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Confused

FarmboyFFarmboy Posts: 10
edited 06/11/2012 - 7:55 AM in Spinal Stenosis
Hi everyone;
I don't know if this is the correct forum to post these questions in or not. But if not hopefully the Moderators can move it to the appropriate forum, if it's not.
I'll start by giving alittle history. I've had back pain for more years than I care to count (more like 20-25 years. In March of last year I had an episode that scared me to death! I woke up one morning to find I couldn't move my legs, had very limited movement in my hands and arms. After having my wife help me into a sitting postion on the side of the bed (not without alot of pain), my wife called my doctor who immediately told her to call an ambulance and take me to the ER. They kept me for two days and ran every test they could think of, without coming to a conclusion as to what had happened! When I go home, I called my family doctor and told him what they had done and he sent me to a Neurologist. The Neurologist had me come in and they did an MRI on my spine. the Results: "Spinal Stenosis and signifigant bone degeneration of the T6 vertabre". He told me that this would eventually put me back in a wheel-chair. I had been in one back in the late 80's, early 90's (for 3 years) due to an on the job injury.That was March 10th of 2010. Since then I have found little else out. I did however find a second Neurologist and had all the first neurologist findings transfered to her and had a second MRI done on my back. She confirmed the first doctors findings. Since then NOTHING! nothing about what to expect or how to deal with the pain.
I can't sleep for long on either side, for the shoulder pain. When I lay on my back, I can't lay there more than 30-45 minutes before I HAVE to get painfully up, get my quad cane, slowly and painfully get dressed and hobble to the garage to sit in the only chair in the house that provides some relief after 2-3 hours (I am always up anywhere between 2:00-4:00 in the morning with back pain). My wife thinks it's either that I don't want to sleep with her anymore or the bed. But it's not. It's my back! I still don't know what I'm looking at as far as what to expect to happen in the coming future. - Confused not scared.
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Comments

  • I to have stenosis and had 2 surgeries. While it has help a little but I still have left shoulder pain and my left foot has a limp and is weaker. Did they recommend any surgery in the future if so what type. I still need a laminectomy on C2-C7 but now I have no ins and waiting on SSD and medicare. I hope you find relief.
  • Nope no reccomednations of surgery. The only thing the new neurogolist did was to put me on Gabapentin 300mg twice daily and if I need anything further to take Tylonol extra Strength 500mg. I take 4 of those per day. I still deal with the pain at night and can't sleep through the night (from bedtime [10:30pm] to 5 or 6 in the morning). I don't go back to see the new neurologist until February of next year!
  • I would have thought you would have severe spinal stenosis due to not being able to walk at that one time. The pain can be managed but the reversal of stenosis will not happen unless surgery is done. And even then it could come back. I know waiting till Feb is a long time to suffer and not being able to get around good. I would maybe ask the DR what they plan on doing in Feb and why you can't you have something done quicker.
  • I'm going to my new new (as of May of this year) family doctor on the 17th.I plan on having a serious discussion with her about this, at that time. Hopefully she will talk to Dr T (the new neurologist) and I also plan on making an appointment with her ASAP. This waking up at 2,3 or 4 in the morning with back pain and then going to bed at 9 or 10 at night is for the birds.

    Post edited to remove name of medical professional by Authority Member Liz
  • Ibritt64;
    I guess a little more history is in order here. In October of 1988 I was a roofer on a crew of 10 men.
    As I was rolling “felt” or tar paper out on the newly laid “deck” (4'x 8' sheets of plywood laid in the forming of a new roof) of a brand new two story house that was under construction. I was backing up as I rolled this felt out and walked right off the end of the roof (talk about feel stupid)! Now where I was located on the roof was about halfway to the crown, so the fall was about 4 foot shy of the height of the house. When I landed, I landed on my right leg. This fractured my right ankle, broke my right knee (fractured the knee cap), fractured my right hip and broke my back. After 3 surgeries and 6 months in the hospital they sent me home in a wheel chair telling me that I would walk again but only after a lot of physical therapy. 2 1/2 Years later, I had regained almost the entire use of my right side(87%). The doctor told me in my final exam, that I couldn't walk more than 100 feet without stopping to rest my right leg for fear of my right knee collapsing. No stairs, ladders, steps or curbs. Use the ramps on sidewalks. To this day I use the electric carts when I go into a big store like Walmart. So surgeries.... I've had my share.
  • dilaurodilauro ConnecticutPosts: 10,059
    From what you have posted it seems that your spinal problems are the Stenosis and some Degeneration of a disc.

    Stenosis and DDD are pretty much natural spinal aging problems, especially DDD. Stenosis, narrowing of the spinal column more often results after some spinal surgery.

    Since your doctors to date have not find any other specific disc problem , not recommending surgery, not providing any pain medications, what are there recommendations and actions plans for you?

    Stenosis and DDD can be treated through an approved exercise program and over the counter medications. Only in severe cases is surgery required.

    Gathering from your post, I am going to assume you are over 40 years old. Another thing to look into, is arthritis. With some of the work you did, and falls, arthritis could have set in and potentially progressing. Osteoarthritis can be very crippling and painful. Since there is no way in stopping that, many times surgery is required.

    Personally, the Stenosis and DDD gets in my way mostly during the night, when I first get up out of bed and when I get up after sitting or driving a car for a while. I have found walking and using a therapeutic pool to be very helpful in managing these conditions.

    Here are a few Spine-Health articles that you should read:

    DDD

    Stenosis

    Pain Management

    Also, take a look at our FAQ. Its a combined set of forun threads I've put together, as well as many other members contributing.

    Your not alone with pain and there are many here that can and will listen to your situation.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Sounds like they trying to avoid thorasic surgery because its a prety complicated surgery on the T levels. But sounds like you might have to have it done. Just get the best dr to do it if they decide to do surgery. If they have to do fusion posibly them they might have to fuse more then one level if there is issues with degenerative bone at that level.

    Unless they cant do fusion because of the degenerative bone issue who knows. Hopefully they can do some min procedure to give the nerve more room to stop the stenosis. Good luck
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Tomorrow... will be better, hopefully. it's D-Day (doctor day).
    dilauro... Actually. I'm a 58 yr old male originally from Iowa now living in Virginia Beach,Va. I will consider your words and take these ideas to the doctor when I go tomorrow. I woke up at 1:30 this morning with pain in my back and shoulders from trying to lay on either one of my sides. When the pain subsided (about an hour)I went back to bed until 5:30am. I woke up again with the pain in my back and immediately took two Tylenol Extra Strength 500mg. It didn't take it as long to subside after that. I was up then. Still am!
    What your describing of your personal condition, sounds identical to mine!! Road trip are a slow go for me. like when I go visit my sister in NC (a 5 hour trip). I have to stop often and get out and move around.

    alexhurting... I hope they don't have to do surgery. They haven't brought it up. ...yet. Like i said. All they've told me is that the T6 Vertibra is "signifigantly smaller that the rest of my spine". And that "it will eventually put me back in the chair". Lovely thing to look forward to...
  • Hi Everyone;
    For the past 5 weeks I've been undergoing physical therapy 3 days a week. Between that and all that living life entails I have been exhausted.

    To catch everyone up on what has transpired with my back treatment:

    On August 17th I went to see my family doctor to discuss with her my continuing back pain that wakes me up anywhere between the hours of 2 and 4 in the morning. Now remember, I had an MRI on my back on March 10th of 2010 with a nerologist at Chesapeake General Hospital. My current family doctor had ordered "all" results from that doctor to be sent to her. During this discussion on 8/17/11 she told me that there were no findings of bone degeneration of Vertabre T6, in the MRI or in his personal notes. I asked her if I could look at the report myself? She showed it to me on her computer right there in the exam room. I was LIVID!! I HATE when a doctor lies to me! She said that what I needed was to get active. She ordered the physical therapy. But to no avail. I STILL wake up in the middle of the night with back pain! I sent her a message through the MY Health My Chart portal that links me to all of my doctors, test results (that make it into MY Chart) here in the Sentara Healthcare system. Now she reccomends that I make another appointment with her.
    I am getting so tired of the run around!! I just want a decent nights sleep with no pain when I wake up!


  • On November 23rd I'm gong to a spinal specialist. I hope they can tell me something.
  • Glad you'll be seeing the Spine Specialist soon. Are you getting any pain medications or do you try icing or using heat on your back when you get up at night? Are you seeing the Spine Specialist at the same hospital network? If not you'll need a copy of your MRI on a CD disc to bring to the new Dr. you're seeing.

    I hope you get some answers and check out what to ask your Surgeon in the blue search box at the top of the page. Take care and thanks for your update. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I use a special heat/massage chair mat that my former step son gave me for Christmas last year. It does only so-so in reliving the pain when I'm sitting for long periods of time. I HAVE to get up and walk around every about 15-20 minutes.
    The hospital network that I now have all my medical needs looked at is the Sentara Network here in the Hampton Roads area. I have gone to Chesapeake Regional Medical Center and aquired all my MRI films on disc and will be taking them with me on the 23rd. As for medications... I'm on Diclofenac 75mg (started that in 2003), and Gabapentin 300mg (started in March 2010) both twice daily. I do my exercise routine every other morning inspite of the pain that I awaken with. It seems neither the medication nor the exercise routine does any good. Hence the reason for my looking into a back specialist.
  • Just wondering if you're having so much pain why they won't try some pain meds for you? Let your Family Dr. know you're having too much pain that awakens you from sleep and you're unable to sit too long or sleep well. I hope you get more answers from the back Specialist Dr. soon. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Since I am an insulin dependant diabetic of 18 years, along with a myrid of other health issues, the only thing they recommend that I take other than the Diclofinac and the Gabapentin, is Tylonol Extra Strength (500mg). It got so bad yesterday afternoon that I had to take 3 of them.
    I've gone to my family doctor and complained of the issue only to be told what I've posted ealier in this thread. Then after breezing through the 5 weeks of physical therapy that she sent me to,only to have the pain still wake me up every morning,even on mornings following the PT treatments. I asked her to refer me to a Spinal Specialist. Whom I go to see on the 23rd.
  • Well today went well except for the rain. I went to see Dr. C. He looked at the MRI from 2010 and argeeed with Dr. S as far as Vertebra T6 being signifigant smaller than the rest of my vertabra.. Although he did not think that it would eventually put me back in a wheelchair. "It is not causing you any loss of spinal function at the moment". He recommended Pain Management. the nurse said that as soon as she could get me an appointment to see a pain management specialist she would call me.

    Post edited to remove name of medical professionals by Authority Member Liz
  • I hope you get the help you need but im here to tell you its a very hard road, At 34 messed up my back pretty bad, i had 1800 pounds fall out of the back of my truck on to me. As a result i had to have L2-S1 fused. During all my tests the found that I had server lumbar spinal Stenosis and also cervical Stenosis also along with Degenerative Disc Disease. its been two years since i was cut on and got the fusion and I feel 100 percent worse. At 37 i am on Social Security Disability I cant lift i cant bend over It hurts to sit stand even lay down for long periods of time i cant make it though the day with out pain pill 20 MG of oxycottin 4 times a day with 10 MG of volume 3 times a day. I have read all of your post and I have seen and been to many docs but the biggest lesson ive learned is back pain is the most misunderstood problem. Because the doc and the surgons cant answer the million dollar question that we all want WHY AM I STILL HURTING ALL THE TIME Ive been told my back is gettting worse and fast and not because I wont be able to walk, but the pain will put me in a wheel chair one day. But in the same breathe I was told theres no reason for my pain and then handed bottles of pills to stop the pain. So yes it is very confusing I think the docs and the surgons just dont want to admit that they dont know and cant tell us why we hurt. but my best advice find a good caring doctors after you have surgery that will take care of you and give you what you need for pain. Stay away from pain management docs they are a joke and they dont help i spent two years in therpy with 2 differant therpist 5 times a week doing differant kinds of therpy water land based and micro core training none of it helped. Im sorry you cant streach away the pain that we have. Stand up for your self get mean if you have to make sure your heard or they wont treat you the way you deserve. But then thats me if may be differant for you and i truly with all my heart hope it is. But my father 3 of my friends and a few x co workers have all had back problems and surgery and none of us make it through the day with out pain pills. And before someone says oh this guy is just a wimp I spent seven years as and SRT army Sniper i have had 4 other major surgeries including one to move the nerves in my arm and attatch them to the muscle and i Stopped taking my Pain pills inside of a week. Markis Lutrell X navy seal broke his back and to this day years later he has problem with pain and takes pills to get though the day. Theres no shame in it. But make them explain everything do your research and make you voice be heard Good luck brohter i hope you get pain free
  • Jannabelle2001JJannabelle2001 Posts: 1
    edited 06/16/2013 - 4:32 PM
    Pain pills like OxyContin mask pain so U can injure yourself every day over n over. Plus they have a rebound pain effect on the nerves (make em sensitive). If I need pain pills usually it is because bones are rubbing irritating nerves. That doesn't get better, only worse. Especially on narcs. Use things that don't rebound ur pain and try to strengthen. From my experience.. Best of luck to you! Pain sucks!
    Arthritis since age 3yrs. JRA, cervical and lower joint pain and FMS. Supplements: Flax oil, Glucosamine/Chond., Multi Vit Pills: Tylenol, Mobic, Flexeril, Lidoderm w cervical collar! Holds it!
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