Surgeon consult plus some opinions

[Pooka1]

Melissa!

Thank you very much for posting that testimonial.

I will be asking the surgeon some very careful questions about the average and range of recovery times for a patient like S. There is something potentially amiss here.

Thanks again. I really appreciate your writing.

[sccrm08]

Pooka1

I am just wondering if your Dr. has told you how long a fusion S will need? It could make a diff. in the recovery time.

[terri watkins]

so true

I hate to dampen your spirits, but nobody is ever DONE with scoliosis. I wonder how many parents were told the same thing years ago when their children were having corrective surgery with Harrington rod instrumentation. Scoliosis is a chronic disease. It can be managed but it cannot be cured. Children and adolescents certainly fair well much better following this surgery over adults, but for any surgeon to tell a parent that their child will be DONE with scoliosis is simply misstating the facts.

Hi,
From everything I have read regarding scoliosis, it is trouble from the onset and on through the lifespan... I have been reading alot about vetebral body stapeling... This seems as though it could be a good alternative for children if the scoliosis is caught and treated with vbs early enough... I have a 14 yr old son with a 47* curve in brace, so I think it's a little late for that for him... I wish I would have known about this proceedure when his curve was smaller... but, our ortho never offered anything except a brace and rods. I surely hope parents will really educate themselves related to surgery for their children and not go into it with unrealistic expectations for the future, My son is facing the possibility of rods and I am scared to death... I am getting all the opinions I can and praying for the best that is all I can do.

[terri watkins]

Hi

W is doing more research. I will also.

Thanks again.

sharon

My name is Terri Mother to Alex 14 yrs old... I have only recently found out about vbs. It was never offered through our ortho Dr. I wish I would have known about vbs when my sons curve was small enough and flexible enough to have this proceedure... now, the only option I am afraid will be rods. We are going to go to philly to get another opinion and discuss all alternatives ( if any) that are left. I am scared to death of having the rods placed in my sons spine... such a long incision... possibility of the rods breaking ...no flexibility..their torso doesn't grow anymore and alot of other issues I have read... It never hurts to get all the opinions you can get. My son goes to a ortho Dr. at Duke hospital in Durham, N.C. He doesn't have experience with anything but traditional rod placement... I would like to think he keeps current on advances made in his profession, I am told he is the best on the east coast. I guess it all comes down to you get opinions, you sort through them.... you pray...and trust your gut... It is your child and noone can decide but you ( a heavy burden to bear).
Good luck

[Pooka1]

Pooka1

I am just wondering if your Dr. has told you how long a fusion S will need? It could make a diff. in the recovery time.

No but I'll ask. I'm trying to wrap my mind around a surgeon deliberately and grossly (i.e, halving the recovery time) misrepresenting this to me and I'm having trouble doing so. But that's my lack of imagination perhaps.

I was reading some testimonials over on spinekids and some of those kids were in the hospital less than 5 days. One said three days if I recall correctly.

[MATJESNIC]

Terri,

Good luck with your son. Remember that even though it is a major surgery and a long recovery, this surgery has come a long way over the years. This isn't what we want for our children, but our children will most likely get through their lives like everyone else. Yes, there are exceptions. But most of these kids fare well. It is heartwrenching, I know. But what works for me is to talk to and get to know as many people as possible who have gone through this and come out with flying colors. Thankfully, I have met many children who fall into this category. If your son gets this surgery, you will make sure you have a top experienced surgeon and your son will do well.

Please keep us posted.

[Pooka1]

Hi,
From everything I have read regarding scoliosis, it is trouble from the onset and on through the lifespan...

(snip)

I surely hope parents will really educate themselves related to surgery for their children and not go into it with unrealistic expectations for the future, My son is facing the possibility of rods and I am scared to death... I am getting all the opinions I can and praying for the best that is all I can do.

Hi. I know this is such a burden.

Can I ask you a little about what you wrote? It is similar to what others write in terms of reason they want to avoid spinal fusion surgery.

As far as I can tell, all the reason I've read so far fall into the fear and "yuck" factor category. I can understand this and I have a certain amount of fear and yuck over the thought that S needs this surgery now and W likely will need it in the future.

But I try to calibrate my fear and yuck reaction to the facts of the surgery and beyond. The extremely low morbidity/mortality, the testimonials from folks who have had the surgery a while back and report no problems, not restrictions on their life, etc., etc. As I've mentioned, based on the reading I have done for bracing, I told W if it were me, I would forgo the brace and just wait and see if I needed the surgery. But W gets to decide this (with input from her father and I), not me.

I have had surgery twice (appendicitis and a "spectacular" ruptured ectopic wherein I lost almost half my blood volume into my abdomen). I would be dead twice over without those. Needless to say, I am a fan of surgery! And as things stand now, it is not obvious to me that my ruptured ectopic operation in the state I was in carried a far higher morbidity/mortality risk than spinal fusion surgery for S. That is to say, based on my reading,. if I had to bet money, I would guess the ectopic surgery was far risker than modern spinal fusion surgery.

A sense of proportion always.

The fact is that for certain scoliosis cases, the gold standard treatment in spinal fusion surgery. It was improved greatly over the decades. We can't know if there will be problems down the road but for now, I don't believe any have been documented with the type of hardware S will get. Equally, I don't know that I won't get hit by a bus tomorrow. Some days, I wish I was. (Just kidding!)

Thanks for your thoughts. Always interesting to get others' perspective.

[terri watkins]

ok

My son has had multiple surgeries, one heart surgery... cleft palate repair and numerous other life threatening surgeries... I am not ... nor will I ever be a "Fan of surgery"...As I said previously it is an individual decision and need. What I have noted previously with my sons surgeries is that some physicians give you the down side of the specific surgery and some give you the up side... Also the two surgeries you referred to that you had are both acute episodes... having to be dealt with immediately no time to research options etc. Scoliosis is chronic... and usually there is time avalable to discuss treatments/ options...as I have been desperately attempting to do..As for the Yuck factor... what exactly is that??? I hadn't even considered a factor such as Yuck... I only have considered my child's well being now and in the future.

[Susie*Bee]

Terri and Pooka1

I'm so glad both you ladies found this forum and are so diligent about your children's well-being! There are so many parents out there (in the general public, not on this forum!) that are lousy parents, so I admire you both for your care and concern and obvious love for your children. I look forward to reading much from you both in the future. I am not a mom of a child with scoliosis--just an older scoliosis survivor who had surgery this past year, so you can take anything I say with a grain of salt, chalking it up as you see fit, to "she just doesn't understand..." But I think what I'm about to say can apply to most scoli patients/families, irregardless of age.

As you well know, scoliosis and its "procedures" (for want of a better word) are not a "one size fits all" condition. We build our parameters for treatment/non-treatment based on what we, as individuals, conclude is best in our own situations. So many facets go into building those parameters, including our personalities. It's good to know what others think, the research they have done, how their children fared, etc., --but when it gets down to the nitty-gritty of making decisions, we each have to make our own based on what seems right to us... I know everyone must realize there is no "best" decision to make, or there wouldn't be the wide variety of choices before us. In terms of treatment, the wisest counsel I could possibly give is to seek guidance from more than one experienced, board certified scoliosis specialist and also research (as you have been doing) the options/challenges/results of various procedures. Choose the specialist you feel the most confidence in. Gut feelings are important here too, and you will be seeing this doctor for a long time (unless it doesn't work out) and will be depending on his/her opinion for direction... Only you know your child and your situation and all the other personal, medical, emotional, and even financial aspects that will come into play once you decide on a course to take. I think when the time comes to make a decision, both your heart and your mind will tell you what to do. Regardless, it is a major decision and I'm sure no one is ever at ease totally with the decision. We pick not necessarily from what is "best"-- but sometimes rather from what is "the least worst"... and we all tend to second-guess ourselves. Or at least I do... but once a decision is made it releases all that anxiety over what to choose--and then you can work on making your decision work out in the best possible way for you and your loved one(s). I really believe both of you will do a great job in that way. Keep up the questioning and searching. The more you know, the more you will feel well-informed and confident in your decisions. Best wishes for the road ahead.

[MATJESNIC]

Susie,

I agree with everything you just said. Well said.

[Pooka1]

Susie*Bee,

Thanks so much for the words of encouragement!

I greatly admire your positivity.

I agree it's important to be comfortable with the surgeon.

I had done some small amount of research so far and come to certain tentative conclusions about various things. And there I was in the office with the surgeon and he was saying some of those same things. It is the closest thing to kismet I have seen in a long time.

He was clear, concise, open, willing to talk to my girls and not just my husband and myself, etc. My girls have done more research to date but we a bit quiet in the consult,not knowing what to expect. I tried to remember some points they made when I talked.

Now maybe both the surgeon and I are out to lunch, I don't know.

I just know we were on the same wavelength before we met and are more so after the consult. It's a good vibe. He has all the right schooling, certifications, advanced training, experience, etc.

This guy can and will fix my kids. No miracles operative or necessary; Just his hard work, expertise, and caring.

[Sherie]

Hi

I just wanted to chime in here. I have 2 children that have both had surgeries. My son just had his 3rd eye surgery last year for strabismus, it looks like this is going to be a chronic condition, my daughter had appendicitis which required surgery and spinal fusion in Nov.

Nothing can compare to the spinal fusion. She was in the OR for 8 hours, intensive care for 24 hrs and stayed in the hospital a total of 8 days. It was the worst week of my life. It is hard to see your child suffer that much. Not sure wether she had a typical stay, she had a long fusion but I've spoken to other parents who's kids had an equally difficult time, but everyone is different and I guess there's no sense in assuming the worst case (although I have a very bad habit of doing just that). I researched extensively and talked to many people before surgery so I wasn't going into this blindly. The first 3 weeks were pretty rough too, thankfully, it's a temporary phase and the kids do seem to recover pretty well. She's doing very well at 3 months post-op. She went back to school at 7 weeks because we timed it so she would go back after the holidays but she would not have been ready at 4, I think more like 6 weeks would have been ok.

Sheena had to have surgery or her quality of life would have been compromised, she was already experiencing enough back pain to interfere with some activities such as biking and long walks. I don't regret her having the surgery but, like Melissa, I will always worry more for her because of it. On a positive note, I think she's more confident and we've grown much closer because of this experience.

We went to 4 doctors before finding the right one. Even if you're very comfortable with the first doctor you see, it never hurts to get another opinion. You never know what valuable information you might get.

Best of luck to both of you,

[CHRIS WBS]

We went to 4 doctors before finding the right one.

For this kind of surgery, I don’t believe you can ever see too many doctors. I consulted with a total of six surgeons. Within the first five minutes of my visits with the first two surgeons, it became apparent that advanced adult scoli was clearly out of their area of expertise (even though they are both active members in the SRS Fellowship Registry). In fact, the second surgeon even encouraged me to get other opinions. Out of the remaining four adult scoli specialists, three wasted no time in recommending surgery for me, while the lone doctor never gave me a recommendation. I had to go with the majority rule. And then I turned everything over to God and prayed that I be led to the doctor who is right for me. I was preparing myself to go out of state, but God had other plans for me and redirected me elsewhere. I will be seeing this doctor next month to set a surgery date. I have witnessed little miracles throughout my journey. Just this morning before I left for work I prayed to my favorite saint asking her to send me a Valentine rose to let me know that my surgery will go well and I will suffer no complications. This afternoon I received a call from our cafeteria here at work. They were raffling a Valentine rose cake which I won. It was just brought up to me. It’s beautiful and covered with big red roses. I still have goose bumps. For all those in pain, never give up. Prayer is powerful.

Chris

[lelc2002@yahoo]

wow Chriswbs!!! I do too, believe in these type of signs/miracles leading you along your way! Have faith you are being steered in the right direction....Lynne

[Pooka1]

I wonder if there is a good correlation between length of fusion and recovery. Is it that the person is under anesthesia longer for bigger fusions? Is it mostly a function of complications encountered?

I'll ask how long S's fusion will be. As far as I know, she has a single right curve on the thoracic region.

Oh I just remembered something else the surgeon said. Although my girls are tall, they have a Risser of about zero (they are 13 y.o.) and I asked about the growth issue. I mentioned that the referring orthopod said that the spine completes growth first and then the limbs. But I think someone here said the opposite. That is, the limbs finish growing first and the spine last.

Well the surgeon told me there is no set pattern and different folks have different patterns of growth. That would account for the disparate opinions out there.