Pain 2 years post-surgery

[scoliosis-mom]

My teenage daughter had anterior/posterior spinal fusion for a 64 degree thoracic curve 2 years ago. Since she has recovered, she has had daily back pain and sometimes rib and chest pain. She has been taking Bextra for 2 years and can't cope without it. She is in pain every single day. All x-rays are normal and the spine has healed well.

Her surgeon explained that the muscles have a very long memory and are most likely the cause of the pain.

I've taken her to several doctors about the pain, which can keep her in bed for days. Some have suggested physical therapy but we've been unable to find someone who specializes in scoliosis kids.

Anyone else have a similar case or any ideas?

[lrmb]

Hi! I have not had fusion surgery, but I have had chronic pain (low back, disk degeneration). Bextra helped me slightly, but what really helped was a very low dose of anti-depressants (Elavil). You might try asking your MD about this option, if only as an alternative to the Bextra for a while.

Something that has also helped me with chronic pain has been Rolfing, although this is definitely an "alternative" therapy; it works with releasing tissue and I think generally helping release muscle, but you would probably have to consult a practitioner to find out whether they thought it could help your daughter.

All the very best finding a solution. Nobody should have to live with pain! I am sure that eventually you will find a means to help your daughter.
Laura

[LindaRacine]

Scoliosis Mom...

Yes. Perhaps it's time to get another opinion. Where are you located, and who did your daughter's surgery?

--Linda

[scoliosis-mom]

Laura and Linda,

Thanks for the suggestions. We are the in the Washington, D.C. area (Montgomery County).

My daughter went through all the pre-surgery treatments - bracing, etc. We even tried STRS in Baton Rouge - the Copes brace. The curve progressed from 10 degrees to 64 degrees in about 4 years.

When it came to surgery, we visited every local hospital in the D.C. area as well as Children's Hospital and Johns Hopkins in Baltimore.

We selected Dr. Dryer at NYU Medical Center for the surgery. Since it was anterior/posterior surgery which takes about 10 hours, many surgeons told us they didn't have the experience to perform the operation (Children's, etc).

Dr. Dryer at NYU was phenomenal and I would highly recommend him. He straightened the main curve from 64 degrees to practically 0 degrees. No other surgeon thought they could get the curve under 20 degrees. I know that he has corrected children from other countries with curves over 100 degrees. He is also a very caring physician with an excellent rapport with teenagers.

She is perfectly straight in appearance, although she does have one rod pushing against the skin. We may revisit that later.

We're heading back to NYU Medical Center for a checkup in 3 weeks, so I will ask about additional pain options.

We visited a local orthopaedic surgeon who has been seeing my daughter locally for follow-ups, and he recommended physical therapy but we can't locate a therapist with experience on severe scoliosis cases.

Anyone know of a scoliosis physical therapist in Maryland - near D.C?

Thanks again.

Susan

[cub2007]

hey sry to hear that

hey i cant help withthe therapist part, but i had the same surgery! i guess i a m lucky because i dont have any pain. my curve was 57 and i now about 0. i'm really sry that her pain is that bad. i would love to speak to her. and i hope her pain goes away!

[susannajon]

Hi there,

I have to tell you, as a mom who's daughter is facing surgery in 2 days, this is one of my greatest fears. My heart goes out to you, and I wish I had a magic pill to offer that would take away her pain forever. Just a couple of ideas: I have a family member who suffers with chronic pain, and she has had good luck working with a pain management specialist.

Since you had your surgery at NYU, have you considered seeing a pain management specialist there? I believe thay have a very well respected program. Here's the link:

http://www.med.nyu.edu/PainManagement/

Also, I know you had a bad experience at Hopkins, but the pain managemaent clinic there is also very well known. My sister had good luck there. Here's a link for it:

http://www.hopkinsmedicine.org/jhhpsychiatry/pain.htm

Hugs to you and your daughter, and I hope you find a solution.

Susanna

[scoliosis-mom]

Susanna,

Thanks for the links. You must have ESP. I saw Dr. Gharibo at NYU Medical Center on the "Today" show about 3 weeks ago. He's in charge of Pain Management at NYU.

I called his office yesterday, but so far I've just gotten voice mail and I would really like to talk to his assistant before making an appointment.

Since we'll be at NYU at the end of this month anyway, it might be a good time for them to evaluate my daughter.

We spent Saturday at the local emergency room. Her pain kept her in bed all of last week and they put her back on Percoset and gave her a pain shot. We had 6 x-rays taken yesterday by a local spine specialist (nice doctor, but not a pain expert).

The good news is that all the rods and screws are in place and the spine looks the same as it did last April. He called this pain a "flare up", but she has pain every day - this week was just particularly bad.

Don't be too concerned about future pain for your daughter. From what I've read, it's unusual for the kids to have daily pain years after surgery. I just need to keep looking for a solution for my baby (she's 18, but she's my baby )

Thanks also for the link to Hopkins. It's much closer for us (about 45 minutes), so I'll take a look at that, too.

We'll all be thinking about you and your daughter tomorrow. Fill us in when you get back

Susan

[susannajon]

Susan,

Thanks for your well wishes, and good luck. I totally understand. I am still my mother's "baby" although I'm 39, and I always will be!

Susanna

[nikyergen]

It is so nice to hear that no matter how old our daughters are they are still our "baby girls." I'm 44 and still "daddy's baby girl."

Susan, I hope you have some luck at a pain management clinic. I used to work with a man that used a pain management clinic. He had chronic pain and is in his 50's. He now were's a morphine pump 24/7 for his pain management. He has some severe back problems and has had several surgeries to no avail. He can now get around his ranch and do the things he needs to do. He's still pretty hard on his back, which I am sure doesn't help. But, at least he can function now. I am hoping that your daughter can get something simple to help her with her back pain.

We are hoping that our daughter gets through her surgery and can go back to playing her favorite sport, basketball, next year.

Keep us posted on what you find out and if your daughter finds pain relief.

'til later,
Nikki

[sweetiepie3]

Scoliosis Pain

I have had scoliosis surgery. I will be 2 years recovered in July. I have also experienced much back pain and would like to know what you have come up with. Has physical therapy helped??? My doctor has said that down the line I may want to consider a second surgery (removal of the rods) but I don't want to go that route. If you have any information I would love to hear from you!!!!

[scoliosis-mom]

Sweetiepie3,

My daughter has had a rough couple of weeks - she missed about 8 days of school and we ended up in the emergency room last weekend because of the chronic back pain. She's been on Percoset for about 8 days, but we all know she can't stay on narcotics.

Technically, her new x-rays showed absolutely nothing wrong. But, her pain is real and I haven't found a doctor with a satisfactory explanation yet.

I've called the Pain Management Centers at NYU Medical Center and at Johns Hopkins. They both need referrals from her surgeon before we make an appointment.

We're heading to NYU in 2 weeks for her annual checkup. I'll let you know what we find out.

The local spine surgeon we saw this week said physical therapy was probably NOT a good idea because she has extensive rods and screws (T1-L2) and is very thin. You can feel the hardware through her back. He felt physical therapy would be too rough on her and not provide any relief. On the other hand, another spine surgeon thought it might help when we saw him in December (oh well.....)

Over the last 2 years, she seems to have pain just about every day - but, she has learned to tolerate it. This recent episode has been a massive flare-up. Unfortunately, even with tolerating some pain every day, I can see chronic fatigue in just having to deal with it. I worry she'll never be able to work a full day. School is 6 hours and she has to sleep for 2-3 hours after school every day.

Thanks for your concern. I'll let you know if we find any solution.

Susan

[susannajon]

Susan,

Maybe you can call your surgeon now rather than wait two weeks to see him for the referral? Perhaps you can get an appointment with the pain management team at the same time as you see your surgeon for the follow up, or get an appointment at Hopkins sooner? It can take a while to get in, and I hate to see your poor baby suffer any longer than she has to.

My thoughts and prayers go out to you.

Susanna

[sweetiepie3]

Thanks for the info. Maybe my story will help you. I had my back surgery when I was 13 over the summer. My rods go from T3 to L2 and I had a post terrior fusion. I was doing great and returned to school on time. Then it was like something happened I got this real bad back pain at school and it was only on the right side of my back. I thought I was going to pass out from it. I went home and we called my doctor right away. He told us just to take the pain meds. They knocked me out right away (which is why I think your daughter is so tired). I eventually felt better and managed to get my meds down to regular advil. We took new x-rays and everything seemed fine. I am so sick of what I call back attacks. The last time I went to the doctor he told us something interesting. He said that the rods may be to prominant for my body to handle and that I may be going through a rejection which is why I get pain sometimes. Your daughter may be going through rejection and may need to get the hardware removed. Keep me posted!!!!!

[scoliosis-mom]

Susanna,

Everyone on this forum is just terrific - and especially you!

Your concern for my daughter when your own daughter is still in the hospital is just amazing

Of course, I was thinking about getting a referral for my daughter before we go to New York, but it's incredibly difficult to get these guys on the phone. The NYU pain management group actually can't see her when we're in New York - that was my first idea.

I've since gotten a few more local referrals for pain management clinics near Washington, D.C.

I think I will try to reach her surgeon this week and see if we can get the referral started. I thought he might want to see her before we get the okay, but it's worth a try.

I'm so glad to hear that your daughter is doing better. I forgot about the oxygen. My daughter used it the entire 10 days, even though the nursing staff told me she really didn't need it. It was comforting to her and seemed to make her feel better. She also has asthma, but it wasn't really acting up after the 3rd day post-op.

We're all thinking about your daughter and hope you can go home soon.

Warm wishes,

Susan

[susannajon]

Susan, Sounds like you have a good plan. I know how hard it is to get those docs on the phone. I will have averything crossed for you. It feels good to worry about someone other than my kid, if only for a few minutes. I'll be thinking about you guys.

Susanna