considering surgery again

[Connie&Andrew]

I have just heard from TCH on our most recent tape. They again have recommended surgery. Some of you may remember last spring TCH recommended surgery, but we decided to wait awhile. We now again are faced with the decision. Andrew just turned 2 and we feel that it is now time to make that decision.
I had a question that I would love to get input on. My husbands biggest concern is that he could lose some movement in exchange for the movement he will get. For those who have had the mod quad done, Did you notice any lose of movement that was there before surgery and what was that?
We would appreciate any input.
Thanks so much

Connie

[christy]

Lose movement--not in our case! The increase in movement and range was immediate and tremendous! Best of luck and peace in your decision. I know how hard it is.

[francine]

Maybe you can look at it from a different direction?

If we decide NOT to have the surgery, what is the long-term outcome on joint and structural health?


just throwing this out to you...

is there any non-surgical way to correct these contractures? will they be correctable later on in life if we choose not to do this surgery now? will the contractures get worse if they are not corrected and if so, how will this affect my child's quality of life now and in the future ? is there any point in which they will not be correctable? will scoliosis be an issue? what are the statistics on that? how is that treated?


I know these decisions are hard to make - we went through it three times and it doesn't even get easier (the only thing that gets easier are the logistical issues)

I hope that you keep on searching and asking until your heart says that you are either doing or not doing the right thing. Trust your gut - I believe it's a message from above.

-francine

[crystal]

Jade had mod quad sugery in sept. and WOW. the out come is great she uses her arm all the time now. it was so tight befor. know she doesn't need to compensate as much. BUt it was very hard for her and there was alot pain with the surgery. GOOD LUCK

[francine]

http://www.injurednewborn.com/maia/drquestions.html

also crystal mentioned the pain.... they are now using PCA pumps with the kids if you request it - you have to discuss this with your surgeon.

[Jocelisse's Parents]

When the TCH told us about the surgery we wait too long. The surgery was done just before Jocey's fifth birthday. Do not do the same mistake we did. Don't wait too long. You will enjoy how fast your son will improve. Is better to perform it earlier, he could forget the trauma of wear the splint (is very uncomfortable) and the pain. Tell the Drs. about the morphine pca pump just before your son go in the surgery room. Jocey used it as needed each 10 minutes. I knew about it thanks to Francine.

[DeShawn]

Rain had Mod Quad when she was 13 months old and handled it well. She didn't really complain very much and really seemed to perk up rather quickly afterwards. As far as pain is concerned, she didn't even take any medication in the hospital after the surgery which was suprising to me. I say that to say that every child is different and pain may not even be an major issue for Andrew, but its great to know that you can make use of the medication pump that Francine spoke of if Andrew needs it. The decision to have the surgery will be a difficult one, but considering the results that can be achieved afterwards is worth careful thought. I can say that we are glad that we allowed Rain to have the surgery when she did, and we have not regretted it.

DeShawn

[Kristie]

If you are feeling unsure about surgery I suggest getting a second opinion. It is quite likely that your insurance would pay for it as well. As with many medical issues different doctors have varying thoughts as to how, why and when they treat a problem. I think it is always a good idea to seek out the opnion of another specialist when surgery has been recommended. Actually I have even sought out the second opinion when it was not recommended... to be sure that we were on the right track.
Always,
Kristie

[TNT1999]

Nicole did not lose any movement before surgery, but her injury is severe so she didn't have a lot to lose at that point. For us, the risk was very low. She was 23 months at the time of the MQ. She did have some temporary weakness in her wrist (as she did prior to that following surgery too), but that all came back with therapy and splinting. She had some immediate improvments and some over time. Hope this helps. -Tina

[TNT1999]

Oops, of course, I meant that she didn't lose any movement AFTER surgery.

Best wishes to you during this stressful decision-making time.

-Tina