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

  1. #31
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    Jan 2006
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    Hi, Heidi
    Thanks for clarification about these studies. The pulmo nurse called me back and she will get back to me about what the doc says about this study. I'm hoping it is an option. If not, I will question him the next time my son sees him in May and bring it up with the spinal dr. as well. From what you are telling me it would give some good info. to the docs as well as myself. I'm hoping what the spinal dr. had in mind was posterior surgery but I don't know yet I'm hoping they don't mention anterior. I'm already scared as it is for him but anterior is definitely more involved with having to deflate a lung. Although you mentioned in your son's case they were able to do part of an anterior fusion without deflating. Which is good! I guess only time will tell once I have all of the information.

  2. #32
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    Jun 2004
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    There are actually good reasons to do an anterior fusion as well as posterior if it is physically feasible for your son. By doing posterior only, there is a possibility of something known as crankshaft phenomenon, and with a younger child with many years of growing it is something you would wish to avoid if possible. Basically waht happens with posterior only is that the back part of the spine is fused, growth plates killed so no longer grow. The front part of the spine is not fused, the growth plates can continue to grow thus changing the shape of the spine in an awkward direction which can cause further difficulties. In Sean's case they fused the back from about T1-L2, and the front they went from about T4-T8ish by using a part of one of his ribs. Though part of the fusion did not take, (which is one reason he had to go back in for a 2nd fusion and halo traction) the anterior portion of the fusion DID take which I have no doubt helped him from having even further problems than he did.

    Crankshaft does not always happen, and if it does it does not always cause problems. Each patient/child is so different, it is important to take each individual instance and do what that person needs. We felt in Sean's case that the rapid rate of growth in his curve indicated that he was probably more likely than some to have difficulties with crankshaft which is why we felt it so important to try to do the anterior as well as posterior.

    Make sense?

    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.)

  3. #33
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    Yeah, I've wondered about the crankshaft phenomenon. The reason why I wonder is because my son has extremely high tone, very rigid muscles. I know it must come into play with his scoliosis. In order to decrease the muscle tone my son had a baclofen pump put it in to decrease the muscle tone. It has only worked somewhat. I'm still wondering what made my son's scoliosis progress so fast I reckon it was inevitable but I figured we would be dealing with this decision when he was a teenager not at 10. There was a study stating the baclofen pump may cause scoliosis to progress in patients. The jury is still out on that one. All I know is that when they did the pump surgery in April 2004 he had very minimal/mild scoliosis there was no problem doing the surgery. Now nearly two years later it is at 70 degrees. But he has begun puberty and probably hit a growth spurt which I'm thinking may have set off this change. I guess I will never know for sure. Well, like I said once I know what type of surgery he is having I'll go from there.

  4. #34
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    Jan 2006
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    Hi, Heidi
    The pulmonary drs nurse got back to me this morning about the VQ study and the doctor didn't feel it was necessary in his case. The nurse told me it only measures blood flow. I asked well what about the ventilation part of it and she still told me no. I don't know what to think? If his spinal surgeon says that he will need anterior surgery as well then I will have to ask this question again when I'm in clinic with my son instead of over the phone. Certainly, I want to know which lung is doing more of the work. Then again, it is like you said everybody is different.

    My son had his nighttime pulsesac study last night. He was alright when sleeping on his left side I didn't wake up to any alarms. His best was 95-96 and would drop down to 88-89 and then come back up again. But when I heard my son up at 4 pm and I changed his position to him lying on his back with the head of his bed elevated. Then the alarm went off several times. He was dropping below 85 the lowest I saw was 81 it could have even been lower at some point. I didn't really fall back to sleep after that and got up at 6:30 to get him ready for school. I think there has been a change since the sleep study last May. He was sleeping on his back for that study and he wasn't dipping that low. I'm pretty concerned about it. My son always maintained 100-99% when healthy. It doesn't seem to be the case anymore. I'll have to see what the dr. says about it. I decided the BiPap wasn't going to work for my son because he hates anything on his face (masks and tubing). He just doesn't know any better to keep it on. I'm wondering if he may need a little oxygen at night now.

    I'm also waiting for results of his echocardiogram which was done yesterday. It looked like the tech checked more that just his heart. She was checking his lungs as well as his upper airway.

  5. #35
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    Jun 2004
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    I have to say YIKES on the O2 levels at night. Yes, I would say he definitely needs O2 at night, and frankly, he may also need the bipap. I know it is really hard to get them to wear it, but it is worth a try if your sleep docs think it might help. Sean has a severe oral facial aversion, it is only this last year that he finally was able to allow the dental hygeinist to clean his teeth without having to go to the OR under a general! It took some doing, but he DID get used to the bipap, and realized all on his own that it helps him to sleep better and feel better. Did they try him on it when he had his sleep study? sounds like a new sleep study is definitely in order...


    At our elevation (2800 ft) they want to keep him at 92+ during the day and 94+ at night. at a lower elevation they would want it higher than that, and a higher elevation they would allow it a little lower.

    Keep me posted

    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. #36
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    Yeah, I figured you might say that! I see that I'm not overreacting about the oxygen levels. Honestly, I can't even remember if they used a BiPap for the study or oxygen? He may have had a little oxygen that would have changed things a bit. I'll have to find out from his doc. It worries me that this is his presurgery state those levels will certainly fall lower after surgery. UGH! Certainly, I'm thinking his scoliosis is starting to affect his respiratory status. I haven't tried the BiPap with him yet the doctor offered it as an option and I declined since he was mainting good oxygen saturation at the time. Things look different now. I think he'll have to give it a try. If he can't keep it on then at least I'll know I tried. The oxygen maybe a litte bit easier since it is a tube he won't like it but I think he has a better chance of getting used to that. Yeah, Hunter has trouble with the dentist too but he has gotten better since being older now. He used to fight the whole time the dentist was cleaning his mouth now it isn't quite so bad. They never had to sedate him for it which is good.

    I had a question, did Sean have apnea before his first fusion surgery?

  7. #37
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    Jun 2004
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    Sean did not have his first sleep study until after his fusion, so I dont really know if his apnea was present prior to it. Because he has mixed (both obstructive and central) I would not be surprised if it were there prior to the fusion though.

    If he does end up needing O2 and/or bipap at night, make sure you give him time to get used to it. Our machine has a taper mode, where the pressures start really low then over a 20 minute period slowly increase so it doesnt start right off the bat being high pressure helping him breathe. Also, especially with kids with oral/facial aversions you need to give it time for them to get used to wearing the mask. In Sean's case it took him about 2 weeks to be fully comfortable with it, but in other kids I ahve heard it take several weeks. We started off by giving rewards for keeping it on for half the night, or for not fighting me when I was putting it on, stickers, that he could save up for bigger rewards. You need to find what will work for your son, and go with that to help him make the right choices, you know? If it would help, I can send you some pics of what it looks like, and I know that Sean would not mind emailing or sharing if you think that would help, since they are similar ages.

    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. #38
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    Jan 2006
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    Hi, Heidi
    I PM you.

  9. #39
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    Oct 2003
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    Hi,

    I can't add to the info Heidi has given you. I'm just glad you are getting this sorted out before making any scoliosis surgery plans. It is very important to have his entire medical history in mind when choosing the right procedure. Good luck and keep us posted. I hope you can figure all this out for him.
    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/

  10. #40
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    Jan 2006
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    Hi, Carmell
    Thanks for your continuing support and checking in to see how things are going.

  11. #41
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    Jun 2004
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    55
    Blackwidow, you have mail
    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. #42
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    Jan 2006
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    Hi, Cdhheidi and Carmell
    I know it has been awhile since I've checked into the site. Heidi, I noticed you posted that I have mail. But I don't see any private messages in my box I also didn't get any email from you. I'm not sure if it got lost? How is Sean doing? I hope things are continuing to go well for him. Let us know!

    Hunter was put on a 1/2 L of oxygen at night since he had elevated carbon CO2 levels in his blood. He hasn't had a repeat blood gas as of yet. But no BiPap.

    I have met with two surgeons now and now comes the decision of where it should be done. I like both of the surgeons. But my main concern is the postop care. The Children's Hosp. here in Milwaukee that my son has been going to for 10 years has been somewhat of a nightmare especially with that last surgery he had. I have a lot of reservations of doing it here since I still feel like things are a bit sketchy as for his post op care. The other surgeon I went to for a 2nd opinion is in Madison about 1-1 1/2 hours drive from home. I liked him as well and he was clear on Hunter's plan of care post op. Both places have pros and cons. I'm a little hesitant in going to a hospital that my son has never had any treatment before and none of his other docs are there. So he would be starting fresh. Plus, it is a bit of a drive from home but I suppose not too bad. But with the other hospital here in Milwaukee I feel so negative about that I'm not sure if I can deal with it again.

    As for the surgery both docs want to do a posterior fusion nothing anterior. Just the instrumentation differs. One wants to use hooks and wires. The other one wants to use the segmental screw method. I'm not sure if one is better than the other? Any thoughts would help? The 2nd opinion doc said it is a matter of the surgeons preference. He will be fused all the way down.
    I'm starting to wonder how I plan on lifting him once he is home. I won't be able to lift him by myself. I don't even know if I'll be able to use a lift right away since it is like a sling. The doc mentioned a two person lift. I may end up needing to get an aide or perhaps a neighbor can help me when I need to lift him.

    I have a surgey date at the end of July penciled in for him here in Milwaukee.
    I don't have anything as of yet out in Madison it would be around that time as well June/July. They apparently book up fast in the summer. I did speak with a parent about the surgeon here in Miwaukee and she is an ICU nurse there as well and she had nothing but good things to say about the doc. I just got a phone number of a parent for the 2nd doc out in Madison and I'll be speaking with her soon. So I can get a better idea of how things are at that hospital. I hope this will then help me come to a decision.

  13. #43
    Join Date
    Jun 2004
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    55
    Somehow my mail got lost to you... I am sorry about that... I dont remember all that I had in it at this point. I think what you need to do is maybe make a list of pros and cons for each hospital, and then go with your gut. Speaking from experience, having a child at a "new to you" hospital is hard to deal with, but sometimes it can be for the better. If they are going to work with you in a team approach, that would be helpful (as in getting all of the various specialties who will NEED to be involved... my Sean was evaluated by ortho, hemoc, pulmo, cardio and anaesthesia prior to his halo traction and fusion 1 1/2 yrs ago)...

    Anyway... I wont be able to write much for a while. We have found out that my son will need to have his superior vena cava reconstructed or replaced, and our local hospital is unable to do such an advanced procedure. Assuming they agree, we will likely be traveling to Boston in the next few weeks to have this done. Essentially it is an open heart kind of procedure, so I dont know when we will be back.

    Take care, and know I will be thinking of you and your son, and your decisions in dealing with this surgery this summer.

    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.)

  14. #44
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    Jan 2006
    Posts
    78
    Hi, Heidi
    I am so sorry to hear the news about Sean. Please give him a hug for me and one for you too as well! Honestly, I can't imagine what you guys must be going through. You have my email address if you ever need to talk or vent. I will keep Sean and your family in my thoughts and I hope Sean gets through this with flying colors. He's tough!

    I've done what you had mentioned making a list of pros and cons in my head but I still haven't come to a decision. It is tough I go back and forth I'm just not quite sure. Unfortunately, I don't have a gut feeling either way. Like I said hopefully once I talk to this parent in Madison I'll be able to come to a decision. As well as take a tour of the hospital itself.

    From what the doc said in Madison it sounds like a team approach. He would be seen by the necessary docs before the surgery. Also a presurgery appt. a month in advance as well as meet with anesthesia and pain management at that appt.

    As for the missing email I did get Sean's pictures of the BiPap if that was what you were referring to. I did send you a private message or an email I can't remember which perhaps my mail to you got lost. If it was something after that I didn't receive anything.

    Well, Heidi I wish you and Sean the best and take care of yourselves.

  15. #45
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    Oct 2003
    Location
    Utah
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    Howdy,

    I just wanted to ditto what Heidi said. We have traveled out of state for surgery for Braydon, too. We had to trust that the hospital who did not know Braydon, knew about this "team" approach and was willing to listen to our input. We/you know him best. You will know how to offer suggestions to whichever hospital you choose so that he will have the best experience possible. If you don't have a "gut" feeling yet, like you said, talk to other parents, take a tour of the hospital, ask LOTS of questions. Even meet with the Pain Services team and whatever other area you feel is important in giving him a good outcome. Having a plan for pain management post-op is a good idea. You need to know what to expect. Each situation is different enough that you need to ask specifically for him.

    Heidi - please know we will send more thoughts and well-wishes and plenty of prayers to you and Sean in the coming weeks. I can only imagine how scary this is for all of you. Please 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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