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View Full Version : From 20 degrees to 40 degrees in 6 months!


stana29
1st July 2007, 11:16 AM
Hi there,

Yesterday, my 5 year old daughter Jessica had her first Boston brace and I was told by the orthotic that her curve is accually 40 degrees and not 37 as the consultant at Gosh told us few weeks ago. They corrected the degrees on Jessica's x-rays. She has got a thoracic convex to left curve, the area curved is (T7,T8.T9,T10,T11,T12,L1,L2). 6 month ago her scoliosis was 20 degrees. I am shocked at how much her curve has progressed in 6 months. I have asked 6 months ago if they could give her a brace at 20 degrees to stop the curvature from progressing but I was told that GOSH policy is to brace at 25 degrees. Yesterday, I was told by the orthotic that they have children that were braced at 20 degrees and it all depends on the child and the consultant. Now, I am pretty confused and angry too. I believe that if they braced her at 20 degrees it would most likely stopped the progression and would never progressed to 40 degrees in 6 months. Jessica's scoliosis developed after an operation to remove her tumor wrapped around her spine and a large tumor wrapped around those vertebraes mentioned above still remains. I believe she would need a spinal fusion if the scoliosis progresses despite bracing but I also think that this operation would be complicated since there is the tumor wrapped around the spine.

Is there anybody who was braced at 20 degrees or knows much about at what degree a child should be braced? 20 or 25? I believe that the "watch and wait" approach was absolutely inappropriate in Jessica's case and let to a large curve in such a short time.

Stana

Sealy
1st July 2007, 12:21 PM
Stana,

I'm so sorry your daughter is going through this considering the battles she's faced so far in her young life. I believe it's negligent and a reckless disregard for human life for doctors to watch and wait for a curve to progress to 40 degrees before starting any kind of treatment!!!! Given your daughter's complicated medical background, they should have been more conscientious knowing that spinal fusion in her case would be a complicated life threatening procedure and they should have started treatment early on. I think the only way to change behaviours and the status quo is for parents to get ANGRY and if necessary file a class action lawsuit because it reprehensible what these doctors are doing. They should have braced the curve when first discovered at 20 degrees and it would have been more manageable and perhaps corrected fully. The only thing I could suggest to you, because the curve progressed so quickly is to get her into a corrective cast ASAP and try to get the curve down to a manageable level before continuing with a plastic brace because there is no way that a plastic brace will hold your daughter's 40 degree curve and surgery is a very real possibility. In one of Dr. Mehta's articles on "Management of Juvenile Scoliosis" and "Infantile Idiopathic Scoliosis" she describes in detail success casting juvenile curves. I highly recommend that you read these articles. If your current doctor refuses to cast, I believe the doctors in Stanmore do.

snowy24040
1st July 2007, 11:20 PM
HI

I NO EXACTLY HOW YOU FEEL COURTNEY WAS DIAGNOSED AT 16 MONTHS SHE HAD A CYST REMOVED FRON HER SPINE LAST YEAR.AT HER PRE OP APPOINTMENT HER CURVE WAS 40 DEGREES.MR LUCAS FROM GUYS WOULDNT CAST OR BRACE AND LEFT HER TO HAVE A GROWTH SPURT SO WHEN WE WENT BACK 3 MONTHS LATER HER CURVE HAD GROWN TO 60 + DEGREES.STILL HE DID NOTHING HE SAID SHE REQUIRED URGENT SURGERY AND WOULD BE OPERATED ON WITHIN THREE MONTHS,WHICH WOULD HAVE BEEN IN MARCH WE DIDNT EVEN HEAR FROM HIM I HAD TO CONSTANTLY RING TO FIND OUT WHAT WAS GOING ON.SURGERY WAS SCHELDULED FOR 6TH JUNE THIS YEAR THEN BLOW ME I RECIEVED A LETTER THREE WEEKS BEFORE OP AND HED DECIDED TO CANCEL AND OPERATE WHEN SHE IS FIVE NEXT YEAR,AND WOULD BE CAST IN THE MEAN TIME .I WENT TO LONDON TO SEE HIM AND LET RIP BECAUSE HE HAD BADLY MISS TREATED COURTNEY AND IF CAST EARLIER SURGERY PROBABLY WOULD NOT BE AN OPTION.SO HE REFERED HER URGENTLY TO GOSH TO BE CAST.URGENT I THOUGHT WAS WITHIN A FEW WEEKS BUT OH NO THEY TRIED TO FOB ME OFF UNTIL END OF JULY BUT AFTER KICKING OFF I GOT AN APPOINTMENT FOR TOMORROW WHICH IS STILL TO LONG A WAIT.AND TOMM ITS ONLY AN APPOINTMENT TO SEE NEW CONSULTANT SO WE STILL HAVE TO WAIT FOR CASTING DATE.IN THE MIDDLE OF ALL THIS I WENT TO MY GP AND ASKED HIM TO REFER ME TO MR TAYLOR AT RNOH AND ID RECIEVED AN APPOINTMENT WITHIN TEN DAYS FOR ELEVEN DAYS LATER SO TRY THAT IT WORKED FOR US.AT COURTNEYS APPOINTMENT TOMM IM NOT LEAVING WITHOUT HER CASTING APPOINTMENT SO THEY BETTER WATCH OUT AND AS FROM TOMM I WILL NOT BE FOBBED OFF BY ANY ONE BUT HOPEFULLY NOW SHES BEEN REFERED TO RNOH WE WONT BE.THEY DONT SEEM TO MESS ABOUT.


GOOD LUCK X X SHARON X X

RugbyLaura
2nd July 2007, 01:17 PM
Stanna,

I really angry at what's happened to Jessica. Sadly this sort of thing seems to happen all too often. Although Jessica's case is a little different, so they should have taken this into account. Seally's suggestion about casting certainly seems to make sense and as Courtney is being cast at age 4 there must be grounds for this with Jessica too??

stana29
2nd July 2007, 03:30 PM
Hi guys,

Thank you for your support. I now feel that writing a letter of complaint yesterday was a good think to do. I am very aware that the NHS is in a great deficit and yet it is difficult to balance all the treaments they do but I think that it's absolutely unacceptable that a child with a 10cm big tumor wrapped around her spine should be medicaly neglected and her scoliosis should be let to progreess to 40 degrees and pose a real threat of a spinal fusion. Because of their negliglence my child my have a spinal fusion and as a result off it she will have to be off school for 2 months, limiting her sport activities for 4-6 months post-operatively. More over, her rods will need to be lenghten every six months until she stops growing (14-16y) resulting in more time off school etc. Therefore I decided to write this letter to the Great ormond street hospital PALS.