I am told that I have spina befida, a malformation of my lower spine, which is pulling my spinal cord downward.
The solution proposed by my neurosurgeon is to cut the FILUM, which is a thin part of the spinal cord at the very end, which apparently has no important use. Cutting the FILUM would apparently relieve the downward pull, which may help to reduce the cyst at my spinal cord at T5-T7 thoracic region.
May I ask, the cyst in ur thoracic area is it a syrinx? A cyst filled with CSF as a result of a blockage of the CSF flow?
Spina Bifida is closely related to Chiari Malformation....and those with CM can also have tethered cord, and syringomyelia (syrinx) or cyst in ne area of the spine as a result of an obstruction to CSF flow.
It is a syrinx (syringomyelia) at T5-T7 measuring about 5 cm long.
No, I don't have dizziness, but do have the occasional headache, say once a month.
As for vision, I had to pickup specs over the past 3-4 yrs and power has been growing every year. Recently, over the past one year or so, none of the specs I had made seem give me comfort (while looking far I feel unbalanced, mostly at night); even expensive ones made at the best places.
I am thinking of going for a T-shunt operation/installation in the cyst instead of the untethering operation. What do you think?
Before u try a shunt, know they can fail and every time they do, or get blocked u r in for a surgery....I know so many with them, plus make sure u rule out having Ehlers-Danlos, many with tethered cord have this and u may reject the shunt and have further issues as a result.
I was told I needed the release of the cord as I also have TCS....but, I had the decompression surgery for Chiari, and it did help me...I also have the night vision issues as well as perception...I no longer drive as a result....glasses at times do not help me see...ugh.I do not have a syrinx, but many with a syrinx also get the decompression surgery to help the syrinx shrink....
Have u had a brain MRI? A Cervical spine MRI?
I would have more testing and see what all is going on, as I said those I know with shunts have had more surgeries then they should have.
Yes, I had the decompression at TCI in NY.....my Dr was Dr Salvatore Insinga......I was well pleased...
The thing is conditions like Ehlers-Danlos does not show on a MRI...the Drs have to look for it....and not even all tethered cords show on a MRI...so they may call it Occulta Tethered cord, meaning hidden,.....so, if one of these is an issue u need a Dr that knows how to read the indications for them. In fact it was on an older MRI I had for lower back pain and I was told it was "normal"...when I was finally DX'd with Chiari I requested all my MRI's so they could see, and also requested reports, and then I found it said I had TCS,,,but I was never told....
It is very frustrating as u never know which Dr to believe....sigh....
Thanks for your feedback. You are lucky that you ultimately found a solution and hopefully completely well by now. I have decided to go in for surgery on 9th in Singapore. Can't live like this anymore. Wish me luck and pray for me.
There is only treatment for my condition, not a cure, so I still have lingering issues...yesterday I had vertigo and a nasty headache for much of the day....some days I can not see all that well...I have a few more surgeries I was told I should have, and with the symptoms I have been having I may have to have it sooner then I thought.....
Sending prayers ur way that u feel better and have a successful surgery.
Really sorry to hear that you continue to suffer.
In addition to the decompression you had done at TCI, did you have a syringo plural shunt installed in the cyst?
My doc told me that it is not possible to exactly control the amount of CSF fluid being drained out through the shunt and too much fluid drainage may out, which can cause headaches.
Thanks for your prayers and good luck with your surgeries. Praying for you as well.
I did not have a syrinx, so I was not in need of a shunt, the only cyst I had was the one that tethers my cord...and that is a closed cyst.
Shunts can drain to fast and they can drain too slow, but there are programmable shunts...but everyone I know that has one for CSF issues has had multiple surgeries....so u really need to know if u also have EDS as they tend to reject the shunt and produce more CSF as a result of the rejection.
It is more important to know what the cause of the syrinx is, such as with those that have Chiari they do decompression, if they have bulging disks they work on the disk to help restore normal CSF low and in hopes the syrinx shrinks....
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