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Thread: Need to make decision on surgery for 10-year-old child need advice from others

  1. #1
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    Question Need to make decision on surgery for 10-year-old child need advice from others

    Hi, everyone
    I'm new to this forum and I hope that I'll be able to get some help from others. I have a 10-year-old son with severe cerebral palsy who now has a 70 degree thoracic curve which is pushing on his left lung. His curve 6 mths ago was at 40-45 degrees. So it has progressed quite a bit in that time. I've been told by his dr. that a decision about surgery needs to be made. Since his scoliosis will most likely continue to progress. I'm between a rock and a hard place in regards to making a decision. My son has had pulmonary complications following two previous surgeries. He develops atelectasis simillar to a pneumonia. There is no doubt in my mind he would have problems after such a big surgery like this. He also has apnea as well. I'd like to know from other parents whose children have similar medical problems what their experience with spinal fusion surgery was like and any advice they could give me. As well as others who may have a big curvature 100+ degrees that they are living with and how this has affected them.

  2. #2
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    Hi...

    I don't really have any advice for you, but am very sympathetic about your situation. It's hard enough to make the decision about ourselves, but I'd hate to have to make it when there are so many other issues.

    Just out of curiousity, where are you located?

    --Linda

  3. #3
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    Though my son does not have CP, he does have some similar issues to what you are dealing with. He was born with diaphragmatic hernia (most of his abdominal organs in his chest keeping his lungs from growing). As a result he has severe scoliosis. He has had 7 surgeries for it (he is 9 yrs old) including 4 grow rod surgeries from ages 3-5, 2 spinal fusions (ages 5 and 8) and halo traction for 2 months last year.

    Because of his birth defect he has hypoplasitc lungs, and is dependent on O2 and bipap as well as GT and TPN fed for nutrition. He has both kinds of apnea, short bowel syndrome, and a few other issues that complicate most surgeries he needs.

    We too were concerned about his pulmonary status for the surgeries, and when he had his halo traction and most recent fusion we made sure that we did it at a large children's hospital with an excellent pulmonary team. Our orthopod was awesome, really left most of Sean's care up to the pulmo team for management as Sean is a bit beyond the "norm" for scoliosis patients.

    Had we not done the most recent fusion (his upper T area was going forward in a kyphotic direction) We were told that spinal cord damage would have happened and made a severe impact on his life. When he had his first fusion ate age 5, his curve was about 100 degrees, with grow rods holding it open. Had the rods not been there he likely would have had a curve more like 130+. I dont even want to think where we would be today without having done the fusions.

    The thing is, that as you know no two kids are alike. You need to speak with the various physicians involved in his care and if you can, see if you can get them together in a team meeting to discuss the pro's and cons, and maybe also see if there are alternative ways to go about the surgery. Our local orthopod who did the first fusion worked with our pediatric surgeon to come up with a way to do both anterior and posterior without having to totally deflate his one good lung. He was right there with the ortho's when they went in and helped them do what they needed and we are ever so thankful for him. I would also highly reccomend making sure you are seeing a top orthopod for kids with spinal issues. We see Dr Song in Seattle now, and he is wonderful. Took Sean's films and history to several conferences before deciding that halo traction was the best alternative for my little guy.

    Anyway.. dont know if this helped any, feel free to ask any questions. I try to come by here every few days...

    Hugs, Heidi
    Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

  4. #4
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    Smile Thanks for responding

    Thank you for taking the time to share your story about your son. He sounds like he has been through quite a bit and you must be quite proud of him and it sounds like he's got a very good mom! You are very much on top of things. Your suggestion about the doctors meeting and discussing pros and cons is a good idea I hadn't thought of. That is the biggest problem that I've had with my son's doctors is getting them all on the same page. It seems none of them either talk to each other or read each others reports. It makes me quite frustrated. You mentioned your son had two spinal fusions. Why two if I may ask? I guess I'm hoping this is a one time deal for my son. Also you mentioned halo traction. I'm not sure what kind of procedure this is. I'd like to find out more about that. It sounds like your son's doctor is wonderful and the hospital provides excellent care. I'm not sure if I'll be going with the doctor my son currently has this was only his 2nd visit with him. I don't know much about him he was referred to me by my son's orthopaedic dr. who did his hip surgery and he is a wonderful dr. I found out that there are a couple of my son's peers from school who have undergone this procedure and have used the same doctor. So I'll be talking with those families. From what his PT has said he is a good surgeon. My son will be seeing his pulmonologist in a couple of weeks. Did your son have any pulmonary function tests done prior to any of the surgeries? This is something that I want to find out from his dr. I need to know where he stands at right now. I'm assuming this procedure would be done posteriorly but I don't know this for sure yet. I have to schedule another appt. with his spinal dr. to go over everything since I was too upset on the prior appt. to even ask questions. I think if anything was done anteriorly it would put my son at too great of a risk especially if they had to deflate a lung. Some other questions I had for you was how did your son do after these operations did he develop pulmonary complications like pneumonia or atelectasis (fluid filling up in the lungs/lungs collapsing)? How long was he in the hospital? And how was his therapy/rehabilitation? Does he express to you that he has any back pain because of the rods?

  5. #5
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    I am glad to share what I can.

    Sean is a trooper for sure. Back in his NICU days they called the Knight of the NICU, and that has always been true of his life.

    Do you have one doctor that tends to be more involved with your son than the others? I have found that our pediatrician (we changed when Sean was 3) has been an awesome advocate for him. He is really good at getting things done, and getting the attention of the right people. If you have one doc that "gets" your son best then maybe he/she could be the ringleader to get discussions going on. Or perhaps your primary hospital has a case mananger or social worker that could help get the ball rolling?

    Yes, Sean has had 2 fusions. His first was at age 5, from about T2-L2 and was held in place with 3 rods for extra support. The upper part did not take well, and ended up growing forward in a kyphotic direction. Normal in that part of the spine is 45, it got up to about 90 degrees and the docs were very concerned. Prior to his first fusion we had him evaluated in San Antonio by the VEPTR guru (Dr Campbell), but he was denied as his case was very complex and they felt he might not survive the surgery due to excess bleeding and such. That is when we had the fusion done in our home town, Boise.

    A year later we still saw problems with ongoing curvature and so we asked Dr Song (in Seattle) to consider his case. Again he was denied, but Dr Song took his records to some national conferences as he did not want to just give up on Sean. Ultimately it was decided that removing his fusion hardware and scraping away the scar tissue, then placing him in Halo traction would give him the best chance of some additional straightening in the upper T area. To do this they screwed a titanium halo onto his head. (I will try to attach a photo to this message, hopefully it will work!). From that they placed him in nighttime traction with about 8 pounds of weight hanging from the halo and 25 pounds during the day. Over the course of 2 months, and with the subsequent 2nd fusion surgery the 90 degree curve is now 60 and as of our last appt in November is holding nicely.

    Normally a fusion is a one time procedure, but realize that Sean was only 5 and had what they called a severe malignant curve. There is always the chance of the fusion not taking completely, of infection, and various other problems. You know how surgery is, lots of potential problems, though thankfully few people really have them. We have 3 hospitals that provide Sean's care, our primary is in Boise, and believe it or not I prefer it to just about any other hospital we have been to. The other one that has provided other care is Seattle Childrens, where Dr Song is from and they are also quite good. He has also been seen at Denver Children's, but that was for a different problem, Pulmonary Hypertension.

    May I ask your docs name? Is he a member of the Scoliosis Research Society? An awesome group of docs, and if you are looking for a 2nd opinion (which I would reccomend) I would suggest checking to see if there are some in your area that specialize in your son's age range.

    Absolutely he had pulmonary function tests prior to his fusions. He has had a VQ study, various CT's, MRI's. etc. Thankfully he did pretty ok with them, one of the problems with his birth defect and the hypoplastic lung is that it is harder to get them off the vent once they are on it too long, so our goal is normally to get him off within 2 days if we at all possibly can. Now that he is on Bipap (3 1/2 yrs now) we can just switch him to his own home machine for breathing support once we take him off the vent which helps to get him off a little sooner I think. He did develope Pleural Effusions after two of his spinal surgeries, the first fusion and the one where they removed his old hardware and placed the halo. He needed a chest tube for a week the first time, the 2nd time it resolved on its own (although we did use the VEST for percussion therapy, and we now use it at home a couple of times a day). It is an awesome machine if you havnt used it for your son.. I dont know whether it would help him or not, but we used it after his first fusion and teh docs felt it really helped to keep him from having more trouble with his lungs.

    First fusion he was in... 8-9 days? Halo traction he was in the hospital for almost the entire 2 months, with a couple of weeks in a hotel with me being his primary caregiver/traction expert. 2nd fusion, one week. As far as therapy goes, I generally do most of his care anyway so I worked with him on excercises that the PT/OT gave me, and once we got home to Idaho he had 2x a week PT for a couple of months to build up strength. Other than tiring easily due to his various issues, he really does pretty well. He IS on long term pain control, but that started clear back during the grow rod phase of this trip we are taking. He takes methadone and neurontin, as well as PRN tylenol with codeine, since he was... 4 yrs old. The quality of life he has as a result of the pain meds is far better than it would be without.. I know some people dont like the idea of pain meds, but frankly, for chronic long term pain, they are definitely worth it.

    I hope this helps some.. I know it is a bit overwhelming but its good to find out as much as you can so you can be prepared to ask whatever questions are relevant to your families situation. Feel free to ask again if there is anything I can help with.

    Hugs, Heidi
    Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

  6. #6
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    Hi,

    I just wanted to welcome you to the list. My son is also 10 and has had multiple back surgeries. His medical issues are very different than your son, however, many of the same processes are similar. Heidi is wonderful! (Hi Heidi!) She has had to make many choices for her son to give him the best quality of life possible. She has done a great job. I agree that having a main doc who "gets" your son and is willing to help you advocate for him is a great comfort and a great step in the right direction.

    Braydon does not have any physical restrictions. He was born with several malformations in his spine that caused scoliosis. His congenital curve at birth was 45 degrees. By age 9 months it increased to 75 degrees. At age 11 months he had anterior/posterior fusion surgery (fused from T5-L1). This stopped the progression of the curve. At age 5 he had developed a lower compensating curve and also began showing signs of lung function compromise. A PFT showed that his lung function was 46%. At age 6 he had VEPTR implant surgery. His lung function improved to 75% as of Sept. 2004. He actually has an appointment with the pulminologist next Friday because he's been having episodes of shortness of breath and feeling like "there isn't enough air around me". He also has been having bad headaches which is unusual for him. So, we're going to try and figure this out.

    I also agree that getting another opinion from another ortho is important. Braydon's ortho has operated on many CP kids. I would want someone who has experience treating someone similar to your son. Someone who will support you - the parent - for the journey.

    Best wishes and 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/

  7. #7
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    Hi Back Carmell!

    We have a mutual admiration society, as Carmell has also done an amazing job at making sure Braydon has the best quality and consistency of care. Important when taking care of these special kids of ours.

    One other thing that Carmell often mentions, scoliosis is rarely an emergency, so do take time to get other opinions. 2nd or even 3rd opinions are important to make sure that your child is getting the best of care, and the RIGHT treatment plan for his issues.

    Hugs, Heidi
    Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

  8. #8
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    Hi, cdhheidi
    I don't know what happened I had a whole message typed out and then I lost it somehow. Frustrating! Anyways, sorry I took so long to reply back. I've been busy with work and we celebrated my son's 10th birthday this past Sunday. I wish I could say my son has one doctor that could get the job done (ring leader). Dr. Schwab (his orthopaedic doc) has talked with Dr. Channing Tassone (spinal doc) about Hunter and is his medical problems and they were both there to talk to me at the dr. appt's. Dr. Schwab is very concerned about Hunter's pulmonary problems and was hesitant about even doing Hunter's other bad hip since this was an elective surgery and he thought we should just wait and see how things go. I was trying to see if he could have his other hip surgery this summer before this came up. Now this takes priority. The problem is, is that I would think it would be hard for me to get. Dr. Schwab to talk to his pulmonologist and neurosurgeon since he won't be the doc doing the surgery. So I will have to make sure that Dr. Tassone if I choose him will be in contact with the other doc's and I will be talking to them as well and make sure there is a plan of care in place and that everyone is on the same page. My son has a baclofen pump and this may further complicate things since the neurosugeon will have to reposition his catheter in his spine once the spinal fusion is done.

    As for a second opinion, should this be obtained from another dr. from another facility? I live in Milwaukee, WI there is a children's hospital in Madison, WI about 90 min. away. Although I don't know of anybody who has had anything done out there. I'm somewhat hesitant about going to another facility because I would have to find new docs to cover all of my son's needs and the distance from home as well.

    Another question I had is what is a VQ study? I'm not familiar with all of the medical terminology. My son uses the VEST as well when he is sick and I have found that it seems to work pretty well. Did they use this on your son post op? I would think that would be too much vibration for them.

    I will have to check to see if my son's dr. is a member of the scoliosis research society as well as look for other dr's. in my area who are members for a second or third opinion. I know you mentioned that scoliosis is not an emergency. I guess I feel pressure because of how fast it has progressed I feel like my son has only a small window of opportunity before his condition gets worse and will put him at too great of a risk for surgery. Perhaps, I feel this way because I'm not fully informed and I feel very scared about things.

    I seen the picture of your son and he is such a cutie! I hope things continue to go well for him and you and the rest of your family as well. Keep in touch!

  9. #9
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    Wink Thank you for responding

    Hi, Carmell
    Thanks for sharing your story about your son as well! I didn't realize there were different forms of scoliosis until I came to this site. Your story took me by surprise. I couldn't believe the progression your son had just in the first year. It is hard to understand how something like that can happen. It must have been scary for you since your little guy was just a baby. I wanted to ask what VEPTR implant surgery is since I think cdhheidi had mentioned this as well? Did your son have any pulmonary complications after any of these surgeries?

  10. #10
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    I had fusion for adolescent scoliosis, but just thought I would touch in here, I hope you dont mind. I had complications from my fusion because my doctor did a thorocoplasty (they cut the ribs down to decrease the rib hump). Part of my right lung collapsed, I got a pleural effusion, and pneumonia. I think the most important thing to remember about all this is that while he has pulmonary problems now, the longer you wait, the more problems he will have from progression. The spine can actually restrict the space of the lungs and put added pressure on the heart. Get it done while his lungs are in the state they are now, rather than wait until his lungs are worse and his spine is worse. Once it progresses farther it will be harder to get a good correction.
    I attended a workshop the other day at my surgeons office and he said that it is necessary with neuromuscular patients to get their spine taken care of as soon as possible to prevent further illness due to the condition.
    My best friend from middle school had CP with scoliosis and was fused from T2-Sacrum. She is doing so well now. Her parents have never regreted one day of it.
    Good luck in your decision. Maybe you could see if you are near a shriners hospital. They do all medical treatment free of charge.
    Mandy

  11. #11
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    Happy Birthday to your son!

    For kicks I looked up your area at the SRS website, and the only doc that came up is Stephen P. Delahunt, MD. I would suggest maybe he would be someone you could have that 2nd opinion from? Or if Chicago isnt too far there are many docs down there as well, including a shriners hospital (as someone else mentioned they have no charge for the care of your child). I have a friend who works at Milwaukee childrens hospital as well as has a child with serious health issues. It seems like quite a good hospital, and it is one of the few in the country that I would certainly consider for Sean should we ever have to move from our area.

    I do understand all too well about having a child with many doctors to try to get coordinated care at a different hospital other than home. When Sean had his halo procedure done, it was one of my biggest concerns. Thankfully Dr Song pulled in the head of the various departments that we needed and we had consult with them all prior to the halo. Doesnt mean you wont run into trouble, but I felt he really tried to be on top of Sean's particular needs before they began.

    A VQ study is a test where they have the child breath "canned air" that has radioactive isotopes attached to the air, and they also inject a dye into the blood. The test is able to see where the oxygen goes in his lungs, and where the blood actually picks up the oxygen in the lungs. It helps them to show how well the lungs are working and if there are areas of concern where they are not. In Sean's case it showed that of his total breathing capacity, 87% was in his right lung and only 13% was in his left lung. Concerning, but not unexpected. Clearly he is very dependent on his right lung and they did not want to risk damaging it with the fusion. That is why it was such a blessing when our peds surgeon was able to come up with a way to do the anterior part of the fusion without deflating the lung.

    Yes, I mentioned that scoliosis is not an emergency. It doesnt mean that you shouldnt be working on resolving the issues and figuring out what to do. It means that it isnt something you have to decide this month. Sometimes it takes a few or even several months to work out the details. You should have a little time though to get that 2nd or even 3rd opinion. My guess is that his lungs will never get better than they are now? At least I know that is Sean's situation, and given your son's age I would imagine the same goes for him.

    Yes, we used the VEST post op. We waited a couple of days, and then started in slowly and at the lowest settings. Yes, he was uncomfortable, but we timed it with his pain meds so that they were peaked at the time of the treatments and he really did pretty well. I tend to think that is one of the reasons his lungs didnt have too many problems with the procedures.

    Keep on asking questions if you have more, I am glad to be able to share what I can.

    Heidi
    Heidi (mom to 3 boys, Sean is 9 and has LCDH, SBS, is TPN, O2, and Bipap dependent, has SVC stenosis/stent x4, severe malignant scoliosis fused twice from T1-L2, halo traction for 2 months, severe restrictive lung disease, a CVL and GT, Fundo x2, and is one of my heroes.)

  12. #12
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    Hi, cdhheidi!
    I looked up Dr. Delahunt and I think he is an adult scoliosis dr. since he is associated with Aurora Healthcare and has a clinic at St. Luke's Hospital. I will call his office to see just to make sure. I looked on the UW Madison website and found Dr. David C. Mann in his bio it says he is a fellow of the scoliosis reseach society. There is also another doc out there Dr. Kenneth Noonan and his bio seems to show that he does strictly spinal surgery. I will most likely get an opinion out there. I'm not sure yet if I want to go down to Chicago since it is some distance from home. But I will keep it in mind as another option.

    As for the Children's Hospital here in Milwaukee I have mixed feeling about it. I have had a lot of bad experiences with my son in this hospital usually as an inpatient is when problems arise because the residents don't know your child I usually have to fight like tooth and nail with them to see to it that my son gets the proper care and if he is not in the ICU and on a surgery floor the nursing is not as good probably because of the patient:nurse ratio. The two recent surgeries did not have a plan of care in place for the pulmonary complications. He was sent to the surgery floor after each of these surgeries and should have been sent to ICU. I can understand on the first recent surgery the baclofen pump because this was the first surgery since he was a baby so I didn't know how he would do after the surgery. But the second surgery involving the hip was a much bigger surgery and I thought he was going to the ICU after surgery but ended up on a surgery floor instead and things just went downhill from there. His ortho surgeon was on vacation after that surgery and so I had to fight with the pulmo. dr. who was attending and the residents to get him back down to the ICU because he was deteriorating fast and the pulmo dr. was so arrogant and did not listen to me at all until things were a lot worse. That surgery in particular and its aftermath has left me very apprehensive. Now knowing that this operation is an even bigger surgery I'm very scared to say the least. I need to make sure this time if it is done at this hospital that no stone goes unturned. Sometimes just getting him into the clinic for an appt. can be a 3-4 month wait in itself. It is hard if you're in a situation where your child needs to be seen soon like what is going on now. The soonest I could get him squeezed in to see his pulmo dr. is Feb 21. I was hoping for something a little bit sooner but it is better than waiting til March 15 this was the appt. he had initially. Of course, my son hasn't been to any other hospitals for care so I have nothing to compare it to. I'm not sure if what I'm experiencing is normal for someone who has a medically complex child not everything goes smoothy, unfortunately.

    This VQ study is something that I am going to inquire about with his pulmo dr. It sounds like a good test and would tell me what I need to know.

    I thought of a couple of other questions to ask you. Did your son need a blood transfusion after the fusion surgeries? I read that blood loss is likely. I know my son needed one for his hip surgery. Also did your son have to wear a brace after the surgery or when he came home from the hospital?

    Once again I want to thank you for keeping in contact with me and answering all of my questions. I know this takes some of your time as well and I truly appreciate what you're doing for me. You've been a great help to me so far. I have off over the next couple of days and I will be doing some more homework hopefully I will be able to get in contact with a couple of families near me. I'll keep you updated on what I find out.

  13. #13
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    I just wanted to ditto that respiratory therapy (RT) immediately after spine surgery is very necessary. Braydon began RT within hours after his VEPTR implant surgery. They had to deflate his right (weaker) lung. The RT helped keep him from developing pneumothorax and pneumonia. If your son has fusion surgery, I would strongly encourage you to ask if RT could be ordered, usually every 4 hours until they are breathing well on their own. They have a percussion machine that vibrates the tissues. Braydon had a huge thoracotomy incision. The percussion did not hurt more than anything else. It was almost soothing, actually. Please look into that for post-op care. You'd hate for him to have more problems than necessary.

    I've heard of Dr. Noonan. He is a pediatric ortho. I don't have first-hand experience with him, however. Maybe you could interview a few before actually going for a consultation. Good luck finding the right surgeon with the right plan for him.

    The VEPTR surgery is a vertical adjustable device. Once its placed, you have to expand it every 6-12 months to keep up with the child's growth. If your son has problems with surgery to begin with, I'm not sure I'd want him to be submitted to repeated surgeries until he reaches full skeletal maturity. It does buy time before fusion is required. That's the great part for these kids who have such weak and collapsing spines. They have support to give their bodies a chance to grow and avoid the serious lung issues that many have when they have such a compromised chest space.

    Like I mentioned above, Braydon did not have pulminary complications after surgery. I believe 100% that this was because of the RT post-op. His lung function now is better than its ever been.

    When he does have surgery, make sure you know the plan for post-op care, including going to PICU! Yikes, that's frightening that they didn't send him to PICU after a big hip surgery and his history. Keep up the fight! You are doing great. I'm looking forward to hearing updates.
    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/

  14. #14
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    Hi, Carmell
    I went to look up more info. on the VEPTR implant and found an article about the VEPTR implant surgery performed by Dr. Noonan I guess it was the first one performed at that hospital. I'm not sure if this is something that would be considered for my son since his scoliosis is not congenital. I will bring this up with the doctors though. I did have a question about the implant though you mentioned it needs to be adjusted every 6-12 months I believe this was mentioned in the article as well. Is it adjusted surgically? I was unsure about this.

    I hope for my son this is a one time surgery. I know that there is a possiblity that the spine may not fuse and there could be problems with hardware. I just hope he doesn't end up with a curvature above or below where they decide to fuse. I don't know the specifics of what the surgeon is going to do yet we haven't gone over any of that. So in that respect I'm still in the dark. On the last appt. I was not expecting for them to tell me that his scoliosis progressed that much. I thought my son had a couple of years yet before I had to think about this. So when I found out I was too upset to go into it any further that day. His doctor wants me to get a pulmo. consult first and then come back and talk about things. Once I find out what this doctor plans on doing I will get a second and possibly a third opinion as well as meet with his neurosurgeon about the baclofen pump and what will have to be done in regards with that.

    Once again, thanks for taking an interest in my son's situation and offering your advice. I hope to keep in touch with you as well!

  15. #15
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    Hi blackwidow
    I just wanted to wish you well though I don't really have any advice to offer. My daughter also has CP though your son's problems sound more profound than hers and had surgery in August. Although we've had some problems (detailed elsewhere on here but don't look if you're feeling wobbly!), her shape is so much better thaT i have no doubt we were right to go ahead. We were told that, while idiopathic curves will sometimes stop progressing, especially once people have stopped growing, neuromuscular ones, likke our kids, don't. They just keep going - so I can at least confirm that much that your doctor has told you.
    Prayers and hugs
    Lorrie

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