from good to bad

[zach's mom]

from the good to the bad
can anyone give me statistics of success verses unsuccesful or even mortality rates. I am starting to have second thoughts and am making myself sick, which I am trying to keep hidden inside from Zach. I have always told him throughout too many surgeries to count, that if I am not affraid then neither is he. This time my gut is telling me something just isn't right!

[Gail]

Hi Zach's mom,

I'm sorry to hear that you are so worried...what types of problems is Zach having and what type of surgery did he have?

I will stop and pray now for you and Zach.

Kindest Regards,
Gail

[LindaRacine]

Hi Zach's Mom...

I have links to scoliosis treatment study abstracts on my website:

http://www.scoliosislinks.com/Outcomes.htm

Regards,
Linda

[zach's mom]

Posterior neuromuscular scoliosis fussion

Zach is 12, and was born a quadrapalegic due to a stroke in utero. The effects that he deals with today include: heart and lung deficiancies and a 48 degree curve that will be operated on May 31. Two stainless steel rods will be used instead of titanium(which cannot be used due to the pacemaker)
The fussion will go from cervical to lower lumbar, with a rod on each side, wires holding the rods to each vertibrae, and bone chips around that to eventually form a solid fussion. I am in panic mode, walking around as if this really is not happening. Despite numerous surg. this one will be done with dad on militrary deployment and I am scared that I have made the wrong decision. I am having a hard time distinguishing between my fear or a gut feeling that I have telling me something just isnt going to go right.

I just need to know what to expect post op(immediately post op)
thanks to anyone that can help!

Lisa Zachary Keegan Tuma's blessed mother

[LindaRacine]

Hi Lisa...

In "The Scoliosis Sourcebook," Dr. Michael Neuwirth has an entire chapter on what to expect in the hospital. I'd strongly recommend that you find a copy of the book to read at least that chapter. Also, Dave Wolpert has written an entire book on scoliosis surgery: "Scoliosis Surgery The Definitive Patient Reference." If you have time, it will also be worth the time.

The one thing you should definitely be prepared for if Zach is going to have posterior surgery is that his face will be extremely swollen when you first see him. It's nothing to worry about, but is quite alarming if you're not expecting it. You may also be surprised at the number of tubes and wires connected to your child right after surgery. Most will be removed in the first few days following surgery.

Hang in there. This will be much tougher on you than it will be on Zach.

Regards,
Linda

[lorrie]

Hi there
Just a lot of good wishes coming to you. I'm sure you did your research and took advice before you made this decision. Trust yourself.
This operation is different: Genevieve has also had lots of ops and I've never felt the way I do about this one - it just makes me want to throw up so I do sympathise lots.

Lorrie

[Lura]

Zach's mom,

Hi there! My name is Lura, and my son Alex had surgery March 28. I think I know exactly what you are feeling. Alex is a Down syndrome little guy, and something in my gut just kept telling me he wasn't going to make it through this surgery. I dreamt about his funeral (morbid I know), and I just had this feeling constantly. They took him to surgery, and I lost it, sobbed uncontrollably (out of his sight of course), and didn't breath a normal breath until he came out of surgery. Not only did Alex make it just fine, he is thriving today!! He is so happy and full of piss and vinegar. They told me he might regress is physical and cognitive areas which really scarred me since he does pretty well, but today he is more independent than before surgery. I think he must have been pretty uncomfortable before the procedure and now he feels so much better ( I am guessing since his verbal skills are those of a 3-5 year old and he can't verbalize how he is feeling too well).

Anyway, say a prayer and know that I'll be sending some your way too! Keep in touch, I'll be here for you!

Lura

[zach's mom]

thank you

Lura,
Thank you so much for your kind words! Each day the surgery gets a little closer, and I pray a little harder. I am sure that the Lord has put these wonderful Dr's in our lives for a reason, and I am also sure that that reason is Zach
I will surely be hoping to speak with you on Tuesday! Surgery begins at 9:30!
Again Thank You so much for your caring words!

[Lura]

Zach's mom,

Know that my thoughts and prayers go with you this week! He will be a trooper and will amaze you! Let us know as soon as you can how surgery goes!

Lura

[Risa]

Zach's Mom,
I just wanted to let you know your in our prayers. I to was feeling aprehensive about the surgery for marisa, then I would think about her without it and the surgery was the better choice for her qualitiy of life. Now that it's ii days post op I can already see how much better she's sitting. I can say it was worth it for her. It was hard on me seeing her through, but always remember after the third day things look better. Love Risa

[momofthree]

Dear Zach's Mom:

I know how you feel about putting your child thru the surgery. I had many questions myself: ie: is she better off with it or without it- and she answered that question for me.

My daughter's surgery was last tuesday (5-24) she had a 54 degree right thorasic curve. She actually got up to walk 12 hours after surgery and was home after 4 nights in the hospital. Today is her first full day home and we are just trying to figure out the best position in her bed, best chair for her to use ect...She handled this situation like a trooper.

I will be thinking and praying for you on Tuesday. Hang in there-these kids are strong.

[Lura]

Risa and Momofthree,

Sorry, I haven't posted much since Alex's surgery, so I haven't been in contact with the ones just having had surgery. I am so glad yours have gone so well and on my end, it gets better every day!

Take care!

Lura

[phaden]

This time my gut is telling me something just isn't right!

Hi Zach's Mum:

My baby girl (she's 14, but she's still my baby girl) had her surgery on 2nd May. Before the procedure, I too had a "bad feeling". However, everything went fine. We had an experienced surgeon, and a good hospital, and she had no major problems from the surgery. Eight days later, she was back home.

While I would never want to trivialise your strong emotions about this threat to your child, the odds of a problem with scoliosis surgery are very low, and those odds apply no matter how frightened the Mum is. Nature makes Mums worry about their children because they will be vigilant and keep them safe, but the probabilities are not affected by motherly anxiety.

Out of all the dozens of juvenile scoli corrections I have heard about on this forum and spinekids, nobody has ever had major complications. You go ahead and worry, because that's your job, but really, this is a well-understood and invariably successful procedure. I reckon everything will be ok.

Thinking of you at this difficult time.

Patricia

[Erika1988]

Zach is 12, and was born a quadrapalegic due to a stroke in utero. The effects that he deals with today include: heart and lung deficiancies and a 48 degree curve that will be operated on May 31. Two stainless steel rods will be used instead of titanium(which cannot be used due to the pacemaker)
The fussion will go from cervical to lower lumbar, with a rod on each side, wires holding the rods to each vertibrae, and bone chips around that to eventually form a solid fussion. I am in panic mode, walking around as if this really is not happening. Despite numerous surg. this one will be done with dad on militrary deployment and I am scared that I have made the wrong decision. I am having a hard time distinguishing between my fear or a gut feeling that I have telling me something just isnt going to go right.

I just need to know what to expect post op(immediately post op)
thanks to anyone that can help!

Lisa Zachary Keegan Tuma's blessed mother

Hi Lisa
my name is erika and I'm seventeen I had this type of surgery 4 years ago and I can't say much about the mortality rate I didn't really look into that before my surgery but if I'm right it's not really high. Immediatly post op what to expect that's a difficult one to answer but I'll tell you about my experience and i hope it helps. Afterwords in the recovery room. you most likely be there for this they will hook up a pain medication for him and he will be allowed to have chipped ice, I couldn't eat or drink any linquids for about a week I lived off IV's and milkshakes other then this it's just dealing with the pain which woke me up at night many times, but taking pain pills can help that I'm not sure if this helped or not but I wish you and Zach the best.

[MegansMom]

Zach's mom,
Oh honey, I feel for you and I am having all the same feelings right now.....My Meggie has her surgery scheduled for July 19th......I am just sick over this..My meggie has had numerous other surgeries also, but none that made me feel like this one, it is just soo big...Like your little guy she will have total spinal fusion with the rods and it will be wired to her pelvis area, we go this Wed and get all the particulars, I have 5 pages of questions......Like you I don't know if it is just my gut feeling or what.....I am praying that all has gone well for your little guy, and will keep you in my thougts and prayers......