Can somone (anyone) please help me - Spinal Cord Disorders Message Board

Jaden090705 · 04-24-2006, 06:04 PM

Hello, My name is Brittan and I am 19 years old. I have a son who is 7 months and is in the Childrens hospital. He has been there for 6 months now. When he was a little under a month old he had developed an infectioln in his neck. Which then resulted in an unstable neck. The doctors said that the ligiments around the c1 and c2 area are destroyed. They said the only option is to do surgery. They want to do it on May 3rd, 2006. That's in a little over a week. Could someone please help me. I dont know what to do. I hear that my baby will loose some of the rotation to his neck. Once the surgery is done, it's done, there is no going back. Does anyone know if there will be pain after the surgery, and then on? Can anyone help me, please. If you can tell me anything please e-mail me. [email]REMOVED[/email].
Thank You,
Brittan

Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board.

acdfouch · 04-24-2006, 07:29 PM

Quote:

Originally Posted by Jaden090705

REMOVED - please do not quote posting rules violations

Brittan,

I feel nothing but sorrow for you hearing that you have a baby in this type of situation.

First off, you have come to a good place.

[url]REMOVED[/url]

That said, I can not speak specifically on the c1/c2 discs.

Have you been told exactly how the procedure will be happening? Will they be taking out the disc in between c1 and c2? Will they be "fusing" it? When they say that, generally the idea is they are going to put a piece of bone in between where "squishy" material once was. From there, the body grows the exisiting bones (c1/c2) together with this new bone - aka the "fusion".

Long term... I'm not sure I am qualified to speak on that either.... A babies bones are constantly growing - as I am very sure you are well aware.

Have you gotten a second opinion? Is this the only case of resolution? What are the implications if you choose not to have the surgery?

Perhaps I have left you with more questions than answers, but others will soon chime in.

I just wanted to give you some clarity and a few things to think about - I'm sure your mind has been VERY occupied and I want to try to provide some lines in which you can start to think.

Best of luck and you will find help here and at the other board.

AKGIRL · 04-24-2006, 09:25 PM

I understand the panic you must feel! Hang in there... I am certain your baby is in good hands...these neurosurgeons and pediatric surgeons are amazing individuals..they know their work and I am cure your little one will be fine. I would also recommend a second opinion..if for nothing else, for your peace of mind. it always helps to know that the surgery you are about to face is indeed the choice of a good number of professionals.
Also, the hospital should have you involved with a nurse or social worker who can help you navigate the hospital system/medical questions..it is difficult for all of us, no matter how capable. I have found that you have to ask everyone until you get the help you need! I also write down every question that comes to mind..as I seem to forget when I am in the doc's office!
Good luck to you...breathe deeply and know that everyone on the planet, at one time or another, faces these types of difficulties...you will make it through and I am sure attract the exact type of help you need, when you need it!

SpineAZ · 04-24-2006, 09:41 PM

Keep in mind that kids adapt very well and tend to heal well. If he was to loose a bit of range of motion in his neck - being so young he'll never see it as an impairment - merely part of who he is. Also, the medical community is more aware of pain management in children than in the past. Talk with the doctors and have them address what their plan of action for the surgery, recovery, and pain management will be. Our thoughts are with you and your little one.

PNo · 04-24-2006, 11:01 PM

I am sure you must be scared, hang in there. I personally have problems below at C4-7, all I have heard is some of the rotation is done from the upper levels. I personally would rather lose range of motion that risk something like permanent damage to my spinal cord. I will say a prayer for you and your baby.

Based on my personal experience if the dr's are saying the neck is "unstable" i would ask these questions:
1) when you say unstable what do you mean? is there movement, slippage, does it fall out of alignment, a little or a lot?
2) what are the problems that this can cause? can it damage the spinal cord? could it cause paralysis?
3) what is the procedure to be performed?
4) what is the after treatment? Is there physical therapy for this condition?
5) How many other cases have you see like this? Are there any other alternatives?

You asked about pain afterwards - most of the procedures are not horribly painful, most of us older folks recover fast, kids also bounce bad quickly to medical stuff. It could be extremely painful and/or dangeroud if it isn't fixed - by pinching, compressing or irritating the spinal cord, or nerve roots possibly. I think most on this board will agree that is what is extremely painful and makes most of us miserable most of the time and usually what leads us to surgery.

Good luck and take care of yourself.