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Hi, newbie here.

WindsongWWindsong Posts: 9
edited 02/17/2015 - 8:51 PM in New Member Introductions
This is my introduction. I've considered joining a "real time" support group but all of them in my metro area are too far to drive. I can't even drive to my office at the moment, and it's only 15 minutes away. Fortunately, I own a very small company and my one employee is very capable and I am able to do what I can do (which isn't a lot at this moment) remotely.

So the long history, I'll make as brief as possible: Age 10 (circa 1980) - fell in a school tumbling/gymnastics program while doing a backbend. Landed on my neck, completely bending my head to parallel with the shoulder, basically blunt trauma to the neck caused by the floor. No medical treatment was given (my young parents were uninsured at the time). Severe pain persisted about a year, continued to worsen.

My parents by this time had insurance. I got x-rays and a CT scan, they couldn't find the reason I was in pain. Went through physical therapy (PT), heat ultrasound, TENS unit, etc. - none of the conservative management worked. Suffered for years; going through massages, PT, chiropractic, x-ray after x-ray, and so on - on and off. Nothing ever gave any real relief.

In my late 20's I went to a new chiropractor near a new house. I had never seen him before, nor had I described how my original injury occurred. I was checked in, seen by an X-ray tech, then waited to see the doctor for the first time while he reviewed my X-rays. He came into the room and said, "Have you ever had an injury where your neck was over-extended, like this (mimicking head to the side) and got a blunt trauma right *here* (pointing on his own neck to the exact spot). I was dumbfounded. "How would you know that?" He said, because that's the only way possible you could have fractured your neck right here, in this way. He showed me the X-ray. I'm not sure how that fracture was missed all those years, on all those X-rays and a CT scan when the injury was only 1 year old, 16 or 18 years earlier. However, at least I finally had an explanation for the pain.

Over the next several years I tried everything and the pain just kept getting worse. After three separate pain specialists told me that surgery was my only option (after epidurals, bi-lateral radio frequency ablation, MRI, etc.) I consulted with three surgeons. The one I chose is the head of neuro-spinal surgery at a renowned neurological institute/research hospital.

The MRI results showed that from C5 to C7, there was so much bone spurring that there was no spinal fluid in those areas. It was pinched off. The discs were pretty much gone; it was bone-on-bone-on-bone spurs. The spurs were squeezing my spinal cord so that on the MRI view looking down the spine, it should look like an O but mine looked like a D.

This explained all sorts of weird neurological symptoms I'd been having - bursts of light in my eyes, eye twitching, poor balance/falling, facial numbness ... in short, wondering if maybe I was a hypochondriac. I was relieved to know that it was all explained by the bone spurs squeezing my spinal cord, but terrified of the surgery. But again - I chose a world-renowned surgeon at a world-renowned hospital. (I waited six hours to see him for my initial consult. He was worth every minute). I had a fusion C5-C7 in December, 2011.

Unfortunately some of the nerve damage caused by the squeezing/spurs was permanent. There are also known "issues" in my thoracic and lumbar areas, which seem to be worsening. I was told when I was in my 20's that my neck looked on X-ray like someone in their late 40's. I was told by my spinal surgeon that he doesn't usually see this level of degeneration in people until they are in their late 70's. I know why the neck was like that (the injury when I was 10 yrs old). Don't know why the rest of my spine is degenerating like this.

At any rate, after surgery the pain was reduced by a good 90% on good days, 70% on bad days.

Over the past 2 - 3 months, my neuropathic pain has worsened. Went to my pain doc on Friday. Told him I'd started taking some leftover Lyrica I had from before the surgery, which had been prescribed by the pain specialist I saw before him. He doesn't like Lyrica. I don't either, for me personally. It makes me feel like I'm in slow motion, mentally and physically. It also makes my face very puffy, makes my lips and feet numb, etc. So he prescribed Gralise. He gave me two starter packs and told me to titrate half as quickly as normal. This is because I'm very sensitive to meds, I usually get the rare side effects that they only see in one out of every 10,000 patients. Oh, I should add, I cannot take most opiates because they cause me severe depression. The only thing I was able to take before my surgery was Nucynta. I didn't have any of the side effects from that one that I get from the other traditional pain killers.

So... after only one dose of Gralise (this past Friday) I woke up Saturday feeling great. The nerve pain down my leg, arm, and in my foot was gone. Saturday I had a fantastic day, hiking a bit (nothing strenuous), being outdoors and generally thinking, this is a miracle. I can walk without pain down my left leg! Whooo hooo!

Unfortunately, I felt SO GOOD on Sunday morning (after my 2nd dose) that I didn't try to get out of bed as I usually do - which is by rolling over on my stomach, putting my feet on the ground then standing up slowly. BIG MISTAKE. I tried to sit up from laying on my side and oouuuchhhh. Something in my neck went wrong. I couldn't turn my head at all, I was miserable. Heated/iced/heated/iced and maxed out on my muscle relaxers (Zanaflex) all day Sunday. Nothing touched the pain. Called my pain doc (who I just saw on Friday) on Monday (yesterday) and asked to get in again.

Turns out, I sprained my C4, right above my fusion. I got heat ultrasound, a Toradol shot, and a prescription for 4 more days of Toradol. I'm in pretty close to the same amount of pain I was in before surgery at this point. The Toradol doesn't really seem to be helping.

I have an MRI scheduled for this Friday, that was already ordered to look at why my neuropathic pain was getting so much worse. We believe it's because of the issues in the lumbar area. Now I have this new injury to my neck.

I'm so frustrated and I choke back tears all day. More from frustration than pain. I'm just sick of it. I'm sick of medication side effects. I'm sick of living in pain. I'm sick of taking one step forward and two steps back. I'm sick of needing my husband to be my personal waiter/attendant. He came home from work an hour early today because the more I move around to do normal things, the more I hurt.

I'm also sick of having surgery. Beside the spine surgery, I'd had six other surgeries on unrelated conditions by age 37. Ok, well, one of them was related. I underwent a breast reduction about 17 years ago, thinking it would give me some relief on my neck and back pain. At that point, they still had no explanation for my pain (this was before the fracture in the vertebra was finally found). It actually did give some relief. Not a whole lot, but I have no regrets. I think it helped in the long-term.

So... here I am. Frustrated, miserable, and wanting to kick holes in the walls - only not doing so because I'm in so much pain. Also - feeling like a complete and total whiner. When I sit in my pain doc's office and see the other patients coming in and out - I look like I'm in so much better shape than them. I tell myself, just suck it up, cupcake. But I'm sick of sucking it up. I'm depressed and tired and I have a business to run. All I want to do is lay in bed all day and cry. Also, I'm sick of people telling me, "I hope you get better." I want to scream at them - "I will never get better. I don't even remember what it's like to not feel pain." But I just smile and say, "Thanks."


  • LizLiz Posts: 7,832
    Welcome to Spine-Health

    Use that above hyperlink to help you get started with Spine-Health and navigate through the system.

    If there are any questions, you can always post them here, send Liz or myself a private message or contact Ron rdilauro@veritashealth.com

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • MRI results show a torn disc at L5 that is protruding onto a nerve, thus why the neuropathic pain down the lower left leg and foot. Also, degenerating discs at L3 and L4.
  • Gralise (like every other pain med I've ever tried) did not work out for me. Severe nausea, insomnia, tremors. I'm tapering off. Got an epidural today and reassurance that we will try to conservatively manage this until it fails, and if I am referred to surgery, there will be no need for a fusion; I have plenty of disc remaining, it would just need repair. Feeling much better emotionally and physically. Thanks for listening! Hope this is helpful to someone in the future.
  • EnnaEEnna Spain but BritishPosts: 21
    Just had a consultion with my surgeon in Valencia. He is going to stabilise my spine on 25th March Having had comments in England that I was putting the pain on (from the pain clinic, after "Inspace" (like X Stop) didn't work. After this I consulted an orthopaedic surgeon in Warrington who was supposed to be good, and the question to me did I want a little pain or could I stand a lot of pain - After this I had decompression at L4.5 Coming to Spain 6 months later almost unable to walk the pain clinic here put me on Lyrica and Pazital - the surgeons here made such a mess, confusing comments that we have got sick and tired of all this and consulted one of the best surgeons in Valencia. After two consultations he is going to put 2 rods and 6 screws to stabilize my spine. Dreading the operation but I hope now that after all the crap I have been fed by one person and another, I will be without pain.
  • dilaurodilauro ConnecticutPosts: 9,859
    edited 02/24/2015 - 4:02 AM
    just posted. Surgery is not always going to be the answer to being pain free. In fact, once you have spinal problems, being pain free can be something of a fantasy. Not saying that everyone with spinal problems can not be pain free, but so many that have had multiple spinal problems with one or more spinal surgeries soon begin to realize what their pain level norm really is.

    After 30+ years dealing with spinal and joint surgeries and chronic pain, my normal pain level is about a 4. So I always have to compensate for that, deal with the medications and treatments. Its not a problem, as long as you understand what you are dealing with. Will I ever be pain free? Gosh, I would love to be, but being realistic, I know that is not going to happen for me.

    I just say that so that when people go into spinal surgery or start on a journey of pain medications, pain elimination may never happen. What you are looking for is a reduction in pain levels so that you can continue to exist on a day to day level and function the way you need to (note, not want to, but need to)

    You really never get accustomed to pain, but you know its going to be there, so there is no big deal.

    When I wake up in the mornings, I can feel the various pain spike points along my body. I know it will be tough getting up and getting going, but I am used to this. As the day progresses, those pain points start to adjust where I can deal with it and not have any big impacts. But the pain is there and will be. No problem, just have to learn how to deal with it all.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Doug HellDoug Hell Posts: 335
    edited 02/25/2015 - 2:46 AM
    It MAY NOT be realistic. The idea of a surgery is to fix the problem at hand and any pain relief is simply a bonus. I have seen way too many people expecting miracles and then end up depressed because it didn't happen. I'm not trying to be a Debbie Downer here, but you need to be made aware that surgery is not always a pain fix.

    Windsong, I am so sorry that you continue to go through this..... If it is any consolation, know that you are not alone. I am still riding this roller coaster to recovery ride filled with ups and downs, confusions and frustrations.... I'm running high on frustration and low on patience myself right now as I was just dealt a blow by my legal team, which hurts my financial situation even more now, knowing that I am SOL for the next 11 months........ I am trying my best to hold on, even though there isn't a whole lot to hold onto anymore.....

    At the end of the day, just know that things always have a weird way of working themselves out. We all just need to hold on tight and hope that one day we will get to where we need to be. Sorry I couldn't offer anything more right now. Hope is there, even if it's a long shot.....and never deprive someone of hope, it may be all they have.

    Realize that FEAR is our worst enemy. Get up & get out in that stormy weather of the real world & kick fear in the teeth. Stare at it dead in the eyes & walk right through it into the storm; because once you're wet, you won’t fear the rain anymore
  • Yes, the mornings are usually the worst for anyone, but as the day progresses, things do indeed adjust, only to become more difficult again as the end of the day approaches....

    Bottom line; WE can manage anything. You just have to accept it, put your plan of action into play and simply do it. There is still life to enjoy, so please try your best to manage your pain and enjoy what you can.

    Realize that FEAR is our worst enemy. Get up & get out in that stormy weather of the real world & kick fear in the teeth. Stare at it dead in the eyes & walk right through it into the storm; because once you're wet, you won’t fear the rain anymore
  • Truly sorry for what you are going through and one thing I really hope you
    do is to fight ahead find and do all you can to get to that level of 4 or lower
    which does and continues to take effort to maintain.
    My knowledge of Ron is that he has been through so much to get to that level.
    Sadly they are right too be pain free may never be but boy to just be able to
    do some of the things you enjoy wouldn't that be great.
    To be there is a dream for so many Chronic Pain Suffers who suffer now.
    You deserve to be at a level where you can have a life we all do, so try to move
    on to other treatments and other Doctor's if you have not got solutions.
    I am at a level of pain I never wanted or imagined right now but I still get
    up want to do better which is hard to think that way I know dealing with so much.
    Take care of yourself there are a lot of people here who care and will help you.
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