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Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/21/2008 9:46 AM (GMT -7)   
Just heard from PD office and they will call me tomorrow for when the Mylogram will be taking place. It will be in Billings and I will have to spend the night at a hotel there. Will keep you updated on how it goes and what the results are from the test.


Hugs everyone
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/21/2008 3:51 PM (GMT -7)   
Hi Scared: I'll be praying for You to get some good news. ( we need it ) any chance You can make a mini vacation out of Your trip ? do you have a lap top
to keep us up to date ? take care: Your scared pain buddy from N.J.
Tom Lasko


Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/21/2008 5:02 PM (GMT -7)   
Oh ya hun...got my laptop and will have it with me. Hubby will have to go back to work the next day so it'll be the all day affair and then spend the night and boom we are headed back home.

I should know the results in about two weeks so cross them fingers that they find something
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/21/2008 7:42 PM (GMT -7)   
My friend: Please trust that all my fingers are crossed and my prayers will be with You. I look forward to You changing "Scared for Life" to Happy to be pain free !! very soon. I'll be thinking about you, take care Tom
Tom Lasko


kara487
Veteran Member


Date Joined Mar 2008
Total Posts : 637
   Posted 7/22/2008 3:51 AM (GMT -7)   
Good Luck on your myelogram . I will be praying for you. I had one in feburary and it was not fun at all. I hope you have a better experience than I did.

Red_34
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Date Joined Apr 2004
Total Posts : 23413
   Posted 7/22/2008 5:01 AM (GMT -7)   
Good luck and let us know how it went when you come back.
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Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/22/2008 8:14 AM (GMT -7)   
I thank you all for your Good lucks and all the kind words. Waiting by the phone today for the nurse to call on when this dreaded Mylogram is going to take place uggggggg. I hate even thinking of going through this once again! I know how I felt the last time when they decided to do a Mylogram and that pain is not something that I am truly looking forward to at all!

I am crossing my fingers that it will show something there to explain the horrible pain in my back and my legs, so that maybe they can fix it finally and I can be rid of some of this pain. One thing that I know is that I can never expect my pain to completely go away, I know this and have come to terms with that fact. But to be in this much pain and truly not want to do anything to further heighten it is driving me nuts!

Hubby looked at that microsurgery website last night.....its down in FL and he tells me that maybe if doc finds nothing to cause my pain that we might try this place and see what they say. I hold no hopes that they will actually find something or that anyone can help me....been going through this too long to actually feel like there is something around the corner to help ya know? But somewhere in the back of my mind I am praying there will be a solution to my ails and that I shall find something that works to decrease my pain levels.
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 7/22/2008 9:36 AM (GMT -7)   
Scared I have visited that site in Florida, I am somewhat leery of that place. I will look at it again and then get back with you on what caused a red flag to go up in my mind. Susie


Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/22/2008 10:11 AM (GMT -7)   
Yeah I too am a little leery of a site that says it can relieve all pain no matter if you have had surgery or not. Something in the back of my mind tells me that a red flag is about to wave madly about me.
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/22/2008 10:31 AM (GMT -7)   
Scarred,
I don't even have to go to the site to know there are red flags. If it says what you say it does (or even anything close), that it can relieve all pain....hey, don't you think it would be all over the news? And that others would be doing the same thing? One thing that's the test of a procedure as far as legitimate research is whether a study can be replicated by others. And if it could be, then others would do it.

We all want a cure and are so drawn in by things which are, in reality, too good to be true. People who market so many treatments and devices know how vulnerable we are. I hate to say it...well, I don't have to. You already see the flags waving.

I wish we all had better news!

PaLady

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/22/2008 10:54 AM (GMT -7)   
I know PA....something in the back of my mind tells me its too good to be true. I guess I am so bent on a cure for this pain that all of us experience that I am looking for something that is not there. They say that they have done 7000 surgeries and that 80% of them are success rates. But what about the other 20%? Where are they in this maze of control?

*Sigh* I guess I am just going to have to realize that not all sites are as we wish them to be. I see the red flags waving high hun!
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/22/2008 11:02 AM (GMT -7)   
My neurosurgeon gave me an 80-90% chance that the minimally invasive fusion would relieve my pain. I thought - wow - that's pretty good odds. Funny, but an older neurosurgeon from a small town I had first consulted gave me a 40% chance, and recommended I not haev surgery unless something became life threatening. Guess who was right? Guess who I believed?

You've had even more failed surgeries than I. I don't ever want to give up hope that something around the corner may develop....but I suspect it will more likely be a new medicaiton that has less side effects because it works in a different way, and not some surgical procedure. Because we've already had our spines "played" with, right?

I think one of these days I'm going to start a thread called "the struggle" - or something like that. And it will be about the inner struggle those of us who have been through a list of procedures and such all have accepting that the pain isn't going to go away. That there is no cure. And that the best we can do is manage it. And that fighting those facts may, in fact, add more stress. Does this make sense? Not something I like to say, but I think it's likely true. sad

I think hot tub parties may help more than most surgeries.

PaLady

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/22/2008 11:39 AM (GMT -7)   
Your right PA...since we have had our spines "Played With" we are what the neuro's call a failure which to me I hate being labeled anything! It frustrates me to no end why anyone would say your a failure in anything and makes me want to fight more for my basic right to have no pain or little that I feel is right. Its hard at times to think of myself in pain and realize that this is the best I'm going to get for awhile, but as I am now 44 years old and "Broken" its difficult at best to realize that I am never going to feel the great things that I want to.

Life goes on around me as I sit in my house feeling so dejected and horrible about being a so called "Shut in" and it seems to add to the stress of my life. I did not ask to be in pain, nor did I wake up one day and think "Gee I wish I was in pain the rest of my life!" But I realize now that there is no real cure for us CPers and we just have to struggle with our day to day lives the best we can and hope that someday they will figure out gee that person needs a better life.

As I watch those with Cancer and things more horrible then I can ever imagine to have....it tears me up inside. Hubby just bought me a four-wheeler this past spring...and yet it sits in the driveway waiting for the day that I can say Lets go for a ride!
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/22/2008 11:49 AM (GMT -7)   
Scarred,
I think it's important to make the distinction that WE'RE not failures, but the surgery failed to do what it was supposed to.

I know this sounds strange, but I don't think we have a "right" to no pain. We're human, and as humans we're going to experience pain. What I think we should (but yet don't, at least not in this country) have a right to is good health care for all, and the best pain management that's available to help us get whatever quality of life back that we can. But doctors aren't god and can't give out miracles, although we wish they could (and some of them play god on tv!! LOL). Maybe it's good to look around and see that life is full of various experiences - some of them joyful, some painful, and lots in between. I don't know I'm getting a little philosophical here mainly because it helps me try to find perspective. Because I don't want pain any more than you do, and I want some semblance of a life back, but in my mind know I won't get it - at least not what I wanted, or thought it would be. So now I've got to keep grieving (like peeling an onion), and trying to find a new vision for what is possible that incorporates what is no longer possible.

And in the meantime go to lots and lots of virtual parties with all of you!

PaLady

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/22/2008 12:16 PM (GMT -7)   
Exactly.....I did not mean that our god given right is to be without pain by no means. But this health care we all are receiving is insane and needs to be really thought out as managing our pain and concerns the best we can. I agree that docs are not miracle workers, they make mistakes as well. Like my Pain Specialist he sees 3000 patients in his practice a year and that isn't including those who are new. He is the only PCP in a 200 mile radius and does his best to keep up with all of us that go to see him. There used to be four docs with him but two moved back east where they could make more money then the lowest state for wages in the nation...and one....well, let me tell you this story.

Ok when Dr Bilbo decided to move away she referred me to Dr Oakley who was the top leading Pain Specialist in MT for the Neurostimulator. I was two weeks from seeing him when he decided to fly a plane over UT and crashed killing himself. Well they called me to refer me to another doc and my last chance for a stimulator passed away with him.

Dr Davis since has left the service and I am left with Dr Shaubacher who has too many patients already and asks me every time I go to see him to restate my entire case to him each time. Pain docs are sometimes totally overwhelmed with patients and cannot seem to catch up with their patients through the day.

Anyway, I am glad to being at least seeing a pain doc and that he wishes to find out what the cause is for my pain. If nothing can be found I shall be placed for a pain pump and we shall see where that leads me. All I can do is jump through hoops and that too leaves me frustrated to no end with the entire health care system. Docs are in bed with so many pharmaceutical companies that its unnerving to all of us in pain.


Here is to better days and lessen pain! :-)
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/22/2008 4:05 PM (GMT -7)   
Well, so much for hearing today as to when they are going to do this stupid Mylogram. I hate this! Waiting to hear back from you doctor office is really driving me insane!!!! I guess I can chalk this up to another day in "Paradise"
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/22/2008 4:11 PM (GMT -7)   
I know - that's so frustrating. I can understand there are snags with people connecting on the phone to do scheduling as everyone is busy, but I've had people just go for a couple of weeks after they were supposed to call with a procedure date. And then when I'd call I get chastized for not being patient, but at the same time I find out that either I had been scheduled but no one called me, or my paperwork was lost/ buried in some stack and the call never got made.

I wish they'd let us do some of this on our own. We're not children. (unless in the E.R.! LOL)

PaLady
Hang in there - beach party plans are in the works. cool

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/22/2008 5:09 PM (GMT -7)   
I know!!! Its like geez we aren't children here! I would have preferred to do this on my own but doc would rather do this in Billings so I conceded to let them handle the appt. I called them to make sure that they remembered that I'm out here hanging and waiting for this date and didn't get an answer at all today.

Oh well, maybe tomorrow I will know, or at least I hope!

I am soooo ready for a beach party! I got my suit, one piece of course, hate showing off the scars from several surgeries. I'll bring the Daquiri's
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.

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