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snowy24040
11th May 2007, 11:23 PM
HI TONI

THEY ARE PLANNING ON GROWTH ROD SURGERY THE ONLY THING I NO ABOUT HER CURVE IS THAT IT WAS 68 DEGREES IN JANUARY



XX SHARON XX

tonibunny
11th May 2007, 11:52 PM
Hi Sharon,

Do you know if Courtney has idiopathic or congenital scoliosis? From what I can see from your past posts, it seems that her scoliosis developed after cysts grew on her spine, so I'm assuming that her vertebrae are basically all intact, and that she doesn't have any congenital anomalies (ie she doesn't have any vertebrae that have developed wrongly).

Does it seem to you like her curve has got worse since January?

If you like, I will draft a letter which you can use to refer to when talking to Courtney's doctor, or even give/send to him so he has your concerns in writing (you could CC it to your GP and to the PALS people too).

Toni xx

snowy24040
12th May 2007, 01:43 PM
HI TONI

CURVE IS MUCH WORSE SINCE JANUARY SHES NOW WEARING AGED 6
TOPS AND SHE ONLY JUST TURNED 4 LAST WEEK,MORE PEOPLE NOTICE IT
WHERE AS BEFORE THEY DIDNT EVEN NO.IVE NO IDEA ABOUT ANY OTHER PROBLEMS WITH HER SPINE .THEY THOUGHT REMOVING THE CYST WOULD STOP THE CURVE ADVANCING BUT IT DIDNT WHEN WE SAW THE XRAYS IN JANUARY IT
WAS HORRIFIC LOOKING AT HER ITS HARD TO BELIEVE HER SPINE IS THAT BAD
HE NEVER MENTIONED ANY OTHER PROBLEMS HE DOESNT ACTUALLY MENTION ANYTHING AT ALL .HE IS QUIET AN IGNORANT MAN I WISH NOW ID ASKED TO BE TRANSFERED TO ANOTHER SURGEON ONE WHO ACTUALLY SPEAKS TO YOU AND TELLS YOU WHAT IS GOING ON .MR CHANDLER THE NEUROSURGEON WHO REMOVED THE CYST WAS EXCELENT HE THAT AMERICAN DOCTOR THAT DOES THAT PROGRAMME ON TELLY LIFE IN YOUR HANDS.NOTHING WAS TO MUCH TROUBLE AND HE EXPLAINED EVERYTHING IN GREAT DETAIL SO I ALL WAYS KNEW WHAT WAS HAPPENING.IVE BEEN ON EVERY WEB SITE FINDING OUT EVERYTHING I CAN AND IVE YET TO FIND A DOCTOR WHO THINKS A CURVE A LARGE AS COURTNEYS SHOULD BE PUT IN A CAST.BUT I AM EVIL OVER THE WAY COURTNEY HAS BEEN TREATED SO HE BETTER WATCH OUT MONDAY.THE MOST UNBELIEVABLE THING IS THAT THEY WOULD CHANGE COURTNEYS TREATMENT THREE WEEKS BEFORE OP WITHOUT EVEN SEEING HER AND HAVING NEW XRAYS
HE HASENT SEEN HER SINCE JANUARY .ANYWAY ILL BE HERE ALL DAY ONCE I GET STARTED SO I BETTER GO.HOUSE WORK TO DO AND ALL THAT


X X SHARON X X

andrea
12th May 2007, 05:15 PM
Hi Sharon

I'm really sorry to hear of the surgeon changing his mind. It really does sound like a dog's breakfast and that he doesn't really know what he's doing. I can understand why you're so angry and feel that you need to get a second opinion rather than trying to force him to go ahead with the operation, even if his reasons for not wanting to are sound. I certainly would not be happy for Erin to have such a big operation under these circumstances. You need to trust your surgeon 100%. As someone said, try and get a referral to Stanmore, or even if you can pay to get a private consult with someone there to see what their opinion would be.

I don't know if there is an upper limit for casting. If casting is suggested to postpone the op so she can grow a bit bigger, then I would be all for it. The older she is, the better, although it's not that which is the annoyance here. It's the fact that he has changed his mind at such short notice. It may be that another consultant has offered an opinion on her treatment and this differs so they are holding off.

Best of luck on Monday. I hope you get the answers you need. Keep cool and make sure you are happy with the decisions made.

Andrea
xx

newgirl
12th May 2007, 11:42 PM
Hi Sharon,
You really have been through the mill in all this. I was also in the position recently where I had to question the course of treatment recommended by our consultant and I know how daunting it can be.
My advice would be to go into the appointment armed with all the information you can. Take Toni up on her kind offer and write down all the other information you have from your research.
Ask consultant for his reasons for changing the treatment so suddenly. It could be that he has discussed Courtney's case with other colleagues in the meantime which is not unusual and that they have come up with an alternative treatment plan. If that is the case you have to be reassured that this is the correct treatment and what the contingency plans are in the event of the treatment not going to plan.
If at the end of this consultation you are not happy ask for a second opinion, and if you can, organise your own independant opinion also.

I really wish you the best of luck on Monday
Nicola