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Old 02-02-2009, 10:31 AM   #1
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Back Pain and living life

I have DDD, two discectomies on L5-S1 and am left with what doctors are calling permanent nerve damage.

My back is very unstable and stiff. I can deal with this pain though. It is not contant and doesn't keep me from doing daily things. The sciatic pain is something different though. I am not able to sit at my desk for more than 20 minutes, drive any distance in a car, walk long distances.....without my nerves flaring up BIG TIME. I end up being in tons of pain that no pain meds will touch.

My life is being affected BIG TIME. I can no longer work. I can barely keep up with my two small children (2 and 4). By 5pm, the pain is very hard to control even with pain meds. Even on the pain meds, i still can not sit for long at all. I cannot go out to eat at dinner time. I cannot have a date night with my husband. I cannot take my kids to Disney....all without being in so much pain. I am on Nuerontin, Vicodin, and Opana ER (LA pain med).

I have read so many thread on this back board about people still being able to work, thanks to their meds. Am I not being properly medicated? I know I have a bad back and I have dealing with this (through the help of a psycologist). But my quality of life is barely even functioning. Yes, I can walk and am thankful for that. But a trip to the grocery store is enough to get me to tears. Is this what I should expect for the rest of my life?

Oh, a fusion is not an option for me. It will not help heal the nerves. I probably will need one at some point as my discs are degenerating, but for now they don't want to fuse me. (All six surgeons I saw agreed to this).

SOrry this is so rambled. My two year old is trying to type with me Basically I just want to know if those with a similar back injury are getting any more pain relief than I am getting.

Thanks
10sox (who is so very tired of being in pain)

 
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Old 02-02-2009, 01:00 PM   #2
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Re: Back Pain and living life

I dont have anything great to tell you but I do read so much good stuff about "lyrica".....may look into asking about it....I have a personal friend who just has a new life because of it....not to mention several on here.

Good luck,

Devon

 
Old 02-02-2009, 04:56 PM   #3
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Re: Back Pain and living life

Devon-
Thanks for responding, but I already tried Lyrica. It did nothing for my pain and made me VERY sleepy.

10sox

 
Old 02-02-2009, 05:50 PM   #4
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Re: Back Pain and living life

Have you looked into the X-Stop procedure. You can look it up on-line and even watch a video of the procedure. If your sciatica is the result of a pinched nerve, this might help. It is a minimally invasive surgery with limited down time. I had the procedure on Jan. 5 and the sciatica pain was relieved immediately. I still have some back pain, but the sciatica pain is gone. Good luck.

 
Old 02-02-2009, 08:28 PM   #5
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Re: Back Pain and living life

If your spine is unstable why would they not consider a fusion?
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Old 02-02-2009, 09:44 PM   #6
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Re: Back Pain and living life

What kind of dosage are you taking with Neurontin. I had to get up to 2100 mg to get sciatic pain relief. Narcotics don't address nerve pain and are a waste of time. (Just my opinion). Neurontin can give good pain relief but the dosage has to be correct.
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Old 02-03-2009, 11:37 AM   #7
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Re: Back Pain and living life

Georgie- Myelogram and MRI's show now compression.

SpineAZ- First, all the doctors I saw said I am too young for a fusion (35). They said it will weaken other levels of my back and cause me more problems in the future. Second, I have nerve damage. The fusion would stabilize my back (but cause more problems later on) but it won't do a thing to heal my nerves.

Pooby- I was on 2400mg of Neurontin for three months. It really did not do much but made me pretty tired. I am now down to just 1200mg at nighttime to help me sleep.

I saw my PM doctor today and he is going to give me another epidural injection but I have to wait a month due to scheduling conflicts (both me and dr). He also told me to take 2 of my hydrocodones at once when my flare-ups get too bad.

Thanks for all your suggestions. If anyone knows how to heal damaged nerves.....PLEASE let me know!!!!

Thanks,
10sox

 
Old 02-03-2009, 12:35 PM   #8
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Re: Back Pain and living life

`hi it seems like we have similar problems although my nerve spine damage was done by surgery having a disc removed,so would appreciate it if anyone gives you any advice i would be gratefull,have been told that nobody would want to operate i am on few different pills with not much help of all ops i have had ie kidney transplant,knee replacement hip done 4times and acetabular revised . as i was informed small op on back
10yrs ago turned out my most nightmare they said it would take 2yrs for the nerve to heal itself,8yrs down the line worse now then 10 yrs ago. any help or advice you get would be appreciated thanks

 
Old 02-03-2009, 02:11 PM   #9
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Re: Back Pain and living life

Jackie-
You confirmed my worst nightmare...that my nerves are only going to get worse. If one more person tells me that people with back injuries, usually get better after a few years...I am going to scream! They are usually referring to people with a herniated disc. NOT NERVE DAMAGE!

However, if anyone has any information out there about how to heal nerves, I would forever be grateful. From what my doctors are telling me, there really isn't much hope. Never thought in a gazillion years that I would be where I am today. Four short years ago I never had one ounce of back hurt. Then BAMMMMM, my discs seemed to crumble overnight.

10sox

 
Old 02-03-2009, 04:33 PM   #10
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Re: Back Pain and living life

hiya 10sox....

You stated that the docs are telling you that you have PERMANENT nerve damage.....well, if thats the case, then it is PERMANENT....meaning, there is nothing MORE they CAN do. As far as the meds you are taking.....you are on narcotics and neuontin. The neurontin is for nerve pain and if thats not working perhaps you need to try another nerve pain med. Personally, I take lyrica and it took a few weeks to get in my system good. It works for me. I suffered from S1 radiculopathy after my fusion surgery so I know what sciatic pain feels like. My acute case of it was severe enough to land me back into the hospital. I will tell you as I was told in the hospital, no narcotic pain med will help nerve pain.

You said you have DDD and they wont do surgery? Even with your disc crumbled? The docs said it will cause a domino effect? Well, I am 47 and that could happen as well. I dont understand why they would not do surgery if your spine was as unstable as you said? Maybe you need another doctor's opinion? I certainly would....

LYNN

 
Old 02-03-2009, 07:02 PM   #11
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Re: Back Pain and living life

I am having the same issue - nerve pain in my lower right leg. I have found that any bending makes it worse so I try to always use the grabber. Surprisingly, icing by back - not where the pain is in the leg lessens the nerve pain. In my case, walking also improves it and just standing in the pool. I am taking Amitryptyline at bedtime. That helps. I cannot take Neurontin because
I had a bad reaction to it. It is slowly improving as long as I don't do something to aggravate it which is very hard.

 
Old 02-03-2009, 07:53 PM   #12
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Re: Back Pain and living life

I still intrigued that they won't consider a fusion. I had an L4-S1 fusion 16 years ago in my 20's. It alleviated much of my pain (the nerves were no longer impinged) and with good body mechanics I've been doing well ever since. This was the only way to relieve some of the impingement and nerve damage/pain along with the severe instability of my lumbar spine.
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Old 02-04-2009, 09:10 AM   #13
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Re: Back Pain and living life

10sox, I would definitely get another opinion. Go to a spine specialist in a different group, preferably one who has done a fellowship.

I've had 2 fusion surgeries, which both helped immensely with my pain. But pain-free was never the goal, and even though I'm much better off, I'll never work again. You might want to look into applying for disability. I'm sorry. I know that's not what you want to hear. But if this is permanent and there's nothing that can relieve your pain sufficiently so you can work again, you should apply before it's too late. If you let too much time pass, you won't qualify. You have to have worked a certain amount in the last 10 years to qualify. I was just awarded disability a couple of weeks ago. It's a long process! If you do this, you'll want your doctor's support, so ask questions during your appts like, "do you think I'll be able to get this under control enough to work?" If they say no, ask them to document that for you. My doctor was right beside me the whole way and documented well for me at every appt. At your age, you'll need to prove that you aren't able to do ANY job full time, not just your previous job. Be prepared for a battle. Social Security is designed to discourage you, and you WILL be turned down, probably twice, before you get to go before a judge for a hearing and be approved. But if that's where you are, you've paid into the system for this very reason and should apply.

I'm sorry it's come to this for you. I wish you the best!

Emily

 
Old 02-04-2009, 09:29 AM   #14
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Re: Back Pain and living life

Thanks everyone for all your advice. IT means a lot to me to talk to all of you who understand the pain.

I have seen SIX back surgeons (from three different practices) and they all agree...no fusion. I do have DDD, but my discs are not to the point where I need a fusion. My L5-S1 has herniated 2x, and I am told if it goes again, then I will need the fusion.

Again, the reason for my pain is nerve damage. Even if they stabilize my back with the fusion, they are only giving me a 50% chance it will do anything for the nerve damage. Their thinking is that once the back is stablized, there will be less stress on the nerves and maybe that will reduce my pain some..but not all, if any. So for now, all SIX have said they would not do a fusion on me. Frankly, it's not something I really want anyway since I have a 2 and 4 year old at home and my family is 1500 miles away!

I am in the process of filing for Disability. My doctors have encouraged me to do so. I have been told I will automatically get denied the first two times and then I will be able to plead my case the 3rd time around. I do hope that one day I wil be able to work but for now it's not looking good and I need to apply before I lose all my credits.

Oh..I almost forgot. I was on Lyrica for over 3 months....a very high dose and it made me so sleepy that I would fall asleep on the couch while watching my kids! It did nothing for my pain either.

Thansks again! I feel like I have tried just about everything and now am just left trying to control my pain the best I can. It reallly stinks.

Last edited by 10sox; 02-04-2009 at 09:32 AM.

 
Old 02-04-2009, 02:41 PM   #15
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Re: Back Pain and living life

There's a disability section of healthboards. If you any questions while you're filing and waiting, there are lots of very helpful folks over there.

Blessings,
Emily

 
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