Spinal Surgery (long! )

[Nordicpollan]

Hi Guys
Info neded

DS2, Stu ,has many special needs it very hard to sum up his real condition as he doesn't really fall into anyones bag!
He has cerebral palsy, non controlled epilepsy, a complex movement disorder(like Parkinsons), he has 99.9% of his nutrition via a gastrostomy and so the list goes on and on.

He has had many surgeries over the years, so many I don't want to count!

How ever the Biggie has arrived. Stus back has over the last 12 months has become a cause for concern, he is 19. nearly 20 but is very small for his age weighting only 5 stone, so wears age 12/14year old clothes . In the last 12 months he has had a growth spurt, which has included a bit of pubity and causing his back to start to twist.

When we went to see the spinal specialist in Dec06 he was concerned at the rated his back was moving but was also worried about Stus weight, skin coverage and the fact his epilesy wasn't controlled (like we haven't tried every thing on the market! ). He asked us to do some research on scolosis and cerebral palsy and he noted that Stus curve was at 100 degrees.

This week we had the follow up appointment. Hubby and I have spent the last 5 months doing research and had made our minds up that we had to go ahead with the OP. Stus back is getting worst ect.

So off we go to see the surgeon, Hubby, Stu, me and his physio who has been with Stu through thick and thin for the past 8 years.

After waiting 2 3/4 hours to see him as the clinic was running late, he took one look at Stu and said he couldn't help as epilepsy control was bad, he didn,t weight enough and he only gave a 30/70% chance of a good result! Stus curve has moved to 140 degrees in the 4 months since we last saw him. He then said Stus condition would only get worst, his pain would increase and the fact we were trying a new epileptic medication was a waste of time ( he wrote to the neuros asking if they would try this new med! ). He then said we should go away and have a good think he would send us a letter saying surgery was not his option but if we wanted to do it he would put Stu on the list however he thought the result might not be good, but if Stu doesn't have the Op he will not be able to be seated in a wheelchair with in 9 months so will completly housebound with out any any peer group interaction. Hubby and I are totally devastated. We feel like we have all been given a death sentance. Stu has beaten all the odds over the last 19 years but the pain caused by his back means his over outlook is bleak!

So Sorry to waffle on so but any info any one has on spinal work would be greatfully received.

Now also trying to work out if we don't do surgery how we can get Stu to WDW for one last holiday before seating becomes impossible. Its not just not being able to find a comfy wheelchair it seating him for the flight over/back. I am also going to chase pain clinic to see if they can help. Have tried various things in the past but have had no real sucess so fingers crossed.


Again sorry about the waffle but at a bit of a loss


Karen

[Guest]

Karen you don't have to say sorry for anything. I'm just sorry I don't have any info on spinal work but wanted to wish you luck, and say what wonderful supportive, caring parents you are.

[Guest]

i am so sorry to hear the bad news as if stu hasnt suffered enoth
i havent got any info for you just loads of best wishes and fingers crossed
:pc

[Guest]

Hiya Karen, first of want to send you, DH and Stu a massive hug.

From reading your post it sounds like a spinal fussion that they were considering for Stu was it?

If it is then i have worked with lots of children that have them, some who have had them for a long time and some both pre and post op. It is major surgeory as im sure you and your DH are more than aware.

All the children i have worked with that have had this surgery have all had different life limiting conditions (i worked for the childrens hospice) so surgeory was very risky on them all but they all came through it.

If there is anything you want to ask then just shout and i will try my best to answer if i can xx

[Guest]

Send you lots of hugs, and best wishes.

Julie

[Guest]

sending massive {{{hugs}}} to you all

I can truly understand how devastating this news must be, you clearly want the best for your son. It is awful when you wait ages for a consultation only for it to be a big let down. I would, as you are entitled, ask to be referred for a second opinion. Surgeons have greatly varying opinions and different areas of expertise. Someone else may be able to offer a different opinion. Try to get some info on which surgeons are performing this type of surgery and seek them out.

We had a similar situation some years ago with our son, his paediatrician was not for offering surgery and we muddled on for years trying different meds without any real success, but after a chance meeting with another consultant we sought out the only surgeon in the UK who would do the op he needed on a child with his medical history and it was a turning point in his life. Yes, it was a big risk and not a pleasant experience, but I doubt he would even be with us now otherwise.

Maybe talk things over with your GP or the physio if she is supportive and decide on your next move, but it does sound like you will need to look for another surgeon.

wishing you all the best

[keith&carol]

Hi,
We are going through this with DD4 at the moment. Her curvature didn't start til she was in her 20s. She's now 30 and it's still getting worse.
She wears a support shell which helps her sitting position but her hips are now twisting and it's having an effect on all her other internal organs. Our local hospital doesn't have a specialist for conditions as severe as this but we finally got funding in spring last year to see the Consultant at Southampton. Her appointment eventually came through for November but when we arrived at the hospital he had called in sick and our replacement appointment is for June! . So much for Mr. Blair's improved health service!
In fairness Southampton's unit is overwhelmed with cases. dd's chance of surgery is not good because she has severe osteoporosis.
The only thing I can suggest for you is to ask for a second opinion.
If you do decide to make another trip to Florida, Virgin have Burnett Seats available. they are a fleece lined bag of beads and you pump it up to give the most comfortable support and then lock it off. You can keep redoing it if you need to. DD has used this several times now. The only downside is that you can't use the table so we take a small lap tray.
I really do wish you well with getting something sorted. I really DO know how you feel.
We were told there is 1 state of the art unit in England. I think it was Farnborough but I could be wrong. We haven't got funding for that one yet but we live in hope.
Carol xxxxxxxxxxx

[Guest]

Hi my DD had this surgery last year and it has gone really well. I am guessing you went to Exeter hospital. Ask for a second opinion. My DF and another mother were told the same as you. They went to see a doctor in Bristol (he operated on my DD). My DF dd had it done and she was home in a week and has never looked back. The other child is on the waiting list. If you think this is the best option for your DS ask to see other doctors.
Have you been told about the new treatment for epilepsy. They put a stimulator under the skin. You have a little magnet and if he has a seizure you swipe it. It has worked really well on some people who's epilepsy was completley out of control. They are now drug free. They do this in Bristol.
Good luck. PM me if you want to know the surgeon's name.

[BarryandCaron]

I'm sorry you are having such a battle in getting treatment for your DS.

I have two friends with disabled teenagers similar to how you describe your son. One had his back operation in January and has never looked back. he is a healthy young man though. My other friend feels her daughter is too ill to under go such a serious operation. She has a lot of chest infections and generally not a well young lady.

If you feel this is the right way forward and you seem to have done your research I would definitely push for a second opinion.

Originally Posted by mainecoon lover

Have you been told about the new treatment for epilepsy. They put a stimulator under the skin. You have a little magnet and if he has a seizure you swipe it. It has worked really well on some people who's epilepsy was completley out of control. They are now drug free. They do this in Bristol.
Good luck. PM me if you want to know the surgeon's name.

See more...

Our DS2 was one of the first children in our area to have this fitted in 1999 (called a Vagus Nerve Stimulator). Although he isn't seizure free he doesn't have 'drop' seizures now. PM me if you need to know any more about it.

Caron

[Saratoska]

Hi Karen you waffle away

I can't give you any advice (sorry) other than get a second opinion with another Consultant. Our DS now has scolosis due to his spinal cord inury when 16. he kept growing in height up until last year but there was nothing now to support his spinal cord during growth hence him now having scolosis . been told there is nothing they can do . he has a special back support to keep him up.


sorry I can't give you much help but sending you