other choice do I have, unless I decided to spend all my days in bed?).

I am not sure if I mentioned this earlier but my surgeon looked at me and said "scoliosis hurts"....all I could think was ok, and I am just supposed to accept that?!

What would be the best place to start looking for qualified doctors/second opinions?

Thank you again to everyone. You are all so caring!

Christine