Re: Fed up

[Guest guest]

Hi Cyndy

Unfortunately once your spinal cord has been interfered with (either from

the original tether or surgically) it is never back to normal. The nerves

will continue to send pain signals, the pain signals will be distorted, and

even though nothing shows up on the MRI, you will continue to have symptoms

Unless the NSG can see that there is a blockage in the CS fluid circulating

around the cord, or if there are adhesions or a particular point of

tethering, there is literally nothing else that the surgery can do for

you. Going in again will only make it worse and you will probably end up

worse off.

Believe me, I went back to my NSG so many times saying " i'm sure I am

retethered " . He said " no you are not, it is just post-op settling " and lo

and behold about 5 years post-op I felt better from the surgery. I still

get massive flare ups, I still get horrendous pain episodes and I am 9

YEARS post op, not 7-9 months.

I regret that the symptoms are with you for life and it is a matter of

managing them, and doing things to try to avoid exacerbating them. Harsh

but true

Regards

Nina

www.btinternet.com/~tetheredcordresources

--On 08 December 2010 22:16 +1030 Cyndy

wrote:

>

>

>

>

> Hi everyone,

>

> I have sat here reading how various people in this forum have been treated

> by their NS and various medical people and I thought how terrible it would

> be to have your pain brushed aside and basically not being believed when

> you

> voiced the problems you were having.

>

> Well now I know how that feels.

>

> I had a repeat MRI following my surgery in May. I have been experiencing

> pain, numbness and tingling in my legs and feet (worse on the

>

> left side). NS didn't think anything major going on but didn 't want to

> not

> take it seriously. I had the MRI and I could clearly see my spinal cord

> free flowing, and when I asked NS why I was experiencing these symptoms

> when

> MRI didn't show anything. His response was that he didn't need

>

> to do anything else surgically and what I am experiencing could be what I

> am

> left with or that I needed to work (exercise) my legs. When I told him I

> could only walk for a short period of time, his response was at least I

> was

> able to walk. He told me that he would see me in 6 months unless I hit a

> wall which I invariably do?

>

> I don't know, you get told to monitor any changes in your symptoms and

> when

> you let them know, they don't want to know at all. they make you feel

> like a

> whinger.

>

> Sorry, just needed to vent.

>

> Cyndy

>

>