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Can someone lift me up?

susanDssusanD Posts: 2
edited 08/31/2015 - 2:54 AM in Back Surgery and Neck Surgery
Hi, My name is Susan. I had two surgeries on my neck, first on c3 and c4 then after one year and no relief i went to what was suppose to be the best surgeon on the east coast. He fused c4 thru c7 two years ago and i STILL have pain in my shoulder down to my fingertips. I am so discouraged and my life is so turned upside down , I don't know where to go from here. Is there hope??

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I’ve had this for years, it hurts, I cant move my shoulder – what could this be, what treatment should I get?

Diagnosing spinal problems can be very difficult. In many ways it’s like a game of clue. Especially, when the diagnostic tests come back negative – no trouble found! Then it’s up to the patient and the doctor to start digging deeper. The doctor is like a detective. They need clues to help them move along. So, you as the patient need to provide the doctor with all sorts of clues. That is like it is here. Without having information about a condition, its impossible for anyone here to try to help.

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--- Ron DiLauro, Spine-Health System Moderator : 08/31/15 08:24 est



  • Sheri76Sheri76 Michigan Posts: 483
    edited 08/31/2015 - 9:15 AM
    Sorry you are in so much pain, and for such a long time. Chronic pain is such a life sucker. I haven't had your surgeries, but I have suffered from neck pain in the past, but not to your extent. From reading other post's I was wondering if you have ever tried taking gabapentin? ? It didn't do my back pain any good, but everyone is different.
    Is your Dr. still working with you to find a solution?

    I empathize with your agony....there's many a day I've felt like I can't take it anymore, but I keep praying , hanging on to the hope of a better tomorrow. It's difficult to not lose your sense of humor, and to want to keep reaching out to others for any kind of help, so keep reaching, and surround yourself with as much support as you can. I keep looking for that corner to turn on for my lumbar fusion recovery, thinking I'm a little closer, just have to take one day at a time, and keep telling myself that this will pass.
  • 2dgs4cmpany22dgs4cmpany Posts: 200
    edited 08/31/2015 - 11:26 AM
    We get one chance at our lives. It's never to much to ask to make every single second worth it. How in the heck can you do that when you have chronic pain?!? Breathe and give yourself some grace. Sounds like you have been working on feeling better for a long, long time. I bet u r a neck specialist! And I hear u too Sheri! I bet u are as much a pro and lower lumbar pain as I am.

    I so want to be great at anything but pain. It's hard to have hope on some days. I know. But darn it..I am gonna say it..here it comes..u know it...it could be worse.

    I can always be worse. In my darkest hours I think what the pain has given me. It has given me a beautiful life gift. I know what I am made of now. I know darkness so well that any light is glorious. And when it gets worse, hurts worse..I know I can handle my hard days easier for that. So I suck the marrow out of the moment. Any light moment. This is hard too. Cuz isn't it true that when you are happiest you have to be so careful. So so careful to move the right way. And even then..even in the safest happiest moment, the pain can return.

    But you got that moment. You are able to be happy and joyful in those moments. There is nothing like them and they are what carry me. Oh..and a very good cry now and then. Just for me. No one sees it. Oh I get all worked up too, it's screen worthy. I can see it now: for best mental anguish and breakdown, she played this part with gusto: she wins the losing her mind award! Yay me. Wup who. My dog does think it is strange.

    My dog is such a comfort in darkness. When it's just he and I cuz all my loved humans are out playing or working or going to school. When they are all living life, on those days when it is painful and lonely..a dog is a sweet comfort to be sure. He knows my back as well as I do. He squishes right up next to it...that or he is going for the heat pad..not sure.

    Have you had any new scans since your surgeries? Has the doctor recommended any exercises or Aqua therapy. Massage, physical therapy? I gotta tell u girl, I just cannot imagine. I had a spinal headache in neck and bottom of skull last week as a lovely side affect from an epidural injection. Holy snykieys that hurt. I told my physical therapist as he worked it out I simply did not know pain like that existed and has caused me to reevaluate my pain scale. My 8 is def now a 7, a low seven for sure.

    With pain in shoulders and neck I think it makes it impossible to think! I could barely stand it and I only tasted that for a few days. I'm not saying my low back and legs not working is a picnic..but I will take my peanut butter and jelly over ur jam sandwich for sure sister. Whew!

    I'm no therapist or dr, none on here really are. But we support you in whatever u decide to do. We are ur hope support peeps. See the light , in the darkest room. See the one lil speck o light and let that be your rock.
  • Sheri76Sheri76 Michigan Posts: 483
    edited 09/05/2015 - 12:56 PM
    Thanks 2dgs4cmpany...laughing can be such a relief of tension, and a good cry can be a good soul cleanser, though sometimes I can be my own worst enemy not allowing myself the grace of doing either.

    I have also learned when down in one of those darkened physical/emotional valleys, when I'm feeling like I'll never get out of the pit, to keep reminding myself that it will pass, life is always changing, not always like I'd hoped, but enough to give myself a better outlook, or perspective of being thankful for whatever I do have. And there have been times when I've gone to my Dr. and told her I didn't feel right, and finding my vitamin D way low, and recently, and the worse feeling so far, my blood calcium level was high. I'm feeling better now, and maybe the abnormal levels hadn't leveled off from being sedentary from after my lumbar fusion, but four months out from surgery at that time, I wouldn't have considered myself laid up. Just an example of how different things affect us physically and mentally, and we need to keep giving life time to change, and doing what we're able to, to help things improve, physically and/or mentally.
  • I'm to see my neuro, general and pain management doctors all next week. Neuro for fusion decision and setting date. General because Nephrocalsinosis popped out of my cat scan - calcium buildup on my kidneys. I've been hypothyroid since age 7, and have a feeling some of my back pain is actually kidney pain to boot. That was a huge downer. I was like, really! Really, kidney issues too, okay why not. So I hear u on your blood results. I've decided I can't do anything about it today, and my general will help me as soon as I see her, so it is what it is, iiwii! Then pain management doc, gonna ask him to help me cope until I get fixed. My current cocktail of gabepentin, methocarbonal, hydrocodine and Celebrex is working, but some days there is nothing that touches that nerve and back flare up. Will see if he wants me to continue physical therapy.. For last month we dropped all physical movement except stretching. Have been doin deep massage, ultrasound, and heat and tens with the therapist. It does feel good for the hour, but we all know we are waiting for the fusion so I don't damage my nerves that are squished.

    Today was a good day. I'm glad you are finding some giggles. I'm trying too. I still cry each day, but not alone. Last few times it's been with good friends and hubster. It felt good to be loved in those moments.
  • Sheri76Sheri76 Michigan Posts: 483
    edited 09/05/2015 - 3:23 PM
    Never even knew we had them....thought we just had a thyroid. I don't have trouble with mine, though my mother and one sister does, not till they were older. For you that seems so young.

    I've already had kidney stones, only one bad episode, nothing too large to pass, but hurt like heck all the same. Hopefully never again, though a couple times I've wondered if happening again, but whatever it was diminished.

    Speaking of some of the back pain you're having now, my preop blood work showed I had UTI, which surprised me, no symptoms. They quickly put me on sippro? before the surgery...so after a couple days on it, I did notice some off my back pain was relieved, but not sciatica. A month or so after my fusion my back started hurting like I didn't think it should, so Dr. sent lab in, and showed another infection, so put on different med. Then a few weeks later I felt even worse, but no infection this time. A week later I felt worse, always thirsty, and constantly urinating, and not feeling well mentally. Dr. did blood levels, showing the high calcium blood levels, week later took thyroid tests, all good. They will repeat labs in couple months, but so far so good.
    You're fortunate to have your husband and others. I do miss being married, but I have my mom, sister, and son's, and friends.
    Hope things go well for you this week : )

  • 2dgs4cmpany22dgs4cmpany Posts: 200
    edited 09/05/2015 - 4:02 PM
    Grrrr, sad you are having this issue while recouping from fusion..you are one strong lady! Thank you for taking the time to write to me and share. I appreciate it, as I do consider you and others on this forum as new aquaintances and want to hear your progress. The more we chat, the more I feel like I have a new friend and helper to get well.

    I personally never had kidney stones, so the nephrocalcinosis is from left field. I had a uti this summer..haven't had one ever. I did notice it and went to obgyn for immediate treatment. Like you I was placed on Cipro and it cleared up immediately. I do have kidney failure in my family. On moms side my dear grandmother lost her first kidney young, then second died out in her 70's. She was on dialysis and passed at 72. The thyroid issue was from my other grandmother. I was a giant 7 yr old who never ate and had no hair, lethargic. I thank the lord an Air Force dr my mom took me to said, let's run a TSH. So until I see my general, I did research and yes...I'm thinking no genetic kidney issue, but more likely a parathyroid issue..at least I hope. It looks like that would be an easier fix than renal failure. I am being sarcastic a little and shouldn't, but if you have to deal with some of this, you have to have a cope, mine is sarcasm. I have always had serious constipation issues and wonder if all linked. Probably too much info now..but just getting out my thoughts in these forums can help connect the dots.

    Now, about you my dear. Hmmmmm. Of course I'm no doctor. But I'm thinking if you can go see your woman doctor if possible, or your general for the UTI. In your post you said the preop showed the first one and you have gone back since..just wondering if you are going to the surgeon office or the general/or obgyn? I am not scaring you, but everything I read about UTIs you should definitely follow up til it is gone, especially if you have had kidney stones. Aside from uti symptoms in groin area, the flank or sides of your back, even on one side are your kidneys, so if pain there I think you should see general. If they can't help, then a kidney doctor. To be clear, and not to minimize your pain..hopefully just a nasty infection. And I'm sure surgeon office has done what the other doctors would have done, but like you went to a specialist for your back, I would try for one for this.

    I'm glad you have your mom and sisters. What a comfort they must be. I'm an only and lucky to be close with my parents. Mom and dad both have had serious back trouble, so they offer so much support. My hubby travels constantly and I'm his biggest cheerleader and vice versa. He takes so much emotional and physical care when he can, he gives me one hundred and one hundred percent. But he is exhausted. And when I'm in a chatty mood, it is these forums that help the best. I know hubby and friends are there for me, but it is important to me not to overwhelm a conversation all about me. In here, in spiney land it is welcoming to talk and read with people who know exactly what I'm going thru. So again, thanks for talking and I sure hope the fusion recovery continues well. I remember all too well those days. Next week I get my third fusion surgery date. I'm excited to get this goin, scared of course because it is the third. Motivated to be brave because of you all.

    And Susan: hey girl, how are you doing? Hang in there!
  • Sheri76Sheri76 Michigan Posts: 483
    I was going to get back with you both before today, but sometimes while using phone to chat here, I'd spent time hitting keys, and then somehow lost all I just typed from doing who knows what.... So frustrating, especially since I'm still not comfortable sitting or laying down for too long. Wished there was a draft save...I know, I could just go into an email or messenger and then copy and paste back here....next time.

    I only have general dr....had hysterectomy in 2009.
    She is pretty good, though I have considered going elsewhere.... think sometimes she's too busy. I asked her to go back and check my previous blood draws when vitamin D levels were low, to see what my blood calcium levels were then, and to what seemed like something new to her, there have been fluctuations with that being high. So, since my parathyroid wasn't checked at the same time my blood calcium level was, it's a possibility I may still have a tumor there, which can be removed, but I don't know if they would remove at this time, because then I would have to take lots of calcium for aa few months, or until my parathyroid starts functioning again. Just speculating here, so just hoping it levels off. I've read being laid up for awhile can cause the hypercalcemia, or high blood calcium level.

    I'm sure you're a great friend to all you come to know, so happy to meet you!
  • I had a hysterectomy too, 2014. So happy about that myself ;)

    Okay, as a non working thyroid person for 35 years, I do have the knowledge bank to help here.

    If you can get to your general, great. If not, an endocrinologist is a gem for thyroid issues. The TSH would be a good test to monitor if your thyroid is working too much (hyper) or not enough or in my case at all (hypo). It's a smart idea to know and new research just this year is correlating hypo to kidney calcification.

    PTH as you accurately noted would let you know if you have a parathyroid issue. And so right on that you noted your vitamin d levels as well. All of this matters to the kidneys.

    Some new research is being done to look at cortisteroid injections and fusion and any link to kidney calcification. None of the online studies I attempted to look at had the entire study available, unless you purchase, which I did not.

    The main thing I noted in all the research is you don't want to ignore any calcification in your kidneys. the deposits are a bi product of something else. I think you are aware of this and are on the right path, I encourage you to contact the general and see what she says. Even waiting for a month is better than not calling at all. And worse case..you are fine! It could just be uti's, which are a pain of course..but one you can handle tough lady. I surely hope that is all it is and support whatever you decide to do.

    Hoping this info was helpful and supportive. Wishing you well!
  • Sheri76Sheri76 Michigan Posts: 483
    Talking about going through other stuff while trying to heal from fusion surgery... I do admit I have toughened up since having my first son back when I was almost 28. The funny to me part, was when I was nearing my delivery due date, and a lab nurse told me to stay healthy, avoid being around people with colds etc.....and I dumbly, and dumbfounded her by questionably saying "Well, you don't have a BAD cold AND give birth...", Ha! The look she gave me was priceless.... So thankful now that she didn't make a loud announcement that big girl panties were needed in curtain #3. Fortunately, I was able to laugh at myself, at least a little, but I found my misconception of reality a bit unnerving. Well, it's a good thing I'm not incorrigible ; )
  • Sheri76Sheri76 Michigan Posts: 483
    Currently I don't have any symptoms of UTI....before my fusion I didn't think I had either, but after taking meds I see I did have some back pain with it, just hadn't made the connection because of the pain from sciatica. And the last time I had the flank pain, nothing showed up in urine, other than a little blood, but it seems I always have a small amount anytime it's checked. So, hopefully things won't develop there again. I've only had about six or so UTI's in my life, and only the first few were the kind that had the pain while urinating.
    I've always suffered with IBS, used to just be the "D", but as I've aged, I go back and forth with that and the "C". If only we didn't have to eat! I am lactose intolerant, milk being the worst. I just drink the lactose free. I occasionally eat ccheese and ice cream, sometimes it bothers me, not always. Have to be careful ...extreme "D" can drain me quickly, in more ways than one....fast route to dehydration, doesn't help the kidneys none. Wished bowels were always user friendly, less pain, and could save on so much T paper!
  • Sheri76Sheri76 Michigan Posts: 483
    And I pray nothing serious for you with your kidneys too. Have your Drs. reported lab work showing hypercalcemia for you also? Was wondering since you've had previous fusions. I asked my surgeon about that being the norm for people recovering from fusion surgery, thinking something to do from bone grafts, she said no, that it wasn't normal, and not something they've experienced with other patients. I was just concerned my bone graft wouldn't heal enough before I go back to work, though I will request another xray mid October. My xray in June showed the bone graft has started, but it didn't look like much, not that I claim to be an xray tech ; )

    My general Dr said the normal parathyroid level indicated the hypercalcemia wasn't from being drawn out of my bones. Although, it's seems like a possibility my parathyroid could be fluctuating along with the hypercalcemia, and if that is possible, then how can it just be assumed that the hypercalcemia isn't from calcium being drawn out of my bones?

    I did see an endocrinologist ***edit**** was an urologist***once after the kidney stones, think in 2011 or 12...hopefully can just call and make appointment there.

    It's amazing how the body works, and what happens when its not functioning properly. In all your years of being on thyroid meds, have you had to adjust your dosage periodically?
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