NeuroTalk Support Groups - Well, it was Good while it LASTED!!

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- - Well, it was Good while it LASTED!! (https://www.neurotalk.org/scs-and-pain-pumps/139583-lasted.html)

Quote:

Originally Posted by fionab (Post 722157)

So sorry to hear you're having to go through a revision, Rae and good to see you on the board, Mark.

I've been off the forum for a while now as I'm dealing with bad spinal fluid pressure headaches/pressure. I've been referred back to my old neurosurgeon who referred me to my pain mgmt. dr. (who put in the two SCS implants) for him to do a spinal tap and see if releasing some pressure will help.

There was talk about possibly having to remove my two implants ( I said we'd fight over that one) as this only started since they were put in, but my optha-neurosurgeon suggested that if the high pressure continues to be a problem she'd rather see me get a shunt to drain off excess spinal fluid so I'd be able to keep my 2 SCS implants as she knows they help with the pain.

Right now I'm on a high dose of a diuretic but it doesn't help much. Feels like my head is gonna pop and is affecting my vision. Everyone is still scratching their heads over this one. Hoping my old neurosurgeon may have some ideas as to what's going on. So, if I don't come on here much know that I'm thinking about all of you and that it's just too painful to move around much right now.

Would appreciate your prayers :eek:

Fiona good to hear from you too..

I was only thinking about you yesterday and wondering how you were doing as you hadnt posted in a while.

NOOOOOOO dont let them take those stims out!!! after all you've been through its not an option and make sure you stick to your guns on that.

I too like Rae have heard of the shunt and Im hoping that this will be indeed the road they take to try and sort out this pressure you are suffering:hug:

Will keep praying you will be well again real soon my friend

Jackie :hug:

Quote:

Originally Posted by Jackiey (Post 722716)

New Years Eve :eek:for goodness sake, :mad: Im sure you could think of others things, like seeing your grandson;) on a day like New Years!!!

I do wonder too if in fact the sutures didnt anchor correctly for you Rae....I bet its maddening to have to go back for a revision, and so soon too....its a lesson to us all who have had ours done and also for those waiting to get their SCS ....to take it handy and no overdoing it!!!!!:rolleyes:.....

Im praying Rae that this lead is 'loose' and free and not bedded down with scar tissue so that it will be a simple procedure for you..

Take care and will keep you in my prayers!!

Jackie:hug:

Hi Rae
I am happy that 1. its not going to cost you thousands so by doing it this year you wont be any more out of pocket?
2. the revision will give you more pain relief
but like Jackie and you Rae it's hard to believe the lead has come free so soon and it would be good to know if it was the dr who did not anchor them down correctly..but dr's are the same in every country they would hardly tell us its their fault!! I am sorry that it has to be new years eve as jackie said much better things to be doing on new years eve!!

May the next last FOREVER

and ever, and ever, hallelujah, hallelujah.......

Oh, wait that is a song. Even so, Rae, your leads should be placed so they do NOT MOVE!!! Not at all.

OK, nuff said,
Soapbox speech ended,
Mark56:hug:

Quote:

Originally Posted by Mark56 (Post 722867)

I agree.

And I want you to know that during prayer meeting tonight, I prayed for you Rae! :hug: Will continue praying that this revision takes care of things for good.

More prayers here

Praying,
Mark56:hug:

I feel like a YO-YO the way my Dr's office is bouncing my revision date.
Found out today that the OR won't be open on 12-31.......
Whatever :nopity:

I swear his nurse is a basketcase..... communicating with her is like trying to eat spaghetti with a SPOON :eek:

I'm sure I can find a $2,000 dollar bill if I dig deep enuf in my left pocket :rolleyes: yeah, right. .....hmmmmm, I wonder if the 'gratuity' is included in this nice new bill I'll have to pay.......:rolleyes:

.......where is my RAINBOW PSYCHO-delic POCKET FUZZ when I need it!!!! :eek:

..........................http://dl8.glitter-graphics.net/pub/...rk0r2pofhw.gif.............. oh DEAR!
What have I done!!! I have no idea what THIS is!!!!!
........evidentally I need to do laundry!!

Both that you found THAT in your pocket and the surgery date yo-yo is running against you.

Sad,
Mark56 praying:hug:

Quote:

Originally Posted by Rrae (Post 720803)

........ok, so I take my x-rays of my lumbar in to my Pain Doc.....
and he said, "Well, no WONDER you've been having the lower back pain and muscle spasms.......one of your leads has completely migrated OUT of your dorsal column!" :eek::eek:

Joy Joy. SO now I have the wonderful privilege of getting a revision done and of course he's booked thru the end of the year, so my deductible will start all over again............@#$%*^(@!!

........................................ http://dl3.glitter-graphics.net/pub/...utapqan9n9.gif

:hug:Rae, I am so very sorry that your leads moved! The first time mine did one went all the way up my body and the other went all the way down...they still have no idea why they moved and apparently said they had never seen that before. We didn't even know that could happen and after a 4 hour long reprogramming session that was not helping, they had sent me to get the X-rays and that is how they found it. I totally understand what you are going through and I know it is frustrating and I hope that you can get the revision soon because it is rough when that happens. Take care and I will be thinking about you :hug:'sTara

How frustrating Rae

Rae you must be beside yourself after hearing your revision is being messed around......Have to say was a bit surprised if you had your revision on New Years Eve, but hey who knows what these hospitals are up to and where in the name of God do they get these imcompetent people dealing with the public(ie...ur Dr's nurse:eek:)...I had to endure months with my Dr's first secretary, she definitely was a basketcase believe me...wonder did she move to the States:confused::D

Its a disgrace that you have to put up with it though and then to have to hand over thousands of dollars to get back to where it should be.....would still be of the opinion that the Dr didnt anchor the leads enough, who knows, well they wont admit it either will they?!?!?!?

Hope your little grandson is keeping well and also your daughter, and that she isnt having too many sleepless nights;) Im sure Nana Rae is on hand if needed;)

Which is why I was talking about getting admitted to KS

You know, wanting to help you. Get them to do it for no cost, kinda like a "oops, I should have done this better!" But then that means litigation. Oh, how docs hate that word when it has to do with what they have done.

Still praying about you and this,
Mark56:hug: