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Old 10-11-2008, 10:30 PM   #1
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Latest Developments

I figured it would be easier to follow the latest if I started a new thread.

I had an EMG and suprisingly the EMG was not that painful. I was worried about it for no reason. I have been thru so much with 4 spinal surgeries that this was nothing in the scheme of tests I have been thru. In fact, I have been more sore from the positions he had me lay in on the table to test the different areas.

On Tuesday afternoon, I have an appt with my surgeon to find out his game plan but from our brief conversation on the phone it looks like I will be having another surgery. I have a new level in back with problems and two levels that are showing chronic nerve problems. The question will be whether or not the chronic nerve problems can be reversed or not.

The surgery I had last November caused me to go from short acting pain medication to long acting and I am on a ton of meds right now just to live my life which does not involve alot of activity. I rarely leave the house, I don't bend at all, I don't drive, and I can barely do any housework. So I have to consider surgery because this is not living but at the same time, I don't want to end up worse. If anyone can understand this, I know you can understand it. You live with cp, you know it is not fun but at this same point I am scared of being worse off.

So if you don't mind, pray for me while I sort this all out.

 
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Old 10-12-2008, 07:13 AM   #2
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Re: Latest Developments

Hey Pepper,
I will definitely keep you in my prayers. It is so hard to sort out what avenues to pursue to obtain pain relief. And extremely hard in your case as you have been through so much. Hang in there my friend. ((((((Pepper)))))))
You asked in one of your posts about me.

Basically I'm still exactly where I was a year ago. Nothing seems to work but the meds (I'm on Vicoden now). Although to be fair I've only had 2 acupunctures with my third visit tomorrow.
Take care my DDP friend. The good news is that it is sunny and warm.....my back and legs always hurt worse in the wet and cold!

Deb

Last edited by Mod08; 10-12-2008 at 09:09 AM.

 
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Old 10-12-2008, 03:05 PM   #3
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Re: Latest Developments

In your other post, you said you have chronic nerve problems. This means you have had it a long time. Acute would be something they think occurred more recently.

Do the doctors think the nerve problems are from impingement of the nerves? I would hate for you to have more surgery only to find out that you have permanent nerve damage (as I do) that cannot be fixed with more surgery (other than maybe a spinal cord stimulator, etc.).

I've had multiple surgeries and my back is now "fixed", but my permanent nerve damage continues and I will always have it. It isn't being currently triggered by any spinal condition. My nerves are just shot, frankly. My next step is the SCS. However, my MRI's, EMG's, etc., don't show any other back issues that could be implicated.

I understand about the current lack of abilities you are dealing with. My nerves burn 24/7, some days I can tolerate it, others I hold my breath on and off all day because the pain is so bad. I am on some major medication to help keep the pain down, along with muscle relaxers around the clock. But really, any movement, whether it is walking, showering, light housework, etc., causes flares. The only "housework" I can do is just what I can find to do from a standing straight up position, such as wiping down the kitchen countertops. I have "grippers" in almost every room. If I bend, lift or twist I am greeted by major muscle spasms. Then the next day and several days after that, I suffer big time.

I would have more surgery if my spine were unstable or if I had a new severe herniation, etc. But it's been made very clear to me that I am now in medical management of permanently damaged nerves and I'm working on coming to an acceptance of that.

Good luck with your new journey.

 
Old 10-12-2008, 03:25 PM   #4
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Re: Latest Developments

Pepper,

I'll be keeping you in my thoughts and prayers. I know the thought of another surgery has to be scary.

Tigg.

 
Old 10-12-2008, 05:53 PM   #5
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Re: Latest Developments

" I rarely leave the house, I don't bend at all, I don't drive, and I can barely do any housework. So I have to consider surgery because this is not living but at the same time, I don't want to end up worse."
God, this describes my situation EXACTLY, and the worst part is being told NO to surgery, and more PT...I TOTALLY understand. No wonder Im so depressed. Im in the same boat... and now being told I have to drive 4 hours every three weeks to pick up my script and then another 4 hours the opposite way to get my meds. Im ready to hang it up. Im just exhausted and so very frustrated. Very~
Hang in there Pep~
xoxoxox,
IZZY'SMOM

Last edited by IZZY'SMOM; 10-12-2008 at 05:55 PM.

 
Old 10-12-2008, 10:13 PM   #6
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Re: Latest Developments

It's good to hear from your Pepper....Sorry to hear about things, although I do hope that surgery is a realistic avenue for solving some of your chronic pain. Hang in there as best you can, and please know that we're all thinking of you.

Take care, and God bless.

Ex

 
Old 10-13-2008, 05:26 AM   #7
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Re: Latest Developments

Pepper, i truely hope you work it all out in your mind. you have been through so much & I mean mentally to. You know getting your hopes up,then to be told this is your life, now another surgery, lots of ups & downs. I know that you will choose whats best, in the mean time know that I am praying for you. As always, Sammy

 
Old 10-13-2008, 12:30 PM   #8
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Re: Latest Developments

Pepper, Sorry to hear that you are facing another surgery. I'll pray that you and your doctor make the right decision. I know you don't want to end up worse but just try to be optimistic and think what it would be like if another surgery would help.

I go for my second PT Tuesday and I'm trying to be optimistic that it will help because it is a lot of pain and work. You never know.

I wish luck and I'll pray for all of us.

Darby

 
Old 10-14-2008, 03:53 PM   #9
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Re: Latest Developments

Lilypoo is right.
In my case they can't do much for my pain either; when nerves are permanently damaged, no cure for this. And more surgery can cause more nerve damages and bigger areas may be involved too. Scar tissue after each surgery (any surgery) may form and press on a nerves around.

Surgeries in our cases are usually for big herniations, unstable hardware, spine instability in upper/lower levels, but for the nerve related pain is no cure so far.
I am not sure what each case holds for any of us, but at least this is my case. Many other problems, but this is what I was told by my PM and a surgeon regarding my case.

Diet, dear, I wish you the best and would hate to think that you may need another surgery. Especially when we go for this type surgeries we always hope for the best, but nobody can tell us exactly what to expect...
Well, lets see what is going on and wait for what your surgeon has to say. And pray...
All the best to you!

 
Old 10-14-2008, 06:08 PM   #10
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Re: Latest Developments

Quote:
Originally Posted by Moldova View Post
when nerves are permanently damaged, no cure for this. And more surgery can cause more nerve damages and bigger areas may be involved too. Scar tissue after each surgery (any surgery) may form and press on a nerves around.
Yes, this is correct. It's a big part of my problem, I am sad to say. When the nerves start to "fire" signals, the brain can perceive it as all sorts of stuff. For example, my Doc is treating several Middle East vets who have lost limbs. He said that in some of those cases, they have bad nerve damage at the point of sever, and even though they have lost the limb (say a leg), they have extreme leg pain. This is because the nerves are firing signals to the brain saying so. Pretty amazing, I think.

BTW, it's good to hear from you Moldova. I have been wondering about you and hope all is well.

Regards,

Ex

 
Old 10-15-2008, 05:27 AM   #11
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Re: Latest Developments

Diet, so sorry that all of this is still continuing...nerves being what they are, it is almost impossible to know what will happen with further surgery...I do understand where you are right now... I would have done a surgery in a heartbeat..knowing where I was, and where I possibly could be in the future...it's all a chance..and the chance is to hopefully be painfree...or in less pain. I do worry for you...just check it out really well with your doctors...as we all have to when considering further surgery...
I often think of your and our other friends here...worrying about you all...and what the future will bring.. Whatever your choice...I hope the result is a painfree end.

Leslie

 
Old 10-15-2008, 09:50 PM   #12
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Re: Latest Developments

The news was not great. I met with two surgeons who are working on my case jointly and they are recommending another surgery. Right now I am trying to figure out what to do and make the best decision for my family and myself. At this point, I know:

*I suffer everyday with pain and require high doses of narcotics.
*I am basically house bound.
*Unable to work, unable to attend church service, unable to grocery shop (if I do, I pay for days)
*No surgery is a promise to get better.
*I could get better. The question is how much?
*At this time, I don't have permament nerve damage to the best of their knowledge.
*I have birth defects and my nerve roots are not normal. I have two extra vertebraes.
*If I move ahead with this surgery and I don't get better, I am done with the surgical approach.

So if I am silent, please know that you are still in my prayers and I am thinking about you. This is a hard decision for me and I am simply sorting things out. I want more than anything to get better and in my heart I KNOW I will never be 100% but would 50%, 40%, 30% be better than where I am now?

 
Old 10-16-2008, 08:37 AM   #13
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Re: Latest Developments

Quote:
Originally Posted by 123dietdrpepper View Post

This is a hard decision for me and I am simply sorting things out.
Just wanted to let you know Pepper that I'm thinking about you. I will pray for you and good luck with whatever decision you make.

Take care,

Ex

 
Old 10-19-2008, 04:54 PM   #14
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Re: Latest Developments

Pepper,
As always, you are in my prayers. Please let us know how you are. Take care!

Deb

 
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