13 year old daughter with a 44 degree lumbar curve

[susancook]

Very well said, Ed. A few major points that resonated with me as I see it:

* she is NOT in severe pain and she does not have lung, heart, or bowel compromise or a collapsed/damaged vertebrae so no need to hurry to an immediate surgery. I wonder about the doctor that recommended that. Having surgery is a major life changing experience and not one that should be made without a lot of careful thought. If somehow you could know that the curves changed minimally for the next many years and she was still not in pain, then jumping to surgery now might be a bad decision.

* the young lady needs to choose surgery if that is the final conclusion. She needs to be actively involved in the decision making.

I cannot imagine how difficult it must be for parents of teens or any age children to contemplate surgery for their child. I wish the family peace.

Susan

[Pooka1]

Well I know you have two surgeons telling you to fuse now but I tend to agree with Ti Ed. Your daughter is sub-surgical now and has a demonstrated progression of only about 11 degrees in about 8 months. The reason I say "only" is because both my daughters had thoracic curves that moved much faster (4* - 5* per month). I think your daughter might be considered surgical because of the demonstrated progression, not the present magnitude but you would have to confirm with the surgeons. So Ti Ed's point about possibly being done growing is well taken. Unless both surgeons told me point blank that they could straighten her so much that a distal extension was unlikely or would likely be put off for several decades, I am not sure I understand the rush to surgery at 44*. But I am not a surgeon and the surgeons probably have some reason they told you that.

Now if they were possibly planning heroics like osteotomies to limit the fusion into the lumbar and the success of that depended on having a smaller versus a large curve then I can see that as a reason to rush.

I am not questioning your surgeons. I am throwing things out there that I would ask these surgeons were it my child. I hope that difference is clear.

[titaniumed]

I’m wondering about “cut happy” surgeons....... And how do you know? You have to think about these things......very important!

I also think that if seeing another surgeon, go in blind and don’t admit to seeing another scoliosis surgeon. In other words, don’t sway the decision.

“Ive had 19 of the best in the world saying do it now, what do YOU think?” No tumor, no pain, no hemi, no progression ......Uggghhhh “Yes, and do it now”

Surgery is USUALLY a last ditch effort......That’s what I’m trying to say here.

I should have simply posted

“Move slow”.

Ed

[coolblue]

Dear Ed, Pooka and Susancook,

Points very well taken. Just to explain when I said three month windows is to see the rate of curve progression over these periods. since her growth spurt is nearing the end hopefully the curve too would have slowed down as well.

If there are no significant changes in her curve we would continue with her PT. Luckily she does not have pain.

My question too to the surgeon was if he could save a lumbar level now. He took a hard look and said there was a possibility of fusing till L3 but due to rotation he would have to go down to L4. My take is that unless the curve changes very significantly there would not be any changes in the fusion levels. Hence the "Waiting and Watching".

Fingers crossed that her curve does not progress significantly... That being said we are all too aware that she is a probable surgical candidate and may need the same sooner or later. So we are doing all our necessary groundwork to be ready if and when she needs surgery. Hence reaching out to what we think could be the best in the world and keeping those options open as well.

Who knows in our endeavor to buy time there could be some path breaking procedures that could significantly improve her quality of life post surgery.

[Pooka1]

coolblue, I like your thought process.

I am giving you an A+ on this analysis. :-)

[coolblue]

Thank you Pooka. Every drop in the ocean counts. Lol.

[susancook]

You sound like very caring parents and it is important that you are an informed advocate for your daughter. My only concern is your comment about posturing for surgery "sooner than later". Surgery cannot be undone and sometimes patience and waiting may be the best tactic. Predicting the future is so difficult. Good question to ask: what would happen if we waited a year for more information on change in the curve? I am not a surgeon, but what might be important is looking for change over many points in time, obviously considering her age of menarche. Best of luck in your journey to help your daughter.
Susan

[coolblue]

My only concern is your comment about posturing for surgery "sooner than later". Susan

Okay just to reiterate the sooner than later comment was of the surgeon. infact his exact words were the sooner the better. And this was echoed by all the five surgeons we have met so far.

Nonetheless we are clear that while our daughter may be a "probable candidate for surgery sooner or later" as of now we shall be "waiting and watching"for any significant changes that may occur in the near future.

Also we are clear that any kind of surgical intervention for fusion cannot be undone, which is why we have kept it as a last resort.

[Pooka1]

Okay just to reiterate the sooner than later comment was of the surgeon. in fact his exact words were the sooner the better. And this was echoed by all the five surgeons we have met so far.

Okay this makes me think that they might be thinking of trying to save levels in the lumbar because she is now sub-surgical and has a "slow" progression. Maybe they feel they would have to go to pelvis if you wait much longer. You would have to specifically ask them why they told you this.

There have been testimonials one this forum where surgeons have operated on kids below the normal threshold to save levels.

[titaniumed]

Ok, 5 surgeons saying “sooner than later”.....that tips the scales of decision a little more.

Just trying to cover the bases......

Sigh.....

We have our fingers crossed. After the 90 days, please post to let us know how she is doing.

In thinking ahead, (always a good idea) I guess it would be prudent to make sure she understands the details of surgery. I hope she isn’t too scared, we do have quite a pill to swallow in dealing with all of this, and it takes time and careful communication. Kids will admit things that they might feel parents or adults “want” to hear, then think and change their minds later. It takes multiple sessions over a period of time to completely cover all issues. If one doesn’t know, they don’t know.

Adapting to a full fusion is something we have no choice on sometimes. Many of us do ok in this regard, I personally don’t think its too bad and I have adapted wonderfully.....(that’s my testimonial at age 55) Once the person knows that this is just a little detour, accepts it as a challenge, and thinks “I can do this” then they are ready. This again, takes time to be sure....it took me a LONG time to be sure. Yes, means yes. 100% yes. A solid yes.

I don’t think that someone should go into surgery if their minds are not in acceptance. They cant be asking “why me” at that stage, they need to understand that it happens, it happened, and accept it. Patients have to “want” to be fixed, regardless of method. They also need to understand that attempts at any effort have potential for failure, and that means not giving up, we brush off our hands and continue on one day at a time. We have to be strong.

I am interested in what Dr Hey thinks....He has posted that he prefer’s an earlier intervention in cases, my question would be how early? Are the surgical advantages worth not waiting? Do the surgical advantages outweigh the psychological aspects at age 14? Ask your current surgeons these questions and you will get a surgeons answer......I did live with scoliosis as a teen but didn’t do surgery as a teen therefore I cant elaborate my feelings on this. Perhaps other’s can chime in, but they would have to be fused young and with modern instrumentation to be realistic. We know the old casting days with Harrington rods were a challenging period in scoliosis history. Anyone who went through that is a trooper.

If a decision is made, setting a date is easy, it can be done at any time. Cancelling a date is not as easy....I know this because I did it once.

All my statements and questions have run through my mind in living with scoliosis for 40 years. My questions just seem to happen automatically, they must be in the genes I guess. (smiley face)

Ed

[coolblue]

After the 90 days, please post to let us know how she is doing.

In thinking ahead, (always a good idea) I guess it would be prudent to make sure she understands the details of surgery. I hope she isn’t too scared, we do have quite a pill to swallow in dealing with all of this, and it takes time and careful communication. Kids will admit things that they might feel parents or adults “want” to hear, then think and change their minds later. It takes multiple sessions over a period of time to completely cover all issues. If one doesn’t know, they don’t know.

Adapting to a full fusion is something we have no choice on sometimes. Many of us do ok in this regard, I personally don’t think its too bad and I have adapted wonderfully.....(that’s my testimonial at age 55) Once the person knows that this is just a little detour, accepts it as a challenge, and thinks “I can do this” then they are ready. This again, takes time to be sure....it took me a LONG time to be sure. Yes, means yes. 100% yes. A solid yes.

I don’t think that someone should go into surgery if their minds are not in acceptance. They cant be asking “why me” at that stage, they need to understand that it happens, it happened, and accept it. Patients have to “want” to be fixed, regardless of method. They also need to understand that attempts at any effort have potential for failure, and that means not giving up, we brush off our hands and continue on one day at a time. We have to be strong.

I am interested in what Dr Hey thinks....He has posted that he prefer’s an earlier intervention in cases, my question would be how early? Are the surgical advantages worth not waiting? Do the surgical advantages outweigh the psychological aspects at age 14?

Ed

Thankyou for your thoughts. There could have been many things that could have gone wrong with our children. Scoliosis is something that people live with after the necessary adjustments. Yes it has been difficult but we now need to look ahead and try and see what best can be done from here on. And the same is being shared with our daughter also. But on the other hand we want her as of now to enjoy her teens, go for school trips with her friends and do all the normal things a teenager does without burdening her with too much. Even her trips to the surgeon here have been turned into small holidays with an extra day or two thrown in for shopping and/or lazing in the room. (smiley face)

She has been present in all the discussions with our doctors. But as I said I am not getting her worked up about the surgery as both she and her mother are concentrated on the PT aspect. Thats how we have broadly divided the work in our family. Her mom is totally focused on the PT part and I am looking at the possibility of surgery if and when required. It has been our conscious decision on crossing each bridge as we come to it and we are at peace with it.

I am sure when we have exhausted other options or when we do decide to embrace the surgical option it would be a solid 100% YES with complete buy in from all of us and no regrets that we did not leave any stone unturned.

Even we are interested in what Dr. Hey thinks as well as feedback from Shriners. Hopefully they would reply soon. I am sure we could have saved some levels 8 months ago when she was initially diagnosed but at time the doctors were of the opinion that we should wait and see. Of course hindsight is always 20/20 vision but I am not too worked up about that. We did what at that time we thought was right and it was also the doctors advice.

On the question of lumbar levels going down lower by waiting since she has done most her growing, I do hope the rate of curve progression slows down. We shall get to know within three months. If there is no significant curve progression I do not think there could be a threat of lumbar levels going down further. Which is why three month windows and not not six monthly despite the increased radiation exposure as a trade off. We do have a fairly good reach to the Indian surgeon with whom we could send these xrays for opinion. Meanwhile with Torso Rotation, Side Shifting and selected Scroth we can achieve some amount of derotation who knows we might be able to save some lumbar levels......

[susancook]

Okay just to reiterate the sooner than later comment was of the surgeon. infact his exact words were the sooner the better. And this was echoed by all the five surgeons we have met so far.

Nonetheless we are clear that while our daughter may be a "probable candidate for surgery sooner or later" as of now we shall be "waiting and watching"for any significant changes that may occur in the near future.

Also we are clear that any kind of surgical intervention for fusion cannot be undone, which is why we have kept it as a last resort.

RM: hope that this note finds you taking in various perspectives on how various people view your daughter's situation and not thinking that we are all out in left field!

My understanding of the "2" doctors was from your first entry that I thought mentioned that your daughter had seen 2 doctors. Since she has seen in fact 5 that make the same recommendation, that gives more weight to that suggestion. My apologies for maybe misreading your initial entry.

Again, the question that I might ask each of the surgeons is, "what would happen if we wait to see the change over time, perhaps one more year?". Maybe we Americans are more "in your face" to doctors than is culturally appropriate for you, but asking these questions may give you more information and assurance that whatever decision is made in the end is the best and right one for your daughter, made with your daughter.

Please let us know what Dr. Hey recommends. Also, of interest, where were the spine surgeons that have seen your daughter trained?

Take care and sending peace to your family as you and your daughter sort through the recommendations and try to come to some conclusion.

Also, I cannot remember, but did you send X-rays and history to any Shriners?

Susan

[Pooka1]

Even we are interested in what Dr. Hey thinks as well as feedback from Shriners. Hopefully they would reply soon. I am sure we could have saved some levels 8 months ago when she was initially diagnosed but at time the doctors were of the opinion that we should wait and see. Of course hindsight is always 20/20 vision but I am not too worked up about that. We did what at that time we thought was right and it was also the doctors advice.

YES! Yes you were COMPLETELY correct on not looking for fusion for a 33* lumbar curve! Lumbars tend to progress less often and if it stayed at 33*, she might have avoided treatment for life. I very much doubt you would have found a surgeon to fuse a 33* lumbar AIS curve on a child!

The case* I think of when talking about lowered surgery trigger was for a thoracolumbar (not lumbar) on a young child who was progressing and I guess it was clear that they could try to save some lumbar levels if they operated sooner. That case is different from your daughter who has a lumbar curve. TL curves are emergency situations in my opinions were it my child. The other curves, not so much except with frank lumbars where levels can be saved also.

*And even this case was not 33* as I recall. I think that child had a larger curve but I don't recall exactly how large.

[Kat3573]

I would highly recommend seeing Dr. Asghar. He's a phenomenal surgeon and here's the best part for your child's case: he does not focus on making the curve straight.

You are proabably thinking that that's crazy of him, but it is actually amazing. A lot of surgeons focus on correcting the curve to make it perfectly straight or close to perfect, but here are the pros and cons of making a curve perfectly straight:

Pros: section of spine will be straight

Cons: more vertabras will be fused, if not fused long enough the remaining part of the spine will be under pressure and could cause lower back pain and another round of surgery to correct the SECOND curve caused by the first surgery- in the end the whole spine could be fused

What doctor asghar does is make the scoliosis less curved. There will still be a TINY curve (less than 10-15 degrees for the area that was surgically fixed) and that will be enough to correct the problem without causing any more. By not making the surgically fixed area of the spine straight, both the top and bottom curves will even out and the curves will not get worse, according to my understanding. Dr. Asghar told me the point of the surgery is not to make the spine straight, but the prevent the curve from getting worse and cause other problems.
Here are the pros and cons of having the surgically fixed area not straight
Pros: less vertebras will be fused(which means more flexibility), slim chance of needing to have a second surgery perform because the original one cause another curve
Cons: area fused is not straight

Highly reccomend Dr. Asghar; he was My surgeon and would explain everything a lot better than me.

In the end, I would highly recommend to see a variety of doctors to see their method of correction and chose the surgeon whose methods appeal to you most.

[coolblue]

By some fortuitous turn of events Association of Spine Surgeon of India (ASSI) is organizing the SRS (Scoliosis Research Society) World Wide Conference (WWC) at Kolkata on the 23rd/24th of January 2014.Eminent International faculty of SRS from all over the world will be present. Themes : Early Onset Scoliosis (EOS) and Adult Degenerative Scoliosis. The list of international faculty is [URL="http://www.assicon2014.com/conference_faculty.php"].One of them is Dr. Lawrence Lenke, who as I understand is one of the foremost surgeons in this field.

All our efforts to seek an appointment have not been successful with the reason being that he is unavailable to personal consultation, which is understandable.
However, dont feel like letting up a chance like this so close home. Does anyone have a reach to him or his team and could help us secure a consultation. You could PM me the details.

Looking forward to hearing from you.....