Has anyone been stable or stabilized from surgery?

[Guest guest]

Just wondering if surgery has truly been the complete answer to

deterioration from TCS. So far I have rarely heard from anyone who

has had stable symptoms for more than three years. Has anyone truly

experienced long-term stability and by that I mean over a decade of

stabilized symptoms from having a single surgery from TCS?

Also I keep hearing from surgeons that symptomatic retethering

occurs 5-15% of the time. I always assumed that this figure meant

that 5-15% of the people who have a single surgery retether.

However, it seems that most of the people n this group have

retethered and that some have retethered over four times. How can

this figure be legitimate?

Thanks

[Guest guest]

At 07:27 PM 8/31/2004 +0000, davidbrian232000 wrote:

>Just wondering if surgery has truly been the complete answer to

>deterioration from TCS. So far I have rarely heard from anyone who

>has had stable symptoms for more than three years. Has anyone truly

>experienced long-term stability and by that I mean over a decade of

>stabilized symptoms from having a single surgery from TCS?

4 going on 5 years, still improving, still doing PT every week, still have

my fingers crossed.

[Guest guest]

I would like to say that I went the first time 13 years....and hope to do so

again...so lets try to inform and help one another...not scare the living day

lights out of us all...having the problems is bad enough...without poring salt

on the wounds so to speak...

[Guest guest]

I apologize if I offended you, I just relayed the info about arach

in the spirit, which I had received it.

6 Neurosurgeon's told me bluntly that arachnoidotis has

quote " absolutely no surgical solution. " They also told me that

arach and tcs have nearly identical symptoms, and the only way to

tell the difference between the two is to explore the dura. This is

just information that I got when I was considering a second

surgery.

I am no expert, I don't know maybe surgery can be done to correct

arach. I don't just

jetison this information out of my bum though. Every posting I do is

just

honest information I have received after having a consultation. I

am very

very sorry for being blunt and maybe coming off uncaring here. I

assure you this is not the case...again I am here pursuing

information for the personal betterment of my life, and the need to

achieve understanding that is sometimes unachievable in a MDs

office.

In the future I will be more PC, I am no medical expert.

It's hard for me, I am a new member...joined about 4-5months

ago...and unlike you seasoned folks, I am just starting to get over

the major negative impacts, which a failed TCS surgery had on my

life. So my sporatic posting has mainly come out of a primary need

to understand and investigate my condition.

At this point I have had less of a need for support and more of a

need for objective inquiries.

Over the last 3 months I went to Chicago, Boston, Miami, and New

York City, and Baltimore...saw 6 neurosurgeons....all to aquire

opinions(which were all different). That time is over and put to

rest.

I felt impassioned to discuss arach because in my case many surgeons

diagnosed me with arach...but it turns out I didn't have it but that

TCS mimiced all the symptoms.

I wasn't trying to tell people hey...if you have arach you are

doomed. From my experience it may very well be that people are

misdiagnosed with arach and the misdiagnoses in turn leads to

lifelong pain-management techniques. Again I am no MD, but wouldn't

you like to ask your neurosurgeon next time you see him?:

Can you tell me if I have arach or TCS?

What are the differences between arach and TCS?

Does arach have a potential surgical cure?

Just to know for yourself. I did and it took a load off my

shoulder, I will no longer post the answers that I received to those

questions because I think they are misconstrued as a forum member

dispatching medical advice. Still I would advise you all to ask

these questions.

How many of you wish we had the right questions before surgery

number 1...?(rhetorical question:) )

> I would like to say that I went the first time 13 years....and

hope to do so

> again...so lets try to inform and help one another...not scare the

living day

> lights out of us all...having the problems is bad enough...without

poring salt

> on the wounds so to speak...

>

>

>

[Guest guest]

I am new to this site as well. All the more reason to be careful in our

choice of words and information. After all we are here to suppport one

another...and to pass along things that have helped each other cope....not to be

diagnosticians....Every case is different, and different things work for

different

people. Let us exchange information that may help one another....not make it be

that reading a post is so upsetting that we cant sleep...which is what happened

in my case.....