Congenital Scoliosis - T4-T5 in teenager

[Pooka1]

Hi There,
I am 43 yrs old male with congenital scoli, hemi-vertebra at T7 and a couple of fused verterbrae. Never knew I had this problem till I started evperiencing weird symptoms like bladder problems, pain, inablity to sit etc. I have a 72 deg lumar and 40 deg Thoracic plus Kyphosis. No issues with the cord except some stenosis.
I am undergoing surgery this Aug 15. First surgery. I can share my experience post surgery (if I make it back in one piece ).
Congenital scoli is normally very poorly understood. All the 3 surgeons that I consulted recommended surgery because of the pain and gradual nuerological issues.
My take is that I have no regrets that I did not undergo surgery any earlier. I had a pretty normal life till I was 42. If symptoms
start showing up then it makes sense to do something about it.

Hi. Thanks for posting that. It's a very interesting testimonial.

Did the surgeon mention if it was unusual that the hemivertebra is not at the apex of the larger curve? I don't understand why your lumbar curve is the larger curve unless you have anomalies in the lumbar also.

[rajma]

Hi. Thanks for posting that. It's a very interesting testimonial.

Did the surgeon mention if it was unusual that the hemivertebra is not at the apex of the larger curve? I don't understand why your lumbar curve is the larger curve unless you have anomalies in the lumbar also.

What can I say, my spine is a mess .
Seriously though, you are right, its at T10. My scoliosis curves begin at T7. My CT says Partial fusion of T12-L1, T8-T9, T5-6. Right hemi at T10.
My curves are
47 deg right T7 to T12
73 deg left T12 to L4
21 deg right L4 to L5
Kyphosis curves
T2 to T5 5 deg
T5 to T12 26 deg
T10 to L2 44 deg
Lordosis is 39 deg
The apex of my main curves is at L1

[Pooka1]

What can I say, my spine is a mess .
Seriously though, you are right, its at T10. My scoliosis curves begin at T7. My CT says Partial fusion of T12-L1, T8-T9, T5-6. Right hemi at T10.
My curves are
47 deg right T7 to T12
73 deg left T12 to L4
21 deg right L4 to L5
Kyphosis curves
T2 to T5 5 deg
T5 to T12 26 deg
T10 to L2 44 deg
Lordosis is 39 deg
The apex of my main curves is at L1

That's quite the collection you have there. :-)

What levels will they fuse to?

[rajma]

That's quite the collection you have there. :-)

What levels will they fuse to?

The plan is T4 to L4. I guess it is subject to change depending on what else they find in there.

[titaniumed]

Hi Robin

Be sure to let us know what Dr Moriarty says...so sorry about the syrinx. I hope this visit happens soon. Its good that you are making headway.

I don’t think it matters much when a specialist in high regard makes a decision on which hardware company will throw him perks....I think it matters when a GP who has financial problems decides to push NSAID’s to pay the rent. There is a big difference...The hardware systems today are all excellent. In your sons case, its mostly about expertise, not hardware so much.

Do you have any x-rays you could throw up here? These would be interesting since it’s rare.

Same for you Rajma. Wishing you success on August 15th.

Ed

[rajma]

Hi Robin

Be sure to let us know what Dr Moriarty says...so sorry about the syrinx. I hope this visit happens soon. Its good that you are making headway.

I don’t think it matters much when a specialist in high regard makes a decision on which hardware company will throw him perks....I think it matters when a GP who has financial problems decides to push NSAID’s to pay the rent. There is a big difference...The hardware systems today are all excellent. In your sons case, its mostly about expertise, not hardware so much.

Do you have any x-rays you could throw up here? These would be interesting since it’s rare.

Same for you Rajma. Wishing you success on August 15th.

Ed

thanks Ed, I am fan of your postings.
I had posted my experience and perspective with one X-Ray here with a disclaimer that I am just a patient, not a doctor.
https://sites.google.com/site/scoliosis123/
I will update this once I have some more data.

[mariaf]

I don’t think it matters much when a specialist in high regard makes a decision on which hardware company will throw him perks....I think it matters when a GP who has financial problems decides to push NSAID’s to pay the rent.

Ah, so true. I recall when my mom was seeing a doctor for a pain problem several years ago (her knee, maybe, I can't recall) - she was hoping to do some exercise or PT (she hates popping pills and avoids even OTC meds unless she's in agony, me too). He was very smug and kept taking her copay and writing prescriptions - one of them for VIOXX, which hadn't yet been pulled from the market at the time. When she questioned him, asking if she could go for therapy in lieu of taking meds, he said 'who's the doctor, me or you?'. She basically said to herself 'screw you, doc' and took herself off VIOXX. A few weeks later, it was pulled from the market. Needless to say, she did not return to this doc. Oh, and I guess she was a better 'doctor' than he was.

[titaniumed]

thanks Ed, I am fan of your postings.

Thanks. It’s a combination of logic and silliness. Hopefully, more silliness.

This forum is about support and knowledge. All surgical decisions should be made by the people that are trained. We can look at our x-rays, and read our testimonials knowing that our decisions on treatment are in the hands of professionals. Always start with a scoliosis specialist.

I see your hemi at T10. Will they do a thoracotomy? Did they explain anything about procedure?

Will this be done in Toronto?

How do you feel about this? Are you ready?

Ed

[rajma]

Thanks. It’s a combination of logic and silliness. Hopefully, more silliness.

This forum is about support and knowledge. All surgical decisions should be made by the people that are trained. We can look at our x-rays, and read our testimonials knowing that our decisions on treatment are in the hands of professionals. Always start with a scoliosis specialist.

I see your hemi at T10. Will they do a thoracotomy? Did they explain anything about procedure?

Will this be done in Toronto?

How do you feel about this? Are you ready?

Ed

The procedure will be done in Toronto. My surgeon did not mention anything about thoracotomy. He promised that he will see how much he is able to get to correct before he decides on an osteotomy. Depends on the state of my ligaments etc. He thinks I will probably need an Osteotomy because of my hemi.
I am actually looking forward to the surgery. I am not so scared about the surgery (ignorance is bliss). I worry more about the immediate post op period with the daily bodily function stuff. Beyond that I guess a lot depends on how well my surgeon does the surgery and how well my body responds and heals, both of these are out of my control.
My surgeon told me that I have a better chance of winning the lottery than dying on the table. He also told me that in his 22 years, he has not paralyzed anyone, so that's good to know.

[AndiS]

Not sure anyone will see this.....but after our visit with Dr. Betz in June, we had the MRI done a few weeks ago. Just found out yesterday there is a syrinx.

Now, first of all, please realize, I KNOW how very blessed we are that Samuel has ONLY one hemi and ONLY one syrinx.....after reading on this forum, on the yahoo page, being on the Facebook group, I have seen how much some of you have gone through with your kiddos. I have learned so much from all of you and your experiences, and I do realize that our situation is not nearly as severe. Nevertheless, we are still having to be seen by doctors, still having to consider surgery, make decisions, etc. sigh.....

and I am looking to you all and your wealth of knowledge.....

At Dr. Betz's visit, Samuel's curve was measured to be between 42-46 degrees. His Rissar is 4. He was 5'6.5" in June. He was 5'7" yesterday.
His hemi is at T4.
Dr. Betz's recommendation is IF the curve gets to be 50 degrees, we'll do surgery, fusing from T1-T8.

The MRI showed a "think syringohydromyelia beginning at inferior T7 and extending to T9. Syringohydromyelia is also visulized between C5 and T1."

Our peditrician will be sending us to a neuro-surgeon - Dr. Thomas Moriarty, in Louisville, kY.

(I have decided to NOT return to Dr.Mitch Campbell in Louisville, KY at the Leatherman Spinal Clinic, due to his attitude. He actually laughed at some of the questions I had at our February visit. He didn't order full spine xrays, didn't check growth plates, didn't order an MRI, said surgery would never be necessary, etc.) He, in not so many words, told me I was worrying too much!!!! Well, the only doctors in this area who work with spinal issues are in the same group - so due to medical ethics, I wouldn't be able to see any of the other doctors, who actually have more experience working with kids!!!!!!!!! grrrr.

My only qualm about going to PA and using Shriners for surgery is that the doctors are reimbursed by manufacturers of materials used in surgeries....and that bothers me quite a bit.

OK, so that's the update.

thoughts, advice, your experiences??????

blessings...robin

oh robin...hugs! i'm so glad you got another opinion and further care for your son. regardless of the number of anomolies, this is scary stuff as a parent. none of us want to see our babes go through this, but we must do our best to help them do their best.

please keep us updated. sorry i don't have more to offer, Odella has more xrays in september...we are still very early in our journey.

[robinlbe]

Sorry I haven't been back before now. The very day of Samuel's appointment with Dr. Moriarty, the neuro-surgeon, was my first day back to school and it has been "life in fast forward" ever since then!!

The doctor was patient, kind, and very thorough! He looked at all our xrays from Philly (June), and before - not being able to see a difference, and looked at the MRI with us present. He said the syrnix is SO insignificant that we do NOT have to worry about it, nor do anything about it. In fact, he said we do not need to return to him. He showed us an MRI of another one of his patients (who had given him permission to do so) who had a "real" syrinx (his words), and we could really see the difference.

Because Dr. Moriarty works closely with the spinal doctors at Leatherman (the clinic here in town where the original doctor was found to be lacking in MY opinion), he and his staff said that the doctors there do NOT have a problem with patients seeing other doctors in that practice. There are two other doctors who have more experience with pediatric patients that the Dr. Campbell we saw. I'm thinking I'd like to get a third opinion, although I know Dr. Betz is the best.

As far as where I saw that the doctors are compensated for using certain companies' products, it was either on their website or the literature they gave us during our visit there. I'm about 95% sure it was on the literature we rec'd during our visit.

I'm glad to read that, was it Ed, maybe?? was able to wait until age 42 to have surgery? That's encouraging to me.

I just really hate to go into surgery if it's not absolutely necessary.....but yet, since we're sort of on the borderline, I don't want to mess up....
you know. NOT have the surgery if he's really going to need it, or HAVE the surgery if it would turn out he would be ok.

Right now, since supposedly he's at rissar 4, we might be ok. Here in the Louisville, KY area, they measured him 34-38 degrees, but at Philly he was measured 42-46. Surgery is recommended at 50.

But, Samuel is in no pain, has no numbness, etc.

anyway, I KNOW how blessed we are that this is SOOOO minor in comparison to what so many of you and others are facing.
There is an xray of Samuel on one of my earlier posts.
I'll go back and find it and on my next post, let you know which one to check.

Blessings...
robin

[robinlbe]

#26 posting has the xray which was taken in October, 2011.
this shows the congenital scoliosis and was the very first xray we had taken and the first time we had known about this.

The xrays taken in February and June don't look too much different, if at all.

blessings,
robin

[rajma]

Hi Robin,
I had not seen this article on Conenital Scoli before on long term outcomes. Perhaps you fill find it useful
http://www.scoliosisjournal.com/cont...-7161-6-12.pdf

[susancook]

I've shared this info. with my husband....and about the Shriners hospitals with my son.
I do think we will get the 2nd opinion.

We need to get the xrays on our own disk/flashdrive or something. Right now, they're at the hospital.
We'd like to avoid surgery, if at all possible. As long as our son is not in pain, and the curve is not causing him problems...and is not progressing. Of course, we won't know *that* until the next visit (in February) with the next round of xrays.

I feel like being an ostrich right now, quite frankly!

In the last two years, we have dealt with my own breast cancer, my mom's two surgeries (with her contracting MRSA and nearly dying with the first), my daughter passing out and ending up with severe concussions twice, two high school graduations (and kids going off to college), and my teaching jobs being reassigned three years in a row......I've had quite enough, thank you very much...

Oh, and not to mention I turned my ankle - which ended up as three fractures there, and a total of three casts!!! And then just three months ago, I tore the tendon in my right ring finger (which doesn't sound like a biggie, except that I was in a splint for eight weeks 24/7, and then it took another month to get out of it altogether!!)
.....yes!!! All of those things since November, 2009..... yippee....Life is a roller coaster, if nothing else!

Did I mention "stress" was my middle name right now??? ha!
anyway....thank you for being here for me in this newest test and trial in my faith.
God is faithful and He will carry us through this, too....
I'm just holding on for this ride, too....

blessings...
robin

Robin, sounds like you can handle everything! Getting more information and second and third opinions will give you increased confidence.
Susan

[gonzorini]

Hi, I'm a 58 year old male scocialite with a hard 90 degree turn to the anterior (front) and a curve back to normal. As I was growing up, they had me do exercises, stuck me in a brace during my teen years to basically no effect. I was active doing lots of bicycle riding as a teen from my home in Van Nuys, CA to places like Thousand Oaks or the City of Ontario to Santa Clarita and Palmdale. I don't know if that helped let my back grow and set up so it would continue to work.

I was told that surgery was dangerous as well, and have never attempted it because my back does not cause me pain unless I get it scrunched up, or lay on it too long watching meteors as I did over the weekend. All the doctors plead the no harm no foul rule and won't suggest surgery unless it starts getting too painful or having other problems.

I'm wishing you much success in your journey. Good luck!