When is it time to say no

[mainecoon lover]

When is it time to say no to operations.
DD has had 7 major operations in total and have lost count of the smaller operations.
We were told in November that she would need a VNS and they would put her on the waiting list and it would be 5 months.
We agreed to her going on the list but said we had not made our minds up to if she should have it. I still am not sure now.
We went to Bristol today to see the surgeon that did her spinal surgery. It was a 18 month check up appointment.
We have come away in shock and left the surgeon in shock. She has pelvic tilt and he is not sure how and why.
He is going to talk to other surgeons about this and says he does not know what to do but it could mean more surgery.
We had become aware she leaned a little more since coming home from the states but put it down to outgrowing her chair.
This now answers why she was so uncomfortable on the flight.
What this will mean for her future i am unsure :nonono:

[simon and marcie]

Awww i am sorry. As parents it is soooo hard making the right choices for our children. Whatever you choose it will be the right one for her.

Take care


Marcie ;)

[ryhillrose]

I really feel for you, and your dd. My ds also has this and it has been managed with a moulded seating system, before it got too bad. They now want to use botox on him as he is getting so stiff.
It is so hard knowing whether or not your'e doing the right thing, by allowing the 'establishment' to operate, inject, etc, etc.
You will do and decide whatever you feel is right for your dd, after all you know her the best, doctors can give their opinions but they dont live with her 24/7.
I hope things get sorted out for her soon, it is uncomfortable and my son had a lot of back ache before the new seat.

Good luck and a big KISS to your dd.

Sally xx

[highland lass]

hi i have no answer to your problem sadly i wish i did but just to say thinking of you
i am torn about putting my son through 1 operation when he is 10 for his femoral torsion so your problem and worries are far greater than mine not an easy call but i am sure you will be guided safely by many
take care

[jlw34]

What a tough decision, my DD has a minor op for a cyst on her forehead soon and i'm dreading it. Never had either in hospital before!! I feel for you having to go through it all those times.. XX

[Disneybumble]

No advice hun but wanted you to know that i am thinking of you all. Big Hug

[Jedi_Angie]

Just wanted to add that I am thinking of you and your family. It's a tough decision to make, but you know your daughter best and I'm sure you'll do what is best for her.

[mainecoon lover]

Thanks all.
I think we need to get these doctors together and discuss everything and of dd as a whole just not what they deal with.
I sometimes think they do not see past what they are dealing with and what dd has had to go through.

[Jan]

I sometimes think they do not see past what they are dealing with and what dd has had to go
through.

I think you've hit the nail on the head. They need to take a holistic approach.

Good luck, such difficult decisions. Perhaps you need to ask yourselves how much is the quality of her life going to be improved and for how long before coming to a decision. Good luck again.

[Little Monkey]

What a very tough decision you are going to have to make......I have no answers I am afraid - but wanted to send you all loads of (((hugs)))) I am sure you will get loads of support and guidance from others who are better qualified than myself...

[loadsapixiedust]

My heart goes out to you. It's neever easy making these sorts of decisions. You can only be guided by the expert advice of the surgeons and their team, your DD's opinion (if she is able to make an informed choice) and your own instinct as a parent.

We have said yes to some interventions and no to others for our DS and so far feel we've been guided to make the right decisions which have had good long term benefits. I don't know how I would ever handle making a decision which turned out to be not so positive in outcome.

My advice is to take all the time you need and ask all the questions you have to in order to feel comfortable that you understand what you are being asked to agree to and how it will affect your family. Medics are often very good at sorting out the mechanics of these things but not so good at dealing with the day to day problems of coping after surgery.

Big {{{hugs}}} to you both.

[Nordicpollan]

Dear Michelle,
My heart goes out to you. We were in exactly the same position this time last year. One minute we thought 'yes' and the the next it was 'no'. In the end we ended up getting a second opinion and still had the yes/no but then Stus health took a down turn so the surgery became a no go anyway. We too travelled to Frenchay and they just don't get to see Stu at his best as he is so shattered after the trip there, I wish they could do the odd clinic a liitle nearer!!

I you ever want to just chat PM and I ll try and help if I can. Many years ago(8) Stu also had a deep brain stimulater fitted for his stange movements and this a total success. :grin:

Karen

[tinacooper]

ive read your great trip reports and obvpioulsy heard the distress you d d is in. as a parent i cant imagine either what you are going through but i would get as many second opinions as you can and re ask your surgeon for their honest opinion.if any operation helps the quality of your daughters life than i think i would go for it but obviously you would have to weigh up the risks. dont think i have hleped much but i hope it all works out ok whatever you decide.

[Whiskers.merry]

Hi
Sorry I have no wise words, but I do feel for you and your family, and wish you the best possible outcome.

Merry xx

[Tiggernut]

I'm sorry that your DD (and you of course) has to go through all this. I can't really comment on the pelvic tilt problem but with regards to the VNS, the 'good' news is that the procedure for this is fairly minor - most of the patients I know who've had this done (I'm an Epilpesy Specialist Nurse) have been in over night at the most. They have a small scar on their neck (less than an inch long in most cases) and a slightly larger one on their chest (about 2.5 - 3 inches max). Both incisions are superficial (ie only under the skin - no cutting through muscle etc) so the pain they feel is pretty minimal.

HTH :grin:

[dkra2007]

Aw Michelle...our kids go through so much don't they and I agree that each consultant only looks at their own 'piece' (if you know what I mean) and nobody considers the whole person (and their family). I'm waiting for another surgery date now for another big op for DS. We joke that he is a work in progress as we repair one thing another thing needs doing. You just have to keep going knowing that hopefully you are improving their quality of life and reducing their pain.

As a loving mum, I know you will do what is best for your DD - and nobody knows more than you what that is :)

lots of love to you both

[Sheeps68]

Just wanted to send my love to you. Am sure you will instinctively know if it was one step beyond what should be done or timing not right etc. The closest I've got is to say no to tests that are a bit nasty and only gave monitoring information and would have no impact on treatment either current or future.

Anyway best of wishes.

[mainecoon lover]

Aw Michelle...our kids go through so much don't they and I agree that each consultant only looks at their own 'piece' (if you know what I mean) and nobody considers the whole person (and their family). I'm waiting for another surgery date now for another big op for DS. We joke that he is a work in progress as we repair one thing another thing needs doing. You just have to keep going knowing that hopefully you are improving their quality of life and reducing their pain.

As a loving mum, I know you will do what is best for your DD - and nobody knows more than you what that is :)

lots of love to you both

Hope the operation is sooner than later and all goes well.

[mainecoon lover]

We have had a letter today from the consultant. They want to put Bethany under anasetic and have a really good luck at what is going on. She is on a waiting list now. Not sure if it is 3 or 6 month wait.
We were due to go to London but will now cancel and arrange something when we know what is going on.

[sunsetlakes]

Sorry we have no advise to offer you - I'm sure you will make the right decision when the time comes. Just wanted to say we are thinking of you xx

[jcjcjc]

Just wanting to add that i am thinking about you and your family, she looks so cute and i so hope things will be sorted for the better real soon, Jc xx