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Joined weeks ago, have read, but never posted - so hello! :)

digiscrappyddigiscrappy Posts: 5
edited 06/11/2012 - 8:58 AM in New Member Introductions
My name is Tam and I live in Northern Virginia. I'm a 40yo married, working mom of 4 (one child is an adult now, *whew*) - for my paid job (LOL!), I work administratively at a desk all day, 2 monitors, like a tennis match. When I'm not sitting, staring at my monitors and manipulating databases, I might be found lugging files, some from drawers above shoulder level since I'm 5'2". In advance, I will apologize that I'm long-winded, but I do want to share my story.

In 2005, I was stopped in construction traffic when I was slammed from behind by a guy going full-speed ~60mph. I'm lucky I survived - he must've hit the sweet spot of my cheap Neon or something. I had to settle - I needed a car! Injuries were "minor," I was primarily treated for whiplash-type injuries and trigger points with 6 months of PT & chiro. Then the insurance coverage ran out, just after I had my first MRI that showed the beginnings of disc degeneration. But it seemed like it was minor - maybe just "typical aging" at 35. So the back specialist wasn't overly concerned as he was discharging me because insurance was done and I couldn't keep up PT at that pace out of pocket. Other than muscle spasms, I didn't deal with much after that.

In February 2011, while working at my pressure-cooker job, I started to have searing pain running down my shoulder blade, across my collarbone, and down into my arm. I had trouble turning my head to the left. So... I saw my PCP, who decided to dose me for a week with some Naproxen and Flexeril and see if it went away. It didn't. So in her wisdom, she decided not to image first and sent me to PT. PT fought with my spine and it wouldn't move. Trigger points were flaring all through my neck, shoulders, and shoulder blades. Two months in, I was getting worse, not better. My thumb and index finger started going numb on me. I started losing dexterity. Sometimes it felt like the signals my brain was sending my fingers wasn't connecting, as I tried to type. Holding a pen became difficult - I had to write larger for it to be legible.

Back to the PCP I went, who initially thought, "Maybe carpal tunnel, and let's do bloodwork to R/O something systemic. Buy a brace and wear it for a week." My PT shook her head and said, "No, no way is it carpal tunnel - call her and ask for an MRI." Well, to try to keep it short, the MRI was a mess - bone spurs everywhere, various forms of arthritis all throughout the mid-to-lower c-spine, herniation at one level with a huge osteophyte complex, partial signal loss and dessication at the level above, low-grade left neural compression at C4/C5. And at C5/C6, I was looking at high-grade right foraminal compression, mid-grade ventral nerve root compression, and low-grade right paracentral compression. Oh, and some minor flattening effacement of the spinal cord. My PCP? She called me herself to tell me that the MRI said I had a sinus infection but she didn't have the primary results yet. A week later, after I already picked up a disc and report on my own, my PCP's receptionist called to tell me that I had arthritis - go see a pain specialist - and your bloodwork is clear. Ha.

I took my PCP's advice under advisement and talked to my PT, who was astounded that she was ignoring the herniation and stenosis. So under her advice, I contacted one of the local Spine Institutes. They asked me to submit my reports and MRI discs, they notified me that I was accepted and asked if I wanted to go conservative first or jump straight into seeing a surgeon. I figured it's always best to try conservative... so I started off with physiatry.

Nice physiatrist, fairly new - only a couple of years into practice. He took one look at my MRI, declared it "not pretty at all" and told me that if a surgeon looked at it, he'd most likely say "Surgery, definitely" - but that's what surgeons do. I was there because I wanted to see if it could be avoided, obviously. And, here came the drugs. Switch from Naproxen to Celebrex. But anti-inflammatories weren't strong enough - my PCP had already tossed in some Vicodin, but he increased the frequency - BIG bottle. Add Neurontin for nerve pain. I'd already tried Flexeril & Skelaxin - we didn't want to go to Soma yet - so we went with Valium for my trigger points, since I have anxiety disorder anyway. I was given LidoDerm patches for topical treatment. This was all, on top of my Wellbutrin and piggy-back Celexa for my anxiety. And my occasional migraine meds. And my inhaler for my asthma. Yeah, I don't know how I stayed awake during the day, but I did. Oh, and I had a TENS unit prescribed so I could e-stim myself whenever needed.

A couple months in, meds weren't working. We did a trigger point injection and I could barely tolerate it - not to mention, my nerves didn't like it, I had new radiculopathy paths. He wasn't so sure that nerve blocks or steroid injections were going to be the answer, given that response. We did an EMG - arm and hand were "as expected" for someone with my diagnosis. My entire shoulder girdle and neck showed remarkable nerve damage. My primary arm was significantly weaker than my secondary - I was given ~5 pound lifting restriction. And... he asked what I wanted to do next. Did I want to increase and add drugs? Maybe try an injection once? More drugs? I don't know how I wouldn't be a zombie if I took more. No, let's talk to the surgeon to see all the sides of the picture. My husband asked the physiatrist, "Are the treatments that you suggest actually going to improve the condition or just mask the symptoms.?" And the doctor confessed, "We might slow it down, but it won't be reversed. And, yes, there is a slight risk that she could eventually lose use of her right arm." Ok. That decided it. Losing use of my arm doesn't work for me. Let's see the surgeon and get the full picture.

I saw the surgeon. He took x-rays to see the picture that day, and he said, "No doubt, conservative treatment is wrong for you. The ball started rolling in 2005, you work at a mostly sedentary job that puts pressure on your spine and also seems to cause you to have "forward head" from looking at your screens. This has been going on too long, the nerve is too damaged Yes, there's a chance... if you continue to treat it conservatively, you wouldn't feel it - you'd just wake up one day without being able to use your arm." Ok... get me scheduled. Now.

I had a C5/C6 ACDF (Anterior Cervical Discectomy & Fusion for other new members who might not know all the acronyms yet). I stayed overnight - no hassle from insurance, on paper it was a 23 hour observation and required no pre-auth. *Immediately* I could feel the decompression in my spine - it didn't feel like my head was jammed into my shoulders anymore. I was actually able to eat soft solids 1 hour post-op because I was starving and swallowing well. I had the PCA Dilaudid. Things were beautiful - I felt great with that PCA, I took lovely walks with it. I went home on Percocet. Eh, that was less great, but I slept a lot. And ate a lot of french toast - my husband has become an expert at french toast.

(This is where I mention that I'm lucky - my husband is in IT and can work from home if needed, so he's been home with me nearly every day of my recovery so far.)

Things got interesting 3 days post-op. I had some sort of reaction - severe itching all over my neck and chest, welts/hives - and I ended up at the ER (at a hospital 5 minutes away instead of the 30 minutes away hospital that performed the surgery - they're all corporately owned, so they have shared info). I had a CT, they took lots of blood, started giving me IV fluid but no meds - had to wait for CT results. If there was sign of infection inside, I would be back in for emergency surgery and I couldn't have any meds. After about an hour of itchy agony, they came back and said the CT was good, the bloodwork came back positive for both infection and histamines, so they were calling it cellulitis. Probably adhesive reaction (though it had never happened before with other surgeries). Husband thought maybe Betadine allergy, given how widespread it was, but that hadn't happened before, either. They kindly gave me an IV push of Morphine and Benadryl, with a double-dose of Keflex for the road. I got a script for more Keflex, but was told to follow-up the next day with my surgeon before filling. He says allergy, I think it was both, because it didn't fully clear until I finished the antibiotics that he ok'd. I did get to see my hardware in my CT, so that as cool. But... he had to change his protocol for me. His usual standard is collar for at least 2 weeks. I couldn't even wear a bandage over my incision, so I certainly couldn't wear a collar.

I'm now 3 weeks post-op. Incision is nearly healed - faster than usual, probably due to the open air exposure. I've had more than average difficulty with finding comfortable positions because I didn't have the collar to help. And I had nothing to remind me not to turn my head. Ouch. X-rays taken at my 2-week post-op appointment looked great so far. I'm still having some nerve issues, but I was warned in advance that the nerve may never 100% heal, it was so damaged. I go back to work at 4 weeks post-op, part-time at 4 hours a day for 2 weeks, and I have severe limitations on lifting (2 pounds) and NO FILING.

My biggest issue is pain management at the graft site. I had Percocet when I went home. The first dose was 30 tablets, which lasted just slightly more than 3 days at the dosage amount/rate. When I saw the doctor 4 days post-op, he gave me another 30 tablets, but said no more Percocet after that. So after another 3ish days, I reverted back to my left-over pre-op Vicodin. When I saw the doctor at my 2 week post-op, he wrote me a new script for Vicodin. 30 tablets - 1 every 6 hours, as needed. He said he'd give me one more round, if I needed it. Trying to ration the pills to last is. killing. me. At night, when I'm trying to find a comfortable position, 1 Vicodin tablet does nothing. I'm considering sports wrap and a piece of gauze over the incision so I can sleep with the collar for a while. I've had some severe pain rounds during the day - it's been damp and chilly - 1 Vicodin doesn't cut it. Yesterday, I had a physical and emotional meltdown. By my calculations, once I go back to work, he's going to have me on Tylenol only and I honestly don't know if it's going to be successful.

I go back to work the Monday after Thanksgiving and I have no idea how I'm going to sit at a desk and type for a long time. I took breaks while typing this post. My surgeon told me to start practicing... but it seriously HURTS.

Other than that, I'm tired all the time - and activity wears me out quickly. I was going to try to start going for walks on my own, but I get tired just walking around my house.

The surgeon already referred me back to the physiatrist to deal with the nerve issues and whether to wean the Neurontin. Since the physiatrist's specialty is pain management and rehab, I've scheduled an appointment pronto so I can also discuss pain management with him.

But the bottom line... and it took forever to get to it, thanks for reading: I do feel the difference in my spine and I know my body just has to get used to the hardware and the bone graft. I also wonder about C4/C5, if it's going to worsen, and I'll be back for another ACDF soon. There's the arthritis everywhere, so of course I'm going to get more spurs. But moral of the story: DON'T wait until the pain is this bad to consider talking to a surgeon - my nerve may never fully heal and I may always have residual side effects.


  • SavageSavage United StatesPosts: 5,427
    You're good story teller, so easy reading :)

    Sorry for all you've been through.
    The feeling tired all the time, I don't know why, but I'm always exhausted. Although, I never had surgery..so can't relate to that.

    But this chronic pain..yikes.

    I wish you the best in your recovery and it is good you shared as we learn from one another. Thanks!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • and welcome to Spine Health. :H

    You have had quite an adventure there! Hopefully from now on, things will keep moving forward towards an improved neck and a pain free life (or realistically, at least less pain)

    Your story and the fact that you have been left, it seems, with permanent nerve damage, makes me wonder about what will happen to me. Don't give up hope of it healing, I have read that it can take up to 2 years to see full healing.

    Permanent nerve damage is something that worries me. I have been told that the whole of my neck is a mess, with degeneration from C3 to C7. At C3/4 and C4/5 there is 'significant' compression on the cord. I am having all sorts of symptoms, including some in my feet and legs, which could be from that, although as I have problems in my thoracic spine (with mild compression on the cord)and have had a lumbar fusion but the adjoining levels were not in a good stage before surgery.

    My neurosurgeon consultant is doing careful watching and waiting, reviewing my case every 6 months. I don't know quite what he is looking for, but in a way not having surgery suits me. However, I do worry that things will be left too long and I will be left with permanent problems.

    My last appointment was in October and I saw the registrar. After examining me, he said he was recommending a 2 level ACDF and spoke about where he would make the incision, the percentage of success, the risks to surgery but that there were also risks to not having surgery. I asked if there was a better chance of success if I had the surgery sooner rather than later; he said yes.

    He went to speak to the consultant, and came back about 15 minutes later, saying that the consultant was much more experienced that he was, and he was recommending that we wait, so that is what we would do. Talk about an emotional roller coaster! There must be something that they are looking for to mean a green light for surgery, that I don't have. It would have been nice to get more information about that, which would have helped to reassure me. I now have another appointment in April next year.

    Meanwhile I have physiotherapy every week, to keep my neck as mobile as possible. My physiotherapist is pretty sure that I will need surgery at some point. He has spoken to someone with more knowledge than him, and they reviewed my MRI scan. He wanted to try to find out why there was this change of plan for me. They talked about the fact that my MRI scans with 12 months between them, didn't show much deteriation so things aren't getting worse very quickly. Also the fact that I have so much degeneration throughout my neck, that a fusion could cause the other levels to go, needing more surgery down the line.

    I am in the UK so they don't rush into surgery easily. I wonder if they have more patients here who end up with permanent nerve damage from trying to avoid surgery. I just have to trust that these experts know what they are doing. I wish they would explain their thinking though!

    I wish you well in your recovery and will follow your progress with interest.

  • Thank you for the welcome, jellyhall. :H

    It has been an adventure, that's for sure. I know that healing takes time, sometimes lots of time. It might require more specialists - a neurologist to watch my nerve more closely (my surgery was done by an spinal orthopaedic specialist) - and I may need that pain management doctor for a while. And my PT - she was really my mainstay earlier on and I'm looking forward to getting back to her. I may need her for a while. Not so sure my job will understand as much. And I have children to take care of. It's not easy.

    My goodness, you do have quite a lot going on - and yours is more direct compression of the cord while that was minimal for me. It is good to hear that it's progressing slowly, between 12 month MRI's. I think it's also good that you have 2 doctors looking at your case. And I understand what you say about not having surgery suiting you - surgery isn't something you jump lightly into. You weigh the costs, because there always are some - hopefully most of the time, they're few and less noticeable. I think, though, that spine surgery does at least have noticeable short-to-moderate term costs and you can't expect to feel entirely better overnight (as I can compare to 2 other surgeries that I had - removing unnecessary organs, which meant my pain was primarily involving the incisions as opposed to modifying parts that still stay inside of me). I will say, with the compression being on your cord... it does sound like surgery is an eventuality and is safer than the risk of not doing it.

    I confess, as soon as I had the surgical opinion, with the knowledge that he was the Director of the Spine Institute for that hospital, which is renowned for spine & joint surgery, I jumped. Everyone I talked to said that he was the best hands in the entire Spine Institute that I could be in. I do know what you mean about the fusion potentially causing the other levels to go - and with degeneration already occurring at the level above, I wonder if it's a when and not an if for my next surgery.

    I agree, I wish the doctors had more time to explain more - here in the U.S., it seems like you get maybe 5-10 minutes with the surgeon at an appointment. Just once, I would've liked to have someone sit down with my MRI disc and explain everything to me.

    I also wish you well, and appreciate your wishes. I'll be keeping up with your experiences, too.
  • I'm glad to hear that my tale wasn't too horrible! :) Thank you for the warm wishes. I'm also glad to be able to share because, while I'm struggling now, it's not all bad and I want people to know that. Having the pressure off my vertebrae makes such a difference. The rest is logistics - finding the way to be comfortable. More pillows at night, maybe. Proper support at a desk. Continuing to ask my family to help out more at home.

    I feel a bit sorry for myself sometimes, but then I realize that I'm lucky that this is something treatable.

    Having constant back and neck problems - your body is constantly fighting against it - it's wearying. And I know that my body is trying to send lots of white blood cells towards the invaders - the hardware and the cage - because it knows that's not normal. It's also holiday season, and in my house, birthday season. I had a child turn 20 last week - luckily, that was minimal involvement, we went out to dinner. But I also had a child turn 10 this week - intensive involvement, including a party tomorrow. A crafting party. Lucky for me, I have a sister-in-law who is responsible for my becoming crafty - she's my savior tomorrow.

    As for the pain, I'll muddle through it - with the help of one doctor or another. It seems like I have such an arsenal now. Someone has to have a solution, especially since NSAIDs are forbidden for 3-4 months and Tylenol has never been much help to me.
  • Hi and welcome. Sorry to hear about your issues, Welcome to the pain club,

    Spine seems to be very complicated for these dr,s, Some do real well and some never totaly recover from injury to the spine, once the nerves are comprimised in any way and they cant heal! Life seems its never the same after,

    Hopefully you will be 1 that can recover from this and nerves will heal without leaving any serious issues behind, Best wishes and good luck,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • I'm sorry to hear about your issues, as well. Yes, it certainly does seem to be a pain club - and it was a sleepless night due to pain that finally brought me out, posting.

    I guess it's really a situation of how every single body heals differently, and while the procedures are textbook (or nearly so, when the doctors run into unexpected situations once they're seeing things more closely) - no one's rate of healing or rate of pain tolerance is the same. I agree, I suspect that once a nerve has been compressed as far as mine was - and doctors were talking about it possibly losing function - it can only come back so far, and maybe youth can aid that. I'm 40, young for some, not so young to others. I wish I could say that I still felt like a spring chick - I did, most days, until that day earlier this year when I came unsprung. So, for now, I'm hopeful that I come through this with just a little residual tingling now and then with the nerve. Being able to finally strengthen muscles in rehab will help, and maybe I'll get used to this hardware that's in me.

    It sounds like you've really had a struggle yourself. Do you have a more recent update to the history in your signature line, or are you still pending more procedures? Also, if you don't mind my asking, what side effect do you have to the Neurontin?

    I wish you all the best as well, and the hope that there is a way to relieve the pain as best as possible.
  • I know what you mean about feeling unsprung. We are close in ago, I am 37. I have a herniated c5 c6 which caused spinal stenosis but no one could tell me how i herniated it. This has completely turned my year upside down.

    I do hope you feel better and get yourself back or close to where you were before.
  • Sounds like we really are in very similar places. The best guess for my herniation was sitting at a desk! This year has been all about my spine/neck/shoulder/back and I know that the next year will still have some aspects as I deal with rehab and checking the bone graft.

    Thanks for your well-wishes. I am starting to feel a bit better. I'm down to less medication and I'm getting some range of motion back - so as I approach 6 weeks post-op, I think that's pretty good.

    I'll have to see if I can read up on your experience to see what stage you're at!
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