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 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]

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

[scoliosis-mom]

Hi all,

Just wanted to give everyone an update on our latest trip/visit to NYU Medical Center.

After 2 emergency room visits and 2 local spine surgeon visits in March, we finally seem to have a satisfactory answer from my daughter's NYU surgeon on the source of her pain.

(It's amazing to me that only certain surgeons have the skill to diagnose these things - the local spine doctors we saw in Maryland were completely vague).

In New York, my daughter's surgeon, pinpointed 3 areas of hardware that are irritating the surrounding muscle tissue and causing the flare-up of serious pain. Particularly, there are 2 hooks located close together that have been the main culprit. There's also a screw and the top of one rod (which is pushing through the skin and gives me goosebumps) that are also creating pain.

She's been taking Percoset off and on for a few weeks and the pain has been significantly reduced. She also takes Bextra daily (for the last 2 years).

NYU is not recommending any immediate surgery, but her surgeon did tell us that they can partially remove the offending hardware if she continues to have problems. We're going to take a wait and see attitude. I put another posting under "revision surgery" to see if anyone else has had partial hardware removed.

I think she just felt so relieved to have her surgeon validate her pain and explain it to her in clear terms (showing us on the x-rays the exact enemy hardware). She felt 95% better just leaving NYU with an answer.

He also told her that light exercise may help by conditioning the back muscles. He did NOT recommend physical therapy. He did tell us that cortisone shots to the affected muscles could be helpful.

So, we're going to take some time, do some more research and think about any future revision surgery. We would like that to be a last resort.

Hope all the girls are doing well after their March fusions :)

Take care,

Susan

[jc3]

hi susan
i just read your post and i felt so bad reading about your daughter being in so much pain. I'm sure you are so relieved to find out what was causing your daughter to have so much pain. I'm sure you are not happy that she may have to go through more surgery in the future, but for her to go on with pain and there is no cause for it would be worse. So it is good that you found out what was causing it. While reading about her being pain all the time, the first thing that came to my mind was that there was something loose in there or something. I probably read too much on the revision board and have learned that if there is alot of pain after the surgery that doesn't go away then usually it seems like there is an issue with the fusion not fusing properly and hardware coming loose and whatever.
Good luck and i hope she is doing okay.
Jennifer

[susannajon]

Hi Susan,

I am soooooo glad that they had some answers for you. It must be so wonderful for your daughter to have some validation for the pain she is feeling, and at least a course of action. Be careful with that percocet. My little one has been on the main ingredient, oxycodone, every four hours since we came home from the hospital, and now I'm trying to get her weaned. NOT fun.

My little one is making good progress, although today was a rough day. She had a touch of the stomach bug today. She couldn't keep her pain meds down, so she was sick from the stomach bug, and then sicker from withdrawal from pain meds, poor baby. Not fun throwing up 3 weeks after surgery! Then to have shakes and nausea from no pain meds on top of that! Good lesson for later in life. Addiction is no fun! She said she'd rather die than try to get off heroine after being through this experience.

Two steps forward, one step back, not uncommon for this stage of the game. Anyhow, I am so glad, again, that your little one got some validation for her pain. I know you'll take the necessary steps to research this, and get her a permanent solution.

Hugs and kisses,

[jc3]

hi susanna
i'm surprised grace is having such withdrawls already from the pain meds. Wow, it doesn't take long at all. I was really worried about that when nicole was coming off them and i think she had a little bit of a reaction, but nothing significant, she was just getting alot of headaches and at that point she really didn't need the pain meds anymore, but she felt like she wanted them she said. I did wean her slowly though so i think that helped alot, which i'm sure you are doing also. How many weeks is grace now? I think nicole was on them once a day for at night until almost going back to school.
It must have been horrible for her being sick with a stomach bug on top of recovering.
hope she is feeling better
jennifer

[spincon58]

Hi,
Sorry to hear your daughter is in so much pain...has anyone ordered an MRI???Maybe you can get it done b4 u c the surgeon.....bring the results with you....All I can say is that pain is real and going to the ER ,, well that sounds rough....well I hope they find the source of the pain...good luck

[inpain]

I just joined this forum because I am frustrated and tired of being in pain. I wanted to talk to others whom have had the Herington Rod surgery and whom may be suffering from pain like I am daily. I am grateful I got the surgery because I had an 85 degree curve and was told by two different doctors that I would not live past the age of 30 if I did not have the surgery. But, I am also tired of living in pain. I had the surgery when I was 16 years old, I am now 27 years old. I was on pain medication for the first 6 months or so of my recovery, but since that time none of the doctors I have seen will prescribe anything other than a mild muscle relaxer (Cyclobenzaprine) for the pain. The muscle relaxers do not help because the pain is not always in the muscles; I do get muscle spasms from time to time, but my constant pain that I have lived with for 11 years is in the bones (spine). I have suffered from this constant pain and it seems as if none of the doctors I have seen understand. I have developed arthritis due to the surgery so everytime the weather changes my pain is worse. I miss work due to my pain and have used up all my vacation, sick leave, and flex time due to pain that makes it unbearable to work. I cannot keep missing work, but what else am I suppose to do? I am tired of being in constant pain and I don't want to take disability at the age of 27 y/o. And I am so afraid I will end up losing my job because I miss work due to the pain. How do you explain this pain to people. No one understands except those who have had the surgery. I am submitting to this forum in the hopes that someone has advice or can help me. I just want the pain to stop!

[scoliosis-mom]

Dear InPain,

I'm so sorry for your debilitating pain. My daughter (I posted this string) has been in some form of pain (mild to excruciating) every day for 2 years since the surgery in Feb. 2003. She's fused T-1 to L-2 anterior/posterior.

She has found relief with Bextra (she can't cope without it) and her doctor has been more than willing to keep her on it for 2 years straight. She takes prescription pain narcotics for "flare-up" pain from time to time.

You mentioned that a lot of the pain seems to emulate from the spine (bones). Have you asked a doctor about Bextra or Celebrex? That might be a solution.

I'm surprised that you haven't found a more sympathetic doctor willing to help you manage the pain. My daughter's surgeon told us that cortisone shots to the afflicted muscle areas can be very helpful. (We haven't tried that yet).

And, I spoke to a physical therapist yesterday (whom I'm seeing for neck pain due to computer work 10 hours day). She told me she felt she could help my daughter by posture retraining and muscle relaxation techniques. We may give that a try.

My daughter is only 18 and is in special education. Her school has already encouraged her to apply for Social Security disability and I'm trying to talk her out of it. I understand how frightened and frustrated you must be at the prospect of not being able to work. I'm hopeful that my daughter will be able to find a suitable job where she can work without pain or fatigue.

Having employment helps your self-esteem and makes you feel a productive member of society.

Please don't get too discouraged. There are a lot of folks on this board who can relate to your feelings.

My daughter becomes easily frustrated, especially if she hears another student at school say "oh, my back is hurting". Her reaction is - "try being run over by a truck and then tell me your back is hurting". You have to keep your sense of humor ;)

I'm not sure where you're located, but I dragged my poor daughter all over Washington, D.C., Baltimore, Louisiana, and New York before we found a doctor that was right for her.

Don't give up! Let us know how you're feelng and if there's anything we can do :)

Susan

[susannajon]

Hi inpain,

There are so many people out there in your same shoes. The Harrington Rods are infamous. You have found a great board. It sounds to me like your pain has become unbearable, and it's time to find a nationally recognized revision doctor or a compassionate pain management expert. Where in the country do you live? I'll see if I know any names of top notch docs near you.

27 is way too young to be living like this. Through either pain management or revision surgery, I am confident you can be helped. My heart goes out to you!

[sweetiepie3]

The scariest thing happened to me! I was having a spasam in school and the pain started to travel down my left leg. My parents think it is a nerve. Has anyone had anything like this?????