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Old 11-27-2003, 04:04 AM   #1
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Ladyintheglen HB User
Question New Here..L5/S1 nerve damage

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Hello and Happy Thanksgiving to all!
I just found this site yesterday and am greatful to all of you for being here. Background for me is: I suffered a back injury about 9 years ago and as a result I have permanent nerve root damage at L5/S1. I also have the lining of the spine ballooned out in my upper back. (First time Dr. saw it he thought I had lung cancer because the balloon sits on top of my right lung.) L5/S1 causes sciatica and and my back will swell up if I over do anything and sometimes it swells up just because it wants to. I am so sick and tired of being in pain. I have had no pain management at all. Dr. gave me script for hydrocodone for severe pain but it makes me nauseus and still only takes the edge off of the pain. I can't see getting sick when the med doesn't really do alot to help. My hubby wants me to see about a nerve block or steriod injections that a PT told him about. I am petrified of having more damage done to the nerves and more pain! Any advice or experiences would be unbelievably appreciated. Thank you in advance.


Ladyintheglen

 
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Old 11-27-2003, 07:55 AM   #2
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acme HB User
Re: New Here..L5/S1 nerve damage

Go to a Major University Or Major Hospital that has Nero's that treat special spine problems! Have your Doc Call or write someplace like the Mayo Clinic Or Cleveland Clinic! You need a 2nd or third opinion! I had Fusion surgery at the Cleveland Clinic.....They have entire depts. for specific/ unusual/ difficult spinal problems! Ive been pain free & very active since my surgery 2 yrs. & 2 mos. ago! Don't give up.......Research!! JMO Good Luck!
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Old 11-27-2003, 08:49 AM   #3
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Ladyintheglen HB User
Re: New Here..L5/S1 nerve damage

Thank you for the quick response. I went to a neurologist shortly after my injury and he told me I had to just live with the pain. So that's what I've been doing but it's hard. I want to do things but I also know that if I do I'll be in excruciating pain. The pain almost makes me want to stop doing anything enjoyable such as having my grandbabies overnight, visiting family, going on vacation,etc. I mean what do I do when the neurologist says "live with it....what's wrong with pain?" His exact words.

 
Old 11-27-2003, 09:00 AM   #4
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acme HB User
Re: New Here..L5/S1 nerve damage

Ladyintheglen,
That would NOT be acceptable to me! There are many-Many talented Docs with open minds ! Ask your Reg. Doc to refere you to a different Neuro! You need to take control!
I skipped the Vacations , Visiting overnight,........Hell........I had a hard time getting my pants on in the morning! Don't take "Live with it " till you've researched-asked all you can-You need more information! Don't you dare give up!!
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Old 11-27-2003, 09:09 AM   #5
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Ladyintheglen HB User
Re: New Here..L5/S1 nerve damage

Acme,
Thanx again. I looking right now (online) for something in my area.

 
Old 11-27-2003, 04:48 PM   #6
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out2lunch HB User
Re: New Here..L5/S1 nerve damage

Ladyintheglen, I agree with Acme! You definitely have to keep pushing til you get the answers you need and that satisfy you!!
I'd definitely stay away from injections though, when you already have nerve problems!! I had a pain management dr give me botox injections once, and he hit a nerve!!! Oh my god!! The pain I went through from that!!!
I do have a question for you though!!! How did you come to know that you have PERMANENT NERVE DAMAGE??
I've been told that I have sciatica, which I knew 'cause I have all the radiating symptoms for it! It's been 7yrs now and my drs don't seem all that concerned about it!! I on the other hand, am very concerned about it becoming permanent nerve damage, and believe that it probably already is!! I have herniated discs in the cervical and lumbar discs, and therefore have constant pain in the hips and legs, along with the numbness/tingly feet! My hands go numb often too but I don't really have pain in my arms!
I was wondering if there's a test, other then an EMG to find out for sure?? I've had 2 EMGs (one on the arm and the other on the leg) and they both came back fine! But, then I was told that unless they hit every nerve in my body, it's so easy to miss the effected nerve!!
I just keep trying to push for answers 'cause I'm not satisfied with "just living with it" either!! I've just run out of ideas as to where to go from here!
Take care!!

 
Old 11-27-2003, 11:42 PM   #7
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Re: New Here..L5/S1 nerve damage

[SIZE=1]ladyintheglen-they are so right! Don't let a doctor (who probably hasn't had any type of pain like this) tell you to just live with it and what is wrong with pain! I know what you mean about not wanting to do your normal enjoyable things...believe me I know. But, you have got to have faith that out there is your answer and you will find it. I, too, love these message boards. Everyone is so very kind and understanding. So, keep researching and searching and take it easy on yourself. Happy Thanksgiving!

 
Old 11-28-2003, 06:27 AM   #8
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Ladyintheglen HB User
Re: New Here..L5/S1 nerve damage

out2lunch, I know that I have permanent nerve damage because I had an EMG done (it wasn't the type with needles, it was done with electrodes) and it showed the nerve damage along with an MRI. The Neuro said that it could take up to 3 years for the nerves to heal themselves and that if they didn't in that amount of time then it was permanent. Well, this is 9 years later and no change sooo....I'd call that permanent. I have problems with the entire length of my back from my injury but the worst is the L5/S1. At times that entire area will swell and look like someone put a goose egg under the skin on top of my spine. I guess I'm looking for a miracle cure which it doesn't seem there are any. I''m scared of taking drugs because I'm afraid of becoming addicted, it seems that the nerve blocks are not a good idea and the neuro also told me that there is no surgery that will help, as a matter of fact it would probably make things worse. So now I don't know what to do. I changed my profession but even just doing secretarial work is very painful, by the end of the day all I can do is crawl into bed. So, I work out of a temp service so that I get breaks in between jobs. Sorry about sounding like I'm whining but today is not a good day on the pain scale and I have to pick up a grandbaby for a visit. OUCH
Ladyintheglen

 
Old 11-28-2003, 06:36 AM   #9
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Ladyintheglen HB User
Re: New Here..L5/S1 nerve damage

pomcoach, thank you for the encouragement. I'm still trying to research things but it's looking rather bleak. I'm feeling like a crybaby today so I'll end this one quickly.
Again, thank you for the encouragement.
Ladyintheglen

 
Old 11-28-2003, 07:22 AM   #10
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out2lunch HB User
Re: New Here..L5/S1 nerve damage

Lady, please don't feel like a crybaby!! We've all been there, and I'm right there with you now!! You and I sound so much alike, though I don't have grandbabies to pick up!! Just a 6yr old little girl that's never had mommy able to pick her up!! Thinking of her, hurts me the most 'cause I always wanted a little girl (have 2 boys) and couldn't wait to braid her hair, teach her how to skip etc. It hurts like hell to sit and braid her hair, and she had to teach herself how to skip!!
This CP robs us of alot of things, including all the pleasures we had before!!
I used to love going to Walmart and just looking around with my kids! Now it kills me to spend 15mins in any store!!!
Please don't consider yourself whining 'cause we're all here to let this stuff out before we burst or end up in the "pit"!! You won't find anyone else who will listen as intently and truly understand, then here!!! We all give the support and understanding, but we also need it at times too! Feel free to "vent" all you want 'cause you know what?? We're all here for you!! Take care!

 
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