Help! I desperately need some advice

[Kitty]

Hi All,

My daughter's surgery is scheduled for Tuesday 18th and today (Wednesday) we have just returned from our last visit with the anaesthetist. We are now facing a particular dilemma which is causing me much stress and I need some advice from you all.

What would you do?????

Tahlia has only 40% lung capacity and the anaesthetist and surgeon have given me two options:
1. go through the back only
2. go through front and back (that is, do the thoracotomy and anterior release)

The issues are that the surgeon does not think he can get much correction because Tahlia's curve is quite stiff. It is now also quite severe at 80 degrees. The issues we are facing with the reduced lung capacity is that she may be in ICU longer and they are talking a tracheotomy. They also outlined the risk of death following a previous patient who did not make it. They have made it clear that they are wary and cautious about doing the anterior surgery with her current lung functioning.

So at this point the surgeon is saying that even if he goes through both front and back, he is not sure how much correction he can get. So I am wondering if it's worth putting my daughter through that operation and the potential extra risks and impact on her lungs post-op if we may not get that much correction anyway. But if we go through back only, there is less chance of correction, but he can hold the curve.

So they are basically saying to me that the posterior and anterior is greater chance of success, but higher risk, whilst the posterior (back) only has less risk but also less chance of correction.

They are also suggesting that they could try to deflate the lung initially, to see if they are able to do this, and if not they won't go ahead with the anterior release because the surgeon needs to get high up in the chest!

I am SO SCARED and have no idea how to make this decision. What should I do? Can somebody please share with me how they would make this decision, or indeed what they would do if it were their 15 yo daughter.

I really need some guidance.



Thank you,
Lisa

[Sherie]

Hi Lisa

I'm so sorry to hear you are having to deal with this additional worry, I know how difficult this is without these other issues.

If this were my daughter, I would personally opt to go posterior only. My daughter's curve was thought to be stiff too according to her bending xrays but the doctor was able to get nearly 100% correction anyways. You can see her degrees in my signature, they weren't as bad but she still had 2 major curves and they turned out beautifully.

We consulted 5 doctors prior to my daughter's surgery. Several of them indicated to me that many surgeons are moving away from anterior procedures because with the newer instrumentation, they are able to get nearly as good correction as with anterior release minus the risks associated with it.

That is my opinion only, I hope others will chime in here to give you some different perspectives.

I wish my best and I will keep your daughter in my thoughts. We are going for my daughter's one year check up next week, you will be surprised how fast the time goes.

[scoliboymom]

Hi Lisa

I was very concerned that Patrick might need anterior surgery too because his curves were so high (over 80 by the time of surgery) but when I questioned the surgeon he said it wasn't needed. His curve was also very stiff and although he didn't have a pulmonary test done I know his lungs were not as they should be. As it turned out they did get a much better correction then originally anticipated. Like Sherie, I too would opt for my own child to have only posterior surgery in a situation like yours.
It's never easy to see your child go into surgery, even a minor surgery, but having to make a decision like this seems so unthinkable.
All the best to you and your daughter next week. I'll be thinking of you.

Ramona

[Kitty]

Hi Sherie & Ramona,
Thank you both for your replies. However, I am unclear as to whether your kids had just the posterior when they had surgery, or did you actually agree to the anterior release????

Please let me know.

Thanks,
Lisa

[Carmell]

Hi Lisa,

I believe Ramona and Sherie's children's surgeries were posterior only. The surgeons were able to get more correction that originally thought once they started operating. Posterior only is less risky for lungs. The ONLY concern I have about posterior-only surgery for your daughter is that it's not going to help IMPROVE her current lung function as much as anterior surgery will. But, like they also said, the spines appeared to be very stiff prior to surgery, but once surgery started, they were more flexible and they achieved a better correction. I sincerely hope the docs are giving you "worst case" scenarios here. Not much information in helping you decide what procedure to do.

I would hope that the surgeon would begin the surgery, evaluate the actual situation, then make the best decision for her. 40% lung function is a serious issue. Hopefully they will figure out how to make it improved. My Braydon (age 13yrs) has 41% total lung function, but he's had reduced lung function his entire life (from a 75 degree thoracic curve as an infant). His body has compensated well for the low function.

Is there any way you can ask the docs if they will believe the decision will be made that is BEST for her once surgery starts? If you choose posterior only surgery, is that the final answer? Can they adjust to the best option for her at the time? I would hope. Good luck and we'll be sending our very best your way.

[Pooka1]

I would hope that the surgeon would begin the surgery, evaluate the actual situation, then make the best decision for her.

This makes sense.

This is a very technical medical issue that will depend at least in part on the situation on the ground in real time. Or not.... maybe they have data on anterior w/ x% lung capacity and not just the one anecdotal case they mentioned.

The fact that the surgeons are asking a parent to decide on the procedure is odd. Not sure I would know what to tell them if it were me. I'd probably throw the ball back in their court or get another one or three opinions.

Tough situation.

Good luck.

sharon

[Sherie]

Carmell is correct, Sheena's was posterior only. I inquired about anterior but that was never an option for us. I was under the impression from researching that better correction could be achieved with anterior and with fewer levels fused, but that's not necessarily the case. I would ask how much difference in correction would they expect between the 2 procedures and how that would affect her overall outcome.

I'm not an expert but I'm wondering if they can actually make that kind of decision during surgery. There is so much planning prior to starting any procedure, I just don't see how they could start an anterior once the posterior is already underway. If an A/P operation is planned, don't they always start with anterior release first then instrumentation follows posteriorly?