Urgent question for Ramona

[Aussiemum]

Hi Ramona,

Can you tell me if they considered Patrick's surgery for his Lordoscoliosis urgent??? We had planned March next year for Elysia's surgery. We went and saw a professor here in Australia who is head of Scoliosis Australia and he has rung our doctor and said it's urgent and they want to perform the surgery on 4th December!!!!! There's not much on the net for this as you know from your own experience.
I haven't been given the chance to talk with the Doc yet, only his secretary rang me and I have to let them know by tomorrow! What the?????
I'm in total shock and about to have a break down.

Thanks heaps
Del

[scoliboymom]

No Patrick's lordoscoliosis was never considerd urgent. Even when the decision was made that he should have surgery within 6 months because of his high and rapidly increasing curves the lordoscoliosis was not the reason.
Elysia's curves are not that high and I would be surprised to see any doctor do surgery based on her current curves alone.
However I do know that lordoscoliosis can create problems when the spine starts to compress the chest cavity. Is she having problems breathing? shortness of breathe? I would definately talk to the doctor and ask lots of questions as to what has made it suddenly urgent. Any chance you can get another opinion or two or three or even that your doctor consults with another doctor?
Listen to his reasons for the urgency and ask what he thinks would happen if you waited another month or two to give you more time to gather more information or opinions. I would also ask what kind of experience he has had with other patients who have lordoscoliosis or if he has dealt with it before. Do you have a copy of the x-rays? If not you should get them ASAP so you can show them to other doctors.
If the lordoscoliosis is getting worse I would also question the use of bracing because Patrick's surgeon felt that bracing just helps to push the spine more into the lordosis position.
Dont make any decisions until you talk to the doctor and if you can, talk to the professor as well.
I wish you luck and please ask me any more questions you may have. I could even send you a copy of Patricks x-ray if you want to compare severity on the lordosis(but i have to have the kids help me on that).
Let me know what happens and take care. I know its a really tough time you are going through.
Ramona

[Aussiemum]

thanks!

Thanks Ramona,

Yes, I'm definately doing all that today. I'm dumbfounded as to why they are not trying to rush this. I know Professor Taylor said she has to have the surgery sooner rather than later but my husband and myself had a long chat last night and we feel for sure that we are being pushed into a "vacant spot" on the Doctors surgery list.

Elysia hasn't had an out of brace x-ray since March this year, when she was 38 Thoracic, 23 Lumbar. Every time she's had an x-ray it's been in the brace - last x-ray was 36 (I think - the numbers are getting confusing) in brace but, she had gone from school to have the x-ray done and hadn't worn it all day. I've since found out to get an accurate x-ray in brace, you must be in it 12 hours and for an accurte out of brace x-ray you must be out of it for 24 hours. So I have no idea what she really is at the moment. Crazy!!!

She is not having breathing problems but is complaining of neck and rib pain. What has deteriorated rapidly is the rotation in her rib cage. She has a prominent rib hump now without even bending.

So plan for today is, write a letter and fax to doctor (as they won't talk to you on the phone and I don't want secretary relaying what I've said and getting it wrong!). We're going to tell him we are waiting until March unless he can give us a very VERY good reason why this is medically urgent.
The surgery is stressful enough without putting the extra pressure on our family to have to try and organise our work, minds, cancel our holiday and prepare poor Elysia all in 3 weeks.

The only worry that my husband and I have is that when Elysia has the surgery in March, if there's any problems or he can't get good correction, we don't want him saying "well, I did want to do this 3 months ago" that's the scary part for us.

thanks Ramona and anyone else who would like to add their 5 cents worth to all of this very strange dilema we find ourselves in.

Cyber hugs
Del

[Carmell]

Del,

I agree. I'd need to have some very convincing evidence to allow a "rush" surgery like this. I understand lordoscoliosis is different than "just" scoliosis, but, if she isn't having any potentially life-threatening conditions, why not wait until everyone is mentally and physically prepared. Good luck and let us know what you find out.