I had my Chiari Decompression and Cervical Laminoplasty on 9/23/13. The surgery was a big success and I was having mainly surgical pain. However because of non-stop headaches and some return of pain and some new ones, doctor wanted to check for Tethered Cord. Sure enough, I have Tethered Cord at L2 and need surgery. Apparently about 20% of Chiarians have this. Doctor said it was worse then he thought when we reviewed MRI. If anyone has had this surgery, I would appreciate some insight. They are going to try to go in at an area where I have had cut in the same place 3 times, so this makes me a little nervous. I understand it is nowhere as bad as my Lumbar Fusion or Chiari surgery was. Any advice would be great and also I would love all the prayers I can get. I am praying this will be my last surgery. God Bless Karen
Hi Karen,
If you don't mind me asking: how was your tethered cord diagnosed and can you describe your symptoms more?
I am thinking I need checked for this.
I know you asked for advice but would you mind answering this for me?
I too hope this is your last surgery and I can sympathize with that feeling VERY much!
Will be praying for you as well.
Thanks Abby. I think Dr. Heffez tested me for Ehlers Dan Los Syndrome, but I am not sure. I know he tested me for hypermobility, which I do not have and looked at something with my skin. Thank you for the hug and prayers, I can't tell you how comforting it is to be able to speak to others who are having to take a similar journey, whether they are halping you, or you them. Sometimes I just feel so broken, but I know there is always someone to reach out to who understands. Thank you.
Abby said:
Hello Karen,
We are here for you and praying that this will be indeed your last surgery. Have they diagnosed you also with Ehlers Danlos Syndrome? It is a connective tissue disorder that many of us have that can cause Tethered Cord. I am sorry that you are going through all this, but please know we are praying for you and and sending you a hug. Please keep us informed and let us know if you need anything.
God Bless
Ophelia, my tethered cord was discovered at my last doctor's appointment on 1/5/14, as I was having some symptoms reoccur and some others got worse or show up. Dr. Heffez had me bend from my waist and pushed me further then I could usually go. It made my legs very unstable and felt rubbery as though they could not hold me up and it caused extreme pain. He had told me at my previous visit that if I did not start feeling better he was going to check for tethered cord, as he believed it was something I might have. I have to tell you I was in extreme pain in the lower part of my body for 3 solid days. He sent me for an MRI at the chiari clinic as soon as my appointment was over, and he called at 5:30 that night to tell me I did indeed have tethered cord.
My symptoms were:
Still had headaches and fullness in head
Stabbing pain in middle of shoulders (could be healing of laminoplasty)
Extreme pain in neck/shoulders (left side)
Numbness and tingling in left side of face
Burning feeling in left palm
Difficulty sleeping due to pain in middle and lower part if back
Extreme sweating without exertion
General heaviness in parts of body
When sitting in chair with feet up, my left foot had extreme numbness and tingling especially in the area just below my toes. It feels like I have on those socks that have a right band there on that part of the foot, but it felt even tighter.
Arms and kegs jump when sitting in chair
Dizziness/lightheaded
Trouble swallowing
Always tired, no energy
Having really push when urinating, not feeling I am getting all urine out
Ringing and swooshing in ears
Sorry this is so long. Some of these I had before surgery. Some got better with surgery and then started to come back, and some are new. I certainly hope this helps you. Dr. Heffez said it was tethered at L2 and that it was worse then he thought. I made a list this time so I would not forget anything, I think this is important because sometimes it is hard to digest things and then you forget what you want to say. I truly hope you get VHS help you need to feel better. If I can help you at all, or you just want to talk about things, I check in frequently. God Bless Karen
Ophelia1568 said:
Hi Karen,
If you don't mind me asking: how was your tethered cord diagnosed and can you describe your symptoms more?
I am thinking I need checked for this.
I know you asked for advice but would you mind answering this for me?
I too hope this is your last surgery and I can sympathize with that feeling VERY much!
Will be praying for you as well.