It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Arachnoiditis Message Board

  • Update from Deb....

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 03-12-2008, 01:09 PM   #1
    deb53
    Senior Veteran
    (female)
     
    deb53's Avatar
     
    Join Date: Jul 2007
    Location: Richmond, Va. USA
    Posts: 1,062
    deb53 HB User
    Update from Deb....

    Hi everyone,
    I had my MRI last night and it shows no change from the last one. Still shows the nerve on the right as inflammed, irritated, damaged. So that accounts for all the pain I have on the right. Bulging discs at L4 and L5. Again, it doesn't show anything on the left to account for the same pain on the left side????? I just don't know what could be causing the pain on the left. Has anyone had this??? Do any of you have any ideas about this?? The surgeon is now out of town until next week and then he will decide where we go next.....either another neurologist or a new PM.
    Also heard from my new "onsite" nurse case manager for W/C. She will accompany me to all of my doctors appts. I told her that I did not want her in the room for my exam and that if she was to be included in my conversations with the doctor then I expected to be included in all conversations that she has with the doctor about me. She said she is to be my "advocate". I started to say "my advocate so that it benefits W/C or so that it benefits me??". WHATEVER!!!!! I haven't hired a lawyer but I have consulted with one. She is the one who said that the case manager cannot be in the room with me during the exam. She also said that no matter how nice and attentive they appear to be.....they are not your friends!!! They get big bonuses for getting patients off W/C and not approving procedures. So my feeling is that money talks and if it comes down to THEIR bonus or MY health...well, as I said money talks.
    In other news ........day #2 off Cymbalta and doing OK !!! So we'll try again. In the past I didn't get the W/D until day #3 off the Cymbalta so maybe I can breathe a sign of relief on Sat.????? Will certainly be glad to put that behind me!!
    Have a good night.

    Deb

     
    Sponsors Lightbulb
       
    Old 03-12-2008, 02:29 PM   #2
    Baybreeze
    Senior Veteran
    (female)
     
    Join Date: Jun 2006
    Posts: 2,072
    Baybreeze HB UserBaybreeze HB UserBaybreeze HB UserBaybreeze HB UserBaybreeze HB UserBaybreeze HB UserBaybreeze HB User
    Re: Update from Deb....

    Hi Deb, I really don't know what could be causing the same left sided pain but my guess is maybe it's something not detected in the MRI or somethign not detected by the Doc who made the MRI report. I know when I get severe pain on one side, I favor the less pained side. This in turn usually causes me more muscle soreness and such on the favored side, but I can't recall if it ever caused any nerve pains. I do know how frustrating it gets when a reason for pain can't be found.

     
    Old 03-12-2008, 03:19 PM   #3
    deb53
    Senior Veteran
    (female)
     
    deb53's Avatar
     
    Join Date: Jul 2007
    Location: Richmond, Va. USA
    Posts: 1,062
    deb53 HB User
    Re: Update from Deb....

    This is actually the same nerve pain as on the right, just not as severe and not constant like on the right. What other test would show what could be the cause? The hospital has the newest MRI machine that actually does some sort of myleo procedure when they put the contrast in. Supposedly the best MRI machine available? Anybody else have this issue or ideas?

    Deb

     
    Old 03-12-2008, 07:32 PM   #4
    BlueAtlas
    Senior Veteran
    (female)
     
    Join Date: Aug 2006
    Location: Virginia
    Posts: 3,304
    BlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB User
    Re: Update from Deb....

    Stick to your guns about letting her accompany you into the exam room! Absolutely get a lawyer if she persists! You have rights!
    Emily

     
    Old 03-12-2008, 07:46 PM   #5
    stymie82
    Member
    (male)
     
    Join Date: Sep 2007
    Location: Moyock, NC,USA
    Posts: 68
    stymie82 HB User
    Re: Update from Deb....

    Deb, how did you get your MRI's instantly read? I have had 3 and waited at least a week every time. You might ask your doc or the neuroradiologist if there is evidence of arachnoiditis in the axial views of the films. My nerve pain coming on in the right leg as well as the left was a big clue in me finally being diagnosed with this disease. I hope it's not your problem, but it's something to rule out.

    Ernie

     
    Old 03-12-2008, 08:44 PM   #6
    ms_west
    Senior Veteran
    (female)
     
    Join Date: Dec 2006
    Location: western us
    Posts: 7,265
    ms_west HB User
    Re: Update from Deb....

    Deb, sometimes nerve paths cross. As I am sure you are aware there is a dermatone chart which shows the nerve pathways for a typical person but keep in mind we are all unique. We have found that according to the dermatone chart, my pain should be due to L5, S1 but it is coming from L4. We found this out by blocking the L4 level. It took away my pain that is a typical L5 dermatone chart pain area.

    This could be why you are having left sided pain. You nerve root problem level may be inpinging on the left side/nerve or the nerve is somehow crossing pathways with the nerve root on the left side. Hope this makes sense. If not I will try to re-explain it.

    You might ask about then doing a diagnostic nerve block. Have them block one nerve root and see if your pain goes away. If it doesn't they are working on the wrong nerve. It may take multiple nerve blocks to determine what level is causing the pain. Just an idea.

    Last edited by ms_west; 03-12-2008 at 08:45 PM.

     
    Old 03-13-2008, 05:07 AM   #7
    Baybreeze
    Senior Veteran
    (female)
     
    Join Date: Jun 2006
    Posts: 2,072
    Baybreeze HB UserBaybreeze HB UserBaybreeze HB UserBaybreeze HB UserBaybreeze HB UserBaybreeze HB UserBaybreeze HB User
    Re: Update from Deb....

    OH yea, and I just saw on tv the other day (it was actually local philly programming from my surgeon's group about back surgery)...this guy had nerve pain for 8 years down one leg. The MRI showed a herniation and a bone spur. When the surgeon went in to do the operation, he found he had 2 nerve roots that were conjoined! (which made getting the disc out more difficult). The surgeon said that was a rare occurence, but nonetheless, just goes to show that once you get opened up, there might be other things in there that imagining doesnt show.

     
    Old 03-13-2008, 01:52 PM   #8
    deb53
    Senior Veteran
    (female)
     
    deb53's Avatar
     
    Join Date: Jul 2007
    Location: Richmond, Va. USA
    Posts: 1,062
    deb53 HB User
    Re: Update from Deb....

    Hi friends,
    Got the hard copy of my MRI and this is the important part:

    .....enhancing soft tissue material around the S1 nerve root.....S1 nerve root also demonstrates enhancement and has an abnormal T2 signal....broad disc protrusion in the right L5-S1 foramen which is more predominant when compared to previous study.......this abuts but does not compress the exiting L5 nerve root......L4-L5 disc demonstrates a mild broad disc protrusion slightly more prominent on the left with some compromise of the left L4-L5 foramen but no obvious deviation of the exiting nerve root. Also mentions some degenerative changes at L3,L4,L5.

    These were the changes. Any ideas? I see the surgeon next week.

    Day #3 with no Cymbalta!! Yeeee Hawwwww! I'm going to make it this time!!

    Pepper and Baybreeze....funny you said that because in looking over the neurologist report from his exam, he is saying I have a "prefixed right lumbosacral plexus". From the research I have done this means what you said Pepper.....not all nerves innervate what they are "supposed" to innervate. I have right ankle dorsiflexor and toe extensor weakness which is usually L5. So in his opoinion this represents the "plexus".

    Ernie....I've worked at the hospital as a nurse for 21 years and I know most everyone.....including the radiologist!

    Deb

    Last edited by deb53; 03-13-2008 at 01:54 PM.

     
    Old 03-14-2008, 04:00 AM   #9
    schragie
    Veteran
    (female)
     
    Join Date: Aug 2003
    Location: NJ
    Posts: 498
    schragie HB User
    Re: Update from Deb....

    Deb:

    I have had bilateral pain for several years now, worse on left side, but still pretty nasty on the right. My surgeon gave me the same explanation that Dr. Pepper did (see, you are a doctor, PEP!) and originally my herniation was central, which meant that nerves could be impinged on both sides. Now I have 4 bulging discs and a swollen S1 nerve (left), but sciatic pain in both legs and feet.

    Sometimes I feel like a kook telling the pain doc that both sides hurt, but those're the facts. Other times I have felt like a medical mystery, but nerves are mysterious and they do strange things.

    Have you had an EMG lately? I wonder whether that would give more information on what the nerves are doing.

    And congratulations on getting off Cymbalta! It looks like this time, you're going to be fine and all I can say is -- what a relief!!!

    Schragie-girl
    __________________
    4/2006:TLIF L5/S1
    2002: C4-5 herniation
    1/1999: ACDF C5-C7

     
    Old 03-14-2008, 10:08 AM   #10
    deb53
    Senior Veteran
    (female)
     
    deb53's Avatar
     
    Join Date: Jul 2007
    Location: Richmond, Va. USA
    Posts: 1,062
    deb53 HB User
    Re: Update from Deb....

    Hey Schragie,
    I know what you mean....I feel like a nut case when I have to tell them it hurts on the left also!! But the more research I do on this "plexus" it means that my nerves are "bunched" together differently than others. I always knew I was weird!
    My EMG on the right shows permanent nerve damage. The one on the left shows "irritation" (will get better supposedly). What exactly are they doing for your nerve pain?

    Deb

     
    Old 03-14-2008, 09:14 PM   #11
    schragie
    Veteran
    (female)
     
    Join Date: Aug 2003
    Location: NJ
    Posts: 498
    schragie HB User
    Re: Update from Deb....

    Deb -- all I can say is Oy vey! I take Cymbalta and Neurontin. Today I saw pain doc and he prescribed a new drug called Flector. It's an NSAID in a patch, which is good for me since I have an ulcer history. I don't think my insurance covers it, but will try to get it approved.

    We switched me from Flexeril to Skelaxin, because the Flex made me stupid, and that's about it, plus some Lidoderm patches, which help minimally. I also use a TENS, ice, heat, and am doing PT.

    Pain doc pretty much said he thinks I have SI joint issues (in addition to the arthritis in the facets), nerve damage, scar tissue, blah blah blah (I added the blah blah blah part ) and that he would not recommend any more surgery for me. I second that motion. He said that nerve pain can jump around like mine does and he thinks it's the L5 area causing me most of my problems. Stenosis, arthritis, bone spurs, etc. can also irritate nerves.

    At this point I am trying to just come to terms with this being chronic and I don't think I want to take any more tests to get the hows and whys unless it worsens. My pain is a 3 or 4 most of the time, with spikes that bring it up to a 6 or 7, but not too often. How about yours?
    __________________
    4/2006:TLIF L5/S1
    2002: C4-5 herniation
    1/1999: ACDF C5-C7

     
    Old 03-15-2008, 05:13 AM   #12
    deb53
    Senior Veteran
    (female)
     
    deb53's Avatar
     
    Join Date: Jul 2007
    Location: Richmond, Va. USA
    Posts: 1,062
    deb53 HB User
    Re: Update from Deb....

    Same here girl! I use the TENS unit, ice, still doing exercises that I learned in PT to strengthen the core, Darvocet, Skelaxin, Motrin 800 (not all at the same time of course). Pain is from scar tissue and nerve damage. Nothing to be done surgically at this point in time, although they anticipate that the
    L4-L5 and L5-S1 may give me problems down the road. No surgery is fine by me, as I think it would only cause more pain and scar tissue. I think if they can find a nerve med that agrees with me I will be SOOOO much better. Interesting that your pain doc says the pain can jump around. They just keep looking at me like I'm nuts when I say the left leg hurts. Docs look at things so differently it makes you wonder if they all went to med school?? Crazy! My pain daily is a 3-4 with bad days at 6,7,8. When I go to work for 4 hours I'm sitting, standing and walking but I'm hurting when I leave and have to go home and rest. Do you work outside of your home? How do you do with that if you do? I too am thinking this may be my life.....it will consist of pain control.
    Day # 5....no Cymbalta....no withdrawal!!! I'm so relieved. The psych that I ended up going to to get off the drug actually called me yesterday to see how I was doing!! I was so impressed!
    Everyone have a good week-end!

    Deb

     
    Old 03-15-2008, 06:47 AM   #13
    BlueAtlas
    Senior Veteran
    (female)
     
    Join Date: Aug 2006
    Location: Virginia
    Posts: 3,304
    BlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB UserBlueAtlas HB User
    Re: Update from Deb....

    Deb, I'm so glad you're finally done with the Cymbalta! What an ordeal!

    Hope you have a less painful weekend and can relax.

    Emily

     
    Old 03-15-2008, 07:30 AM   #14
    schragie
    Veteran
    (female)
     
    Join Date: Aug 2003
    Location: NJ
    Posts: 498
    schragie HB User
    Re: Update from Deb....

    Hi Deb,

    We are quite alike with our problems! How is the skelaxin working for you? I have to mailorder mine so will stick with flexeril for another couple of weeks. Doc wrote me a script for 400mg skelaxin and when I called pharmacy they say it doesnt come in that dose. Oops!

    Congrats on getting off cymbalta and making it do day 5. You should be in the clear now, yes? This is such good news!

    As for jumping pain, when I spoke to my doc I was specifically referring to pain that started at back/buttock/hip and then jumped to calves and feet. He talked about nerves branching off and this made sense to him, if not to me! My surgeon was never surprised that I had pain on both sides, sometimes worse on one than the other.

    I do work -- an office job -- with about an hour commute each way. It's really tough some days to get through, but I rarely sit for more than an hour at a time. Extended sitting pretty much makes my feet go numb. I keep something at my desk to raise my keyboard when I need to stand and work and I often stand in meetings. It's tiring doing all the standing, but there are some high tables on the floor that I stand at to work sometimes also. My new thing is taking a good 30-40 minute walk in the middle of the day, which helps me a lot. People know I do it and I often have company on the walks if the weather is nice. I also carry a little lumbar pillow around with me so no matter what chair I need to sit on I have some support. By thurs or fri, I'm feeling pretty awful, but I'm hoping the PT I just started helps me out.

    Nursing sounds really strenuous, so I can see why 4 hours would be rough.

    Time to go play with the dogs. My grabber is great for tennis balls!

    Schragie-girl
    __________________
    4/2006:TLIF L5/S1
    2002: C4-5 herniation
    1/1999: ACDF C5-C7

     
    Old 03-15-2008, 01:43 PM   #15
    deb53
    Senior Veteran
    (female)
     
    deb53's Avatar
     
    Join Date: Jul 2007
    Location: Richmond, Va. USA
    Posts: 1,062
    deb53 HB User
    Re: Update from Deb....

    Thanks Emily! I am SO relieved also that the Cymbalta ordeal is FINALLY over. Hopefully if no other good comes from it.....at least everyone on this board knows to make sure they are properly weaned if/when that time comes. If my story can save anyone from suffering through that withdrawal then it was worth sharing. If you ever need a psych in Richmond, this guy is wonderful. Was voted best psych for women in Richmond Magazine (found this out after I visited him and I couldn't agree more). Beautiful day in the capitol city! Waving across the James
    Schragie....the Skelaxin works good for me and doesn't make me goofy. I only take it when everything starts to spasm. I also take it with Motrin when I have a stress headache. Works great! Wow, a full work day and 2 hours of commuting! My hat is off to you girl! I went to a craft show with my daughter today and after walking for about 2 hours, slowly, I was hurting bad. I'm not sure if I could work an 8 hour day.
    Have fun with the dogs and have a good week-end.

    Deb

    Last edited by deb53; 03-15-2008 at 01:46 PM.

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Pterygium *Update* pingsrgone Eye & Vision 13 05-31-2011 03:52 PM
    hormones and diet, my story...update #5 idealist Acne 5 10-22-2010 03:15 AM
    Update on surgery...Horrible PM nurse Brosiah Pain Management 7 08-20-2009 01:44 PM
    My experience (no actual dx right now) thoughts?? Stormangel28 Fibromyalgia 6 08-25-2006 09:34 AM
    Twins...c'mon already...update! update! Brenda1231 Addiction & Recovery 39 12-13-2004 05:57 AM
    On My 4th IUI - Need Encouragement Please ang7182 Infertility 7 09-29-2004 07:04 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 05:51 AM.





    2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!