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Feeling like NO ONE LISTENS to me

Hi everyone.

Maybe I’m feeling sorry for myself but I really need someone to listen that understands. In 2007, I had a L4-L5 multiple level micro discectomy from left leg pain. At the time, I was having mild left arm pains. The doctor said let’s address the lumbar first. The cervical would require going into the neck, etc. I dropped it, scared of that scenario. Fast forward to August 2012, I had cervical fusion on C5-C6. The arm pain had progressed to the point I had to drive with left arm hanging. For the fusion, they had to take bone from my hip, because I am a smoker, a dirty and hopeless smoker (that’s a whole other can of rotten worms). The fusion, bottom line, was a terrible and painful experience, but I finally made it through to recovery. About a year later, arm pain has slowly crept back. I have occasional electric pains shooting into ring and small finger, mild sporadic cutting pains, and daily muscle aches & spasms that vary in intensity. I complain to my PM doctor and Primary but pretty much live with it, for now. In addition, my left leg pains have crept back in recent years. It also varies in symptoms depending on the week. About 2 weeks ago, I was on steroids for a URI. During that time, i felt ten feet tall and bulletproof. Started moving bins around my Mother’s house, who passed in June. I’ve needed to get her house cleaned out for months so I can sell it. It’s been a “thorn in my side” since I can’t seem to get it done because of ongoing pain & disability. So, I moved some bins and drove 2 hours after. The next 3 days my left leg declined, to the point of screaming in agony. Had stabbing in buttocks/hip area, pain running down thigh, pain into front of calf area, burning down front of calf to sensitive to touch now, throbbing, random flares up & down leg. Went to ER, they did MRI and CT scan, gave me more steroids & anti inflammatories, sent me on my way with advising to follow up with primary. Went to primary, he played it down since I could stand on top toes. Advised follow up with PM and PT prescription. Here’s the kicker...I forgot the CD of radiology scans, but he said he didn’t need them that he could tell by my walk that I didn’t need a neurosurgeon referral. He sent me on my way with a PM follow up and PT prescription. Yesterday, my PM doctor said “you need a neurosurgeon consultation, ASAP” after seeing scans. Told him what happened with Primary and he was taken back. He said your nerves are compromised severely and bone spurs are narrowing your stenosis severely with this severe left paracentral herniation. There’s that severe word again. He sent me out saying he would get injection approval with insurance and advised to call a neurosurgeon. Even brought my husband in so the doctor could repeat this to him. Now I have to wait to have someone to drive me 3 hours back to the primary to take my CD and hope for a neuro referral. I tried calling a local doctor but told since I’ve had multiple surgeries, I need to go back to the original surgeon. That “clinic” of renown surgeons is 3 hours away! No one else, at least with a great reputation, wants to touch me.

Very very long story short...I’m so exhausted from this Spinal merry go round that won’t stop. It’s taken over ten years of my life away and wants more. Seems no one takes me serious or listens anymore. I told everyone TWO WEEKS ago this was serious. I’ve never had it this bad before and I have lots of experience. I don’t have the energy or mindset to keep chasing these doctors. My husband doesn’t understand. I’m at my wits end. Please help with words of understanding and advice. I need it badly.

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1

Comments

  • Don't let other people get you down!  We all control our own destiny, although it may take some kicking and screaming to get what you want!

    First things first; I would start a diary/log immediately of everything that has happened along with the pain you're having and any triggers you have.  Take that with you when you go to your appointment.  Make sure you have your referring physicians notes for the Neurosurgeon to see what your doctor saw.  Might as well ask to get a copy of a CD with the MRI study on it because most surgeons want to read the views themselves.

    Next, I'd have a family meeting and make sure everyone knows what's up, what you're doing about it and what they can do to help you out...even if its just emotional support.  If the surgeon recommends a procedure, make sure your family knows the level of assistance you'll need post op.  I was simply amazed after my fusion of just how badly the pain hurt and how much I was going to be relying on my family for a while.

    Take a deep breath and tackle each obstacle one at a time.  Celebrate each successful step you make!  Let us know how you're doing!  

    Keith

    Several Epidurals, L4-S1 360 ALIF, Numerous Facet Joint Injections, RFA x2
  • I just want you to know I understand and my heart goes out to you. Things will get better, we have to believe that, and tell ourselves, as hard as it is in the moments of complete despair. Things will be better.

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  • I'm sorry to say don't have any sage advice.  I've had debilitating pain for 34yrs. I haven't found a doctor yet that is worth 2¢. One tells me"nothing can be done for you because you have too many things wrong"

    Another's says, "your spine doesn't actually look that bad" and everything in between. I love how they always get around to the mental attitude thing, making you feel like its all in your head. There's not much real doctoring going on.

    When you are in so much pain that its all you can deal with, its virtually impossible to be the one to look for all possibilities and then bring them up to the doctor to consider. They don't think about seeking answers for you. That's your job I guess. 

    I pray you get the help you need.

  • EMS Guy

    The “kicking and screaming” you suggested has worked. Sent an online portal message to my Primary physician about how the pain and symptoms had increased since our visit. Also, told him what my PM dr said. Told him I needed a neurosurgeon referral within the “clinic” of doctors I’m in or I would be in a position to find one independent. He sent an order for a Spinal Clinic review, which is required before a Neurosurgeon appt. Have an appointment Monday with a Physiatrist/Physical Medicine & Rehabilitaion Doctor. I’m not happy to be in this position but relieved to be one step closer to getting an option for this pain. As far as the family support, my husband has been trying harder to help me. He finally sees the distress I’m in. We live 3-19 hours from other family to help, which is another reason this is so hard on me. Your words help, thank you.

    craigv23

    Thank you. Your kind encouragement and understanding makes this stranger feel better. Wishing you the same.

    faithwillwin

    Your response and experience are exactly what I needed to feel comfort in the sense, someone else understands and I’m not alone in this fight for health. You aren’t alone either. Keep going as EMS Guy recommended to me. Sooner or later a health professional will listen. My primary is very anti-surgical intervention. He will straight up tell you that. He was fighting me before my cervical fusion on a neurosurgeon referral. After that surgery, I was told by the surgeon, after going in and seeing the condition of my neck, he couldn’t understand how I waited so long. Leads me to the fact, only we know when there is a real problem. I’m so sorry you’ve been dealing with your problems for way too long. Can’t imagine. You are in my prayers.

  • Fight to get things the way YOU want. Persevere with kicking the doctors up the butt! Keep on to them.

    You are not alone here. You have many friends here.

    Controlling the pain is number one priority. Hope all works out for you.

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  • koolpc

    Thank you so much for replying. Even though my appointment is 36 hours away, I’m trying desperately to control my pain. The meds help but I also use lots and lots of ice...that really helps. Try to roll on a tennis ball when I can for the spasms that come with positions I try to maneuver myself into to get a spinal stretch. It’s been a bad day today. Asked my husband earlier what have I done to deserve all this pain and suffering? I honestly feel that way today.

  • Met with The Physiatrist who got me right in with the Neurosurgeon today. Looks like I’m having a microdiscectomy for L5-S1 large right side herniation. Feel better knowing my pain was acknowledged and have a plan to feel better. Thanks all for your support!

  • Nice one. Keep us posted

  • I second the suggestion about keeping a diary  that Keith made initially. It will help keep your “team” - yourself, your spouse, and your doctors on track and informed. It’s been amazing to me how little doctors actually talk to one another or keep each other up to date after referrals. It’s important to stay proactive as much as you can. Hoping all went well with your neurosurgeon. 

  • Followed your posts and was checking in to see how your surgery went, hope you are doing well, showing improvement!

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