New surgeons opinion and crankshaft cares?

[Carlos Alberto]

Hello, I wish to share with the NSF Forum my last experiences with our daughter's surgeons. I'm the father of Gaby who has kyphoscoliosis due to hemivertebrae, she is four years old.

She was born with an unusual genetic disease called Chondrodisplacia Puntacta. She has had three surgeries of the spine. The first surgery for posterior hemivertebrae fusion from T8 to T12, this surgery failure because of an infection with Staphicolocus Aureus. In the second surgery she was instrumented with two posterior rods from T1 to L1 and the hemivertebraes were fused. Unfortunately the surgery was infected again. The doctors kept the hardware and make an antibiotic treatment trying to get time for posterior fuse of hemivertebrae. Eight months later (November) all the hardware was removed. In that time the surgeons told us that we needed to prepare our daughter for a surgery with anterior approach.

But yesterday we met one of the main surgeons of our country. Despite of what was told to us he doesn't think about surgery for the moment. He say anterior fusing now is going to get more problems in the future that benefices now. He say the curve now was compensated and that there's posterior fusion in the thoracic region. This could stop the posterior growing of the spine, and allow growing by the anterior side of spine. With some time it could improve a little the kyphosis. The bad effect could be a phenomenon called Crankshaft that is why we are going to check ( starting each three month) with X rays the evolution of the curve. Now we have more time for praying. She will use now a Boston or Milwaukee brace.

Any one of you knows about crankshaft? How can we notice it is starting?

God bless all of you

[LindaRacine]

Hi Carlos...

I'm really sorry for all that you and Gaby are going through. She looks like a very sweet child.

I'm not sure there's anything you can do (at least without an x-ray) to notice if Gaby's spine is crankshafting. You might see that her torso is starting to rotate more.

Is there any way you can get Gaby to the U.S.? One of us can probably convince a U.S. surgeon to see her at no charge. However, if she requires more surgery, while again I can probably find a surgeon willing to donate his/her time, it's very difficult to convince hospitals to waive their fees.

Regards,
Linda

[Carmell]

Hi Carlos,

Thanks for the update. I'm sorry your surgeons have little or no direction for you and Gaby. It sounds like if her posterior spine is fusing now, maybe there is hope for having better corrective surgery down the road. I would be very wary of more surgery in your home country - no offense. You would want to make sure Gaby has the best care possible. You once mentioned that you corresponded with a Shriners hospital in Canada (am I remembering correctly?). If you could get the Shriners group in the USA to take her on as a patient, I'm sure you would get better answers and at least have another opinion as to what the future plan should be for her. And, as Linda mentioned, I'm sure someone on this list could find a surgeon to help. Finding an entire facility (outside the Shriners organization) would be a difficult task.

I certainly hope you are able to find some answers somewhere. Have you sent her medical history and xrays to some of the USA orthos? If you don't have their contact information, I'd be happy to give you the ones I know of (which are several).

My best to you and adorable Gaby,

[Carlos Alberto]

For Carmell, Lindaracine and everybody

Thanks for writing. We found the Shrinner hospitals of North America where we probably could think about surgery for Gaby. The next surgery in my daughter is just a matter of time. Although we need to make the correct decision in the right time. We were really frightened about surgery in this moment here. Last year was the harder of ours life. So we really enjoy with the surgeon's decision of let her grow and don't make surgery for now. It doesn't means that we trust enough in the surgeon opinion. We don't have choices. Beside have a second opinion in our hospitals don't make any sense because our surgeon is one of the best and there's only two hospital to performs such surgery. Maybe in another hospital in USA with some other condition the surgeons could have a different opinion. Recently a friend of mine talk with the Tampa Shrinner and they tell him that they were capable of do any kind of surgery but they need the patient there and don't make any thing for bring they there. I don't know if sending CAT, MRI and all X Rays the doctors could give us their opinion, without examining our daughter. Have the doctors opinion could help in some way but what we really need is a good hospital that take care of her as a patient. Another thing is that hospitals have lists or tracks of patients for surgery in some Shrinner this list seems to be so large. We can do all our effort for go there with her to one of the Shrinner hospital but it will be easier if we could bring her as patient of some of the hospitals. The main problem isn't the money to go there. I don't know exactly what the problems are I'm looking for information about of it.
I'm preparing the information to start sending that to USA hospitals. In one occasion Carmell recommends me Dr Emans in Boston I do visit they WEB and get one email. Let see if he can give me his opinion. I'm too much interest in Shrinners hospital mainly Philadelphia (seems the best) and Tampa (nearest of relatives and friends). Of course any other is ok.
I will appreciate any help to get the appropriates contacts.
Carmell, please let me know how's Braydon.
My best to all
Carlos (me) Arlety (my wife) Gaby (our daughter)

[Carmell]

Hi again, Carlos,

I believe sending Gaby's information to Dr. Emans is a very good thing. I'm sure he will respond with some suggestions on how to help her in the long term.

You mentioned Shriners of Tampa "that they were capable of do any kind of surgery"... they may be capable to do any surgery, but they aren't approved by the FDA (the USA's governing agency to make sure patients are as protected as possible from harm) to do "any" surgery. Shriners of Philadelphia has an excellent reputation. Drs. Betz and D'Andrea have seen children with multiple issues complicating their scoliosis. The contact information for Dr. Betz at Shriners of Philly is: http://www.spineuniverse.com/mdpage.php?doctorID=904

I hope you will consider sending the same history and images to Dr. Betz as well as Dr. Emans. I understand how being close to family is convenient, but making sure Gaby gets the best care possible is most important.

Oh, thanks for asking about Braydon. He is doing very well right now. School will start here later this month, and he isn't too excited about that. He is enjoying his "freedom" of not having school and playing all summer. He goes back for xrays and his annual renal and neurosurgery checkup on Aug. 26. Hopefully he'll be able to go a longer time before his next expansion surgery. Keeping our fingers crossed.

My best to you! Keep us posted.

[LindaRacine]

Carmell...

Do you know for sure that Shriner's accepts patients from outside of North America? I could have sworn that I was told that the U.S. Shriners won't take anything but U.S. patients.

--Linda

P.S. I talked to Dr. Campbell on Saturday (at the Harrington Spine Symposium). He talked a bit about his experience of trying to get the titanium rib approved. He's a pretty amazing guy.

[KRIS ATKINSON]

I talked to Shriners about Carlos' situation when Erica was there for evaluations, etc. They sounded like they take people from outside the USA, but it depends on the situation. Of course, a Shrine Temple has to sponsor each patient, so it also depends on each Shrine Temple. In our case, for instance, the Shrine Temple had a form to fill out which asked our income level to get a free meal card for me, mom, to stay with Erica. We chose not to fill it out but use cash while I was in the hospital accompanying her. Technicallities like that and possibly which countries they will agree to sponsor are up to individual shrines. I applied to the hospital itself and they forwarded my application to the appropriate shrine temple to get my daughter's sponsor. I found out about the sponsor later. Carlos, I believe you said you sent in the application to Shriners, didn't you? They should also be able to redirect the application to other Shriners locations as they see fit. It will take some time, of course. I believe the hospital staff told me to talk to admissions people or someone for more information about your situation. Maybe they meant the hospital administration or the Shrine Temples. Keep us informed and God bless you all! Kris

[dawndd]

Hi Carlos, Abb is adorable! My son also has a rare spinal defect (Type 2 congenital kyphosis). In deciding what surgeon to seek an opinion from and to perform the surgery, we decided to only consider surgeons that were a member of the Scoliosis Research Society. You can find a list at http://www.srs.org. There are likely better surgeons amongst this list than others, so in addition I asked how many spinal surgeries they do a year. Unfortunately, with rare conditions it is not as helpful to ask how many of this exact type of condition do they treat. I found that with Shriners, once you have an appointment, they will move the surgery date up if they determine it is urgent. There are 10 SRS members listed in Florida, one of whom is with Shriners in Tampa:
Dennis P. Grogan, MD
Shriner's Hospital
(813) 975-7130
12502 N. Pine Drive
Tampa FL 33612-9411

I completely understand the relief of being told that surgery is not necessary at this time. We also heard this at one point. Unfortunately, with some conditions, it is very important to do the surgery at the right time and waiting is sometimes not the best option. I would strongly encourage you to get a second opinion on the wait and see approach. It may very well be the right decision right now, but it is very important to make sure that waiting is best. I wish you the very best in this stressful time.

[LindaRacine]

Hi Dawn...

There are more than 10 SRS surgeons in Florida. I think you were probably looking in the Physician Locator area, but there are more surgeons listed in the SRS Fellowship area:

http://www.srs.org/directory/directory.asp?mode=search

Regards,
Linda

[Carmell]

Kris - Thanks for the explanation about Shriners. You discribed what I had thought (that Shriners would consider cases individually to accept or not, regardless of where they live, USA or not). Thanks for following up on that.

Linda - Dr. Campbell is quite a showman, at times. LOL. He truly does care about his work and his patients. The FDA approval has been a very long and often frustrating process. However, his committment to these kids is incredible. The HDE approval has helped tremendously! There are several hospitals now approved and trained to do VEPTR evaluations and implants. It is a wonderful option for a rare group of children who have no other chance at a better quality of life.

My biggest suggestion to Carlos was (and still is) to find a good PEDIATRIC orthopedist who has extensive experience treating children with rare and complicated conditions that compound the scoliosis. I hope one of the Shriners facilities will help him. Or, if not, at least one of the other ped. orthos who have experience treating children like Gaby.

[dawndd]

Linda, thanks for the correction. You were right: I was looking in the physician locator section of the SRS website.
Carmell, I agree with you. What I wanted was a pediatric orthopeadist specializing in spines.
Carlos, I wish you the best of luck in your search.

[Carlos Alberto]

from carlos

This weekend I should have in digital format the last X rays of Gaby and with that I will finish updating her expedient. So next week I'll be able to send her medical history with all X rays from one month to now, recent CAT, one year ago MRI, photos and clinical and orthopedic summary.
From her last surgery to a few days ago we always had thought about an immediately next surgery. So we found Shriner and fill the application of the Shriner of Montreal where my older brother live. The surgeons of that hospital were met and they analyzed the case. They told us that they are not able to do this surgery because they don't have an specialist for cases with previous infection. And that this is a high risk case. I don't know if they considered the option of no surgery for the moment. They told to my brother (by a secretary) that the case was well presented and that they made a very good evaluation of it, they think is possible to do it in the Montreal Children Hospital. But they don't give us any thing written because they haven't a physical examination of our daughter.
Now I'll start to trying to get USA's surgeons opinion to analyze the option of another kind of treatment for my daughter. If it were possible and recommended I think it's going to be like an Heracles Task or the trip of Memo's father (the clown fish) to Sydney. Let see.
What means MD in a doctor?

[LindaRacine]

Hi Carlos...

M.D. stands for Medical Doctor, and simply designates the educational degree received.

Regards,
Linda

[flowerpower]

Carlos,

Thought I would pass along the website for Children's Hospital of San Diego. It's www.childrensspecialists.com - click on "pediatric specialities", then find "orthopedics/scoliosis. All their drs. have done a fellowship, in addition to residency training. Dr. Peter Newton (he's treating our son) has excellent credentials and from what I saw he has a traveling fellowship from the Scoliosis Research Society. Linda, does this mean he has privileges at multiple hospitals? Here is the address also:

Children's Hospital & Health Center
3030 Children's Way, Suite 410
San Diego, CA 92123
Ph: (858)966-6789
Fax: (858)966-6706

Best wishes to you & Gaby.

Renee