Chiari Online Support Group

Tethered cord

I was diagnosed today with a tethered cord. I just found out I had Chiari 1 with 5 mm herniation. No syrinx and good CSF flow. Neurosurgeon wants to de tether before talking about decompression. He told me my headaches and neck and back pain should get better after de tether. Just curious if anyone has had this happen with them. He also told me It was a fairly easy surgery 1 day in hospital and two weeks recovery. My son graduated high school May 17. When I posted on a facebook group they all acted like I ahoukdnt have de tether. I am so confused!

Sorry to hear about your issues unfortunately I don’t have any help for you since I am also newly diagnosed. But I was wondering how they found the tethered cord and what part of your spine is it located? I wonder have you sought a second opinion from another surgeon? I would probably start with that.

I have seen a neurologist and two neurosurgeons. The first neurosurgeon would not perform all the tests that I knew were necessary. So now I am under the head of neurosurgery at MUSC. I have had 6 MRI’s total. The MRI of full spine or I think it’s called lumbar spine is where they found my tethered cord. I am also about to see a “Chiari specialist” in North Carolina, Dr. Rosner.

Well I wish you all the luck, I am still trying to get a lumbar mri ordered because I have lower back pain and I have only had cervical and the brain mri. That’s where they found the 13mm chiari. Did you have any of the other symptoms like the bladder or bowel control issues because I do not have either of those issues but I don’t think that means I couldn’t have the tethered cord. I would like to rule that out. Again good luck getting answers and relief!!

Tethered cord is usually congenital but sometimes tethered cord develops as a result of non congenital factors like scar tissue or the growth of tumors or cysts in your spinal cord. You are clear of tumors You apparently don't have cysts (syrinx) and scar tissue is likely not an issue as your herniation is small at 5mm and is not restricting CSF flow. I'm guessing he may be on to something but as others have suggested a second opinion may be in order. Its not a matter of decompression or broader surgery, but whether or not those other factors exist.Its possible that release can make things worse or stay the same leading to additional surgery If your symptoms are caused by a tethered cord, the surgery he has suggested will make it better. IF the tethered cord is the result of the chiari, it may not as there is nerve damage and no surgery will likely help.

Now here's the thing about facebook groups and even support groups unless they are heavily moderated and vetted they can be very fatalistic and agenda driven. I don't believe a day has passed that we have not had a reputation management service attempt to gain access to one of our BF communities. Whether it is "physician recommendations," "medications," surgical procedure etc etc. There is somebody or numerous somebodies trying to gain reputation on the internet and within user groups. Its not that what they are doing is bad wrong or even incorrect but they are skewing reality. We have booted at least one member in past few weeks from this site posing as a patient helped by advocacy group and promoting their materials.

I would expect a facebook group to be anti-release surgery as I have seen few of them not pro "big surgery" Its not on purpose, its because the folks who frequent these groups are most frequently those who do not represent the typical patient. Patients who are being medically managed or had successful procedures are most often to busy living life to dwell on these groups. It doesn't mean their experience or advice is bad. its usually pretty good IF it applies to you.

Not a lot of NS would consider you a surgical candidate but you will find some who will. Around here that usually translates to a "surgeon who knows Chiari" As Chiari and tethered cord are among the most common neurological defects, they all know it, their approach is whats different. If you want to have big surgery , you will likely have no trouble finding a surgeon to do it.

Thats where a second opinion comes in. Most are not worth the time put into them. Generally folks wind up getting their second opinion from a doc who they pretty much know what they will say. If you go to XYZ Chiari Center, you will get a skilled surgeon who will surprise surprise recommend surgery... After all its what he does-all he does.

My recommendation FWIW is to get a second opinion from an academic center or a Major medical center associated group.I would not necessarily have them do the work, but you can be better assured of and evidence based opinion. I would not necessarily go to a support group "recommended" surgeon (you shop those guys when the decision is made) Good Luck!

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I thought that this moderator posting remains valid when folk are searching for medical folk to assist. I particularly liked the advice on where to seek out second opinions - academic center or major medical center associated group.