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Thread: any experiences with spinal cord surgery? (sib ment)

  1. #11
    NancyR's Avatar
    NancyR is offline INCIIDer - A Community Creator
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    MY dd has had major surgery - but on her legs. I can certainly help you with questions about recovery, etc...

    I think most importantly, PRIOR to the surgery get a list from the neurosurgeon as to what meds you should go home with post op and their doses. Double check this with what prescriptions are given to you when you are discharged. Both times we had problems with the meds. THe first time they forgot to give us a prescription for liquid valium to control the muscle spasms, and the 2nd time they gave us HALF the recommended dose for the pain meds (the doctor saw she was 25 Kilos and some how translated that as pounds!!).

    Also, get a time line of what to expect post op: how long immobilized, how long for strenghtening and how long to full recovery.

    Most importantly, it was awful having Leela enter school late - all the kids had their buddies, etc... and she didn't have a best friend all year. Pull him out of school at the end of the year and time the surgery so he will be ready for school come September (if you have the luxury to do so given his diagnosis).

    With Leela's surgery the first 3 months were really hard on my physically due to all the lifting - start working out now so you will have the upper body strength to help him go to the bathroom, etc..

    If you could pre-freeze about two to three weeks worth of food prior to the surgery it will take a ton of pressure off of you. I really didn't sleep the first few weeks we got home because I was so busy helping dd get thru.

    We also brought home several bed pans, much easier than transferring to the toilet, and she did lose some bladder control temporarily post op.

    Hugs! N

  2. #12
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    Thanks for sharing your surgery stories ladies - I really appreciate it. Wow that was rough for all of you. OMG Nancy, I really feel for you. Fortunately I don't think what we're doing is anywhere near as involved.

    We saw the neurosurgeon on Monday. This surgery will release the tether of the spinal cord. Basically he will go in somewhere very low, which will require taking off a small amount of bone on two vertebrae to go in between. Then he opens up the dura and whatever else, and finds the filum, which he said should be easy since it's fatty and thickened in ds's case. Then he snips it. He'll send a small portion off to pathology. But that's it. It should take about three hours. DS will need to be flat on his back for a day (hoping to heal enough that fluid doesn't leak out before he gets upright). He'll probably be in the hospital for two days afterward, possibly a couple more. Then he goes home. By the time he goes home, he won't be on anything stronger than ibuprofen. It still sounds like it's going to hurt though! I need to call back and ask a few more questions about recovery, but he will probably be back in school soon.

    The surgery is scheduled for late October, about a week before halloween. I want to do it the week prior to that, but it doesn't work with DH's schedule, who will have to be the one staying at the hospital most of the time because I'm still nursing my 3 month old. Ds has off from school that week but the surgery's on a Friday. So he may end up missing some school the following week. we'll see.

    I was surprised the neurosurgeon didn't want to wait a few months longer, in spite of the ITP (low platelets). He and the hematologist cooked up a plan whereby ds will do treatment for low platelets (immunoglobulin) a week prior to surgery, if his platelets are still low (I expect they'll still be a bit low, though hopefully over 50,000. Normal is 150,000). With a tethered spinal cord, there can be neurological deterioration with growth, and that deterioration is often permanent, so the whole idea is to avoid that. At this point I just want to get it over with. I haven't told ds yet; I'm not sure what to say. He already feels different from 'normal' kids.

    That's the plan so far. I'm sure I'll need more advice about this...
    beth

  3. #13
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    Check and see if they have a child life program. They can take the child on a tour of the surgical facilities a few days prior. It really makes a huge difference in the way the child reacts to the situation. We were advised not to tell dd until a few days before - they don't have a clear sense of time, and it's too worrying for them.

    Dd really loved getting soft squishy huggable gifts while in the hospital, basically a new one every day to keep her spirits up, lol.. If he's lying flat on his back, probably DVDs would be the best thing!!

    Glad to hear the surgery doesn't entail a long recoup! PHEW!!!!

    Hugs!! N

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    Default I don't usually post here, but I lurk often.....

    My dd was born in March '06 with a condition called esophageal atresia. We found out when I was about 18 weeks pg. I was followed by a genetics team during my pregnancy and they went over her with a fine toothed comb after she was born. One doctor after another would come into my room to tell me what they had found "wrong" with her. They were all little things compared to her main issue but added together it was overwhelming. These things are part of a syndrome that includes her spine. It was thought in the beginning that she had a tethered spinal cord but further investigation determined that she didn't. We did however have to prepare ourselves for the surgery to release her cord. EVERY surgeon we talked to said that it was not a difficult procedure. The key is to find out about it early (which you did) and correct it. If it is tethered and not released it can cause nerve damage down the road. I don't know if you've talked to your surgeon yet, but if he tells you otherwise you may want to see someone else. My dd also has a sacral dimple. I never would have thought anything about it had she not had the other anomolies.

    Anyway, I wish that I could be of more help. I hope that you get reassurance from your neurosurgeon. My genetics team was also interested in the fact that I had done IVF w/ ICSI. I think about that often....but there's nothing I can do to change it and I wouldn't trade my sweet angel for the world.

    Hugs to you and your sweet baby. I will be thinking about you.....

    Caroline

  5. #15
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    Default Beth...I just found the post where you gave

    the update. I'm glad they are going ahead with the surgery. It was stressed to us that Madeline needed the surgery early. Aren't you glad you mentioned this to the ped..... Sometimes I think it's divine intervention!! I think it was Oprah who said that when you have that little nagging feeling tugging on your conscience she feels it's actually God sending you a message.

    Btw, when my daughter had to have stage two of her esophageal surgery her blood factor 7 level was very low. It's the clotting factor in your blood. I was terrified!!!! The need to do the surgery was greater than the need to wait for the level to come up. The surgical team was prepared and although she had to have several transfusions she did great. I think the key is that they know any problems ahead of time.

    Good luck!

    Caroline

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