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mikeysmum
06-14-2006, 08:38 AM
Hi
My son is five and under mr webb at nottingham uk. They want to do surgery but now it is a catch twenty two position as his lungs are not strong enough to recover from the anesthetic, to get them stronger he needs the surgery to stop his lungs and heart being squashed. Anyone else been in this position? Hiis next appointment with mr webb is at the end of this month and I dont klnow what I should be asking or demanding?
Great forum by the way.
Bye for now
lori.

mikeysmum
06-14-2006, 08:39 AM
sorry peeps didnt see the adult bit :o

PNUTTRO
06-14-2006, 09:55 AM
I will start with, I am not a doctor. . .

It seems to me, that if scoliosis is not progressing, it shouldn't increase your son's risk to his lungs and heart--Is it an immediate concern?

Also, a 5 year old child should have adequate lung capacity for anesthesia. In the US, pediatric surgeons operate on newborns and premies (whose lungs are not fully developed). If your child has a lung problem aside from the scoliosis, I would take him to a pulmonologist first and ask his recommendation.

Just take it one step at a time, you'll work it out.

mikeysmum
06-14-2006, 11:23 AM
Mikey has other problems aside of the scoliosis being cerebral palsy, sotos syndrome and alexanders disease which mean his lung capacity is not as it should be. He goes for lung function tests tomorrow. I just worry they are not treating him and using his other problems as the excuse. His scoliosis has progressed rapidly over the last six months and a bout of pnemonia means his lung function hasnt recovered. oh dear, im in a waffle here. I just wondered if anyones chils had been operated on so young as before he got ill with the pnemonia they were going to do the surgery. He is currently on oxygen and i just feel like i am banging my head against a brick wall. I can understand they wont operate if he wont recover from the op but just wondered if anyone had been in this situation.
I'll shut up now as I am confusing myself. :o
Lori.

PNUTTRO
06-14-2006, 05:46 PM
If he is on o2, and has pneumnia, there is no way that anybody will operate now.

It sounds like you both are having a rough time of it. Hang in there. God bless you for all that you do for your son.

Although it doesn't feel like it now, it sounds to me like you have it under control. Like I said. Take it one step at a time.

crookedspine
06-14-2006, 09:29 PM
Lori, I can't help with your situation, but I truly feel for you and your son. I hope and pray that you have a doctor you can trust. I can't do much, but I can "listen". Linda

cherylplinder
06-15-2006, 09:19 AM
Carmell's son had VEPTR surgery with wonderful results.
I also wonder if serial casting would be an option for your sweetie. Do a search for these terms on this forum and you will find a lot of information.
Hugs,
Cheryl

Carmell
06-15-2006, 12:29 PM
Hi Lori,

I'm sorry to hear you have such a hard decision to make. What surgery are they recommending? If they are suggesting a fusion surgery to stop the progression of the curve, I would worry that his little lungs will NEVER have a chance to heal. Fusion is such a permanent and restrictive procedure in someone so very young. Fusion will stop the vertical growth of the vertebrae that are fused.

Did they talk about adjustable rods that are not fused into place (ie, VEPTR or growing rods)? These devices (in a perfect world) would improve the size of the lungs and that would mean his lungs could grow more and be healthier. The drawback to adjustable rods is that he'll need repeated surgeries as he grows. If he's at risk with anesthesia, maybe multiple surgeries is not an option either.

Casting or bracing wouldn't be a good option for him either. Too restrictive on the lungs. The lungs would be even more confined and not able to expand on their own.

Good luck! I hope you can ask lots of questions and get some good answers. Keep us posted.

mike m
07-09-2006, 01:07 AM
I know this won't help with your situation per se, but I just wanted to let you know I really feel for you. My name is Mike as well and my mom too calls me Mikey. She is the only one who uses that name. When I was born I almost died in the hospital with blood problems. In recent years, it has now been a laundry list of medical appointments, issues, and surgery. It is tough for her. I think all parents want the best for their kids - normal lives, health, wellbeing. If your kid really wants a new bike for christmas, if you like, you can save money and buy him the best bike on the market. But what do you do when all he wants is to his health or a normal life?

I'm 24 years old, and besides a single tear earlier today when I found out what I am now in for in this next chapter of my life with scoliosis, I can't recall crying in a decade. Yet, I cried as I read your post. I'm actually full out crying now as I type this.

I'll be starting med school in Sept, and sometimes stories like this and even like my own just make it all seem so ovewhelming. I just don't know what to do. The world can be a beautiful and difficult place. I suppose, what choice is there but to take the bad with the good?

I hope everything goes ok for you and your son. I hope you are doing well enough with it. I'm sure your son knows you really care about him and love him and I'm sure that means a lot to him.

All the best.

Mike