Side affects of spinal fusion surgery

[Edith]

My daughter was 16 when she had her spinal fusion surgery in 2001. Since then, she has experienced a lot of things--things that have taken a lot of getting used to. The greatest challenge for her seems to be that her reflex to sudden noises is acute. If anyone out there has had similar experiences, please reply. My daughter is now 18. She has a hard time appreciating the benefits of a straighter spine because of what she calls her "jumping" problem. It makes her very self conscious at school. I will be hoping to hear from some of you. Leigh Ann is the love of her dad's and my lives. We really are searching for answers to this puzzle.

[danigirlfor00]

I had my first scoliosis surgery when i was 15 in 1996, at the time i too had an extremely acute sensitivity toward noise. To this day i still do not like "loud" noises as they hurt.

I wish your daughter the best.

[~Jessica*]

Please sign her up. She needs help if she's suffering emotional damage too and if anything she needs a long chat with us - someone like herself. I find that I feel better when I spill my feelings to someone who understands my pain. I am also self conscious about my body and i'm usually a happy chappy but I do tend to fall into a depressed state (usually at school too, which annoys my friends).

If she has MSN please tell her to send a message to:
shrimpo_87@hotmail.com

If you would like you can visit my Scoliosis Support website at
http://www.freewebs.com/scoliosis/
Be sure to keep checking up on it because at the moment it's under construction.

Ta, Bye

[Edith]

Thank you very much for answering!! Do you have suggestions for coping with the jumpiness? We discussed it with Leigh Ann's orthopedic surgeon. He was not helpful. We talked to our general practitioner. She prescribed a medication that did not agree with Leigh Ann. So, we are still searching.... I really appreciate this forum. When we started this journey two and a half years ago, we asked the doctor our many questions. We concluded with the request to obtain the name and phone number of a teen who'd been through the operation. He told us that we could have that info. We were to see his nurse. However, when we asked the nurse, she said, "Oh, no, we can't do that because of the Privacy Law." So, Leigh Ann has gone through all these experiences with her family's support. But, I want her to be able to talk with others who've been in the same circumstances. So, please continue to write when you can.
Thanks very much!! Edith

[LindaRacine]

Hi Edith...

Your doctor's nurse was misinformed or mistaken. Whenever my doctor's office wants to use me as a referral, they call me and ask if it's OK to give out my info. I'm sorry that you had to go through it all without help from someone who had been through it before.

I don't have any suggestions for you in regard to your daughter's jumpiness. I've never heard anyone describe that before. Have you thought about taking her to a neurologist? I'm thinking that there might be some sort of syndrome (perhaps even something caused by implants or anesthesia) that might explain the problem.

Good luck.

Regards,
Linda

[~Jessica*]

Could you describe the "jumpiness" in more detail for me please. I'm sorry, i don't get it fully. Is she just sensitive to loud noises, does the frequency of the noice hurt her ears or do they scare her easily?

Also, if you want, you could tell her to visit this Scoliosis Forum (http://scoliosis.proboards19.com). I'm on there every weekend and public holiday. I'd be more than happy to talk to her because I too didn't have someone that I could relate to.

:)

[jfuller]

It sounds like a separate problem to me. My scoliosis "brother" and I just went to the Hoobastank concert. The drums and guitars didn't bother us at all.

[s&d]

This may or may not be helpful, because I haven't had scoliosis surgery (my son has scoliosis), but I have had that same response to sudden noises. In my case it's related to Post Traumatic Stress Disorder (I really hate that term). PTSD can be connected with any sort of physical or emotional trauma and I would say that spinal surgery would be considered traumatic. Especially in the middle of the teen years. Teenagers are particularly susceptible - it's not an emotional weakness - it really has to do with the brain's physical, chemical response to trauma. Teens' brains, along with the rest of their bodies, are going through a period of rapid change and it leaves them vulnerable. It is physical, but much of the treament can be psychological in nature. The event that triggered PTSD was in my teen years and certain responses continued for quite a long time until I was able to "talk it out"...since then it has come back during times of extreme stress, but I know what it is and it eventually goes away.

This could be the case, but the nervous system is so complex, I wouldn't rule out some actual, tangible connection with the surgery. It's so invasive and deals so closely with the spinal cord and nerves, I'm sure that there's potential for nerves to get "irritable" - in the actual physical sense.

Good luck, I hope things improve quickly.

[Edith]

Originally posted by LindaRacine
Hi Edith...

Your doctor's nurse was misinformed or mistaken. Whenever my doctor's office wants to use me as a referral, they call me and ask if it's OK to give out my info. I'm sorry that you had to go through it all without help from someone who had been through it before.

I don't have any suggestions for you in regard to your daughter's jumpiness. I've never heard anyone describe that before. Have you thought about taking her to a neurologist? I'm thinking that there might be some sort of syndrome (perhaps even something caused by implants or anesthesia) that might explain the problem.

Good luck.

Regards,
Linda

Hi, Linda! Thank you for all the information! I am following up on your suggestion to see a neurologist with Leigh Ann. We were not able to get an appointment until next month. Also, I am considering writing a letter to her orthopedic specialist to ask him to pass our name and contact info to a teen who has been through the surgery. In my heart, I know that would be so helpful to Leigh Ann. And, maybe, he would not object to giving our info to someone else instead of opening his file to give us info about someone else. I don't know; but, I think I'll try. I just wish we had an active scoliosis chapter here! I have even considered calling some area high schools to ask if they know of a student or two who has had the surgery. We live in a large city. One doctor told me that spinal fusion surgery is done very frequently. So, there must be some teens somewhere around here!! Anyway, thank you again!

[Edith]

Originally posted by s&d
This may or may not be helpful, because I haven't had scoliosis surgery (my son has scoliosis), but I have had that same response to sudden noises. In my case it's related to Post Traumatic Stress Disorder (I really hate that term). PTSD can be connected with any sort of physical or emotional trauma and I would say that spinal surgery would be considered traumatic. Especially in the middle of the teen years. Teenagers are particularly susceptible - it's not an emotional weakness - it really has to do with the brain's physical, chemical response to trauma. Teens' brains, along with the rest of their bodies, are going through a period of rapid change and it leaves them vulnerable. It is physical, but much of the treament can be psychological in nature. The event that triggered PTSD was in my teen years and certain responses continued for quite a long time until I was able to "talk it out"...since then it has come back during times of extreme stress, but I know what it is and it eventually goes away.

This could be the case, but the nervous system is so complex, I wouldn't rule out some actual, tangible connection with the surgery. It's so invasive and deals so closely with the spinal cord and nerves, I'm sure that there's potential for nerves to get "irritable" - in the actual physical sense.

Good luck, I hope things improve quickly.

Hi, S&D! I just want to let you know that I appreciate the information you shared. Our nervous systems are complex, as you said. I have arranged for Leigh Ann to see a neurologist. Maybe he will be able to give us a good diagnosis and set us in a good direction to help Leigh Ann cope with this reaction to sudden loud sounds. I wish you and your son all the best!

[dilela]

My child was recently diagnosed with scoliosis. Her lumbar curve is 52 degrees.

My daughter is almost 14 and also has Down syndrome. On September 22, 2003 she was admitted to the hospital (her very first visit to a hosiptal since her birth) for severe abdominal pain. Prior to admission, when presented to the emergency room, she had x-rays that clearly showed her spine - no scoliosis. They were of course looking for something that could have caused the pain, such as a bowel obstruction, or whatever. She had further studies after admission - all of which showed the spine in addition to the bowels and none of which showed scoliosis. Three weeks later when she retured for a follow up visit, she was still in pain. Another x-ray was taken and this time, she had fairly severe scoliosis. I don't know about anyone else, but I think this is pretty rapid onset.

Another very strange thing about her case is this. When doing the Adam's bend prior to doing a full routine of yoga, the bend is very prominent. Afterward for a few hours, it is almost unnoticeable.

Because she has Down syndrome, her muscle and joint composition and integrity varies from the non-DS patient. I have no idea why 30 minutes of yoga reduces her curves to almost nothing for a length of time - but it does. It could well be due to the laxity of her joints and hypotonia.

The orthopaedist we saw of course did x-ray studies. He also did an MRI. And of course he suggested immediate surgery. Although he is a well respected doctor, his method was not very positive. I am a biochemist. He felt very comfortable "not" explaining anything to me. As a biochemist, I would be very quick with questions had the problem involved something in my own field. But I do know a thing about scoliosis.

I was very, very disappointed in this doctor. I was extremely upset that he did not discuss any of the risks of scoliosis surgery. I am not comfortable with achieving only a 20% or less degree of correction and I am not comfortable with putting my daughter through this procedure.

I am very very anxious to speak to other parents who may be having second thoughts about surgery. I can't get straight answers out of her doctor. Maybe some of you can help.

I look forward to any replies.

Dixie

[Bonnie]

Hi Dixie,
I know just how you feel! My daughter was diagnosed with scoliosis back in may. She has a dbl curve of 50 and 40 when the xrays were 1st taken. She is refusing surgery and they will not do it unless she somewhat cooperates. I too do not like the sound of surgery. For now we are doing an alternative and it has reduced the bottom curve by 6 degrees. We have not taken x rays of the top curve yet. I would love to talk with you cause most on here seem to be going for the surgery. We are not. Not in the very near future anyway. Not until my daughter breaks out of this phobia or if the curves worsen. I am scared to death of her having it because if anything went wrong she would never forgive me. My daughter just turned 14 in Nov. You can contact me on here or email me at Bonnie9557@aol.com. I would love to talk with you! Thanks! Bonnie

[flashcrimson]

I know of 2 physiological problems that can cause the jumpiness. The first would be impingement of the vagus nerve as it exits the jugular foramena of the skull. The vagus nerve controls the parasympathetic nervous system, and if there's any impingment, it can create a hypersympathetic effect (jumpiness, stressed out, hypervigilant, etc.).

The second is a misalignment of the pubis synthesis. (Where the two sides of the hips meet in front, just above the genital region.) If one hip is higher than the other or one hip is torqued, it can create a pull on the pubis synthesis. This constantly sends the message that you're not on safe ground and can create the hypersympathetic state.

In either case I would recommend craniosacral therapy. I've posted more details on this therapy on a couple of other threads, if you want to read more about it. Or email me and I'll send more details. Contact www.upledger.com for more info and finding a practitioner in your area. Best of luck to your daughter!

[flashcrimson]

I also wanted to mention that s&d's post on Post Traumatic Stress Disorder is a very good one. Oftentimes one of the reasons that PTSD manifests is due to problems with the vagus nerve or the pubis symphysis. (yes, I wrote the wrong word in my earlier post. Sorry, it's 1:30 am and I'm up way past my bedtime.) Your daughter's jumpiness sounds very much like a PTSD symptom.

Again, Craniosacral Therapy is very effective. In fact, the Upledger Institute used to work with Vietnam Vets with severe PTSD, and got good results with them. Her surgery could have tightened a pull in the meningeal membranes, which could lead to vagus nerve impingement.

Hope this is helpful. G' night!

[Blondie]

Dear Edith, I'm sorry you haven't gotten much support after your dtr's surgery. This is a tough thing to go through it alone! My dtr is almost 22, and just got her spinal fusion with rods and clips. She had a lumbar and a thoracic curve, and her degrees were about 50. It's only been 3 1/2 weeks since her sx, and although she had several complications post-op with her lungs and tachycardia, she is doing fairly well now. Luckly, her surgeon introduced us to one of his patients who had just gotten her sx done back in August, and they have been very supportive through the early days post-op, and have given us the much needed encouragement and information (that Drs won't do). Just to have someone to be able to ask questions means a lot when one is scared or confused! I can totally relate with how clueless these kids are about the importance of good posture, and how stressful it is for a mother to see your own child's back twisting, and on top of that your child gets mad at you for trying to help them improve the situation. My dtr still walks "crooked" half of the time, and it breaks my heart to see that (after having gone through so much to correct the same). For what I've been told, this is a common problem. God bless and hung in there...

[Blondie]

Dear Dixie, I totally agree with you about having second thoghts about a surgery that can only provide 20% correction! I say find a different surgeon. It sounds like the one you've been going to has little bedside manners and clearly doesn't like to communicate with his patients. My dtr just had her spinal fusion 3 1/2 wks ago and she had very serious cardio-pulmonary complications that landed us 8 days in PCU. Every surgical intervention has very high risks, not to mention being in the hospital, period...(and I'm saying this because as an Rn I know how many things can and will go wrong by just being hospitalized). So, if you're having that feeling in the pitt of your stomach...listen to it please, and either find another surgeon or find out about alternative methods to surgery. I hate to sound negative about surgery, but 20% correction is nothing to warrant the risk, in my opinion. Good luck with whatever you choose to do and if you go with the surgery option, stay with your child the whole time she is hospitalized, and let everyone know you will be keeping track of every thing being done (I kept a log and demanded intelligent answers) I know if it hadn't been for this, my dtr might not have survived her post-op complications.

[Alison]

Hi Dixie

Ummm... I don't quite understand all the issues surrounding health insurance and what docs can and can't be seen under particular insurance. But would it be possible for you to go another doctor, one that you like, trust and has good bedside manner; because I agree, they may have really good qualifications, but if they don't have good bedside manner and you trust them, then its not a good relationship. My suggestion would be to try and find a scoli specialist that has experience in treating children with Down Syndrome and any other issues related to the Down Syndrome that your daughter may have.

Hi Dixie and Blondie

I'm sorry, I have to kind of disagree with you that surgery that only achieves a 20 percent correction is not worth the risk. I can understand if there is other issues involved such as Downs Syndrome, Heart Conditions, CP etc, because sometimes it is simply not worth the risk with all the other stuff. But I can't understand it for "standard cases" and "special cases" to a point.

Sometimes spinal fusion surgery can only achieve very little correction, largely due to little flexibility being left in the spine, and it simply can't be manipulated into that much correction. But the surgery often needs to be done for other reasons; such as to stop the curve progressing and to hold what's there; reduce the risks of "other issues" such as organ squish as curves increase; and if the curves get in a certain state, they can be very difficult to operate on. .

Here's my story for an example. My fusion was done when I was 13 from T2 to T11, and only a five degree correction (at most) was made, and that was better than we'd hoped for, it was essentially a holding fusion, to hold what was there. I still have curves in my back that are in the high sixties and high fifties/low sixties and will do so for the rest of my life. I would still pass all the tests for diagnosing scoliosis :-) And realistically me wearing a brace for 9 years acheived very little, except to hold what was there and play a waiting game until I hit puberty. My spine was very stiff with very little flexibility to achieve correction, and we were very lucky to achieve the correction that we did. But netherless we chose to go ahead with the surgery for many reasons; it had to be done because there was quite a bit of rotation in my spine and in time would have continued to rotate and effect my organs and general wellbeing. And my spine was increasing in curvature with no signs of decreasing.

Ultimately, surgery is a personal choice. I know my parents thought about it long and hard before it was done, and they were considering my long term health as part of the decision. I am not trying to say whether surgery is good or bad, but simply offering a different point of view.

I wish you all the best with your decision

Alison