Re: physical therapy after tetherd cord surgery

[Guest guest]

Tory, I think you are still very new after such a big surgery and it will take a

long time to really recover. TC surgery, in my opinion and the opinion of a few

others I've spoken to, can inflict a rough recovery.

My personal situation is that I am 18 months post TC op and I still can't do PT.

I understand why, it's because I am still so unstable at the skull base. I go

for the fusion surgery on June 4 at TCI.

For me, if I wear my ston CTO to bed at night, I do not have as much pain

below the waist. I do recall that horrible hip pain. It stayed with me, off and

on, for more than a year, I'm sorry to say.

What helped? Try avoiding caffeine. Try avoiding drinking too much fluids

before bed. At least for me, the hip pain came when I woke up in pain from

needing to urinate. It helped me alot if I avoided bending/stooping/kneeling

during the day, and drank less fluids in the evening. IF you have a rigid

collar and want to try wearing that to bed, you might find that helps as well.

I tried twice to go for PT post op and both times, it caused me such painful

flare ups. I emailed my TCI nurse and she told me, " If it causes flares, stop

doing it. "

I'm a person who will always overdo on days I feel good. Even though I shouldn't

and I tell everyone else not to. ;-)

My thoughts: you are still in a recovery mode from the deeply invasive

surgery...you should give yourself rest and avoid anything that causes the hip

pain (you might be walking too much, for example)....avoid fluids in the

evening...try wearing a soft or rigid collar at night, this might help.

[if the reader wonders why a collar would have anything to do with TC, imagine

at night, if you are in a fetal position without knowing it, your chin is very

tucked to your chest, you are pulling the spinal cord up in that position, and

it is aggravating the situation going on right now at the base of the cord]

I hope this helps. I know that hip and bum pain is awful!

Virginia

4 plc fracture of the C1; Tethered Cord; " acquired chiari " (Not ACM)

5.7 mm; Atlanto Occipital Dislocation; mild scoliosis

and " severe " Functional Cranial Settling all due to equestrian accident,

2004. TC surgery at TCI, 11/07. Fusion June 9, 2009

>

> Hi all, hope everyone is doing well. I have a couple of questions regarding PT

after tetherd cord surgery.

> 1.When did you start?

> 2.What type of exercises did they have you do?

> 3.Was it benificial?

>

> I am having horrible hip pain-lasts all day from sleeping on sides. Does

anyone have any suggestions to help w/that? I am 6 weeks out now.

>

> Thank so much for any advice you may have,

> Tory

>