Alicia had TCS Surgery

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Alicia had TCS Surgery

Postby moo10761 » Wed Jun 20, 2007 5:41 pm

Hi everyone

Just letting you know that Alicia has had her TCS surgery here in Australia. Its been 1 week now and she's getting a little more mobile each day - she even says she can feel the bottoms of her feet!

For those of you who have had this surgery, can you let us know what to expect in the way of recovery and improvement of symptoms? Is there anything special she should avoid? Any feedback would be greatly appreciated.

Regards.

Lesley in Australia
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Postby mac » Wed Jun 20, 2007 8:36 pm

Lesley, thanks so much for letting us know how Alicia is doing!!! And I'm so glad she's starting to feel her feet again. That's good news!

tell her we said hi and are thinking of her...and you.

hugs, mac
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Postby hartagold23 » Wed Jun 20, 2007 9:42 pm

Hi, Lesley

I just had TCS surgery in May. I think everyone is different and will experience improvement in their own way, depending on where the tethering was located, how much deterioration they had before the surgery, what the tethering was caused by, etc.

My tethering was in the lumbar spine and had been caused by a previous spina bifida operation, so the nerves stuck to old scar tissue. Before the surgery, I had a paralyzed leg and had to use a walker and a wheelchair. The TCS operation unparalyzed my leg by the second day after surgery. I was able to walk a few feet a few days after surgery. Now, I am walking about 150 feet a day, but still have to use the walker because of spasms that haven't gone away yet (and they make me fall); also, I am still very weak from having been paralyzed for a year.

The doctors are guessing it will take me a good 3-4 months of heavy physical therapy to be able to walk without assistive devices, but that is if the spasms go away. I also have SM and that may affect my outcome, too. I guess the very best thing for a good outcome is a positive attitude and lots of drive to succeed, both of which I have and hope Alicia does too! As far as what to avoid--I imagine they must have given special instructions for that; mine were: no bending or stretching for at least 3 weeks (except for physical therapy), no lifting anything more than 5 pounds, no valsalva maneuvers (moves that put pressure on your spine, such as holding your breath while pushing, like for a bowel movement; coughing and sneezing also will be tricky; no submerging the incision in water until it is fully healed. Showers are okay.)

Can you tell me more about Alicia's case before surgery? (e.g., where the tethering was located; how much she could or couldn't walk before; if she used devices; what the tethering was caused by, etc.) I don't think I'm very familiar with it.

Thanks and best wishes to Alicia!

Barb
Last edited by hartagold23 on Thu Jun 21, 2007 2:22 pm, edited 1 time in total.
SM/TCS/SB-lipoma/B12 def/Scoliosis/IBS. Had TCS surgery May 24 '07-syrinx totally drained! CSF leak repair--July 16 '07. Currently using a walker for short distances, probably permanently. Surgery was worth it to kill most of the pain!
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Postby Sandy » Thu Jun 21, 2007 10:53 am

Hi Lesley,

Please tell Alicia I am praying for her, and for you too!

love,
sandy :D
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Postby kiminfla » Thu Jun 21, 2007 12:31 pm

Hi Lesley, I pray Alicia will continue to see more improvement daily. Take good care and be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Postby moo10761 » Thu Jun 21, 2007 7:24 pm

Thanks everyone for their replies.

Barb - Alicia has syringomyelia and Chiari 0 as well as mild CCI. We were at TCI in Jan this year and Dr B recommended TCS surgery for her with the aim to improve her symptoms from the waist down (pain, bladder and bowel problems, crawling under the skin sensations, numb feet etc). He also has hopes that it will collapse the cyst in time. Her surgery was to cut the filum terminale at L4. Apparently when the surgeon cut the filum it sprung back so I guess that was a good indication that the filum was tight. Only time will tell now if this helps. The only assistive devices she uses are a cane (occasionally when the pain is too bad) and a neck brace for long drives or when her neck pain is too bad (which is often). Your situation sounds much more serious than Alicia's, but I guess that's all relative isn't it?

Regards.

Lesley in Australia
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Alicia's surgery...

Postby emmacos » Sun Jun 24, 2007 4:04 pm

Hi Lesley,

So glad to hear Alicia has at last had her surgery for her tethered cord. I hope it relieves many of her symptoms.

Send her hugs from us in England!

Emma.x
(Mum to Helen aged 15, cm/sm, Scoliosis). England.
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