Fusion Surgery after tethered cord release

[smileyskl]

I haven't posted in a while but decided to update. We just received an appointment for surgery on January 26th. My daughter will be having a spinal fusion instead of growth rods like we originally discussed. I feel good about this decision even though I am very scared as I know any parent would be. I was wondering though if anyone has any experience with fusion after having a tethered cord. She had hers released in December 2007. Her surgeon doesn't seem too concerned about it and we are going to see her neurosurgeon before the fusion but I was just wondering if anyone has any input on this. Also, any tips to help with hospital stay, things to watch for, etc. would be appreciated. Thanks.

Smileyskl

[Carmell]

Smileyskl,

My son had TC release surgery AFTER fusion surgery, which is potentially a bigger issue since the bones have been fused solid (no lamina/soft tissue to go between the bones of the spine). His fusion was higher than the TC so it was a non-issue for him. He's had 2 TC release surgeries - hopefully no more.

Good luck with surgery and all the things going on. Hopefully the neurosurgeon will have good things to say about her. Keep us posted.

[smileyskl]

Hers fusion will stop before the tethered cord release area also so maybe it won't be an issue with her either. I am calm and she is calm about the surgery right now and we are leaving it in God's hands. I am sure I will be much more nervous the week or so before, but I believe I will have the strength I need when I need it. It helps to see how many people have been through this and so much more with positive outcomes. I will keep everyone posted. Thanks for your help.

smileyskl

[fierceliketiger]

I had two tethered cord releases, one when I was 2 years old, another when I was 20. I just had a fusion (I'm 23 now) from the pelvis to t-10 7 weeks ago. Apart from the scar looking thicker at the base, it didnt seem to cause any problems. :-)

[smileyskl]

Thanks for responding. That makes me feel a little better since I didn't know of anyone having that done. I was told that if her cord retehered it would most likely be before she stopped growing. What were you told about the possibility of recurrance?? Thanks

smileyskl

[fierceliketiger]

I've seen several neurosurgeons lately (they wanted to make sure my scoli pain wasnt a small regrowth of a tumor/re-tethering). They said that anytime you put on body fat you can be a little more susceptible to it. But that was because my tethering is accompanied by lipomas. Not sure what type of tethered cord your daughter had.
Unfortunately I am not a small person at the moment (I was a very small kid, but then broke my ankles 3 times in 9 months, and had to be pretty immobile for a full year at age 13-14. So I gained weight, right now I am looking to get that back under control. ( and have lost 65 lbs!). I have a small piece of tumor still that they just couldn't get, but its not tethering anything. Still, the propensity for it to grow if I gain weight is there. I guess its because lipmas are basically just fat cells, so when you gain fat cells, so does the tumor. :-( They did tell my mom when I had the first untethering that if I made it through adolescence without another retethering I would probably not get one again. We don't know exactly how long I was tethered the 2nd time before we found out. Could have been up to 5 years, which would put me in squarely in puberty when it happened. My symptoms just didn't intensify until I was older.
Again, not sure if your daughter has this, or a spina bifida related one (I had that as a baby as well...so I am sure mine is probably both)
Hope that helps!
I see that her surgery appointment was 2 days ago! How is she doing? *hugs to both of you!* its a rough thing to go through!

[smileyskl]

My daughter did have a syrinx but the neurosurgeon referred to it as a fluid filled cysts and not a tumor. I am not exactly sure what the difference is. He said the syrinx was caused by the tethered cord and that she had been like that from birth but it was not spina bifida. All of this is very confusing to me. The tehered cord release automatically caused the syrinx to go down. He thought the surgery would stop her curve from progressing also but obviously it did not. So, thats why she is at this point - having to do the fusion. Her curve progressed rapidly even while wearing a brace 23 hours a day. I guess you somehow missed my post about rescheduling the surgery but we have changed it to February 9th because of a staph infection. She is getting pretty nervous but not half as nervous as I am. I am praying that all goes well. Congrats to you on your 65 pound loss. That is a huge accomplishment. I need to lose about 50 or so myself. Its much easier said than done. I wish you continued success. I will be so glad to get on the other side of the surgery. Thanks for your response and information. You sound like a very brave young woman and I will pray you do not have a returning tumor. Keep us posted.

Sharon

[Carmell]

Sharon,

The "tumor" type condition fierceliketiger is referring to is a lipoma - a mass of fat that can cause a tethered spinal cord. A syrinx is a fluid filled sac, not a fat mass. These are two very different types of conditions that can each cause a tethered cord. A lipoma is not a tumor, but it is sometimes referred to as a tumor just for explanation purposes (doctors try to simplify sometimes and cause more trauma because they use incorrect terminology - silly docs).

HTH

[smileyskl]

Thanks Carmell,

Now why don't the doctors just explain it like that??? It made perfect sense when you explained it. You have been dealing with this stuff so long, you are becoming a pro. How sweet for you to share your expertise.

Sharon