spine surgery or no spine surgry?

Jennifer - posted on 01/06/2013

Thank you for sharing. This is a heartbreaking decision. Abby is actually my step daughter. She will be 11 next month. My husband and I have raised her since she was 5. Her mother has not been a part of her life the last so many years so to me she is my child. My husband lost a child at 2 years old to an accidental drowning. So this makes it even harder with Abby. She doesn't crawl. She lays on the floor and plays with her light up toys using her face. She lays her face on the toys and keeps activating her toys. She can scoot some but only to a short distance to get to her toys. She eats by way of a sippy cup that you hold and allow her to drink. pediasure only. she doesn't talk. only laughs, giggles, and hollers when she is excited. her ankles are contracted. She is wheelchair bound. I'm a nurse and I know how difficult a back surgery is on people much less someone like Abby. My fear is that she will have multiple post op complications mainly respiratory, pneumonia, ventilator etc. I don't want to give up on her but I dn't think the surgery will change the end result. Her pediatrician said to do the surgery. He said if we dn't she will become bent and drawn up and basically if the results turn out bad at least we did it with good intentions. a orthopedic surgeon said no surgery a neurologist said no to surgery, but one ortho doctor at a teaching university is ready to do it now. That gave my husband hope that he wants so bad, but then does that make me a pessimist. I told my husband that I will pul back and let him make that decision, but he wants my input. I want what's best for her but I'm thinking that things we do to her need to be geared towards making her comfortable and happy and content. the neurologist said either way we will ahve regrets. she has had MRSA in the past. She has had pneumonia twice in 2012. I just dn't know. thank you....jennifer

Kerri - posted on 01/05/2013

Every situation is difficult for each of our loved ones for we only want the best for them. For me it was a mistake. And the reason I say this is..... Dillon learned to sit at 3 years of age, and army crawled at 5 years of age, and at 7 he could crawl on all fours. He was 16 and crawling all over loving life! He could explore, and I, for example kept a sippy cup on the floor, and when he was thirsty he simply would crawl and take a drink. Since the surgery, he is unable to sit on his own (not even on the floor), crawl, he is getting worse and hardly rolls over anymore. I'm not saying this to discourage anyone. But for me since he was a mobile and once they put those rods in his back, his back is like a board. My take on it - is this....Dillon had a way where he would roll his back and sit on the floor for hours playing with his toys crawling etc. Due to his mental capacity, he has been unable to learn how to do this again. I had him in therapy for two years, and accomplished nothing. Well, the only thing he accomplished was I learned tools from his therapist to keep him from getting tight. Now even though I stretch him everyday, he's so tight and his legs are drawing up and his arms are getting tight. He doesn't crawl and use them anymore. You know the saying is if you don't use it.. you lose it. That is what's happening now. If anyone has a child that is mobile and is 75% curved, it's just something you may want to consider. If your child is mentally able to learn and sat up and crawled at a normal age then they should be able to sit again.. Most do...but if you child is profound mentally and it took him years to accomplish sitting and crawling just know if you do this surgery and he is mobile he may not be after the surgery.. We were not at a point where it was causing problems with his organs, eventually it would have come,but I just wish I would have asked more questions. The doctor only says "the surgery shouldn't kept that little guy from crawling" well guess what, it did. An orthopedic has no idea of their mental capabilities so he saw a curved spine and thought the surgery would in his best interest. So in short, for me is quality of life has gone down the tubes, and I expect his life will be cut short because he is not using those muscles anymore and he looks so skinny. Again, every situation is different, but for me it was a horrible idea. God bless you all and your decisions.

Kerri

Jennifer - posted on 01/05/2013

what did you decide with your daughter's surgery? I have a 10 year old daughter with CP/Downs..wheelchair bound, non verbal, immobile...functions like an infant...her scoliosis is at a 60 degree curve. One surgeon, who is really respected, told us not to do surgery...that her life expectancy was around 20 and it was quanity vs quality. basically keep her comfortable with seating etc. her neurologist said the same thing. another orthopedist at Vanderbilt wants to surgery yesterday...her wants to either put her through bracing where she goes in every 3 months under anethesia or put growing rods in her back and take her in every 6 months and add connectors for growth. this is until she is old enough to the big spinal fusion from neck all the way down. An anethesiologist I work with who put her to sleep a couple years ago for her adenoid surgery said not to do it...her airway was scary and he is afraid she will be hard to wean off a vent and end up with pneumonia, a trach, etc...Its hard because we don't know what to do...She is like a baby and I don't want her to hurt...

Jennifer

Kim - posted on 06/19/2012

Hi my daughter has just been told by two hospitals that she cant have surgery on her spine She has complex health and disabilities like your daughter and my daughter is the same age .they wont do it due to the fact she has developed respiritory problems while waiting for the surgery .she has a goo quality of life at the moment but because her organs r slowly getting squashed due to her spine she i eventually goin on oxygenand oly one of her lungs is working .i would be intrested to know if they have recommended anything else for your daughter x

Kim - posted on 04/24/2012

Hi i have just been told by 2 hospitals that they cant do my daughters spinal surgery because of her chest and her breathing problems .so i now have to watch her slowly deteriate because her organs are slowly getting crushed.Olivia is 13yrs old with no diagnosis and is very complex with epilepsy,osterperosis,partially sighted reflux stomache ulclers has had gastro in twice has been failure to thrive and has had operations for her hips, I am angry as the hos[itals where asked to do this op 3yrs ago and now through them hummin and harring they say its too late and too dangerous to do it,The surgeon said she should have been done a few years earlier and that if i know other children with special needs to tell them to get the spinal surgery early.I am so angry and very annoyed as i have done all the fighting and pushing for things and i have no energy left.

Kim - posted on 09/11/2011

HI BOBBI IM IN THE SAME SITUATION,MY DAUGHTER IS 12YRS OLD AND NEEDS SURGERY ON HER SPINE TO STRAIGHTEN HER AND SHE CANT TELL ME WEATHER SHE WANTS IT OR NOT.ONE HOSPITALN WANTED TO DO IT THEN CHANGED THEIR MINDS AFTER ME AND MY HUSBAND AGONISED OVER TO LET HER HAVE IT THEN THEY SAID THEY DIDNT WANT TO DO IT BECAUSE OF HER SATS SO THEY REFFERED HER TO ANOTHER HOSPITAL AND THEY SAID SHE NEEDS IT DOING DUE TO HER ORGANS GETTING PUSHED AND ALL THE OTHER COMPLICATIONS THAT COME WITH IT. SO MY DILEMA IS DO I LET HER HAVE THE OP AND TAKE THE RISK OF HER ENDING UP ON VENTALATOR OR DIE OR DO I SLOWLY WATCH HER DETERIOATE AND THEN IT WOULD BE TO LATE TO LET HER HAVE THE OP. WHAT A SITUATION TO BE IN.

Kerri - posted on 07/03/2011

HI Bobbi, My name is Kerri....I have a 17 year old son who is undiagnosed. He is non-verbal, unable to walk, and has very many autistic characteristics. He sat up at he age of 3 and could crawl army style at 5 and up on all fours crawling and is othewise very Healthy. Although Dillon is unable to communitcate at all, he speaks to me with his eyes. He smiles and laughs and when he is upset he will cry and moan, and get this terrified look in his eyes. Last November I took him to his orthopedic doctor and he said his spine was 75% curved and he would need a spinal fusion (two rods in his back) . We were told if we chose not to do the surgery it would interfere with his organs etc. So I did what I thought was the best thing. We went to one of the Top surgerons in New Orleans Childrens Hospital. The surgery for us has been difficult to say the least. To start he did very well, because he is healthy. (and he has a high pain tolerance) Well, his eyes told me he was in severe pain. Then after several weeks I noticed you could feel a screw almost protruding thought his back. We took him back to New Orleans and he said he is skinny an sometimes this happens. He suggested we put a thick padding over it and hoped it would heal. In short, it didn't and he had to go back and have the screw removed. Since the surgery in November he is unable to craw and sit up. I have him in physical therapy and am praying for the best. But I don't see any changes as of yet. I am told that the surgery shouldn't keep him from sitting and crawling, but I think it did. This is just my opinion....It took Dillon many years to crawl, and sit on his own. he had a certain way that he would arch his back to do these things. Now his back is like a board, and he may not have the mental capacity to re-learn how to do this ever again. So if I had to do this again, would I do it? Well, I wouldn't won't him to suffer, but now his quality of life is lying on the floor on a palet and we are getting a hospital bed. He seems frustrated and he looks at me sometimes like "why did you do this to me?" I feel at time so guilty, and wish I would have left him alone and not had the surgery. But I honestly don't know what I would do if I was given the choice again. It is a very difficult surgery and painful. So do all the research you can, and follow your heart. I wished I would have asked more questions. But I can't go back now. Just ask, and get a 2nd opinion. I will be praying for you and your daughter, Jade that God will give you the wisdom to make the best decision for her. Blessing

Kerri

Tania - posted on 07/02/2011

Hi Bobbi, just thinking of you and your daughter, We have just been to see the orthopedics about Hayley's spin, They said that it is really bad for her age (4), and with all her problems she would most likely not make it through surgery, They dont normally operate till they are around 12yrs old. He believe's the scoliosis surgeons will run in the other direction, but he will show them her xray's and talk to them. I was a bit gutted and cried but we knew that they would properly say this but just hearing it is different, and if they said yes they could operate i still hadn't decided what to do. So i guess that decision it out of my hands, it will be hard to watch my wee girl slowly get worse with her breathing etc, but i will just make sure she is comfy and not suffering.
Have you made any decisions for your angle??

France - posted on 03/18/2011

Looks like you find some of your answers. I would not want either that my child would be a gunny pig. Great moms and dads out there! All my support to you.

Bobbi - posted on 03/16/2011

wow Tina Thanks for sharing your story. What your son has been threw is exactly why I dont want to do this surgery. With her having lung disease I know she will struggle to able to bounce back from being intabated for how ever many hrs let alone all the infections her poor lil body would have to fight. so I feel my time with her would be shortened and instead of sighning consent forms,I would be sighning her death certificate. and thats what I couldnt live with if I loose her because I allowed them to cut on her. I wish you the best and many more yrs with your child :)

Bobbi - posted on 03/16/2011

Thanks France I think with every surgey it depends on the childs needs for it and being able to weight out the pros and cons. If they told me this surgey would make her walk and be more independent i wouldnt be so hesitant but thats not the case this time. I have to put my selfishness of wanting her with me and say enough is enough. I will not let them use her as a ginny pig and I have to deal with what they leave me with after surgery. Its the worst thing ever to feel this way. I am glad to hear there is successs= stories out there but I just dont think mine would be one of them :( may you see many blessings

Bobbi - posted on 03/16/2011

Thanks Mistie Zinn. I feel your pain as well,I pray things have a happy ending for your daughter. I watched my gma struggle with breathing until the end and it so sucks for it to be ur child and not be able to kiss it and make it better when they look at you waiting for you to make it ok and you cant. God bless ya girl!

Bobbi - posted on 03/16/2011

Thanks Sonya Knipfel but I suggested botox as well because we had done that for her legs and I was told it would affect her breathing muscles and could cause her troubles. but I will try looking into this dr you have listed :)

Bobbi - posted on 03/16/2011

Thanks Amy Lea but I tried to ask them for splinting when she was little and I was ignored and when I ask now then say it is to late for her now. I am very saddend by this because it only makes me think they would rether do surgery because it is easier.

Tina - posted on 03/14/2011

Bobbi,
My son,now 18,has Traumatic Brain Injury and had multiple strokes,is a hemiplegic,gtube...is verbal though.About 4 years ago,had to have the surg due to the severe scoliosis,affecting the other vital organs.He also has a vp shunt.I had to make the same choice that you are in again.
And had the same concerns and feelings.
After his surjury,he got much worse very fast.He got MRSA,was septic,all over the hardware( 2 rods from kneck to tailbone and aprx 100 screws) and MRSA was in the wound.So,it was everywhere,and went into renal failure, congestive heart failure,.and much more.It has been a long hard,painful fight for both of us.I hate to see my son suffer so much.:*( It is hard to make that choice,at least it has been for me.I always ask myself,am I giving up on him? I have witnessed other miracles,what if I dont fight for him and I shoulda? It has been a painful road.
Follow your heart,and ask for God's strength and courage.
My heart goes out to you and your family.
God Bless,Tina

Tania - posted on 03/12/2011

Hi Bobbi, I have a 3yr Daughter turning 4 at end of April, that has Marden Walker Syndrome & Pierre Robin Sequence, she also has severe scoliosis & Kyphosis, Hayley also has respitory issues, Trache, Gbutton, and is on oxygen 24/7, she also sufferies from epilepsy,acid reflux. Hayley had a heart attack when she was two years old and we were told she wasnt going to make it, Two years on and she still here, We have decided to get a Nissen fundoplication surgery done on her as she has alot of chest infections and gets really really sick, i find it really tuff when she is sick. We have been told she might not make it through surgery, due to the curve in her spin and eveything being pushed to one side. And as the same as you she cannot tell us how she is feeling.
We talked about it and decided that if it works it works and its going to be up to Hayley, Hayley has decided everything so far, when her doctors say this is it, she pulls through. This will make her life easier, maynot be longer but easier. Then the next op will be her spin. We will deal with that when the time comes. Please Please also think of yourself, and what will be least suffering for you all. You will make the right decsion for your daughter as you have for the last 12ys, and thats an awesome mum.. Take care & all the best :)

France - posted on 03/10/2011

I really feel for you and your daughter. What a hard choice to make. I have a child with c.p. and she is wearing a torso splints. It is helping a lot to keep her back straight until she is ready for surgery. The doctor is waiting that she is full grown before doing anything. Although it is highly recommended for her I have a lot of questions before to go ahead. From people who witnessed children having this surgery they told me that they were recuperating faster than when they are going for the lengthening of the legs! But to ask what could be the consequences if the surgery was not successful. For example, if infection was setting. My daughter had the surgery for her legs last year and she did suffer a lot. I do not know if I will have the strength to look at my daughter suffering for a second surgery. Time will tell. If she was at high risk of dieing if she did not have the surgery I would go for it probably but my daughter can talk and let me know how she feels. Yes, it is not fair to ask us to make such decisions. We all wish we knew in advance what is the best. I hope you will find the right answer for your daughter and your family. God bless you! you are in my prayers.

Rita - posted on 03/09/2011

Hello Bobbi, I have been in your shoes and it is so incredibly hard. Parents should never have to make such decisions for our children but we do. My heart goes out to you. My daughter had severe scoliosis and had a spinal fusion done (over 3/4 of her spine) when she was 9 years old, she is relatively healthy but suffers a great deal from chronic pain post surgery. She is 19 yrs. old now and still has severe chronic pain and other secondary issues due to the spinal surgery. I just recently lost my 4yr. old and had to make those same heartwrenching decisions. I would recommend not doing the surgery. Quality of life is indeed better than quantity.My daughter was healthy when she had her spinal surgery and did not have multiple risk factors as my 4 yr.old son did. He had Chronic lung disease and other multiple health issues, he died from respiratory failure. You make your decision out of Love for your daughter, trust your instincts, whatever you decide will not be wrong.....you know your beautiful daughter better than anyone. Many prayers for strength and wisdom. Blessings, Rita (Angel Joshua's Mommy)

Miranda - posted on 03/08/2011

My son was 13 when he had the spinal fusion surgery. I too was told his organs would start to shut down if he didn't receive this operation. He had respitory problems. He drooled. And he sat in what looks to me as a very uncomfortable position. He is

Mistie - posted on 03/08/2011

Hi Bobbi!
Oh my heart aches for you and your daughter. I have an 8 year old daughter who has been diagnosed with Pierre Robin Sequence. She, too, has scolliosis and we were just told a month ago that she needs to have surgery for her back due to the curve,rotation and lack of flexibility left in her spine. Tiffanie has respitory issues and has a tough time breathing. I can't imagine what you are going through but then I think I get it a little bit. We haven't decided yet as to what we're going to do for our daughter. I just keep doing research, asking other parents for input, and I pray alot for wisdom. I wish I could help you and especially help your daughter. I'll bet she's a beautiful girl : ) We go to Seattle Children's and Tiffanie's doctor is Dr. Kit Song if that would help you any.
I will keep my ears open and ask around. In the meantime I will continue to pray for you and your family as you face these tough decisions.
Mistie Zinn

Sonya - posted on 03/08/2011

Bobbi, I suggest you contact Dr. Nuzzo. http://www.pediatric-orthopedics.com/The...
Here is a link to some of the work that he does. He uses Botox to paralyze the muscles in part of the back, so the others have a chance to catch up, in terms of size/strength. http://www.pediatric-orthopedics.com/Tre...
My son is in a similar situation, although he doesn't have epilepsy and didn't have a stroke.
We did have reflux but had a fundoplication to fix that.
Otherwise, he is the same age and has the same issues.
We recently went through 6 months where his right lung was totally collapsed and they couldn't get it to re-inflate. His curve is compressing his right lung...
I am in Canada, so it's been difficult to get in touch with Dr. Nuzzo to have this procedure done on Matthew, however I am working on getting a local physician to try this treatment for him.
I know how you feel about quality versus quantity. We had to make that decision with Matthew recently, and we choose quality every time.
And so, they sent Matthew home and... his lung started to re-inflate. Nobody knows why. It shouldn't have, but it did. I know it's from all the prayers that we had for him.
I say you trust your gut, and ask for wisdom.

Iridescent - posted on 03/04/2011

I'd go ahead and request the torso splints (whatever they are called, intended for severe scoliosis), and not do the surgery. It will help prolong her quality portion of life, reduce her pain, slow the changes, without adding to her problems or losing her in surgery. That's my opinion, so please only take it as such; this is your daughter.