Re: Surgery in October -

[Guest guest]

, I'm due to have my first surgery next spring (UK waiting lists

at their best here) and last week I saw my local NS (not the one

doing the surgery) and had a reality check. This surgery could stop

deterioration but suddenly I realised that this may be as good as it

gets. I started to panic and thought my dreams had disappeared.

Thanks to good friends and good advice, I now know my dreams are

still here and achievable.

More optimism is required, I'm 11 years older than you, married with

2 children but I refuse to let this get to me. I'm still planning to

go to college in 3 years time but now I need to make sure that I

inform the college of my pain and mobility issues. My life is not

going to end because of this bloody TC!!! And nor will yours.

Get the surgery out of the way and see what happens after that. Don't

predict the future because I guarantee you won't get it all correct.

I wish you luck next month and hopefully, no leaks or problems.

x

Carey

Hove UK

> > Good luck with your surgery! Do you have to travel far to this

> hospital?

> >

[Guest guest]

I agree with most of what you are saying, and surgery was also sold

to me on the grounds that it would stop deterioration; but, for a

large portion of the people in this group surgery not only did not

stop further deterioration but cause new undesireable symptoms as

well.

Take me for example, I had surgery just 2 years ago and it left my

right leg and foot weaker and with reduced sensation. I was able to

cope with that and was happy that I would be stable for the long

term despite the new symptoms.

Then after just 1.5 years I had new symptoms appear, which were

worse that before and now I am having a second surgery to remove the

scar tissue. A procedure, which will inevitably cause more scar

tissue.

Having surgery for the first time may open a can of worms that can't

be undone.

> > > Good luck with your surgery! Do you have to travel far to

this

> > hospital?

> > >

[Guest guest]

I think it's important to note that there are many many success

stories and people in need of support groups like this one are

generally here because they are awaiting surgery or they have had

surgery that has not resolved their issues.

Of course there are members here who have successful surgeries and

I'm grateful to them for balancing up the equation.

Believe me, I'm going into surgery with my eyes wide open but I take

a combination of 17 tablets a day just to function. I have patchy

numbness and my bladder and bowels are now classified as 'neurogenic.

A few months ago, surgery wasn't worth the risk - it is now.

After reading your posts, I know how much you are struggling with the

thought of a second surgery and I feel for you. Like me, you're going

to have to put your trust in your surgeon (easier said than done I

know) and I really really hope you post back after surgery with news

that it was worth it.

My stock phrase at the moment is 'Ever met an unhappy optimist?'

Carey (Terrified of surgery but what are the other options?)

Hove UK

> > > > Good luck with your surgery! Do you have to travel far to

> this

> > > hospital?

> > > >

[Guest guest]

I appreciate the feedback and ever since I joined this forum I have

been quite the poster. I guess I remember how much I had to build

myself up before I had surgery number one and now a second surgery?

As far as pills go I have been experimenting with several and have

basically the same symptoms that you have including the neurogenic

bladder(I have dysenerga between my sphincter and bladder). After

being on so many different meds I have found the best combination of

pills to be.

Neurontin(1200mg per day divided into two 600 mg pills morning and

night)Nortripltaline(60mg per day, 30 morning 30 night).

Ultram(200 mg per day 100morning 100 night)

It may seem like a lot but these medicines in combination are lower

doses than any single one of the drugs that I have taken stand-

alone. For example I use to be on 3600mg neurontin per day and felt

like a walking zombie all my senses were dulled and sexual function

was compromised. Although I have been offered narcs I feel it is

unecessary. Still I went through 5 months of hell discovering this

pharmalogical regiment, so if anyone is going through extreme tcs

pain I would suggest the combination to your physician.

> > > > > Good luck with your surgery! Do you have to travel far to

> > this

> > > > hospital?

> > > > >