102 degree curve, surgery cancelled

[netty_05]

hiya my name is jeannette,
my son kristan is 14 years old now, he has downs syndrome, cerable palsy, epilepsy and severe brain damage,

every year kristan developes pneumonia, and when he got his chest xrayed i allways mentioned the curve in his spine to his doctors,

he was never referred to a specialist untill last year, when i insisted,

when i seen the specialist he gave kristan xrays and found his curve was 90 degrees, and suggested surgery,
i was very worried that kristan may not survive the surgery and as he was taking growth spurts and awaiting a special wheelchair i asked to wait a few months,

when we went back 6 months ago his curve was measured at 102 degrees, and the doctor said the only way forward is surgery or his lung and heart will be crushed,

i was devestated and felt so guilty for waithing the 6 months,
he was due to go into he hospital next monday for his scans and mri,

but due to hse cutbacks his operation has been cancelled indefinitly,

i am fuming with the hse, the doctors, and myself for not realiseing how serious his condition is,

is it normal for doctors to see a childs spine curve that bad and then wait untill he is near dead and his mother demanding to see a specialist,

has anyone out there got a child as bad as my son,
im really thinking of going to a solicitor to see if i can force the hospial to operate,

[jillw]

Jeannette,

I'm glad you insisted on a specialist - and am surprised to hear that it wasn't brought up by others earlier. I'm sorry to hear that the surgery had to be postponed indefinitely...I hope they are able to do it sooner as opposed to later. Please don't blame yourself for waiting a few months...you didn't delay things. In fact you are the one who got the ball rolling in the first time by advocating for your son. I can't answer any of your questions since I don't have any experience with fusion, but wanted to let you know that I hope that the other issues delaying the surgery are cleared up soon. Hang in there....

[pmsmom]

hiya my name is jeannette,
my son kristan is 14 years old now, he has downs syndrome, cerable palsy, epilepsy and severe brain damage,

every year kristan developes pneumonia, and when he got his chest xrayed i allways mentioned the curve in his spine to his doctors,

he was never referred to a specialist untill last year, when i insisted,

when i seen the specialist he gave kristan xrays and found his curve was 90 degrees, and suggested surgery,
i was very worried that kristan may not survive the surgery and as he was taking growth spurts and awaiting a special wheelchair i asked to wait a few months,

when we went back 6 months ago his curve was measured at 102 degrees, and the doctor said the only way forward is surgery or his lung and heart will be crushed,

i was devestated and felt so guilty for waithing the 6 months,
he was due to go into he hospital next monday for his scans and mri,

but due to hse cutbacks his operation has been cancelled indefinitly,

i am fuming with the hse, the doctors, and myself for not realiseing how serious his condition is,

is it normal for doctors to see a childs spine curve that bad and then wait untill he is near dead and his mother demanding to see a specialist,

has anyone out there got a child as bad as my son,
im really thinking of going to a solicitor to see if i can force the hospial to operate,

Dear Jeanette, Please don't beat yourself up. You went on the information that you had from the docs. What else could you do?

Please keep us posted as to how things go with your son. You will be in my thoughts and prayers.

[mamamax]

Hi Jeanette - I don't have the reference handy, but curvatures can vary widely depending upon the time of day any x-ray is taken .. so please, don't beat yourself up. I would encourage you to contact the moderator, Linda Racine http://www.scoliosis.org/forum/member.php?u=122

She is a wealth of information, and may be able to help lead you in the right direction to hospitals that may be able to help Kristen. I don't know what hse cutbacks are exactly or how that would delay surgery - Linda would be a good contact to begin sorting out the situation. Will hold you and Kristan in my thoughts and I hope this gets resolved for you soon.

[Ballet Mom]

Hi Mamamax,

I believe the HSE cutbacks are in Ireland. There were some posting on the other scoliosis site just a little while back where they managed to get a patient their needed surgery through a donation from the publicity.

http://www.irishhealth.com/article.html?id=12274

http://www.scoliosis-support.org/showthread.php?t=7819

[Ballet Mom]

Here's the actual article of the donation, in case you don't want to wade through all the conversation and postings...the surgery should have happened yesterday on the 4th of July

http://www.irishtimes.com/newspaper/...249340215.html

[mamamax]

Thank you Ballet Mom. I read everything. One poster to the board pretty well summed up my feelings by saying: So pleased that someone has so generously helped her, it's just a shame that she had to be in that position to start with.

[LindaRacine]

I've seen half a dozen or more articles in the last few years, about these types of delays in Ireland and Scotland. It really illustrates the downside of socialized medicine.

Netty, I can only hope that they get you back in the queue as quickly as possible. If you have any connections, perhaps some media coverage might help.

--Linda

[netty_05]

thank you all so much

hi to every one who answered me on this message,
im sitting here with tears rolling down my face, i fell so unable to do anything,
the hse is irelands health system,
with all the resession, the government has cut back on health issues, espeially with elderly and the disabled,

kristan went into hospital last week and had most of the tests done to see if he is a candidate for surgery,

4 doctors dont think he will survive the post surgery, 3 think he wont live the year without,

i dont have all the answers yet, i am still awaiting an appointment from a lung doctor, witch will take 3 months,
then i have to wait 8 weeks to see the orht specialist,

if we lived in another contry id say there would never have been any waiting, this would have been seen years ago, and somthing would have been done,

i will keep you all in the know,

thanks so much for your answers,

netty,

[pmsmom]

Dear Netty,

You and your son are in my thoughts and prayers. I really don't know what to say except that I wish I could be there to hug you and be with you.

Is it possible as Linda suggests to get some media coverage or perhaps go out of the country for this surgery?

Are there any doctors in the US who could help? Try www.srs.org to see a list of other available specialists.

God bless you, dear!

[Ballet Mom]

Hi Netty,

My heart goes out to you and your son. At least it sounds as if Kristan is receiving medical help at this point. As pmsmom suggested, if you are able to somehow get to the USA, Dr. Skaggs at Children's Hospital Los Angeles is an excellent surgeon and deals with high risk patients. Here is a link to a video on Youtube about one of his high risk surgeries.

http://www.youtube.com/watch?v=CCAmnkHf-9U

http://www.childrenshospitalla.org/s...JsG/b.3905357/

God bless you and Kristan.

[Lorraine 1966]

Netty sweetheart, what can I say. Maybe get in touch with the media, tell them your son may have a better chance in the the USA as Ballet Mum suggested, maybe people would be willing to help.
Dear anything is worth doing isn't it eh, get out there and start stamping your feet for justice for your son as surely something should have been done when you kept saying his Xrays were not right, and you felt there was something wrong.
I believe Irish people are of such wonderful character and would only be too glad to stand behind you, and maybe all of you can help a miracle happen.

Bless you
Lorraine.

[netty_05]

still waiting

hiya all,

just to let you all know how we are going,

kristan is one month out of hospial today after having all them pre op tests done,

we are still waiting to see a lung doctor we havent even been given an appointment yet,

only good thing at the moment is i know a girl who works in the private part of his hospital and she has been making phone calls and pushing along kristans appointments,

i also attended a demonstration out side the hospital last months and the press were very interested in our plight,
so they ran our story,
no one has made any comments about us so far,
but i hope it rattles the hse and the hospital, that we are no longer gona sit and wait around for them,

i am prepared to wait one more month for these appointments,
if they dont come i will go on tv, or radio, i will shake up the establishment,

i will defor keep you all posted,

and thank you so much
for all your support,

love,

netty and kristan,

[LynnMarie74]

Im very sorry to hear about your son's situations....I cant even imagine how you and your family are feeling. You'll be in my thoughts....good luck and stay strong for your son.


Lynn

[Ballet Mom]

Hi Jeannette,

Hope all is going well with Kristan!

Much love and prayers for Kristan and you.