Tethered Cord Surgery

[sharidee]

My Granddaughter Alyssa has Tethered Cord Syndrome, with a Fatty Lipoma at the base of her spine.  She had her first surgery when she was 2 yrs old, her second surgery when she was 8, and her third and fourth surgery recently at the age of 15.  Her third surgery was right before Thanksgiving.  The surgery lasted 11.5 hours, the surgeon said the cord was pulled so tight!  They were able to unthether the cord until the very base, but the cord was tethered and entangled around nerves and scar tissue, so they weren't able to untether the bottom of the cord.  They also found that she has Degenerative Disc Disease, which the surgeon said that is usually seen in older adults!!  They sent her home on the fifth day, and she was back in the hospital a week later, with what they thought was Chemical Meningitis.  She spent another 8 days in the hospital and they sent her home with a pic line so that Mom could administer antibiotics for 3 weeks.  The pic line was removed a week before Christmas and the antibiotics were stopped.  Four days after Christmas her symptoms returned, fever, headache, blurred vision and numbness in legs.  She is back in the hospital at this moment, after having yet a fourth surgery to see if there was infection in side her spine.  There was no infection, but they found a few pin hole leaks in the Dura that probably happened during the last surgery.  They repaired the leaks that they saw and put a drain tube in so that any fluid could drain out.  Tomorrow will be 5 days post op and the fluid still continues to drain.  They had it tested and it is spinal fluid, and also some blood mixed in with the spinal fluid.  I am worried about what will happen if the fluid keeps producing.  The doctors said they may have to go back in again and check for more leaks.  My Granddaughter told me today that she doesn't think that she can go thru another surgery, she's afraid that her body will just shut down.  She has gone thru so much in the last month, she is just plain tired of all of it!!  The doctors mentioned that they might have to put a shunt in, and I don't know if that is something that would have to be permanent, or if it can eventually be removed.  I'm worried about this fluid that keeps leaking, and where it's coming from.  When she get's up and walk's and then lays back down, the fluid starts coming out more.   I'm so worried about the final outcome of this!  If anyone can shed some light on all of this, or if they've been faced with this same problem, I would appreciate any info you can give us.  Thank You!

[laratterman]

I really don't have much to add, but wanted to let you know that Alyssa will be in my prayers... along with her doctors.

Blessings to all of you!

[denverluv]

I went through a few back surgeries when I was young. I did get a shunt put in and it does stay there.
Having mulitiple back surgeries is tough. I can understand when she says she doesn't know if she can deal with it. It hurts - really bad. Being in the hospital bed day after day is tough. I was fortunate never to have the problems she is having which is why I feel so bad for her. I know what I went through was awful - I can't imagine having to keep going back like that. Tell her, it does get better. I know it does. Even though it seems like I am back in the saddle so to speak, the pain she is going through now will get less. Tell her to just hold on.

[selmaS]

....oh and I forgot to mention most with chiari and related conditions do get the DDD and other issues earlier in life....it is a nature degeneration and not really a disease. Bulging disks and stinosis are also common for us.

And the fatty lipoma from what I remember my dr saying is normal in those with TC....it is a cyst like growth where the cord attaches to the spinal column....I wish I can remember teh exact what it was told to me, so I may get back to u on this .....I am sure u know about chiarians and our cognitive issues so....I will remember.

"selma"

[selmaS]

Hi and welcome to the Chiari forum.

I also have TC, but have not had my surgery yet.....I did however have my PFD for chiari in May.

Were all the surgeries for TC?....I do know that the body can begin to over produce CSF or the body can not absorb CSF after having PFD surgery and I wonder if it can also happen after TC release.

A shunt would be needed as the excess CSF will cause pressure HA's and all the other symptoms that the surgery was to relieve.

Once a shunt is inserted, I do not feel it get removed unless that type of shunt is not working...and it can take a while for the shunt to be set correctly.....if set to drain to quickly it can cause symptoms and if too slow....so it may take time to get it just right.

I have not heard of neone with a shunt having it perm removed.

I wondered the same things that Shannon asked....is her dr a true chairi specialist?....did /does she also have chiari.....and were all the surgeries for TC?

I am so sorry ur GD has been thru all this, but I am glad to welcome u to our little family here....I hope u can find the answers and support u seek.

"selma"

[shanmomof3]

Hi and welcome to the group. I'm SO sorry your granddaughter is having to go through all this! Does she have chiari too or just TC? Is her dr a chiari specialist? I really dont have any insight for you but just wanted to welcome you and let you know that she will be in my prayers! Selma will probably have some info or idea and she will be on later today. Keep us posted! -- Shannon