Can anybody give some advice please?

[Megzi]

Hi
I'm new to the forum. In December my son was diagnosed with scoliosis. When he was about 14 I noticed he had a slight difference in shoulder blade height but as it was so slight I didn't think much of it. He's now 18 and at Xmas he started to complain of backache. When he lifted up his t-shirt I couldn't believe it. The difference in his shoulder blades was much more significant. I took him to the dr who diagnosed scoliosis and referred him to a surgeon in Sheffield. When we saw the surgeon and we told him of his back ache, he said scoliosis didn't cause back ache and referred him for physio. This helped slightly. However, we have been back last week to see the surgeon who was glad his pain had improved and then proceeded to tell us about surgery. He said as he has finished growing it was unlikey to get any worse although he couldn't guarantee this. He measured how much his ribs had turned which was 18. He said although he could never make him look normal he would hope to improve it and hopefully get it down to 12(?). He also said that it would be an 8 hour operation upon which he was likely to lose all his blood. He said his spinal cord would be wired to electrodes but that the problem was that after he'd put rods down the side of his spine, once he started to turn the screws if the electrodes started beeping then that would be it. He would be paralysed. He told us there was a 1 in 600 chance of this happening. As you can imagine I was shocked and very upset. To me, that is too great a risk to take, although my son says he still wants to go ahead with it.
He hates the way his back looks and I understand this completely but am just very worried in case this operation goes wrong. The dr had said that somebody has this done every day and it will go wrong for somebody. One of the things I don't understand as well is that although the dr said it doesn't cause back pain, I see that many people on this site say it does. I joined this forum in the hope that somebody can give us some advice, however small to help us make a more informed decision. Thankyou in advance.

Dawn Eastwood

[Pooka1]

Hi Dawn.

I'm sorry to hear about your son. Hearing that sends folks into a tailspin.

I see you went to a surgeon. As it seems like you may have been confused on some points, you might try going to a few more surgeons for more opinions.

As your son is 18, I am unsure if you should take him to a pediatric orthopedic surgeon or not. Maybe get opinions from both a ped and adult surgeon.

You need to find out where his curves are and what the angles are. It sounds like your son is interested in the surgery because of pain and appearance. So you need to buttonhole the surgeons on EXACTLY those issues. That is, ask what the chances are of surgery removing the pain and what improvement in appearance can be expected. The instrumentation these days can almost completely remove a rib hump as it did for my daughter and removed her pain. But I think there are some here whose pain was not improved by surgery.

Also, I think it would greatly behoove you to start reading up on scoliosis and surgical treatment. There is much to learn and I think you will feel much better and be less scared possibly if you are better informed.

Last, there is some interesting albeit HIGHLY anecdotal evidence that young adults like your son have gotten significant pain relief from wearing the Spincor brace, a flexible brace that fits well under clothing. There is a Mcleans article that recounts a young man who was helped. If you search here under Mcleans or whatever the magazine name is (Canadian), you'll find the link.

Good luck.

sharon

[Susie*Bee]

Hi Dawn! First, welcome to the forum. I'm glad you found us-- and there are many parents out there who have walked in your shoes and will have some good information for you. I'm an "older adult" who had spinal fusion surgery a year ago, so whatever I say comes from that standpoint. I do have a few suggestions, though, that cover the scoli journey in general.

The first is to be sure you have an experienced orthopaedic surgeon who specializes in scoliosis and spinal deformities. He/she should be board certified and fellowship trained in this. You can usually tell this by whether they are a member of the SRS (Scoliosis Research Society), which means that a certain percentage of their practice is devoted to scoliosis. Google the doctor-- or just read on whatever site they have their practice posted... it should give the info on education, fellowships, memberships, affiliations, etc. Experience begets expertise, if you know what I mean, and with something as serious as this surgery, you will want a specialist you can have a great deal of confidence in. This is one time when it's good to be picky and to shop around... I'm surprised that your present doctor presented the downside quite the way he did, and that sent red flags up for me when I read your post. They do need to explain the possible complications, but still, it sounds like he played that aspect up more than necessary, but that can just be the way I interpreted what you said. I agree that it would be good to have more than one opinion, but not sure you need to see a pediatric specialist. At 18 I would think your son's body is in the adult status, and carryover appointments will be necessary at least for awhile, and it seems like it would be better to find one doctor that will be the one to see him for the duration if at all possible. That's my thought on that.

And yes, it's important to learn as much as possible, so you aren't as frightened as you probably are right now. There are some good scoli books out there-- and internet sources as well. If you click on this link to a post I made awhile ago, you can read info on two books and also access a wonderful link that will save you oodles of your own time in searching for resources: http://www.scoliosis.org/forum/showp...9&postcount=12

My understanding on surgery re: getting rid of pain and deformity is that it is not a a promise they can make. They will stabilize the curve so it doesn't progress, they will correct it as much as possible (that is dependent on many factors), and usually rib hump/ shoulder blade deformities are improved, as well as pain being decreased. But I don't think that can be a positive promise, and I would be concerned if the surgeon says it is. But that is something for you to discuss with the specialist-- definitely not me!

Best wishes with all of this! Susie

[The Slice]

Hey Dawn, it's always tough to hear the news that you or someone close to you needs surgery. I would contact that surgeon and get the info on your son's curves. I would also consider trying let your son manage as much of this as possible in terms of appointments, decisions, etc.. Yes, he'll need advice, and guidance, and lots of support. From what you have said here, it sounds like that surgeon needs to learn how to be a bit more tactful, but it does not take away from the fact that there are inherent risks in any surgery. I would definitely work with your son to get at least another opinion or two. Get your son's input, especially about what "vibes" he's got toward the surgeon. Once you get the data from the other doctor, you and your son can make a more informed decision about whether he needs the surgery. Getting other opinions probably won't be about whether to have surgery, but whom to have it with. Different doctors have different approaches to the surgery. Don't feel guilty about going to other surgeons for second opinions. If any of them get their noses out of joint, they are NOT the surgeon for you. Hang tough.

[sdonnh]

Hi Dawn,

My 16 year old daughter had her surgery one year ago this month. I am not very good with the spine/medical lingo. All I can tell you is that her curve was in the lower part of her spine and it was in the range of 65 - 70 degrees. Her surgeon did an exceptional job and she is now at about a 25 degree curve.

She also suffered back pain two years ago. An MRI explained the back pain. She had a tethered spinal cord, that not only exasperated her curve when she grew, it created a syrinx, or tube-like cyst, along her spinal column which was causing her pain. She had surgery to repair that problem, which sounds much worse than it is, two summers ago.

As a mom, I understand how you are feeling. As you know, moms in general do not have much of a choice keeping it together in challenging times, we just do it. My daughter's surgeon and his staff not only helped my daughter through this procedure, they helped my husband and I as well. After reading your post, I can honestly tell you that that would have been the last time I saw that surgeon.

We were also told that there may be some blood loss and that she may require some blood. However, not to the extent that you were told. As it turned out, she did not require any blood at all. Yes, the surgery took about 8 hours from the time they took her in until the time that we could see her again. We met the person who was going to monitor her during the surgery. He was putting electrodes on her head and neck. After she was put under, he then put some under her skin on her hands and feet. He said his job was fairly uneventful (which is GOOD!), and that he just sat in a corner and if something showed up on his screen, he would alert the surgeon. Yes, it is considered a "big" surgery and, like all surgeries, there are risks. I guess I am just amazed with the way this was all presented to you by the surgeon. Definetely do some research and find someone else. My daughter's surgeon specializes in adolescent spinal issues, but he also treats adults. Hopefully, you will be able to find someone like him in your area.

My daughter is doing exceptional today. She recovered quickly and one would never know she went through the surgery that she did last year. She has played softball since she was 5 years old and, after recovering last year, was able to tryout after the first of this last year for her high school, making the varsity team. She now plays competitive ASA softball during the summer and fall. Yes, there are things she will never be able to do again. However, most are high-risk activities and I am okay the doctor put the kabash on them.

Good luck to you and your son. Find a surgeon that you have a good feeling about and don't settle for anything less.

Best wishes,

Shannon Harp

[ARN010]

My daughter had surgery a month ago

Dear Dawn:

I can totally relate because I just went through this with my daughter. It sounds like your surgeon may have emphasized the possible worst outcomes. I think they have to do that to inform you but it is my understanding that with a good surgeon most of these are very rare, yet possible.

I would obtain a second opinion. I am not sure what area of the country you are located but I would go to the best in your state. I saw Dr. Rinsky at Lucile Packard Children's at Stanford for a second opinion (you could possibly request one from him via e-mail or snail mail along with x-rays on a disk). He answered all my questions and backed up what Dr. Lincoln (our ped. surgeon) had said.

My situation was a bit different because my little Amanda was diagnosed at 6 and wore a brace for 3.5 years. Then had surgery when her curve went to 49 degrees (it started increasing more than 3 deg/month once she achieved peak growth velocity at 10). We are one month out and she is doing GREAT. There was a 100% correction of the hump and curve so we are quite lucky.

What I do know is that they used a cell saver during the surgery and had to use NO donor blood. Hers was an "easy" case though with very little rotation and a posterior surgery. She has two rods and screws at every level T4-L1. Her incision is about a foot long and it took 200 stitches.

I really suggest contacting the American Board of Orthopaedic Surgery and finding a board-certified surgeon in your area at least to obtain a second opinion. I think the complication rates are very low nowadays.

Also, I know that scoliosis itself only causes pain in some cases (I think I read 10% or so) but if your spine is curved it can put pressure on other muscles, tendons, ligaments. In fact, after surgery my daughter has most of her pain in her shoulder (trapezius muscle) and in her ribs. Those were moved quite a bit. Her back/spine doesn't hurt at all. She had no "back" pain prior to surgery though.

Lastly, since your son is an adult (18) he can probably research with you and bring questions to the doctors and come to a conclusion with you about whether the benefits are worth the risk.

I hope that feedback helps and my heart is with you. It is sooooo scary to have a child facing possible major surgery. I was a nervous wreck for over a month. I woke up shaking every day. I had to get anti-anxiety medication for a few days. I got a lot of support and encouragement from this forum. Reading others' experiences and trusting that I would get to the other side of this helped A LOT!

Take good care of yourself and it doesn't sound like you have to make a decision TODAY so do something nice for you and keep researching.

Lots of love--Mary

[tonibunny]

Hi Dawn,

Oh dear, it really sounds like your son could do with seeking a second opinion. Are you in Sheffield in the UK, or somewhere in the USA? If you're in the UK then I know of a very good surgeon based at the Royal Northern Hospital.

The spinal cord monitor is there to act as a warning system. If it beeps, that doesn't mean that the patient is suddenly paralysed - it is just in warning that the spinal cord may be stretched a little too much as it is being straightened out, and that the surgeon needs to relax the correction a little until the beeping stops. Even if the patient appears not to be able to move when they are woken up following surgery (which is extremely rare) this paralysis is usually reversable if the rods are removed/slackened off as soon as possible. It would take a great deal of trauma to the spinal cord to paralyse someone irrepairably, and with experienced surgeons the chances of this are minute.

By law, surgeons have to inform patients of all the risks associated with any surgery, and it could well be that your son's surgeon is hoping to make sure that your son is 100% sure he wants the surgery and is committed to it if he decides to have it done.

Good luck!

[Megzi]

Thankyou everyone

Hello again
Firstly I would just like to thank everyone who has taken the time to reply to me. Your kind words of support and advice is very much appreciated. I am so glad I found this site. We live in Sheffield, South Yorkshire, England. My sons spine is at 45 degrees and his ribs 18 (I assume that means degrees too). I am not too good on the lingo I'm afraid as you can probably tell! I am sure our surgeon has had to give us the worst case scenario but I just can't help but think that knowing our luck something will go wrong no matter how positive I try to be. Have any other parents felt the same? I think the doctor said his curve was the most common. We go back to see him on 30th July. I am going to write a full list of questions ready to ask, as on our last appointment my head was spinning and I just couldn't take on board what he was saying. It was a great shock. I think even if he had said there was a 1 in 500,000 chance of something going wrong I would still be terrified but when he said 1 in 600 I just thought the risk was too great. My son has since joined this site and is going to post his own message on here which I am sure will be of great help to him to talk to people who have been through the same. Can anybody tell me what happens prior to the op? Does he have to have tests,etc? Once agin thankyou very much everyone.
Best Wishes,
Dawn x
PS I hope I,ve posted this on the correct section. I'm not very good i,m afraid. if not can someone let me know so that those who sent me a message can read this. Thanks

[Jennybear]

Hi,

I just had the surgery 5 weeks ago and there was a few preperations, but it could be different where you live. I gave 2 units of blood, and went to meet with the surgeon,but that was about it.

As to your question about things always going wrong I no how you feel, even though I'm not a parent. you just have to be positive because even though it may seem like things are horrible, there not as bad as they seem. Being afraid will seem so silly once it's over, you just have to remember to stay positive.