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coolblue
12-03-2013, 12:24 PM
Our 14 year old daughter has been diagnosed with adolescent idiopathic structural thoracolumbar scoliosis. We are based in India. We had been to Mumbai for consultation with Dr. Bhojraj, a spine surgeon at Lilavati Hospital. She has just been for her six monthly checkup and as per the XRays the curve seems to have gotten much worse. It has progressed by a whopping 11 degrees in these six months. During this time she has actively practised Iyengar Yoga and done a bit of swimming. These obviously do not seem to have helped even though the doctor did mention that she is remarkably well balanced visually.

Dr. Bhojraj (Mumbai) has suggested to go for a full fusion surgery sooner than later. Especially in view of the fact that she still has atleast one year of growth spurt left.

Her details are as under :
Cobbs Angle at time of detection : 33degrees for the Lumbar Curve as per X Ray report.
Cobbs Angle Currently : 44 degrees
Menarche : March 2013
Growth in Height during last six months : 5 cm. Current Height : 154 cms
Gain in Weight during last six months : 2.5 kgs. Current Weight : 41.5 kgs.
Visual Balance : Good. Difficult to make out that she has scoliosis from visual appearence.
Pain : No Pain. She can do all her activities normally.
Braces : Not opted for perhaps due to the xray showing a Rissser 4 and the fact that it would have a psychological impact on the child not to mention the obvious discomfort.
Current Regimen (For Past Six months): Aggressive yoga (Iyengar Yoga) and swimming exercises. (avg one hour daily)
MRI : Clear. No Neurological Deficit found.
Spirometry : Clear
Eco-cardiogram : Clear
Latest Advise by Doctor : Full Fusion Surgery as early as possible.

We are also planning a consultation with Dr. Sajan Hegde at Apollo Chennai, who has also been reccomended by Dr. Betz, for his opinion. From the websites I can glean that he performs Robotic surgery using Renaissance Robotic Spine Surgery which I believe is minimally invasive. Wonder if she could qualify for the procedure looking into the nature of her curve ? Meanwhile we are continuing with yoga

I have the following questions in case you could answer them :
1. As per feed back received from Janet Cerrome of Shriners VBS / Tethering is not an option as she is probably reaching the end of her growth spurt? .
2. In your opinion what would be the hazard of waiting for six months say if the curve progresses by another 10 degrees.
3. Is that any way of saving her from getting fused till L4/L5/S1.
4. What are the best possible instrumentation that should be used in case of full fusion surgery.
5. Doctors suggested in US : Dr. Betz of Shriners and Dr. Ashghar of Miami. Dr. Lenke I believe may not take such a case. Please let me know if there could be others in the US or Europe / Asia
6. Any latest non invasive or minimally invasive techniques on this subject. Can she be a candidate for Minimally Invasive Spine Surgery like XILF ? Will it save lumbar levels ?
7. Her curves seem flexible? Post surgery hope that would lead to a good correction ?
8. What would be approx. cost of surgical intervention in the US considering my Insurance does not extend overseas. Shriners I understand does it free of cost for US citizens but am not sure whether we would qualify. Have written to them in any case.
9. Quality of life post full fusion in terms of pain, day to day chores and athletic activities. I have heard many in the forum especially Pooka being very concerned about fusing below L2 levels at such a young age as it would not only lead to significant loss of mobility but also a much early degeneration of the remaining lumbar levels

I understand that these are a host of questions but have just been registered after waiting for six months and with the curve progressing at the pace it has it really has stumped us. Please do let us have the benefit of your collective wisdom and experience by sharing your thoughts.

Also want to put in a word of appreciation for the moderators and the parents who have made this forum an excellent source of information but also a much needed support system for families the world over.


Thanks,

Coolblue

Pooka1
12-03-2013, 07:48 PM
Hello coolblue and welcome.

First I just want to suggest you not post personal information about your daughter (name, date of birth, etc.) either in your post or on the radiographs. I bring the images into Word and place a black box over the area where the information is printed before I post it publicly.

I hope more people answer your questions. I will try.



We are also planning a consultation with Dr. Sajan Hegde at Apollo Chennai, who has also been reccomended by Dr. Betz, for his opinion. From the websites I can glean that he performs Robotic surgery using Renaissance Robotic Spine Surgery which I believe is minimally invasive. Wonder if she could qualify for the procedure looking into the nature of her curve ? Meanwhile we are continuing with yoga

Minimally invasive surgery is only as good as the surgeon's experience to back it up. If he has done many successful surgeries of a double major curve then it is something to consider. If you don't go that route, your daughter's recovery will still likely be pretty short... a few weeks if she is average.


I have the following questions in case you could answer them :
1. As per feed back received from Janet Cerrome of Shriners VBS / Tethering is not an option as she is probably reaching the end of her growth spurt? .

You have to get the surgeon to determine how much growth is remaining with a hand/wrist radiograph. Get it scored and then report that to Philly/Shriners


2. In your opinion what would be the hazard of waiting for six months say if the curve progresses by another 10 degrees.

That is a question for a surgeon. But my daughters had curves in the high 50s when they were fused. One is straight... no residual scoliosis. Her curve moved 5* a month for the entire 6 months of observation. Her curve went from 48* to 58* in the two months between when we scheduled the surgery and when she was fused. Every case is different, though, even between my identical twins.


3. Is that any way of saving her from getting fused till L4/L5/S1.

That is a question for a surgeon. I can give my UNLETTERED opinion about this... just reading the testimonials on here, kids with double major curves like your daughter's are most often fused only to L3 no matter how far dawn the structural lumbar curve extends as far as I understand WHICH ISN'T FAR! More rarely, a child is fused to L4. At least one surgeon will do osteotomies to avoid going too low in kids. You need to talk to a surgeon! But I would get more opinions if they wanted to go below L3.


4. What are the best possible instrumentation that should be used in case of full fusion surgery.

You pick your surgeon who picks the instrumentation he knows best. Lay people don't pick instrumentation.


5. Doctors suggested in US : Dr. Betz of Shriners and Dr. Ashghar of Miami. Dr. Lenke I believe may not take such a case. Please let me know if there could be others in the US or Europe / Asia

Dr. Lloyd Hey in Raleigh North Carolina seems to be very concerned about keeping fusions as short as possible and doing them as early as possible once it is determined a child is in surgical range. Here is his blog...

http://drlloydhey.blogspot.com/

Here is his contact info: https://www.heyclinic.com/index.asp


6. Any latest non invasive or minimally invasive techniques on this subject. Can she be a candidate for Minimally Invasive Spine Surgery like XILF ? Will it save lumbar levels ?

That is a question for a surgeon.


7. Her curves seem flexible? Post surgery hope that would lead to a good correction ?

Yes it can lead to a good correction but that doesn't mean it should. My one daughter's curve was very flexible and probably could have been straightened more but it wasn't because straightening her type of curve too much leads to a high left shoulder and non-optimal balance in some planes. The other one had a different curve that could be hyper-corrected and she is perfectly straight other than some minimal rotation. Only a surgeon can answer for your daughter.


8. What would be approx. cost of surgical intervention in the US considering my Insurance does not extend overseas. Shriners I understand does it free of cost for US citizens but am not sure whether we would qualify. Have written to them in any case.

Go with Shriners. I think you are looking at $100K or thereabouts or more. More if there are complications. Shriners take kids from other countries. They took two children from Canada recently (last few years).


9. Quality of life post full fusion in terms of pain, day to day chores and athletic activities. I have heard many in the forum especially Pooka being very concerned about fusing below L2 levels at such a young age as it would not only lead to significant loss of mobility but also a much early degeneration of the remaining lumbar levels

I am NOT A SURGEON! My concern is what I read about the tendency to need an extension based on how low the fusion extends. I don't make the news! I just report it!


I understand that these are a host of questions but have just been registered after waiting for six months and with the curve progressing at the pace it has it really has stumped us. Please do let us have the benefit of your collective wisdom and experience by sharing your thoughts.

I don't know why it would take 6 months to register but I believe you!


Also want to put in a word of appreciation for the moderators and the parents who have made this forum an excellent source of information but also a much needed support system for families the world over.

It's very daunting to be faced with this diagnosis in your child. The people on this forum have gained some experience and just want to help. None of us are surgeons who are the only people who can answer many questions parents have.

I'm glad you joined us and I want to wish you and your daughter much luck.

coolblue
12-04-2013, 11:13 AM
Thank you Pooka for your detailed and timely response as always. I appreciate that opinions of informed parents like yourselves are just that and cannot be substituted for doctors advise. However it does give a direction to newbies on the questions to ask for and the need to seek more opinions.

The crux here is how to save levels in the lumbar. The doctors here are more conservative in their approach (nothing wrong with that). However most seem keen to go down to L4/ L5 in my daughters case looking at her curve placement. I would be keen to hear from Dr. Betz's team regarding his choice of fusion levels. Thank you for Dr. Hey's reference. Would be writing to him as well for his opinion.

Meanwhile would love to hear opinions from the others as well.....

titaniumed
12-04-2013, 07:14 PM
She has a good set of curves......and along with the lumbar levels, it’s a whole package. I’m wondering about her neck, there seems to be quite a lean in her x-rays. Her neck is pitched around 15 or so degrees in the first attachment which is a standing film.

Many of your questions are questions that only a scoliosis specialist can answer just like Sharon has mentioned. It would be prudent to at least see another scoliosis specialist for a second opinion. Address what levels they propose to fuse and talk about the future. Scoliosis is a life time thing....Many have revision surgeries years later.

I hope your daughter is taking this ok. Usually upon diagnosis we go through a few phases trying to cope. Shock and anger, all the “why” questions, and eventual acceptance. Pain will happen at some point, it could happen tomorrow or take 50 years. Dealing with pain is something we get used to. I think I’m used to it now?, after 40 years, I still don’t know. Of course, I have to joke about these things.

Remember that there is no blame. This is not anyone’s fault, scoliosis happens and it happens to quite a few people.

How many scoliosis surgeons are in India? When you find out, let us know. With 1.3 billion people, there has to be more than a few.

Welcome to the forum

Deep breaths.....

Ed

coolblue
12-04-2013, 08:27 PM
Dear Ed,

Thank you for your inputs

Will surely ask the specialist I am seeing next week regarding the neck thing.

Whilst there are a lot of surgeons in India who are doing scoliosis surgery only a handful could be said to specialize in Scoliotic procedures. Once I get more opinions I would post the same in the forum for comments. I am also keen to fuse as less lumbar levels now and keep the options open for a future revision surgery if required.

I have also got a response from Dr. Hey's office and would be sending them the xrays for their evaluation next week. Dont really know whether they would evaluate the case without physically seeing my daughter.

My daughter and my wife are focused on doing everything in their power to ward of surgery. They are currently doing yoga and we are also contemplating enrolling for the Scroth programme in Germany as a last ditch effort. Would be quite a task to get her onboard for surgery but will cross that bridge when we come to it.

Finally yes Deep Breaths it is.......

Pooka1
12-04-2013, 08:58 PM
[...] and we are also contemplating enrolling for the Schroth programme in Germany as a last ditch effort.

You should know that the doctor who was running the Schroth program (Weiss) who is the inventor's grandson has recently admitted he has abandoned Schroth PT as a treatment for scoliosis. He only recommends bracing now which is equally problematic in terms of avoiding surgery for life.

You might consider saving your money by avoiding Schroth. While Weiss was running the clinic, there were about 30,0000 patients in about 10 years and STILL he could not document efficacy of the Schroth treatment to avoid surgery. There is no evidence for the efficacy of any type of PT in avoiding surgery.

coolblue
12-06-2013, 11:29 AM
Thank you Sharon. Will keep it in mind....

LindaRacine
12-06-2013, 10:04 PM
Hi Coolblue...

Welcome!

I pretty much agree with what Pooka1 posted. She's give you fairly solid advice. I mostly wanted to compliment you on doing a good job of getting informed. Your observations and questions are pretty solid.

My one piece of advice would be to not feel the need to rush into surgery. At a Risser 4, I think it's probably unlikely that your daughter will have a massive growth spurt. And, even if she does, the surgical techniques used today would probably lead to great correction whether your daughter's major curve is 40 degrees or if it's 70 degrees.

Best of luck with your decisions.

Regards,
Linda

coolblue
12-07-2013, 11:51 AM
Dear Linda,

My questions and observations emanate from the posts in this forum. Cannot express how grateful we (and many other parents like us) are for having such a huge repository of information for this condition. At least here in India we are still largely unaware of the latest developments in this field.

Thanks for your advice about not rushing into surgery. We are seeing another surgeon in Chennai (who uses Renaissance Robotic Surgery techniques) for his views and should be able to post the entire discussions and comparative approach by next week.

I too hopeful that we are at an inflection point and should see some more advancements in surgical procedures to either reduce fusion levels or developing something akin to tethering for skeletal mature patients. Hope I am proved right....


Best regards,

Pooka1
12-07-2013, 11:55 AM
[...] an inflection point

May I ask if you are a chemist or mathematician? :-)

coolblue
12-07-2013, 12:07 PM
May I ask if you are a chemist or mathematician? :-)

..None.. Just an armchair economist hoping for a much awaited turn of the curve (pun intended) LOL...

Dingo
12-07-2013, 04:06 PM
My daughter and my wife are focused on doing everything in their power to ward of surgery. They are currently doing yoga and we are also contemplating enrolling for the Scroth programme in Germany as a last ditch effort.

Hi Coolblue,

I've spent thousands of hours reading about Scoliosis and although exercise is good for any child yoga or stretching probably won't have any effect on your daughter's curve. However torso rotation strength training might. TRS is new. It's fast, effective and outside of the cost of either a gym membership or 1 used exercise machine for use at home it's free.

Here is a link to a thread that includes all of the information and studies that back it up.
Torso Rotation Strength Training for Scoliosis (http://www.scoliosis.org/forum/showthread.php?8976-Torso-Rotation-Strength-Training-for-Scoliosis)

Here is a link to a thread that talks about my son's experience with TRS over the past 3 years. Long story short it worked for him just like it did the children in the studies.
Torso Rotation Therapy - How Scott is doing update (http://www.scoliosis.org/forum/showthread.php?14026-Torso-Rotation-Therapy-How-Scott-is-doing-update)

Good luck! 8-)

susancook
12-14-2013, 12:42 AM
Cool blue, only a few comments since adolescent scoliosis is not within my person experience. Rely on research findings that have been replicated in your guidance. Sometimes we get caught up in anecdotal information/personal experiences for information. Specifically, I am referring to doctors that may make claims that are not backed by good science.

You probably already have a good connection at Schriners, but if you need any information about their policies, I have a good friend that is in administration there. Send me a personal message if you need assistance there. I agree with the comment about going with Shriners if that is possible and if it is your choice for medical care in the US as others have mentioned the phenomenal cost of surgery. You would need to add on the transportation cost as well as lodging/food. In addition, you might want to stay near the hospital for some time after surgery in an apartment before undertaking the international flight back to India.

Your daughter is fortunate to have such a caring and involved parent. There appear to be some very good books for teens on scoliosis which may help to decrease her anxiety about what is happening to her body and help her to see that scoliosis happens to lots of other kids.

Best of luck in your quest to support your daughter. Susan

One last comment: you may find that over time going to different doctors and hence different X-ray machines and perhaps ability to read curves that there is a difference in interpretation of scoliosis angles. Always keep in mind that small changes in reports or small variability in readings can be due to that difference between machines. The best way to monitor change is to use the same machine over time.

coolblue
12-14-2013, 10:29 AM
Just back from the second opinion from the doc. He too has suggested a full fusion posterior surgery sooner than later. Suggested levels T3/T4 to L4.

Attached are latest xrays.

We have decided to continue with Scroth (from the book), Torso Rotation (Thanks Dingo) and Side Shift along with Yoga (to retain flexibility). for the next month to see if she can hold her curve. The first attempt would be to sustain the curvature and then to see if it can be reduced. We have given ourselves three month windows at the end of which we shall take a call whether to continue with exercises or opt for surgery. Meanwhile as suggested by Pooka have also emailed to Dr. Hey to see if he can suggest how to save the lumber levels and also written to Shriners Philly (TQ Maria / Susancook) to see if they could be of help to us in case we do need surgery.

Would like to acknowledge the overwhelming support both on the forum and via PM from all. It just gives us the feeling that we are not alone in battling this condition and there is a whole family worldwide offering their advise and support.

Shall keep you updated regarding the progress or otherwise. Meanwhile please let your comments keep on flowing...

God Bless,

titaniumed
12-14-2013, 03:04 PM
We have given ourselves three month windows at the end of which we shall take a call whether to continue with exercises or opt for surgery.


Even though we set and use dates for everything we do, I don’t think that you need to be “too” worried about this right now. You can proceed and see what happens with the exercises and the stretching and monitor the curves, but I wouldn’t plan on a surgery on the 91st day if this doesn’t work. You don’t move forward with surgery just to get it done, to get it done. She is most likely through most of her growth curve, chances are that she wont progress like a wildfire. Many here including myself had worse curves as teens and waited many many years.....I waited for technology, so waiting 34 years when I did and doing this now are not the same scenario. Things are much better now.

They have done scoliosis surgeries on older patients....I don’t know the record off hand but I think it might be in the 80’s. So, if your daughter is 14, that’s 66 years from now. In other words, I think you can breathe a little and relax some. I wouldn’t wait this long since my 40’s were a painful period. If I could turn back time, I would have had my surgery at age 40.

Most that make it to being adults (age 18) that don’t have pain, usually wait to have surgery. These numbers drop off during the 20’s and then increase in the 30’s. I know I had pain in my 20’s, but it was something we learn to deal with and it wasn’t too bad. I can barely remember back to those days but I did have inversion boots back in 1982, so I guess I had some pain issues......I was snow skiing HARD, and had many brutal crashes, so we are not delicate. Its amazing what the spine can handle.

Every single surgeon and doctor told me that I needed surgery through the years. Even my Chiropractor, and they hate surgery! There were several patients he had with large curves and called us the “heavy hitters”. (smiley face) In the end, pain made my decision, so scary it took me a few years to actually set a date.

Now that you have 2 surgeons saying surgery, chances are that she will at “some point” need surgery. The question is when? The fact that they want to go to L4 isn’t the best thing, fuse to L4, and there is a strong chance that a revision would have to be done approx 20 years later to the pelvis.

Like I said, she has a good set of curves and I’m sorry. But I don’t think that its worth over worrying yourself over this. I also think that she needs to make her own decision, and there is a difference in making that decision as a child, and as an adult when we know in our own minds that it really needs to be done. As a parent who cares about our spines, we remember that when we age.....neglect or brushing it off as just a crooked spine can produce resentment, I know because this happened to me. You are a good parent, I want you to know this.

I just wanted to throw out some ideas and thoughts.....the forum is wonderful, if I make a mistake, someone will correct. I PM with patients and many of the times I will say “Lets throw this one up on the forum” as we do have some good posters here sitting at the table.

Here is my x-ray from 1993. I was 35. When I was 16, I had twin 50’s, so it didn’t move all that much in that 20 year period. My lumbar was also pretty bad at age 16.
My x-ray is from the back, your daughters is from the front. So simply invert.

Also, doing nothing is also an option.....This might sound crazy, but it happens all the time. You don’t have to make a decision because someone says so. Doing nothing is also a decision.....

Ed

susancook
12-14-2013, 03:34 PM
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
12-14-2013, 03:38 PM
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
12-14-2013, 04:17 PM
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
12-14-2013, 08:38 PM
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
12-14-2013, 08:49 PM
coolblue, I like your thought process.

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

coolblue
12-14-2013, 10:19 PM
Thank you Pooka. Every drop in the ocean counts. Lol.

susancook
12-15-2013, 08:57 AM
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
12-15-2013, 01:07 PM
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
12-15-2013, 01:21 PM
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
12-15-2013, 08:23 PM
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
12-15-2013, 09:25 PM
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
12-15-2013, 09:39 PM
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
12-15-2013, 09:40 PM
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
01-02-2014, 01:32 AM
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
01-05-2014, 01:41 PM
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.....

rkochis
01-09-2014, 07:27 AM
Coolblue
I have been communicating with a mother in India that has a 14 y/o daughter with virtually the same condition as yours. She has developed an exercise therapy with a Physiotherapist that has made significant improvements to her daughters condition. The before and after pictures are remarkable. She asked me to reply to your post so that she can share with you her experiences.

You can reach her at narayankpl@gmail.com

Good Luck
Randy

mariaf
01-09-2014, 09:00 AM
Even we are interested in what Dr. Hey thinks as well as feedback from Shriners. Hopefully they would reply soon.

Who did you contact as Shriners and when?

I am just trying to recall. Due to the volume of patients they see, sometimes you need to 'remind' them that you are waiting for a response. They won't mind at all.

Best of luck!

coolblue
01-09-2014, 09:34 AM
Thank you Randy. Have sent them an email . Looking forward to their response.

Maria - Spoke to Dr. Hey's assistant. She looked at the Xrays and said that the fusion would go down to L4 if not L5.

For Shriners we had written to Crystal James mid December and then later sent them a followup email. Would send another reminder today itself.

Meanwhile we are getting a Torso Rotation Machine made in here so that we can start the exercises at home. The equipment should be delivered by next week.

mariaf
01-09-2014, 09:44 AM
Which doctor does Crystal James work with and at which Shriners hospital?

I am hoping somebody can perhaps give you another contact for the doctor.

coolblue
01-09-2014, 10:05 AM
Crystal James is the New PAtient intake Co-ordinator at Shriners Philly. Have asked him to connect to Dr. Betz.

A copy of the mail has also been marked to Janet Cerrone and you as well.

Would love to have any other contact for Dr. Betz.

Thanks

AMom
01-10-2014, 02:12 PM
[QUOTE=coolblue;
...Meanwhile we are getting a Torso Rotation Machine made in here so that we can start the exercises at home. The equipment should be delivered by next week.[/QUOTE]

“…She has just been for her six monthly checkup and as per the X-rays the curve seems to have gotten much worse. It has progressed by a whopping 11 degrees in these six months….

Her details are as under :
Age : 13 years 8 months
Scoliosis detected on : 16th April 2013
Cobbs Angle at time of detection : 33degrees for the Lumbar Curve as per X Ray report.
Cobbs Angle Currently : 44 degrees
Menarche : March 2013
Growth in Height during last six months : 5 cm. Current Height : 154 cms
Gain in Weight during last six months : 2.5 kgs. Current Weight : 41.5 kgs.
Visual Balance : Good. Difficult to make out that she has scoliosis from visual appearance.
Pain : No Pain. She can do all her activities normally.
Braces : Not opted for perhaps due to the x-ray showing a Risser 4 and the fact that it would have a psychological impact on the child not to mention the obvious discomfort.
Current Regimen (For Past Six months): Aggressive yoga (Iyengar Yoga) and swimming exercises. (avg one hour daily)
MRI : Clear. No Neurological Deficit found.
Spirometry : Clear
Eco-cardiogram : Clear
Latest Advise by Doctor : Full Fusion Surgery as early as possible.”

While some structural thoracic curves reduce in size (≥5˚); I have never come across a claim of TR reducing a structural thoracolumbar curve. And, there is little discussion with regard to the impact of TR on a structural lumbar curve. I would tend to be hesitant with the use of Targeted PT on a 44˚ lumbar curve that has progressed 11˚ over six months. Even if it does stabilize the curve while she finishes the final portion of her growth spurt, it will leave her in a position of curve progression throughout adulthood being more likely; wear as surgery now may provide her with better quality of life for decades to come. Either way you go, this is a difficult decision.

TR does appear to stabilize curves under 40 degrees (I am contacted by a handful of families every month), however, the results for curves over 40 degrees are not consistent (some are stable, but many are not).
Generally speaking, curves that are less than 30 degrees are less likely to progress than those over 30 degrees; while curves between 40 - 50 degrees are more likely to progress over an adults’ lifetime.

Since your daughter has begun her menstrual cycle and has a Risser 4, her remaining growth spurt should (generally speaking) be at a slower rate with little growth left. However, your message states that five ortho’s are recommending surgery ASAP, so maybe the possibility of the addition of another vertebrae to her lumbar curve is causing concern regarding the impact on her potential surgery. I am not a medical professional so I can’t say what they are thinking.

Best wishes on your daughter’s outcome.

A Mom

BTW, MedX CTR is the only TR unit used in research. There have been positive reports on Cybex TR units as well. There have been no positive reports on other TR machines (I am guessing their design is not focusing the workout on the necessary muscle groups.) There have been reports of injury on other units.

mariaf
01-10-2014, 02:45 PM
Crystal James is the New PAtient intake Co-ordinator at Shriners Philly. Have asked him to connect to Dr. Betz.

A copy of the mail has also been marked to Janet Cerrone and you as well.

Would love to have any other contact for Dr. Betz.

Thanks

I knew there was a new intake coordinator but everyone still seems to go through Janet (which I would recommend). Yes, I got the e-mail that you also copied Janet on. I would focus on connecting with her. I just e-mailed you a phone number for Janet in case you don't have it.

Best of luck!

titaniumed
01-10-2014, 07:59 PM
Maria - Spoke to Dr. Hey's assistant. She looked at the Xrays and said that the fusion would go down to L4 if not L5.

Meanwhile we are getting a Torso Rotation Machine made in here so that we can start the exercises at home. The equipment should be delivered by next week.

Cool, I’m wondering if there was any other information from Dr Hey’s office on your daughter? Did he say, better sooner than later? Did he say that she could wait?......did they say a full T2-L4, possibly L5 fusion? Anything else of importance?

I sure hope you report on how this all pans out with the torso rotation machine.....of course, your going to have to x-ray often to monitor her curves. How often, I cant say, but it would be good if you had a local surgeon do the monitoring......

Things are going to be ok.

Ed

coolblue
01-30-2014, 11:16 AM
Here are the excerpts of my meeting with Dr. Lenke last week :

Surgery looks imminent was his opinion when we met us. He was ok with us waiting and watching while monitoring the progress of the curve. As per the current curve progression he felt that a full fusion from T3 to L3/L4 could be advised. Though from his talk I felt he would try his best to save a lumber level which I felt would be absolutely wonderful.

He also felt that my daughter would more likely than not be a candidate for a future (maybe after 20-30-40 years) revision surgery for fusion till the pelvis due to disk degeneration of the remaining lumber levels – a point that has been made earlier in the forum by

He felt that our efforts on PT , Yoga, Scroth, TRS which though have not yielded medically proven benefits would not harm but in fact be helpful in keeping the curve flexible which was beneficial in the long run.

He advised her to continue to be active in sports as well as concentrate on her studies because that too is important!!! WOW. Spoke to my daughter like a parent does. Also advised her to stay slim.

Was gracious enough to be willing to accept her as his patient if and when we do decide to have surgery. Such a relief to have one of the best in the field as her surgeon. He even encouraged us to keep her records posted to him via email after her six monthly xrays are taken to review our call on surgery and help us in monitoring her progress.

Also agreed with my logic for waiting to keep options for non surgical treatments that may be round the corner. He said that tethering was an option for thoracic curves but till date so much for lumbar. But seemed hopeful regarding the progress in these areas and something could work out for now. Fingers crossed.
He spent a fairly long time with us in the lobby of a hotel reception in which he was staying and attending a conference. It was indeed very nice to have met us in the middle of the conference. To top it all he refused any consulting fees despite our insistence. We really felt humbled by the entire experience to say the least.

Thank you Dr. Lenke.

titaniumed
01-30-2014, 08:42 PM
He even encouraged us to keep her records posted to him via email after her six monthly xrays are taken to review our call on surgery and help us in monitoring her progress.


Very well done....I think you had an excellent meeting!

Be sure to keep us posted!

Ed

Pooka1
01-30-2014, 08:54 PM
Dr. Lenke... what a guy!

susancook
01-31-2014, 02:32 AM
I am glad that you are gathering information in making your plan. It must be a challenge to try to negotiate visits from India. Is that where your family lives now? You sound like a great advocate for your daughter. I wish her the best! Susan

mariaf
01-31-2014, 11:19 AM
Dr. Lenke is definitely one of the good guys - both in and out of the OR apparently.

And Coolblue's daughter is very fortunate since he is willing to literally travel the globe to get her the best care possible.

coolblue
01-31-2014, 02:02 PM
Thank you Ed, Polka,Mariaf, Susan and others. I simply preparing for the worst and hoping for the best. As probably all of us are. Tomorrow the TTS machine is going to come in. Shall try to post videos and photos of the same.

coolblue
10-17-2014, 04:45 AM
Guys,

Sorry for the long absence. Since my last post in Feb these we have had two xrays one in Aug and the other in Oct. Both of which are attached here. The lumber curve has increased to 60 and in the second the thoracic has also gone up to 55. Apart from that there is a pronounced cervical tilt and now some noticeable trunkal shift as well.

Looking into the above we have decided to no longer delay the surgery and try and book an appointment ASAP. The Surgeon is Coimbatore (India) based Dr. Rajashekheran Reddy who is fairly accomplished in this field.

During my meeting with him he did say that he would do the surgery T4/T6 - L4/L5 using latest instrumentation but did not specify which ones. Also heard that he does use some kind of robotic guided surgery but not sure if the same would be used in my daughter's case.Should I ask him ? Also my daughter is keen to know the possible height gain and extent of her curve correction as well as corrections in hump, pelvic tilt and side curves. Shall be asking him via email though not sure he would appreciate us asking him so many specifics. Would love to have your views on the same.

Tough decision but whats got to be done - got to be done. Anyways after having tried all possible options at least wouldn't feel that we did not try our best.

Thank you all for your encouraging and helpful posts. I'm sure these are read by tens of thousands who are unable to post but benefit from shared experiences.

Pls do keep your inputs coming in regarding preparations for the surgery. My daughter is especially keen to know things she can or cannot do after surgery. Have told her that skydiving and rugby is off.... LOL

1656
1655

leahdragonfly
10-17-2014, 08:06 AM
Hi Cool,

It sounds like you have left no stone unturned in your daughter's care…I am sorry she will need surgery. I do think you have every right to ask any and all questions that you want answers to. My experience is I have gotten very brief answers to any e-mailed questions to doctors, if answers at all. Would it be possible to have another appointment and pose these questions? That way you may have a dialogue that can be more informative.

Best of luck, and please do let us know how things are going.

Pooka1
10-17-2014, 08:24 PM
coolblue,

Glad you checked in. Very sorry about the progression.

I think if you make a list of questions for the surgeon he or his nurse will respond. I am guessing there will be very little he says your daughter can't do after she recovers from surgery and the fusion is solid. I am further guessing she will likely be restricted from certain activities for about a year, maybe less. He will tell you.

Your daughter and your family will get through this and move on. It is ~6.5 and ~5 years post surgery for my girls and the subject never comes up. They have moved past this and your daughter will also.

Best regards,
Sharon

titaniumed
10-18-2014, 01:19 AM
Cool

I personally would ask about the robot assist just out of interest....This is a valuable tool.
http://en.wikipedia.org/wiki/Mazor_Robotics
http://mazorrobotics.com/the

Her plumb line and shoulder heights are way off in the October x-ray.....There is quite a bit of difference between both x-rays.

I really don’t think you can dodge this much longer and agree with the cervical issues and shifting. Her plumb is now way off.

If I had to guess on gained height, it would be around 2 inches....and end up with a substantial correction. Rib humps are usually improved quite a bit after surgery.

Ed

coolblue
10-18-2014, 07:19 AM
Thank you Gayle, Ed and Sharon. Have sent the list of questions to the Doc. Surgery set for 3rd of Nov. Fingers Crossed.

Can anyone let me know where to find a checklist for both pre-op and and post-op in the case of adolescent surgery (esp for girls). Am also looking for what to expect kind of a guide.

Any past posts would be of great help. Shall keep the group posted wrt developements.

Meanwhile how does one have this post moved to Surgical and its thread title suitably modified. Any suggestions.

Best regards,

coolblue

titaniumed
10-19-2014, 12:14 PM
Cool, I don’t know what kind of checklist your looking for. I have attached a prep list....

Ask if you have any questions....

For example, Grabbers sometimes are provided by insurance companies here in the US. If not, you can save the money and use Barbeque tongs.

I'm not fond of using step stools on medications, this is a great way to promote a fall. If a patient cant reach something, so be it. It can wait. Do anything to prevent a fall.

Hope this helps....

Ed

susancook
10-19-2014, 05:55 PM
Wishing your daughter the best on her upcoming surgery. My only last thought is: be prepared for something to go wrong, in my experience in talking with folks, do not be surprised. Most everything is fixable as it just is a bump in the road. We all hope for a very smooth course with surgery because of all of the prep that we do....just be ready for a bump in the road. With my last surgery it was a pulmonary embolism, certainly scary when it happened but really minor in the scheme of things.

You sound like such a caring, awesome parent. I wish your daughter fast healing and you, peace.

Susan

coolblue
11-03-2014, 11:46 AM
My daughter's had her surgery today. She's fused T4 - L4. Doctor seemed very happy with the correction. Currently she is in the post operative ward and loopy with the sedatives. We hope to have her back in our room tomorrow. Relieved that it all went off well but it is heart wrenching to see your little girl in so much pain. Gingers crossed she will get over this soon and not remember these painful moments later on.

Thanks again to all the members on this support group and those with whom I have corresponded offline. The journey was much more manageable thanks to your support and inputs.

Shall keep you updated on the progress.

jackieg412
11-03-2014, 12:59 PM
Glad all is well. What a relief to have her through surgery. The first days are rough but children are remarkable.

Karen5
11-03-2014, 01:44 PM
Glad to hear the surgery went well! My daughter's surgeries start next week, and she'll likely be fused at the same levels, so I'm glad to know someone else whose daughter is going through the same fusion. Hope your daughter recuperates quickly!

hdsluckygirl13
11-03-2014, 03:34 PM
Thanks for keeping us updated. Glad that it went well. Keeping you guys in my thoughts and prayers. Big hugs =)

coolblue
11-05-2014, 07:50 PM
We are back in the room. Day 2 was very rough. They had stopped the morphine because if its nauseating side effect. So when my daughter was not writhing in pain she was uncomfortable with nausea. Thankfully things got better as the day progressed and she was feeling much better after they transferred her in the room yesterday.

Yesterday, she could turn on any side as well as sleep on her back. Today they would try making her stand up and walk in the room.

Our room is more like a suite so the entire family is with her. During the day my parents too drop by ( they are staying at a service apartment close by). Hopefully things would get better from now on.

Pooka1
11-05-2014, 08:12 PM
coolblue! Thanks for that update. It sounds like she is making quick progress!

I think you will be amazed how fast the recovery is. Your daughter is a star!

hdsluckygirl13
11-05-2014, 09:02 PM
So glad that it went well, and she is in a room with family. You sound like you are holding up really well too mom. Give yourself a pat on the back. Big hugs!!!

coolblue
11-05-2014, 09:33 PM
So glad that it went well, and she is in a room with family. You sound like you are holding up really well too mom. Give yourself a pat on the back. Big hugs!!!

Hey Crystal,
Thanks for your good wishes. Actually I am the dad but moms been holding up great. Shall give her a hug a desired. :).

My daughter is feeling constipated today. Any suggestions would be welcome.

Coolblue

LindaRacine
11-05-2014, 10:17 PM
I don't know about kids, but I think most adults are put on this regimen as soon as they start swallowing food and medications. "Mush and push" is the mantra. An over-the-counter senna combined with docusate sodium product will do the trick. Also, tell her to let her bowel do the pushing. Tell her to bring a book or other distraction to the bathroom, and just let nature take it's course. Pushing usually makes things worse.

coolblue
11-05-2014, 11:40 PM
Thanks Linda. Dunno about the laxatives but last night they gave her a suppository which did not help much. Anyways have got the doc to prescribe an anema which seems to have helped. She's feeling weaker but would get better as the day progressed.

Thanks to all of you for just being there.

springchicken
11-06-2014, 02:58 PM
Hi there,
Thinking of you guys and hoping your daughter heals quickly! One thing she might try for constipation when out of the hospital is warm prune juice. Sounds kind of gross but I found it helped. I used to just pop a glass in the microwave for a little bit.
Hang in there!
-spring

coolblue
11-19-2014, 02:06 AM
Hey Guys,


All your prayers and wishes worked !

We are back home. Dear daughter is fine and is already moving around albeit with braces. Normal diet ( a bit extra thanks to her protective parents to try and increase her heamoglobin levels).

She is about 1.5 inches taller and is waiting to show off her new found height gain to her friends. All the pain, nausea, dizziness are a thing of the past.

As of now she has been prescribed pain meds on SoS basis which she has not taken yet. She is fused T4 to L4. Her curves are in single digit along with a good correction of the rotation as well. She has been fitted with a Co-Cr rod along with a Titanium Rod. I have noticed a slight bit of left chest wall protrusion and a slight forward lean but the doc says it would all fall in place.

All of us are very happy with the outcome. Fingers crossed.

Coolblue

Pooka1
11-19-2014, 06:19 AM
That's such great news, coolblue!

Kids recovery pretty quickly. She will seem back to normal before her activity restrictions are lifted if she has any. That is the hard part... reminding them to take it easy when they feel completely fine.

Onward and upward!

Pooka1
11-19-2014, 07:20 AM
Her curves are in single digit along with a good correction of the rotation as well.

This seems like the key to avoiding another surgery. We have a woman on the group who was fused I think 6 years ago to L4 and her disc below that is fine. Hopefully now that your daughter's spine no longer technically has scoliosis (<10*) and was derotated, she will be okay for life. There was an article recently about how hyper correction matters in terms of disc health below the fusion. I will try to remember where I saw that. It's why Dr. Hey stands on his head to correct lumbars.

Pooka1
11-19-2014, 07:24 AM
Here it is... it is only when I wrote about Dr. Hey that I remembered it was on his blog...

http://drlloydhey.blogspot.com/2014/10/can-realignment-of-adolescent.html


What is really cool about Dr. Lafage's research is that she was able to show that over the 2 years after scoliosis surgery, the lumbar discs actually REHYDRATED after the surgical realignment of the spine above the discs. This happened at ALL lumbar levels when the pelvic incidence was low (most common in AIS), and in some levels with high pelvic incidence (PI). This research suggests that the realignment was actually REVERSING the early damage to the lumbar discs, which would be our hope to allow those lower 2-4 lumbar discs to last the patient another 80+ years!

jrnyc
12-18-2014, 12:22 PM
off topic....
(sorry)...

Sharon....your messages are full...

jess...and Sparky

Pooka1
12-18-2014, 03:40 PM
okay I'll empty them.

coolblue
04-15-2015, 02:45 AM
Hi Everyone,

Just wanted to update regarding my daughter's progress. She is now 5 month post-op and doing great. In fact looking at her another classmate of hers opted for surgery with the same doctor.

Last month over video conference the Doc allowed her to start swimming. She is doing great apart from feeling stiff and sometimes sore as a result of the stiffness. Yesterday we went to consult with the local doctor who was very impressed with her correction.

There are some concerns / queries on which I wanted the groups advise:

1. She still has a significant arch (high lordosis) which causes her chest and bums to protrude out. The local doctor looked at the xray and said that from the film everything looked great and probably the body would adjust in some time. My wife is very concerned with this as her gait looks very odd. Will the body eventually adjust.

2. Her school is organising a trip to the US next month where they would be visiting among others Universal Studios and Disney World. My daughter is super excited and crazy about adventure rides like roller coasters etc. The local doctor is not comfortable with it. It breaks my heart to tell her not to sit on them after going so far. Nonetheless I promised her to post it on the forum

3. To help sore back whilst sleeping should I invest in a memory foam topper? Will it be of help.

Look forward to your thoughts

CB

LindaRacine
04-16-2015, 09:28 PM
coolblue... What levels were fused? Would it be possible to post a photograph of her lateral postoperative xray?

While I would never recommend that you suggest that your daughter disobey the surgeon in terms of riding roller coasters, I think most surgeons remove pretty much all restrictions on kids at about 6 months postop.

It's hard to know if a memory foam topper will help your daughter. We're all so different, and I don't think any of us really know about such things until we try them. I used soft memory foam toppers for many years, and loved the way they feel. Then, I ordered a memory foam bed for my guest bedroom. It's far firmer than any of the toppers I used. And, for some reason, I really love it. I swapped my top of the line Sleep Number bed for the cheap memory foam bed, and can't imagine ever switching back. The good news is that (at least in the U.S.), the toppers are pretty inexpensive, so trying it isn't too much of a risk.

--Linda

coolblue
06-04-2016, 06:25 AM
Hi All,

Just wanted to update you that my daughter passed her class X exams by securing max possible CGPA of 10. Is a great achievement for her considering she had her surgery during Class VIII and the whole year was a washout at least as far as her studies were concerned.

She is otherwise doing great and living life as normally as a teenager would. She does swimming as often as she can. I'm trying her to start yoga as this would help her throughout her life. Would go back to the doctor in about six months time for a review but hopefully things would be OK.

We consider ourselves blessed that it all worked out well in the end. Thanks again to all fellow members who chipped in with their words of advice and encouragement.

CB

Pooka1
06-04-2016, 01:36 PM
Excellent news about your daughter's achievements, both academic and recovering for surgery. Thank you for updating the group.

For parents who are honestly worried abut life post-fusion, I think they should try very hard to imagine what their child's life would be life without the surgery. In my case, I believe one or both of them would be dead (fast-moving curves that may never have stopped curving) and neither would have had a high school much less college career because they would be so twisted up they may never have left the house.

I am not saying all kids who need surgery but don't get it would have a bad outcome. I am saying there is reason there is a near total consensus on fusing certain curves in adolescents. There is a reason for that.

susancook
06-06-2016, 04:42 PM
So glad that your daughter is doing well.

Jerky rides? I do not suggest it! She has the rest of her life to do the roller coaster, but this soon after surgery, probably not.

Memory foam topper? Ahhhhhh....... Highly recommended. Do you have friends that have a memory foam topper? Maybe she could try theirs first. I purchased mine at Costco (? Do you have access to Costco?). I love it!

Wishing her continued healing.

Susan

titaniumed
06-07-2016, 07:48 PM
Cool, thanks for chiming in with the good news on your daughter. Tell her I said congratulations! (smiley face)

Ed

coolblue
05-08-2019, 06:14 AM
Hey Folks,

Apologies for the long hiatus. Its gonna be 5 years since the surgery and everyone who sees the xrays talks about the spine surgery being like a work of art. We were fortunate to have been operated by Dr. Rajshekheran and his team at Ganga Hospital in Coimbatore, INDIA. I believe they are among the foremost in the field of Spine Surgery in this part of the world and I would unhesitatingly recommend him.


Daughter is doing great. One Appendix surgery and a knee ligament partial tear later (sigh) she is in first year of college and loving every bit of her independence. Scars have also become lighter and she does not seem too conscious about it.

Thanks again for all help, support and good wishes during those trying times.

God Bless....

CoolBlue

Pooka1
05-08-2019, 06:51 PM
Coolblue! Great hearing from you about your daughter's amazing progress and really her return to a normal life. It sounds like the surgery was a complete success and your daughter has moved past scoliosis.

For our family, we have moved completely past scoliosis and it just never comes up. My daughters lead normal lives. One is doing her second internship that requires lifting heavy weights and being out in the wilderness. The only reason she is upright and functional is the surgery.