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Thread: Upcoming surgery for special needs child - I have questions...

  1. #1
    Join Date
    Nov 2007
    Location
    California
    Posts
    39

    Upcoming surgery for special needs child - I have questions...

    Hello Everyone,

    This is my first post after scouring this forum and itís abundance of information. I appreciate all of the contributions everyone has made and would like to ask a few questions.

    First of all a little background: my daughter, Kim, was diagnosed in May 2006 at age 14 with a 43 degree right thoracic curve. It has progressed to 54 degrees and she is now a surgical candidate. In addition to her scoliosis, she is autistic and mentally retarded with a cognitive of age of 3-5 years of age with extremely limited receptive/expressive communication. However, as you can tell by my signature line she is still a great child but truth be told, yep, Iím pretty worn out most of time!

    I would be most appreciative if I could get some feedback on the following:

    - Is there anyone out there who has a situation similar to mine? That is, a child who will not comprehend why (post-op) he/she is in so much pain and how did you help your child? Did you have assistance post-op at home, such as a visiting nurse?

    - No doctor has recommended a MRI but I am pushing for one due to her multiple diagnoses. They all seem to think this is a fairly straight forward scoliosis curve and a MRI is not necessarily warranted since it will have to be done under sedation. However, two of the doctors I saw said they would order one if I feel it should be done (and I do) to ensure that there are absolutely no other underlying problems.

    - Any supplies I should be looking into for use during the post-op period, such as a bed rail, toilet seat riser, walker, shower chair (or any other items)? Is this something I should get ahead of time or would this be provided to us before we leave the hospital?

    - One of the doctors recommended she wear a brace 3-6 months post-op since she can be impulsive at times due to her autism and we definitely donít wonít her to be jerking her back around while the fusion is taking place. Does anyone have a child that had to wear a brace post-op?

    - Speaking of fusion, one doctor suggested doing a thoracoplasty and using rib bone for the bone grafting. The other doctor would use the spineous processes removed during the surgery in addition to donor bone and leave the ribs alone (he believes a thoracoplasty is not worth the additional discomfort/surgical risk and donor bone works just as well). Any thoughts on the donor bone combined with patient bone vs. patient bone only success rate during the fusion process?

    - How often is a blood transfusion needed and has anyone used the blood bank instead of the patientís own blood? Iím trying to determine what pre-op procedures Kim has to be put through and those where an acceptable substitute is available. Of course, her blood type is O- while her brother and I are A+ so our blood wonít do her any good (Kimís father is deceased).

    Sorry for the lengthy post but I thank you for listening and providing feedback. I greatly appreciate it!
    ca-native (daughter had surgery)

  2. #2
    Join Date
    Sep 2007
    Posts
    21

    RE:Upcoming surgery for special needs child - I have questions...

    Hi,

    I think if you go to NSF forums>Adolescent and Teen Patients (under 18)>Surgery section, you will find out a lot of information. Hope the best for Kim.

    Pat

  3. #3
    Join Date
    Dec 2005
    Posts
    40
    Hi
    I am curious who the Dr's are you have seen as I too live in Orange Cty, CA. My son is 13 and has seen Dr Skaggs at CHLA for many yrs now. Cole has had 10 surgeries as he was born with severe congenital scoliosis (fusions, halo, rods and final fusion with rods this past summer). B4 we went to CHLA we saw Dr Oppenhiem at UCLA medical center. I also have a friend whose son goes to CHOC for his scoliosis and spina bifida.

    Post op you will need some items for home and most likely you wont get from the Hospital (you can take what they have used on your child while she is there but that would usually be it tho you may also get thru insurance with Hosp/Dr help I think too). Cole's recent fusion he did not have any brace but when he was much younger he did have a cast and a brace after surgeries to hold the fusion and curve until set.

    To me the curve doesnt warrant immediate fusion surgery and was wondering if there is any specific reasons for it - aka is she having any pulmonary issues or is it pushing on her heart or lungs,etc..??? Cole's was well over 100 degrees when he was young and he has had many pulmonary/lung issues because of it. I also wonder if they suggest anything else or if they say you could still wait unless she is done growing then maybe it is good timing as it is best to wait as long as possible b4 fusing. It does sound like eventually something does need to be done since the curve is progressing. Good luck.
    STacey

    Stacey

  4. #4
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Hi Elaine

    My daughter is not special needs but these things were helpful to us. I purchased a shower seat but some people just use a plastic outdoor chair. I would also recommend a hand held shower to wash the hair. My daughter is relatively short (5'4" now) so I didn't get a toilet seat but I think it's useful for taller folks. We also purchased her a memory foam mattress, a topper would do well too.

    As for the blood, her doctor said about 75% of his patients with a long fusion (like my daughter's) require blood but said if she were having a short fusion there would be a good chance she wouldn't need it. You might ask the surgeon what percentage of his patients with exactly the same levels fused receive blood. My daughter only received her autologous unit.

    My daughter had an MRI, it gave me some peace of mind knowing there was nothing out of the ordinary going on.

    Best wishes to you and your daughter.

  5. #5
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Hi Elaine,

    Have you tried doing a search? I don't remember who it was or when, but I do remember someone facing a similar situation. Maybe their posts will be of some help.

    My daughter's doctor routinely does an MRI before surgery.

    If I were in your shoes, I'd be happy the doctors are suggesting a post-op brace. Most kids don't get a brace after surgery, but it might not be a bad idea for Kim. If she'll wear it, it'll save you a lot of worrying!

    Like Sherie's daughter, my daughter too had a long fusion done. Jamie donated 2 units of blood and she needed both of them before leaving the O.R. I think I would use the blood bank in your case. Why put Kim through more than she has too go through?

    Take your time with your decision. Make sure you have the best doctor possible for Kim. Have you checked with the hospital steff to see if there is anyone there who would be able to work with Kim to help her understand what's going on a little better?

    You've told us what a great kid Kim is, but you forgot to mention what a great Mom she has!

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  6. #6
    Join Date
    Sep 2007
    Location
    NJ
    Posts
    131
    Hi Elaine,
    Welcome to the forum! This is a great place for information and lots of support. I don't know what I would have done without it!! It was a lifesaver for me.

    You have to find a doctor who is willing to sit and discuss all of your questions and answer them to your satisfaction. It is imperative to be completely confident in your surgeon. My son's surgeon told me that he would sit and talk with me and my husband for hours if I needed him to. He put our minds at ease and answered all of our questions. I felt completely confident in him when we left his office.

    I would definitely recommend the MRI. As Sherie suggested, the shower chair is a great idea as well. My son is 18 days post op and he is still using it. They tend to be a little weak when they come home, so it's nice to have something that they can sit on.

    Chris also has a memory foam mattress topper and he loves it. Stock up on lots of pillows for when she comes home as well. It helps them to get comfortable in bed as well as sitting in chairs. We also bought Chris a body pillow which he really likes for back support when he is on his side.

    Chris donated a unit of his own blood but never needed it. His surgeon uses cell saver during the surgery which suctions, cleans and filters their blood that they are losing during the surgery and gives it back to them. Chris lost about 800 cc's of blood during the surgery and the surgeon just used the cell saver to replace it. I would imagine that most surgeons use the cell saver system but it doesn't hurt to ask.

    Chris' surgeon used donor bone which has no live cells in it which I was very happy about. No sense in causing more pain than is necessary. Out of curiosity, is the doctor who recommended NOT doing the thoracoplasty the same one who would do the MRI?

    Like many others have said before me, scoliosis is usually not an emergency situation. Take your time, ask lots of questions and be comfortable in your decision. I hope this helps.

    Good luck to you both!
    Lori

    Mom to Christopher, age 17, Mark, 13, Heather, 10 and Michael, 8
    Chris had surgery with Dr. John Flynn at Children's Hospital of Philadelphia on December 12, 2007. He is fused T4 to L4.
    Dr. Flynn is an AMAZING surgeon!

  7. #7
    Join Date
    Nov 2007
    Location
    California
    Posts
    39
    Hi Stacey,

    I've sent you a private message but I did want to add here that Kim's Risser grade has been at 5 for a year now and her curve has progressed from 43 to 54 over 18 months so the doctor feels that the curve will continue to increase. Although this is not an emergency situation, it is my understanding that since she has reached skelatal maturity the bones will begin to harden and even though it will take years, the spine will become less flexible over time. The thing I have noticed the most is that her torso has really shifted off center so I'm concerned about delaying this for another year.

    Thank you for your suggestions!

    Quote Originally Posted by mom2cole
    Hi
    I am curious who the Dr's are you have seen as I too live in Orange Cty, CA. My son is 13 and has seen Dr Skaggs at CHLA for many yrs now. Cole has had 10 surgeries as he was born with severe congenital scoliosis (fusions, halo, rods and final fusion with rods this past summer). B4 we went to CHLA we saw Dr Oppenhiem at UCLA medical center. I also have a friend whose son goes to CHOC for his scoliosis and spina bifida.

    Post op you will need some items for home and most likely you wont get from the Hospital (you can take what they have used on your child while she is there but that would usually be it tho you may also get thru insurance with Hosp/Dr help I think too). Cole's recent fusion he did not have any brace but when he was much younger he did have a cast and a brace after surgeries to hold the fusion and curve until set.

    To me the curve doesnt warrant immediate fusion surgery and was wondering if there is any specific reasons for it - aka is she having any pulmonary issues or is it pushing on her heart or lungs,etc..??? Cole's was well over 100 degrees when he was young and he has had many pulmonary/lung issues because of it. I also wonder if they suggest anything else or if they say you could still wait unless she is done growing then maybe it is good timing as it is best to wait as long as possible b4 fusing. It does sound like eventually something does need to be done since the curve is progressing. Good luck.
    STacey

    Stacey
    ca-native (daughter had surgery)

  8. #8
    Join Date
    Nov 2007
    Location
    California
    Posts
    39
    Hi Lori,

    I need to check out this memory foam topper - it really gets rave reviews!

    To answer your question:

    Quote Originally Posted by LorDon
    Out of curiosity, is the doctor who recommended NOT doing the thoracoplasty the same one who would do the MRI?
    I have been seeing a doctor locally but when I found out Kim needed surgery I got a second surgical opinion from a doctor in San Diego. Actually, both doctors did not recommend a MRI but both agreed to approve one once I pointed out that Kim has other diagnoses and I would rather err on the side of caution.

    I've read this in other threads: it can be frustrating to know which is the best path to take because every doctor I've seen (four now) have a slightly different take on curvature correction. Fortunately, the last two doctors I've seen were very patient and answered questions quite thoroughly - unlike the first two doctors which seemed taken aback by Kimís ďuniquenessĒ.

    Thank you and I hope your son is doing well during his recovery period (in fact I hope all of your family is doing well since it does impact everyone when a loved one goes through something like this).

    Take care,
    ca-native (daughter had surgery)

  9. #9
    Join Date
    Dec 2007
    Location
    near the North Pole City in Alaska
    Posts
    19

    Smile Upcoming surgery for special needs child

    Hi! Elaine, I have worked with special needs children in the past and hopefully can help. one little boy I worked with had Downs- Autistic, when ever he went in the hospital his mother would starght months ahead prepairing him. Allmost everyday she would drive through the parking lot of the hospital at first not saying any thing but just letting him get useto seeing the building.I dont know how close you live near the hospital where the surgery will be done.These great kids live in scheduled world so the more you can incorperate this as part of her day the better it (may) be.Plus you may need to have sedatives ready,it is not a bad thing for these kids it could be the best thing for her. I would love to talk with you more: email: almainaktyj@yahoo.com,if you write me in the subject box make sure you put NSF or I may not open it.(good security for your computer)I will keep in touch with. Alma in Alaska

  10. #10
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi,

    I can understand how hard these decisions are to make. You are doing a great job finding answers and figuring out details. Lots of details to consider.

    Blood transfusions are common in most scoliosis surgeries. If the patient is generally healthy and doesn't have a history of blood or bleeding problems, they usually have one to three units transfused, depending on how well the body "bounces back" after surgery. Braydon has had two transfusions after two different back surgeries. One was direct donor blood (a good friend donated O- blood which is basically universal blood) and the other was after surgery at a hospital out of state. They used banked blood and he did fine.

    Did any of the docs suggest details about surgery? Will they do posterior only? Anterior/posterior? I'd be asking the surgeons (esp the one or two you feel most confident about) if her spine appears quite flexible still, and if they could get a good correction of the rotation, hoping to reduce the rib hump, without doing a thoracoplasty. If they could confidently tell you they could reduce the rib hump without a thoracoplasty, that's a good thing. Thoracoplasties are often quite painful recoveries because they involved cutting the ribs. You can't immobilize ribs because you have to breathe. Breathing is painful. Thoracoplasties have also been associated with reduced lung function in some patients. But, thoracoplasties done well have great outcomes. If your daughter sits often or lays down on her back often, having a rib hump for life could be potentially painful in the long term/chronically. Lots to consider.

    I, too, would ask/push for an MRI. Peace of mind means a lot in this case.

    I also agree that a post-op brace will be almost necessary. If she is unable to understand the implications of the restrictions she needs, having a brace will help her body remain in a more correct position. You want to avoid a failed fusion area at all costs. Having a failed fusion is not a good thing.

    You probably won't need much in the way of assistive devices at home, especially if she's used to routine. The biggest issue I think you'll be facing is good pain management. I would contact the hospital where she'll be having surgery and speak with the Pain Services people. Tell them you are concerned. Tell them about her and ask for a "plan" before surgery happens. You need to know what to expect. One thing many still do not mention is constipation post-op. Make sure they plan for bowel/GI problems before surgery. You don't want her more miserable than necessary.

    Good luck. Hopefully you find a good surgeon who will help you with details. Keep us posted.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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