Re: TC and OTC surgeries and concerns-long

[Guest guest]

What I have learned over and over...we have to be careful about the

choice of doctors we choose... AND not everything is chiari related

AND the longer we wait many times the worst off we are...

We had this discussion before those of us that waited did get worse

and worse with tethered cord symptoms so I am so sorry for you but

there is nothing that says if you had not waited for the tethered

cord surgery that you would not have ended up in diapers anyway.

I had put off my surgery for 3 months due to trying to finish up a

teaching quarter..at that point my legs and feet were totally numb, I

had lost all feeling below the waist for urinating etc...with one

week left to go for surgery I lost leg reflexes and guess what...they

never came back...I am lucky that I did get some feeling in legs and

feet back, have some issues still with bladder and bowel which I am

sure are related now to permanent nerve damage...no leg

reflexes...nerve damage...waited too long. AND that job sure was not

worth it because that is gone now too.

Kathy

trifecta- all surgeries

multiple other conditions

>

>

>

> Shortly after the new year I began to have bowel and urinary

problems.

> Finally the bowel issues were so bad that I kept asking all the

doctors including

> my NS if the herniated disks in my upper neck would cause bowel

and bladder

> issues. They said no. Not to that extent. So in August I had

Occult Tethered

> Cord surgery after doing the urodynamic testing and a bunch of

other

> scans.Then 4 days later had a leak, returned to NS and not only

had a CSF leak but

> also an infection. SO had another surgery. after about 8 weeks of

craziness I

> started to feel better and had about a little over a week of good

bowel and

> bladder function.

>

> Now, as of today, I have been in diapers for quite a while, no

control over

> my bowels and very little over my bladder. My pain doctor sent me

to a Pain

> Diagnostic Doctor/Neurologist and they did a whole bunch of tests.

I spent 3

> days and 3 hours each of those days and one day doing about 2

hours and 15

> MRIs, xrays, CT scans. I found out that even though I had OTC and

I would have

> eventually may have needed the surgery, it was not causing the

bladder and

> bowel problems. my herniated disks at C-3 throughC-6 are the cause.

>

> My concern is, if any of you have herniated disks in that area,

please,

> please make sure you have a Diagnostic Pain Doctor run all of

their tests on

> those disks, even if every doctor has said they are not in bad

shape (like mine

> did). Make sure you push to look at every angle before jumping

into OTC or TC

> surgery. Each doctor have their specialties and each one of them

do not know

> much out of their realm of studies. That surgery is a very serious

surgery

> and it seems like the new thing and when we are hurting and at the

age of 38

> dealing with diapers and bowel accident in the middle of church,

we want

> answers and we want a fix...and now. I am by no means saying that

any of these

> doctors are doing unnecessary surgeries but when all the fingers

point to one

> thing then we assume that is the problem without getting second

opinions or

> seeing the doctors who deal with our nerves and nerve roots. I had

scoliosis on

> top of everything and so because of that I still needed the OTC

surgery, but

> not right now.

>

>