Appt at Shriner's in Phila

[MATJESNIC]

Hi Friends,

We are exhausted. But I wanted to give you an update. Her curves are 48 and 55. Each curve went up 10 degrees in the last five months. She has grown a few inches since we were at Shriner's 14 months ago. When she is straightened out she will be between 5'6 and 5'7, I believe.

The doctor thinks that although she is at a 0, she is not going to continue to progress rapidly. He believes it will be slow, i.e. be in her 60's when she is in her 30's, etc. We could wait until then and see what technology is out there. He didn't think we definitely had to get it done if we really didn't want to.

But we know we really should just take care of this now. She will be fused from T2-L3 or L4. It will be done in the back. It will be a 7 hour surgery. They will use stainless steel screws and not get bone from her. It comes in a package, or something.

We are going to CHOP for a 2nd opinion. Just want to see more than one surgeon before going through this. Not sure who we should try to see at CHOP.

Nicole was amazing. Didn't cry once. We were there for 5 hours. Husband and I didn't cry. I talked to the doctor as if I was asking questions about my car. At this point, I don't know if I am numb or if so much of the emotion has been over the past 2 years. Anyway, please someone who had surgery, tell me your opinions of the things I mentioned. Does everything sound good? What other questions do you think I should ask?

[pat]

Hello Melissa, thanks for posting, I, and I'm sure others, have been waiting for your post. Maybe you should move this to the kids' surgical section. But, it sounds like Nicole will be fused exactly the same as Jamie. Glad to hear they're not taking bone from Nicole. You're doing great! It will all work out! pat

[Celia]

Hi Melissa,

My first thoughts when I read your update was "OMG that's A LOT of vertebrae to fuse!" and "Will Nicole ever dance again?" I guess minimally invasive spine surgery is out of the question? Sorry, I should be more positive but I'm still in shock from the whole thing.

[azalea]

Melissa,
It sounds to me like you are doing everything perfectly.
I have been told that progression after about 40 degrees will increase at least by one degree every year. Also, the older you are, the more structural and stiff the spine will become, so you will recieve less of a correction if Nicole waits until her 30's. Recovery will be longer and more difficult as well.
With that in mind - one of my good friends had this sugery when she was 13 (1993) everything went perfectly except she was still growing although it had been assumed that she would not be. She had to have a revision unexpectedly at the age of 17. I think it is important to wait until Nicole is fully mature, but not so long that she has lost flexibility.
I had surgery two months ago at the age of 26 and received only a 50% correction despite being active in yoga, however I am healing with a bit more ease them some of the others on here who are older.
I would also ask questions in regards to the bone being used. There are several different methods. My surgeon used a graft from my hip, which I find to be the best option as there is no chance of the body not taking to it.
I hope what I said helps.... I did go on, didn't I?

[MATJESNIC]

God willing, Yes, Nicole will doing everything again in a year, some things in 6 months. Her spine will be stiffer, but she will still continue a normal life. Probably no bending or twisting for a full year. So ballet and jazz will have to wait until then. Possibly tap in 6 months. Of course, these are Nicole's worries, not mine. I have bigger worries than dance!!!

Pat, are you saying that Jamie didn't have any bone taken from her?

They don't thinks she will be growing much more. I really don't want to wait much longer because I want to get a better correction.

I will feel better after getting another opinion. But surprisingly Nicole does want the surgery. She just wants to get a straighter spine.

[Sherie]

Hi Melissa

I just saw this after posting on the other thread. Nicole will be fused about the same as Sheena. Three doctors out of 4 said T4-L4, Dr Lenke was the only one who felt it was necessary to go up to T3 due to some kyphosis. Sheena is not very active but she's an artist and this is what she wants to do for her career so I'm concerned about pain and fatigue above her fusion.

I find when I'm discussing with the doctor's, I also don't get emotional, I can discuss very rationally but when I'm by myself, especially in the car, it really hits me. I try to think positive, but it's impossible not to worry about the future. Nearly everyone says it's better once you're on "the other side".

Dr. Lenke is proposing using BMP. I was so surprised that I didn't even ask any questions, now I have many things I want to ask. I've been told by every other doctor that it's too expensive and not really necessary for kids but I think it's going to be standard in the future. I haven't decided for sure if this is what we want to do, I suppose it depends on the answers I get to my questions. I left a message for the nurse today.

I posted on the other thread about height and risser. I feel certain Sheena is finshed growing. I think Azalea made a very good point about waiting for growth to be finished. Dr. Lenke was very forthright and said this will not be her last operation but hopefully, it will be many years before she needs another one. By the way, I compiled a list of questions and typed up the answers from our very first appt. (not with Dr. Lenke) if you're interested, I could email them to you. It helped me alot in the decision making to seek several opinions.

[MATJESNIC]

I am glad we can go through this together. Why won't this be her last surgery? My husband asked about that (I was surprised he did) and the surgeon said he wouldn't expect that she would need a future surgery. Could you tell me about her height and risser. Are you talking about the bone in a bag? They will use that too, for Nicole.

I am anxious to get a 2nd opinion. I thought most of the kids in our kids' situations only get one surgery. I was actually not even thinking along those lines.

Why would we wait until they are done growing when the main point of having the fusion is to stop the curve from increasing while the kids continue to grow? You saw what happened to Nicole while we waited for her to do some more growing. Her curves went up 10 degrees each in 5 months. Where will we be 5 months from now if we wait for more growth. Like I said before, Nicole isn't a typical risser 0 who hasn't had her growth spurt yet. All the surgeons we have seen said she has most of her growth behind her based on when she had her period.

Yes, I would love that list. I forgot to ask some things, as well. My address is matjesnic@comcast.net

[laurieg6]

Melissa & Sherie: Your daughters are lucky they've been able to wait until most of their growth has finished. I know my son still has a lot of growth left but 4 surgeons said we should not wait more than three to six months. That's why I wanted the fewest vertebrae fused as possible - so he'd have as much growth potential as possible. All the docs also said this would probably be his only surgery. I hope they are right.


Azalea: When your friend had surgery @ 13 in 1993, did they use the pedicle screws? I was worried about crankshaft with Alexander still being under 5ft tall. But 3 out of 4 docs told me that anterior surgery wasn't necessary & that they were not worried about crankshaft. They said his spine is 80-90% fully grown by now & that most of his future growth will be in his legs. They also said that the pedicle screws help prevent crankshaft & the need for anterior surgery.

I appreciate all the information from everyone on this forum so much.

[MATJESNIC]

Laurie,

I am glad you will be on this journey with us. It will make it a lot easier for all of us. Everything you said that the surgeon told you makes perfect sense. A lot has changed in only a few short years. I wish you and your son all the best. Where are you located and who is doing the surgery? Sorry if you already said it. When I find out our details I will put it in my signature.

[Snoopy]

[QUOTE=MATJESNIC] Probably no bending or twisting for a full year.


Melissa,

Nicole should be allowed to bend/twist after a few months. The restrictions that last for a full year are things like riding rollercoasters. You will be amazed at what she will be able to do.

Mary Lou

[Sherie]

Dr. Lenke does many revision surgeries, I think he's referring to surgery due to disk problems that he sees on a daily basis. I hope he's wrong, but if not, there will be advances in treatment by then.

Sheena is probably Risser 4-5, height is about 5'2" (I'm 4'11", no scoliosis, just short).

I don't know what bone in a bag is. BMP is a protein that induces normal cells to become bone growing cells, fusion rate is very high and there is less pain, blood loss and surgery time compared to autologous bone. I'm not sure it's been FDA approved for > 1 level of spinal fusion or for pediatric patients (although I think it said it's approved for skeletally mature patients, she might fall in that category). I'm still trying to find out more about it before we commit.

I would assume being skeletally mature would improve your chances of the hardware being firmly in place, no chance of movement due to growth. On the other hand, I have also heard most of the growth is in the long bones the last few years, although that makes me question why did Sheena's back get so much worse this past year. Also the technology with pedicle screws is much stronger compared to previous constructs so that may eliminate some of the problems like Laurie said.

Laurie: I know you have additional worries due to your son's age. I'm sure you've done all your research, but are growing rods possible? There may be an age where it's not feasible but it wouldn't hurt to look into it.

[laurieg6]

I truly appreciate being on this journey with you too, Melissa, Sherie & all you other great moms & dads on the forum. I live in Seattle, WA, very far from all of you I think. The surgeon we finally chose is Dr. Ted Wagner & he works at Children's Hosp. here (one day a week) & at Univ. of WA several days a week. I felt good knowing he had strong knowledge & experience with both kids/adolescents & adults when he was proposing the fusion levels he'd do.

Regarding growing rods, we ruled them out, & the Drs. didn't think they were necessary, because they believe Alexander will "only" lose about 2 inches off of what would have been his final height if he did not have scoliosis. My husband is 5'7" & I'm only 5'1" so Alexander was probably never destined to be very tall; he may get to 5'5". Since most of his growth at this point would still have been in his legs, we decided against putting Alexander through the additional stress of continuing medical intervention, especially further surgeries for his scoliosis. We have been so focused on it & tried so many (apparently unsuccessful) treatments for it & been to so many appointments (eg. chiropractic, craniosacral massage, acupuncture, Hellerwork) for years. We kept trying to prevent the need for surgery but the more I've read recently, it seems like it was inevitable given the risk factors with his hemivertebra.

I do wish I'd known about this forum years ago but it's great to have found it now when the most challenging part of our scoliosis journey has arrived...

[SARAHK]

Nicole should be allowed to bend/twist after a few months.


I was told after both surgeries that bending and twisting were the 2 worst things you could do. The way my doctor described it to me is that the fusion needs time to heal and the more movement there is, the less likely the bone with solidify. He thinks the reason why my first fusion didn't work was because the hardware wasn't holding things tightly enough and the slight flexibility that was there resulted in an unhealed fusion. Eventually one rod broke, proving there was movement going on. But I do agree that you will be suprised at what she will be able to do. After I made it through the first year of not bending I felt no different than I had before. You're not stiff as a board or anything.

Melissa I would recommend that you ask for the strongest hardware possible. My current hardware is around a quarter inch thick but my first set was quite a bit thinner. It's good that they're using screws too. I only had hooks with my first surgery and one of them had come loose. My current doctor said he always uses screws. I haven't noticed any difference in the way my back feels with this new, stronger hardware so I wish Shriners had just gone ahead and used stronger stuff in the first place. Maybe I could've avoided a 2nd surgery...

I also had the BMP (bone in a bag as you say ;) ). I had a Thoracoplasty as well (where they cut ribs to reduce your rib hump) and I believe they used some bone from that. BMP seems like a great way to go in my opinion. I'm so glad they had it this time around because I feel like it's a more sure thing since it acts like a catalyst. But I believe my doctor said he doesn't use it in children because their bone grows much more easily and quickly. So maybe Nicole won't need it.

I had my 1st surgery a little too late I think so I'm all for getting it over with when you realize it's a necessary thing to do. My curves progressed rapidly like Nicole's when I was a teenager and we kept putting it off, trying chiropractic to avoid the whole thing. I had the surgery with a 76º curve but if I had had it sooner, they would have been able to correct it more probably. And at 13 she's going to heal much quicker than an 18 yr. old even.

Sorry this was so long! Hope that helps! Good luck!!

[MATJESNIC]

Sarah,

Thank you so much for your story. It is very helpful.

We are leaning towards Children's Hospital Of Phila. The reputation is amazing and there is a good chance she could have the surgery done by the Chief of Staff, Dr. Dormans. He has performed surgeries on other children in our area. Thankfully, it is in-network for us. I think Dr. Flynn has excellent credentials, as well. The hospital is less than an hour from here.

I was told that with Nicole's large curves we will not have to wait long. They told me that by the end of next week we should be getting a call. They are updating their computer system and just taking down names and numbers.

When we get our appt., I will feel a lot better. But for now, I am taking a break until then. I believe this is the best place for Nicole and our situation.

Thanks so much to everyone for your constant support. Together, we will all get through this.

[Snoopy]

Sarah,

You said it yourself...your doctor thought your first surgery failed because the hardware wasn't tight enough. Why wasn't it tight enough? Why didn't he use screws? Did the hook come loose because it wasn't tight enough? I would imagine if the hardware wasn't tight enough, it wouldn't have matter whether or not you would bend or twist--it would eventually fail.

I'm just surprised that you weren't allowed to bend for a year. Some kids are released from ALL of their restricitons at six months post-op. For my daughter, her surgeon was more strict about her restrictions than some doctors are only because he wasn't able to use screws.

Mary Lou

[SARAHK]

Mary Lou, No I don't think that bending and twisting was an issue in my case, because I stuck to the rules for that first year pretty well. But I was comparing the movement I had (due to the slightly loose hardware) with that of bending and twisting. I think you want to restrict movement in that area for the 1st year as much as possible because the bone will solidify only if it isn't being shifted around all the time. I'm certainly not a doctor so I have no idea if that really affects anything or not but I did have two seperate sets of surgeons tell me that bending and twisting were the main things that I should avoid for almost an entire year. I was also 19 when I had the 1st surgery and I would imagine that the restrictions for older patients are more strict because your bone doesn't grow as well as a younger patient's.

I'm still not sure why Shriners decided to use hooks instead of screws. But as far as the hardware goes, my current surgeon said that they always leave a little bit of flexibility within the rods because your spine needs that. He even told me that they allow for about a 10% curve progression after the surgery once your back adjusts to all the new hardware. I had no idea that my curve could get WORSE after the first surgery. But he said that's normal (as long as it's within 10% of the correction). But in my case he thinks there might have been just a little too much flexibility, just enough for the bone to have been moving too frequently to heal. It's all very confusing and frustrating but now that I'm older and more knowledgeable about this surgery, I ask a lot of questions! I think that they still have a LONG way to go with scholiosis research though.

[Suzy]

Just a quick note on this subject. When my Dr. was talking about what hardware he was going to be using he did mention that if I had a small pedicle anywhere my fusion was going to be they would have to use a hook instead of a screw in that area. I asked if one or the other would hold better and he said no, just that a screw would be too big. On my x-ray it looked like I had a some small ones. I ended up with screws in all pedicles in the end.

[Snoopy]

Suzy,

That is exactly why my daughter doesn't have any screws--her pedicles are too small.

Sarah,

The more I learn about Scoliosis, the more confusing it gets! I know every person and every doctor is different, but it still amazes me how the restrictions for young people vary so greatly. Until now, my daughter was the only person I knew of who didn't have screws and had a recent surgery.

Sorry if it sounded like I was doubting you or giving you a hard time. Like you, I'm always learning. Good luck.

Mary Lou

[SARAHK]

Mary Lou,

Not at all, hope I didn't sound like I was doubting you either. I think the restrictions for younger patients must be less strict. It's so unbelievable to me how scholiosis has been a documented health issue for hundreds of years and yet doctors still don't seem to agree on the proper treatment. To an extent they do but so many people seem to need revisions. It's frustrating but I am thankful for the surgeons who devote their lives and time to such a complicated surgery. I can't imagine how hard it must be to get to the level of being able to do surgery on someone's spine!

Good luck to all of you!