Re: Re: New here - more questions - Margaret

[Guest guest]

Hi

I think it is about 3 years ago. There has been no complications since. This

is the longest that I have went betweeen surgeries. I was suppose to have one,

but then my symptoms got worse. I lost my ability to walk about the week before

surgery. She said we couldn't wait for them to do the testing that we had to go

ahead and do the surgery. I have had 2 since surgery. The first one was

shortly after my surgery and then my most recent one just earlier this month.

take care and if you have any more questions feel free to ask.

take care jackie

Re: New here - more questions - Margaret

hi Jackie,

I actually saw her on the internet when I was Googling neurosurgeons.

How long ago was your untethering with Dr. Sandrine? did you have any

complications or have you experienced any increases in pain, etc since then?

Is it usual for people to have that many untethering surgeries?

Did your GP refer you as soon as he/she found out your cord was tethered? Did

you have a urodynamic study first, and who ordered it if you did?

thank you

Margaret

> > > > > >

> > > > > > >

> > > > > > > First of all, thank you everyone for your replies.

> > > > > > >

> > > > > > > I haven't seen a NSG but I have had an MRI, my cord ends between

L2-L3,

> > > > > > > that is where the conus is lying.

> > > > > > >

> > > > > > > So my strategy is going to be to see what the anesthesiologist

says at

> > > > > the

> > > > > > > consultation and if he still thinks it is ok to do the

injections, I am

> > > > > > > going to ask him why. I am going to ask how many other TCS

patients he

> > > > > has

> > > > > > > given injections and what were the short term and long term

results. I

> > > > > am

> > > > > > > going to bring copies of the information I've read here and on

other

> > > > > web

> > > > > > > sites and explain that I really cannot risk adding more

damage/more

> > > > > health

> > > > > > > problems to my life and if it means waiting a year to see a

> > > > > neurosurgeon to

> > > > > > > clear me to get the injections then that is what I will do.

> > > > > > >

> > > > > > > I said waiting a year because my urologist told me that is how

long it

> > > > > > > would take, unless I was experiencing bowel incontinence in

which case

> > > > > that

> > > > > > > would indicate the cord was too strained and it would force them

to

> > > > > consider

> > > > > > > me an urgent case and operate.

> > > > > > >

> > > > > > I haven't had urodynamic study, I don't really know that I need

one yet,

> > > > > I

> > > > > > > am just prescribed medication intended for incontinence to

prevent some

> > > > > of

> > > > > > > the frequency/urgency. Frequency/urgency is my main issue, my

> > > > > incontinence

> > > > > > > has mostly involved two incidents in bed in the a.m. and then a

longer

> > > > > 2

> > > > > > > week period that occurred a six years ago.

> > > > > > > any comments or advice is welcome,

> > > > > > > thank you

> > > > > > > Margaret

> > > > > > >

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Hi Margaret

I just re read your email and did answer all of your questions. I have no pain

since surgery. I am currently trying to come off of my neuropathy medication

that I have been on since my 2nd surgery. Coming off it is going well. I was

being followed by The NS already for another problem, so she dealt with it as

soon as I told her about my symptoms. She had an MRI done;. My first one I had

no idea what was going on and went to my g p and he didn't know as well so he

tried pain meds after pain meds. Finally I phoned my physical medicine rehab

dr. and she ordered an MRI to be done and had me in to the Neural surgerion with

in 3 days.

take care jackie

take care jackie I started out at 2400 mgs and am down to 600 mgs a day.

Re: New here - more questions - Margaret

hi Jackie,

I actually saw her on the internet when I was Googling neurosurgeons.

How long ago was your untethering with Dr. Sandrine? did you have any

complications or have you experienced any increases in pain, etc since then?

Is it usual for people to have that many untethering surgeries?

Did your GP refer you as soon as he/she found out your cord was tethered? Did

you have a urodynamic study first, and who ordered it if you did?

thank you

Margaret

> > > > > >

> > > > > > >

> > > > > > > First of all, thank you everyone for your replies.

> > > > > > >

> > > > > > > I haven't seen a NSG but I have had an MRI, my cord ends between

L2-L3,

> > > > > > > that is where the conus is lying.

> > > > > > >

> > > > > > > So my strategy is going to be to see what the anesthesiologist

says at

> > > > > the

> > > > > > > consultation and if he still thinks it is ok to do the

injections, I am

> > > > > > > going to ask him why. I am going to ask how many other TCS

patients he

> > > > > has

> > > > > > > given injections and what were the short term and long term

results. I

> > > > > am

> > > > > > > going to bring copies of the information I've read here and on

other

> > > > > web

> > > > > > > sites and explain that I really cannot risk adding more

damage/more

> > > > > health

> > > > > > > problems to my life and if it means waiting a year to see a

> > > > > neurosurgeon to

> > > > > > > clear me to get the injections then that is what I will do.

> > > > > > >

> > > > > > > I said waiting a year because my urologist told me that is how

long it

> > > > > > > would take, unless I was experiencing bowel incontinence in

which case

> > > > > that

> > > > > > > would indicate the cord was too strained and it would force them

to

> > > > > consider

> > > > > > > me an urgent case and operate.

> > > > > > >

> > > > > > I haven't had urodynamic study, I don't really know that I need

one yet,

> > > > > I

> > > > > > > am just prescribed medication intended for incontinence to

prevent some

> > > > > of

> > > > > > > the frequency/urgency. Frequency/urgency is my main issue, my

> > > > > incontinence

> > > > > > > has mostly involved two incidents in bed in the a.m. and then a

longer

> > > > > 2

> > > > > > > week period that occurred a six years ago.

> > > > > > > any comments or advice is welcome,

> > > > > > > thank you

> > > > > > > Margaret

> > > > > > >

> > > > > > >

> > > > > >

> > > > > >

> > > > > >