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View Full Version : 15 month old needs surgery- we need information



twinsmom
05-05-2005, 05:03 PM
I have twins.... boy/girl. I know... :eek: Not really, they're great for each other. My son, Brayden has been diagnosed with scoliosis since he was 4 months old. Nothing has been done up to this point (except tests- MRI, CAT scan, ultrasounds, etc) because the Dr.s we've seen said it wouldn't get worse. In 6 months, his curve has gone from 28 to 32 degrees and he's formed a compensatory curve the same degree. He's been climbing, running, generally driving me crazy for months now. His surgery has been scheduled for spinal fusion in June and we've been told he'll be in a Minerva brace to maintain the surgery. He (fortunately) doesn't have any other problems. What can we expect? How much pain will he be in? Will he be able to sleep at night? How long is the general recovery time? Any information you can pass on would be extremely helpful. We're worried of course but know it's for the best. Please feel free to email me at home as well. Thank you! :confused:

Celia
05-06-2005, 07:30 AM
Twinsmom,

I don't understand why your doctors are planning spinal fusion if your son's curve is only 32 degrees. Does he have congenital or idiopathic scoliosis ? If he has idiopathic, I don't understand why they would order a cat scan - so it must be congenital ? Spinal fusion is a very serious operation, the vertebrae that are fused will stop growing. Many people see surgery as a cure all, not so with spinal fusion in a very young child. Has your doctor discussed with you the consequences of spinal fusion ? I don't want to scare you but you should know before hand that your son's torso will not grow to its full potential and consequently depending on how much fusion is done, internal organs can become compromised ( i.e., lungs and heart will continue to grow in a short torso ). Most scoliosis specialists try to hold off surgery in young children until the spine has grown to a sufficient size. Have you sought out a second opinion ?




Celia

megan gilbride
05-06-2005, 02:12 PM
I agree w/ Celia, my ortho. said that you should never have surgery on such a small child. First there is other options that should be tried first. Always get a 2nd opionion ( most insur. co. will pay for it) , he will have the problems celia talked about. Please seek out a 2nd option and do what's best for your son. We are all hear to listen and give you OUR advise. Please note we are not your son's DR. just other concerned parents. Best of Luck!!

Nicky's Mom
05-06-2005, 06:31 PM
Please, please, try to get another opinion before having this surgery. Fusion surgery, for such a young child, is usually only done as a last resort. There are other options out there. When you have time, please let us know a little more about Brayden's scoli, like whether it is idiopathic, or congenital, ect. We will be praying that you can find the right treatment for your son!
Cathy :)

twinsmom
05-07-2005, 08:52 PM
He has congenital scoliosis with a hemi vertebrae. We have been to Pittsburgh Children's (Not recommended), Syracuse and now Hershey Pediatric. The Dr. we see is a pediatric orthopod. We were last told (although we wait to hear more after the most recent CAT scan) that he also has Klippel Feil Syndrome (sp?). It is a very mild condition. They plan to fuse the two vertebrae only. and it is in his thoracic spine which doesn't bend much. The curve is getting worse quickly so we obviously want to put an end to that soon but on the other hand, we want to do what's best for him.

Mary Lou
05-08-2005, 07:16 AM
twinsmom,

May I ask what doctor you are seeing at Hershey? If you are seeing Dr. Lee Segal, that's great. If you are not, may I suggest you try to get an appointment with him. He is awesome. He did my daughter's surgery five months ago and we were very pleased. If you have any questions about Hershey, please ask. Also, my daughter and I are in the process of starting up the support group at Hershey again. If that is something you'd be interested in, please let me know.

Mary Lou

Celia
05-08-2005, 10:57 AM
Twinsmom,

I recently heard about a procedure called temporary spinal fusion. Its new, instead of fusing the vertabrae together, they use two small plates and four screws to stop the spine from growing in the direction its growing in. If it works, they go in and remove the hardware. I don't know if your son would be a candidate for such a procedure. I have yet to read the article which mentions this procedure in the Jounal of Bone and Joint Disease. I'm still waiting for the citation and issue number so that I can look it up. If anyone has come across this article, let us all know.



Celia

twinsmom
05-08-2005, 07:33 PM
Yes, we are seeing Dr. Segal. We are looking to find more information before we result in surgery. We're seeing him May 23rd and surgery is scheduled for June 10th. We are so close to John's Hopkins that we are looking into getting him in there for a second opinion. Does anyone have any information on who to call there? We know something should and want something to be done soon but we're afraid that surgery is too drastic now. Oh boy, this is tough... when did I become so responsible for this? It's one thing when it's you... totally different when it's your kids depending on you to make the right decision for them. Oh yeah... we are moving to the York area but would be interested in a support group near here for sure. Thanks!

Celia
05-09-2005, 08:54 AM
Twinsmom,

I saw your other post about locating a doctor for a second opinion. I did a search on the Scoliosis Research Society and I came up with the following doctors. Hopefully there is one close to you. Note that doctors listed on the Scoliosis Research Society have to meet certain criteria to be members. Good luck !

Todd J. Albert, MD
Rothman Institute
267-339-3512
Thomas Jefferson University Hospital
925 Chestnut St, 5th Fl
Philadelphia PA 19107-4216
http://www.rothmainstitute.com
Adult Scoliosis, Aging Spine

Richard A. Balderston, MD
Pennsylvania Hospital
(215) 829-2222
800 Spruce St
3B Ortho
Philadelphia PA 19107
http://www.3bortho.com
Adolescent, Adult Scoliosis, Aging Spine

Randal R. Betz, MD
Shriners Hospital
(215) 430-4026
3551 N Broad Street
Philadelphia PA 19140-4105
http://www.shrinershospital.org
Adolescent, Neuromuscular

Linda P. D'Andrea, MD
Shriners Hospital for Children
215-430-4140
Med Staff Offices, 8th floor
3551 N Broad Street
Philadelphia PA 19140
http://www.shrinershq.org
Adolescent, Juvenile/Infantile

Vincent F X Deeney, MD
Children's Hospital of Pittsburgh
(412) 692-5530
Dept of Orthopaedics
3705 Fifth Avenue
Pittsburgh PA 15213-2583
Adolescent, Juvenile/Infantile

William F. Donaldson III, MD
University of Pittsburgh Physicians
(412) 605-3218
Ortho Surgery, Kaufmann Medical Bldg
3471 Fifth Avenue, Suite 1010
Pittsburgh PA 15213
Adult Scoliosis, Aging Spine

John P. Dormans, MD
Children's Hospital of Philadelphia
215-590-1527
Division of Orthopaedic Surgery
3401 Civic Center Blvd
Philadelphia PA 19104-4399
http://www.webstage.chop.edu/consumer/pat_care_fam_serv/staff_profile_page
Adolescent, Juvenile/Infantile, Pediatric, Tumors

Malcolm L. Ecker, MD
Children's Hospital of Philadelphia
(215) 590-1527
34th & Civic Center Blvd
Philadelphia PA 19104
Adolescent, Juvenile/Infantile

John M. Flynn, MD
Children's Hospital of Philadelphia
215-590-1527
Richard D Wood Bldg-2nd Fl
34th St and Civic Center Blvd
Philadelphia PA 19104-4399
http://www.chop.edu
Adolescent, Juvenile/Infantile

David R. Kraus, MD
(412) 782-3990
200 Delafield Rd, Ste 1040
Pittsburgh PA 15215-3205


Stephen A. Mendelson, MD
Children's Hospital of Pittsburgh
412-692-5530
3705 Fifth Avenue, Suite 3330
Pittsburgh PA 15213
Adolescent, Juvenile/Infantile

Peter D. Pizzutillo, MD
St Christopher Hospital for Children
215-427-3131
Orthopaedic Center for Children
Erie Ave at Front St #133-1
Philadelphia PA 19134-1095
Adolescent, Juvenile/Infantile

James O. Sanders, MD
Shriners Hospitals for Children
814-875-8700
1645 W. 8th Street
Erie PA 16505
Adolescent, Juvenile/Infantile

Lee S. Segal, MD
The Milton S. Hersey Medical Center
771-531-4805
PSU College of Medicine, Dept of Ortho
PO Box 850, MC H089
Hershey PA 17033-0850
http://www.hmc.psu.edu
Adolescent, Juvenile/Infantile

Alexander R. Vaccaro, MD
Rothman Institute at Jefferson
(267) 339-3623
925 Chestnut Street, 5th Floor
Philadelphia PA 19107-4216

David M. Wallach, MD
Milton S. Hershey Medical Center
(717) 531-4800
500 University Dr.
Department of Orthopedics and Rehab
Hershey PA 17033-0850

W. Timothy Ward, MD
(412) 692-6868
Orthopaedic Surgery
3705 5th Avenue
Pittsburgh PA 15213-2524

Danite
05-09-2005, 10:35 AM
This is a difficult question and a very difficult decision for any parent, I hear your concerns and feel your worries. My daughter and myself were both born with scoliosis, and both had surgery at what I consider at a young age. My own experiemental surgery (total fusion) was completed in 1954 at the age of four years old. My daughters surgery was performed at the age of twelve, and please remember that your childs spine is still growing at this age and will be for some time. Corrections can still occure while this is happening by utilizing braces, so unless it is life threatening or the individuals quality of life is threaten by severe scoliosis. Then surgery should and must be the last option. My daughter wore a brace for many years, and some correction was identified, but surgery was still required later in her life but not as severe as first expected. Please think about a second opinion, and not so fast with the surgery....and my daughter has Klippel Feil Syndrome.
God Bless.

nikyergen
05-10-2005, 10:08 AM
Twins Mom,

I understand Drs. Betz and D'Andrea are excellent doctors. You may want to get a second, third, fourth from them. They are with Shriners Hospital and it won't cost you or your insurance anything. May be worth the look. We use Shriners Hospital in Portland and are totally pleased with the work they have done on our daughters. I have read lots of good posts about these two doctors.

'til later,
Nikki

Mary Lou
05-11-2005, 05:28 AM
Twinsmom,

I agree with Nikki, Dr. Betz and Dr. D'Andrea are excellent doctors. We saw Dr. Betz in July of last year and Dr. Segal in August of last year and I told Dr. Segal that we just saw Dr. Betz. He asked me why we were coming to him instead. He said we were in excellent hands with Dr. Betz. I agreed with Dr. Segal, we were in excellent hands with Dr. Betz. However, Jamie is going to a neurologist later this month to be tested for CMT, which is a condition that runs in my husband's family and sometimes causes Scoliosis/Kyphosis and Dr. Segal was the most knowledgable about the condition. That's the main reason we ultimately chose Dr. Segal over Dr. Betz.

Mary Lou

Celia
05-11-2005, 09:02 AM
Dr. Betz is also current president of the Scoliosis Research Society. Not that this should have any bearing on your decision. :D




Celia

twinsmom
05-14-2005, 08:59 PM
My husband and I have been reading all of your posts and frankly- panicking! The scheduled date for surgery is just around the corner. We are also in the process of buying a new home and we close and move in Memorial Day weekend- Brayden's surgery is scheduled for June 10th :eek: No stress here! Anyway, we have been planning on calling Shriner's next week. We were on the way home this evening and an ad came on the radio. Shriners is doing a clinic in Reading, PA next weekend. That splits the difference to where we would normally have to go. We have appreciated all of your responses and have taken them so much into consideration that we called to find out where and when for next weekend. We've done some research as well and found so much on non-fusion solutions through them that we have hopes. It just so happens that it is only 2 days before we are supposed to meet with our current Dr. Hmmm.... guess I don't need to be hit with lightning to know that we are "supposed" to be there. Have to say it's quite the coincidence. Please keep your fingers crossed that he doesn't need the fusion and I will keep you updated. Thanks so much for all of your help! :p

Mary Lou
05-15-2005, 06:40 AM
twinsmom,

I am so glad you and your husband are checking into every possible option before going ahead with surgery. I feel completely comfortable with "our" doctor but like I've said before, this doctor was our fifth opion before we agreed to surgery for my daugther and the first doctor we ever saw recommended surgery. Surgery is not something to rush into, especially with a baby. Good luck next weekend.

I sent you a private message about the support group. Did you get it?

Mary Lou

Celia
05-15-2005, 07:06 PM
Twinsmom,

GREAT NEWS !!!! :D I was doing a search on google and I came up with this article, I'm not sure if it's the same one I read about on another group. I'll try to find the full article at the library next time I'm there. You could research it yourself if time is critical.


Jack E. Zigler, Paul A. Anderson, Scott D. Boden, Keith H Bridwell, and Alexander R. Vaccaro
What's New in Spine Surgery

J. Bone Joint Surg. Am., Aug 2003; 85: 1626 - 1636.
...New Technology Investigators at several centers are currently exploring "fusionless" surgery in young patients with idiopathic scoliosis 50 , 51 ....


Edit:

Sorry... I forgot your son has congenital scoliosis. :(



Celia

Nicky's Mom
05-16-2005, 10:02 AM
Sorry, didn't mean to make you panic. You guys sure do have a lot of stuff going on right now, but I'm sure that you will feel better, in the long run, if you have more than one opinion. I wish you all the best, and hope that you don't get overwhelmed by everything. You, and your family, will be in our prayers. Please keep us updated, when you can. :)
Cathy

nikyergen
05-16-2005, 01:22 PM
Twinsmom,
Don't panic. Everything will be just fine. I got moved into our new house four days before we left for Crystal's surgery. I unpacked a few dishes for my husband and middle daughter to get by on until we got home from the hospital. Thank goodness for my mother in law and sister in law. They fed them for a few days while we were gone. And, our best friends kept our middle daughter because they lived the closest to the school she goes to. Then add cattle, sheep and horses to the pile. We were still feeding for the winter and calving and lambing at the same time. Thank goodness we didn't breed any mares last year. We had a lot to deal with. Don't be affraid to ask any family or friends for help. Most of the time they will be more than willing to help.

It is so scary now, but after it is all said and done, you will feel so much better. It is because you are going into an unknown zone for yourself. Being scared is very normal for a parent. I would question you if you weren't scared. I didn't sleep, eat, function, or anything for the four weeks prior to my daughters surgery. I finally slept real good three nights before surgery. I don't know if I was finally accepting it or I was absolutely exhausted.

I will keep you in my prayers as you prepare for surgery. Do see if you can get into the Shriner's clinic. Remember, the specialize in children. That's all they do.

'til later,
Nikki

Danite
05-17-2005, 02:52 PM
Twinsmom,

I hope you got the address that I sent you through private messaging for the support group and information regarding Klippel Feil Syndrome. I also just wanted to say hello again and God Bless you both, your email and message on this message board brings back sad and happy memories for both my wife and me. As you may recall my daughter has Klippel Feil, and had a spinal fusion at the age of twelve. We have a lot in common between us, and most of the wonderful people on this site also, truely understands your flight, and fears. Your not alone, and we are all with you and your family, may God Bless you.

twinsmom
05-17-2005, 03:54 PM
Thank you all for all of your kind words and thoughts. You do start to feel like you are the only people on the planet that have ever gone through this. Ironically, I have been feeling "lucky" that this is all my son is going through. There are so many kids out there with much worse special needs that we should be thankful. However, the impending surgery, etc. does make you crazy at times too.
We totally understand the craziness... besides buying the new house... my parents have bought a horse farm and we have 25 acres of fencing to put up and 17 stalls to get ready- I have one horse here that needs constant attention (I'm praying that I find temporary board near us for a month or so), another gelding (lesson horse) to pick up in VA, our stallion in OH and my mom and step-dad's horses- 2 here and a pregnant mare and foal being shipped from the Netherland's this week (Friesians).... All of a sudden it occurred to me that Brayden would be in the hospital for a few days... OH YEAH! What about his twin sister, our 2 goldens, and 2 cats? OH and my unemployment is running out and I need to find a job. AAAAAAHHHHHHH :eek: OK- now that I've vented.... Speaking of which... does anyone know if there is such a thing as disability to take care of a child?
We are definitely going to the Shriner's clinic this Saturday.... with hopes and prayers that they might have another suggestion. We have our Dr.'s narrative (with the exception of the most recent CAT scan) and some x-rays. Hopefully, that will give us a chance.... Thank you all again for all of your support. I wish none of our children had these problems but it does give me courage to know that you've all made it through.... I can too. (I hope ;) )

nikyergen
05-18-2005, 12:32 AM
Twinsmom,
I am glad to see that moving your household is like moving my household. It wouldn't be so hard, but like you we have this incredible attachment to our animals. I didn't know if you would understand the hecticness of feeding, calving, lambing, etc. But, if you have broodmares, you understand it just as well. We didn't breed our QH broodmare last year. She presented us with a beautiful breeding stock filly. Red Dun with a dorsal strip. We were going to sell her, but she has really blossomed this spring and are going to prep her for halter and lounge line in the fall. It seems we are always having to fence, refence, or fix fence on a continuous matter. I think I have landed a job, but it will require us to move within six months. I got a call today for permissio for the company to run a criminal record check on me, so they must be serious about hiring me. I will keep your move and your sons surgery in my prayers. I am having to sort through boxes as I write just to get things under control for a possible move in six months.

God Bless You.

'til later,
Nikki

megan gilbride
05-19-2005, 09:28 PM
twinsmom,
you can apply for SSI for a disababled child but your income between your husband and yourself has to be kinda low. each state varies but you can easily pull it up on the internet. good luck and God bless.
megan
megangilbride1@yahoo.com

Danite
05-20-2005, 09:49 AM
Twinsmom,

Sure hope and pray that everything is going as good as can be expected for your family, as for disability benefits, their are many non-profits, and organizations that you may not know of that can provide assistance from financial, education, information and advocacy. I would recommend that you locate the closest Center for Independent Living or Disability Rights Organization Group for further information. You will find that each state has different programs and qualification proceedures for benefits, and some will be better then others.
As for Supplemental Security Income (SSI), it is set by each state and is paid by the federal government. It is mostly directed related to your income and financial abilities, again it is up to your state elibility requirements.
Sometimes, if a child is not able to become employed in the future or is expected to be dependent on the parents or parent for financial support for necessary living expences, then you may be able to get Social Security Disabiity Benefits for that child based on the father earnings. Again this is a somewhat complicated and it is a very individual medical judgement. After saying this, most people with Scoliosis and/or surgery are employable and do lead a successful normal life. God Bless... :)

KRIS ATKINSON
05-20-2005, 10:19 AM
Twinsmom, I am also a twins mom, but mine are 14, and another age 13. Regarding you employment status, I notice your occupation is teacher. I thought teachers were hard to come by? Or is it just in NC? Of course, if you are avoiding work now due to the need to stay with your children, as I did, then it doesn't matter what your career is, you can't work now anyway. What is your degree in? God be with you tomorrow at Shriners! Kris

nikyergen
05-20-2005, 10:35 AM
You don't want to be a teacher in Oregon. Public Schools are cutting back all the time, and some closing right and left due to budget short falls. We have a friend that is finishing her teaching degree. She realizes that she will have to relocate to another state most likely. Another relocated to Alaska after he finished is teaching degree last year. So, Oregon isn't the place to be a teacher.

You will be in our thoughts and prayers at Shriners tomorrow.
'til later,
Nikki

twinsmom
05-20-2005, 11:30 AM
We have our fingers crossed and are anxiously awaiting our appt. with Shriners tomorrow. I fully believe that my son will be fine after whatever surgery is done. We know something will have to be done but the question is what and when. We just want the curve to stop for now and see where we go from here.
As far as teaching goes.... HA! In NY we were required to have our Masters degrees. I have a bachelors in PE so I did my Masters in Health Ed. so that I could find a job in a state (like PA) that requires a dual certification. It seems like because I have a Masters, the school districts want to hire someone they don't have to pay as much. Needless to say, we moved mid-school year and that's impossible on it's own. I'm hoping to get a job for the fall. I miss it a lot. On the other hand, I've loved being home with my kids. Tough situation. I also teach horseback riding. Once we find out what is going on with Brayden, I'll be more flexible in my decisions for a job and hopefully by then, the interviewing will start for next school year. :p

I can hope. Thank you all for your prayers - keep them up for tomorrow and I'll post what happens! :D

Danite
05-20-2005, 11:38 AM
Hi Twinsmom,

My professional experience is with disability rights and employment, it is understandable an issue that many of us with a disabilty face more than the so called (TAB) temporarily able body. So regarding your possible employment as a teacher, one of the highest areas of employment opportunities is with the non-profits. Of course the pay is low, but usually the benefits are great, I would highly recommend and suggest that if you would like to keep in the field of expertise that you check with any Headstart programs within your community. Opportunities for employment are usually high in this area, like I said the pay is not that great, but many employers will offer great benefits. Sometimes including forgiveness of student loans leading to your teaching degree, continuing credits, educational benefits and flex time. God Bless.... ;)

Mary Lou
05-20-2005, 12:06 PM
twinsmom,

Good luck tomorrow. Let us know a.s.a.p. how things go and what they say. Remember, you can still cancel your appointment on Monday and/or surgery until you are 100% sure of what you feel is right for your son.

Mary Lou

Desperate
06-10-2005, 03:12 PM
To the Twins mom, I was just wondering how everything went please let us alll know.

Celia
06-15-2005, 08:56 AM
Karey/Desperate,

I received your P/M, did you get my reply ? I can't seem to find it in the "sent" file.







Celia