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GILL BRATBY
09-29-2003, 05:10 PM
My daughter has recently been diagnosed with scoliosis. She is 8 yrs old and wears a spinecor brace. We live england, and love to hear from anybody. We have been told that her curve is 50 degrees (high thoracic) and is very aggressive. please help

Thanking you all in anticipation

gill bratby

Joe O'Brien
09-29-2003, 11:33 PM
Dear Gill:

My son Keith, who is now 17 and the youngest of my five children, wore the SpineCor brace for approximately 2 years. He has been out of the brace for more than 6 months now and his curves seem to be stabilized at 33/30.

As you may know, the headquarters for SpineCor are now in England, (www.spinecorporation.com). There are quite a few patients in the U.K so I am sure you can inquire directly about contacting some of them.

Dr Rivard and Dr Coillard, the developers of the brace, have published an outcome study in Eurospine which shows it to be as effective, if not a little better than traditional braces.

I am sure you have been advised however that the age of your daughter and the magnitude and location of her curve is going to make it very difficult to contain progression no matter what brace or program you pursue. It is not impossible, but difficult.

Who is your daughter's orthopedist?

GILL BRATBY
09-30-2003, 04:03 PM
Thanks for getting back to me so quickly. We live in Doncaster s.yorks. We are currently under Mr Douglas at Sheffield Childrens Hospital. Bethanys next appointment is on 15th October. Did your son experience any pain? BEth cannot use the tiolet on her own as the straps are absoubtly everywhere. She is also very emotional, and tires very easliy. My e-mail is thebratbybunch@aol.com

thanks again
gill

chiari-kid'smom
09-30-2003, 10:42 PM
Dear Gill,

I wanted to share our daughter's scoliosis story with you as she is the same age as your child.

Leah was 7 years old when she was diagnosed with a 50 degree upper thoracic curvature in Sept. 2002. She was otherwise a healthy child, but during the orthopedic doctor's exam, showed slightly abnormal nerve responses. A brace was ordered, and also a full spine and brain MRI to rule out neurological causes. The MRI showed she had a Chiari Malformation Type 1 of the brain, with a syrinx in her cervical spinal cord.

A Chiari Malformation is a condition in which the cerebellum lies lower than normal in the skull, descending into the spinal column. This puts pressure on the brain stem and disrupts normal flow of cerebral spinal fluid. A syrinx (a cavity filled with csf) formed in our daughter's spinal cord, resulting in nerve damage to the muscles in her back and her severe scoliosis.

Surgery to correct the Chiari and re-establish normal csf flow was performed in Dec. 2002, and follow-up MRIs have shown the syrinx has begun to collapse. The neurosurgeon has said there is a possibility the nerves may heal and allow for some degree of correction of the spinal curvature. Our orthopedic surgeon does not share this view and anticipates performing a spinal fusion surgery at age 12 - 13. In the meantime, our daughter wears a Boston brace 20 hours per day to halt further progression of the curve. But because the curve is so high, the doctor has suggested switching to a Milwaukee brace at our next appointment.

Has your doctor recommended an MRI? We were told that scoliosis, especially such a severe curve, is unusual in a juvenile
child and an MRI is typically performed to rule out a neurological cause.

Other symptoms of a Chiari include headaches, neck pain, difficulty swallowing, choking, problems with balance and coordination, a tingling sensation in the arms and legs, sleep apnea, snoring. Our daughter had some difficulty eating as an infant, which she overcame, and began snoring as a toddler, which neither we nor our pediatrician recognized as symptomatic of a serious problem. Otherwise there was no indication of a neurological problem until she developed the scoliosis.

We realize every child is unique. Our daughter’s condition may not have any relevance to yours, but they seemed so similar that we felt compelled to tell you our story. Good luck with the treatment of Bethany’s scoliosis.

Barbara and Carl England

GILL BRATBY
10-01-2003, 07:16 AM
Dear Barbara and Carl,

Thank you for getting back to me so quickly. Yes Bethany has been revered for a MRI and we are still waiting for this. We have not been told that there could be anymore problems, but I'm keeping an open mind. This was such a shock, I really can sympathise with you both. Does Leah have pain? Beth does say she has pain and aches. She sleeps alot also. We thought when Beth was younger that she was a "child that slept alot", but since been told that this is a sympton. She tires out also, doing activities. When looking at the x-rays we were told that Bethany has a vertabrae missing. Bethany does get tingling sensations. Bethany does snore. I dont know how high Bethanys curve is, but the degree is 50 without brace and 38 with the brace. Bethany is devastated wearing the spincor, she needs help with toilet and dressing. I hope we can chat over the phone/internet. My e-mail address id thebratbybunch@aol.com

Take Care
Gill and Paul Bratby

Joe O'Brien
10-02-2003, 05:08 PM
Gill:

Regarding the straps and toileting, SpineCor has a leotard style bodysuit made of cotton which has a snap panel with two channels for the crotch straps.

In order to go to the bathroom the child unsnaps the panel and the straps stay contained within it rather than flailing around.

Is your daughter wearing this bodysuit?

GILL BRATBY
10-03-2003, 11:40 AM
Hi Joe,

Yes she does. She cannot manage to hold the straps when she is on the toilet. Also when finished she has problems putting back the straps especially if the brace rises a little. Although she has these problems, she is coping well. She is emotional though, but hopefully she will overcome this the more she wears it.

Thank you Joe,

Gill

_David_SD
02-04-2004, 05:55 PM
Hi Gill,

I noticed you said your daugher is feeling very emotional. HOw are you handling that? The thing I have heard amount yound scoliosis patients is that they feel abnormal, different. This is typical but should be countered with positive encouragement and support from others who share her condition. As involved as the physical aspects of treatment are it is equally important to nurutre the psychological and emotional health though. Have you sought support groups?

GILL BRATBY
02-05-2004, 05:00 PM
Hi David,

Things are alot better now with my daughter, although she still hates wearing the brace. We have since gone to a different level.
Her curve has progressed and we are now awaiting surgery. They are going to fuse the curve. I'm told that this will not stunt her growth by much (1 to 2 ins). She is looking forward to the operation. On the other hand, as a parent, I'm going crazy!!!
I'm reading alot on the net at the moment and the surgery sounds horrible and painful, I worry that Bethany may never walk, etc. I hope and pray that everything will be okay. I'm not a very religous person, but I'm turning to anything at the moment. The surgeon told me that they will operate going through the chest as well as the back. They will remove a couple of ribs and take about 5 discs out of her. Yikes!!! The of course he will then put in the rods. If anybody has a child that has gone through the same procedure, please please get in touch.

Thanks David,

Gill

Carmell
02-06-2004, 10:49 AM
Gill,

I just read your post. When have they scheduled Bethany's surgery? She is not very old, and having so many pieces of her spine fused will stop her growth more than 1-2 inches. My illiterate and lay-brain tells me that. She has so much growth left in her spine, and having it fused now may not be the right option. Is there anyway to get another opinion from someone outside the same group of orthos you are seeing?

I've emailed you before... Braydon had fusion only surgery (no rods placed) when he was 11 months old. They fused the convex side of 8 vertebrae (from T5-L1). His spine is VERY rigid in that area, and will never straighten. While its true that the vertebrae continue to grow in thickness, the disks are removed so the full growth potential is taken away. If she's having 5 disks removed, that's a significant number of thoracic vertebrae.

They place the rods to act as a brace while the fusion becomes solid.

When they said they will go through her chest, they aren't talking the front part of the chest. They will make an incision under her arm, called a thoracotomy incision. If they leave the lining of the ribs they remove in tact, the ribs should grow back after time. That part is kinda cool.

She'll have a chest tube placed (at least one) to drain the fluid that builds up in her chest so her lung(s) won't collapse. Sometimes the chest tube is bothersome. Just keep an eye on that.

You are right - scoliosis surgery is NOT a delicate procedure, nor one to be taken lightly. I would hate to see anyone's child go through unnecessary surgery, just because one ortho's opinion is an immediate surgery opinion. The bottom line is that YOU, the parent(s), need to be 100% confident in the surgeon and his/her recommendations. That's the biggest hurdle to get over. This person will be following your daughter (or should be) for quite a while longer. She should be followed through her growing years, which will be filled with growth spurts and chances for change. I wish you the very best and would love to keep in touch with you. We have certain procedures and things we (as parents) can do here in the USA before, during and after the surgery. I'd be happy to share our experiences with you, if you are up to it.

Take care and thanks for letting me ramble...

danzer
02-09-2004, 10:31 PM
Hi, am new to the site. My daughter, madison, had a 118 degree curvature due to severe congenital scoliosis at 12 months. After a failed fusion and a year in various braces, we were fortunate to discover the Titanium Rib project. Madi is now six, walks; dances; runs and plays. Her lungs are hugely improved and her heart has "dropped" back into proper placement.
I do not know if the rib is an option you have or would consider; but if you would like contact information or to have questions answered, please let me know.
Wishing you the best;
Rhonda

cshipley04
02-27-2004, 05:43 AM
hi my name is carol, i have a 9 year old daughter called Gemma who has scoliosis. It is at 55 degrees at the moment. She wears a back brace for around 12 hours a day but the curve is still progressing. The doctors have talked about surgery in the next year or two but dont want to do it too soon as it is supposed to stop you growing any taller, although i read that you can have the rods extended as you grow but not sure how true this is. im not sure if this is the same as your daughters, as my daughters also has myotubular myopathy {a muscle weakening/wasting disorder} we also live in england in the east midlands, What about you? most people ive found on various internet pages for scoliosis and Myotubular Myopathy always seem to be in America

GILL BRATBY
02-27-2004, 03:20 PM
Hi Carol,

My daughter now has a 58 degree curve mid thoracic. She is scheduled for surgery in June this year. She will be having growing rods. My daughter has no other side effects other than her scoliosis. We live in South Yorkshire, not far from yourselfs. If you would like my telephone number I will e-mail you privatley.

My e-mail is thebratbybunch@aol.com

I would love to keep in touch with you.

Gill

mikesutcliff
03-24-2004, 06:01 AM
Hi Gill
My name is mike and I have an 8 year old son who has had scoliosis since birth. He has just had surgery for this and has had growing rods put in.

His aftercare is a concern and would like to have some information about this.

I live in the UK too.

If I can be of help to you let me know.

Cheers

Mike

GILL BRATBY
03-24-2004, 06:34 PM
Hi Mike,

I would love to keep in touch, I have sent you a reply, Did you get it?

Gill

mikesutcliff
03-25-2004, 01:41 AM
Hi Gill

Yes got your message and have sent reply.

Mike

mikesutcliff
03-25-2004, 01:51 AM
Hi Gill

My sons name is Philip.He has a syndrome called banayan zonnana syndrome. He is eight and has had 17 operations so far. 2 open heart and the latest 5 weeks ago having the rods in. Philip is coping ok like all children do. He does walk but is using his wheel chair again as he is a bit stiff. He wears a Boston Brace and has done all his life. He has a double curve which was 87 degrees but since the operation has grown by 2.5 inches. Last noght was his first bath and we got through ok with towels etc. He was a bit worried but was ok.

My wife and I are not together anymore but both live near Chichester on the south coast. Philip is the second youngest of 6 and all the others are fine.
He had his operation in Southampton by a Mr Boree.

Where is your daughter having hers done?

Philip was inhospital for nearly 4 weeks. He would normally have come out earlier but his heart condition meant he had to be in a little longer.

If there are any more questions, please ask them

Speak soon

Mike.