Appointment next week to discuss DS' possible surgery :(

[sparklymieow]

We have to go to GOS on wednesday to discuss the surgery they want to do on his tenons. I am really worried about it as I have no idea what it all entails. Has anyone any idea what will happen and what the sucess rate is??

[fairydust]

is that the op we're they lengthen them???

[Fio2]

I know a little boy who had it done and it was a complete success, he had CP too sorry thats all I know

[Fio2]

oh and good luck!

[sparklymieow]

I think they cut and lenghten the tenons.

[fairydust]

i had heard of the op - have you looked on the scope site at all there might be sometihng on there

[Blu]

Sparkly - is it tendon release? If so, that is a v minor procedure as far as I know, and v effective. Lots of people I 'chat' with on a specialist clubfoot (talipes) website have children who have had tendon release, and have had it done as a day surgery procedure - but with general aneasthetic, of course.
Where are the tendons they want to operate on (i.e ankle/knee?)
Who are you seeing at GOHS?

DS had surgery on the soft tissues in his foot, which went really well. He did have to be in platser for 10 weeks, but it was a BIG re-positioning operation, and anyway, it wasn't such a hassle as we feared.

Sorry to be so dim, but am I right in thinking your DS has cp?

[sparklymieow]

not yet, must do that. I think I am worried in case it goes wrong and he will lost all movement in his ankle and foot.

[fairydust]

i understand what you saying mieow - i havn't heard any good or bad things about the op

[sparklymieow]

We are seeing Dr Eastwood and Dr Carr. Yes Blu, DS has CP. Because its CP, there is always the chance his tenons will tighten back up anyway, so dont want to put him trough an op. if its not going to wrk, he is 7.

[sparklymieow]

I think it will be his ankle and back of knee

[Blu]

I understand your concerns, meiow, and think you should bring all that up with the consultant - ask about relapse rates, how long the convalescence would be, how big an op it is. Surely they will back it up with phyiso? We have a series of excercises to do with DS to keep his foot in the right position, and strengthen the muscles to keep it there.
Does your DS have orthotics, too? You could ask about that - DS has a splint at night to keep his foot in the correct position.

DS was younger, but he had 4 ops in 5 weeks, and sailed through it. And I do think tendon release is often done as day surgery.

[sparklymieow]

yes he has night and day splints. Just frond out that his physio is leaving though, so a bit gutted atm as I know she would have be so supportive through this,

[sparklymieow]

looked on the scope site and could only find info on selective dorsal rhizotomy, which is something I would seriously have to think about if its suggested, as its a big op.

[Blu]

Ooh, that's a shame. Can you make an appt before she leaves or call her and ask wht her opinion would be?

[sparklymieow]

I think she has already left. I spoke to her a few weeks back and she said she was leaving at the end of May.

[Davros]

I think this is not a totally unusual op for kids with ASD as lots tip-toe walk so the tendons between foot/ankle (don't know technical term) get shortened. I know of at least one child in DS's school who had this due to tip-toe walking and it went well and he is fine. May be irrelevant?

[sparklymieow]

NO SURGERY!!!!!!!!!!! they said that they will review him regularly and see how he goes...... wooohooooooo!!!!!!!

[Milliways]

Glad to hear you news

[Blu]

That's really good news, mieow.
What did they say about him?

[sparklymieow]

That at the moment he is coping with the tightness and if they did it now, he wouldn't benifit from it.

[Davros]

Bet you are relieved, hooray!

[coppertop]

How on earth did I miss this thread??? Brilliant news about not needing surgery, SM.

[fairydust]

that's is fantastic mieow - so pleased