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Alone and Needing Back Surgery-need advice

Discussion in 'Pain and Inflammation' started by LucyLouWho, Aug 22, 2018.

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  1. LucyLouWho

    LucyLouWho Senior Member (Voting Rights)

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    This Thursday, almost two weeks ago, I threw out my back, I thought. I slithered to the floor. I knew I had a herniated disc, but I didn't know how bad things were. I have had a herniated disc for a year and a half now. That night, I had to pee constantly. Very quickly I realized, I had done something horrible and life changing.

    I forced my way into my orthopedic doctor (he was leaving on vacation and had no room). As soon as I came in the office and patients knew I was not well as I scream regularly, everyone stopped what they were doing and tried to help me. He saw me and decided to fit me in. He took one look at me and said, "You will need surgery. I am glad you came in. You absolutely should have squeezed your way into my schedule. You did the right thing."

    I have seen him for 13 years and he has never recommended a back surgery. He would do whatever to keep me from not having it, but I am contorted, unable to stand upright, I have no reflexes in the one leg and I can't sit really. I can't hold my urine.

    I had to have an MRI and an x-ray. The x-ray almost killed me.

    As time goes on, I can't sit on the toilet. I have to pee in a cup standing up. I can't get up out of bed. I am going to order diapers so I don't have to get up due to the pain I have.

    Today I had to call 911 because I woke up and couldn't move. I see the surgeon tomorrow. The EMT was horrible to me. I was to go to the hospital but I needed to bring my thyroid medication...T3 and he would not allow it. I said, I have no thyroid. I must have it. He said no. I said I am not going then and he said fine and left me in my apartment, underwear off unable to stand without assistance. He came back in and said, "okay, bring your thyroid medication," but I was done. I wanted him out and I called the ambulance here and reported him. Plus, they wanted me to walk down three flights of stairs to get to the ambulance. Um, what for?

    I don't know if anyone remembers my wrist surgery, but it was the most traumatic experience I have ever undergone. I am Misfit Toy on PR. I was so sick and I had to fight the entire time I was in the hospital.

    I am scared of the same thing happening.

    I have no one who will take me. I put an ad up on a local board asking for help to the hospital and no one answered. People said they would take me to my doctors, but not to the hospital for back surgery.

    I don't know when the surgery is but I am scared to death. I live on the 3rd floor. I need a ride there and I can't imagine going through this alone. Both friends will not help me. I am devastated and thinking of tossing them out as friends. Fucking assholes. Who says no to someone who needs back surgery? Then they email me to ask how I am doing. I am doing great, thanks for asking.

    Does anyone know of a way I can get to the hospital? Are there services? I need to hire someone to be with me, but I think it costs a pretty penny to have a health care advocate.

    I am devastated by my situation. If I had heroin (never done it) I would overdose on it just to get out of this awful predicament.

    Please do not try and scare me out of having the surgery. I am way past that. I can't function at all. A wheelchair would not even be acceptable as I can't be in this kind of pain. I need help. I try to tell myself, could it be worse than this if the surgery goes bad? I guess the answer is yes, but I am peeing on myself and can't sit on a toilet or get in and out of my car or function. At all.

    Does anyone know what a patient who is alone does in these circumstances? This is my fate. Surgery after surgery alone. Third surgery now alone in three years. Wrist, thyroid and now back.
     
  2. WillowJ

    WillowJ Senior Member (Voting Rights)

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    Are you in the U.S.? Do you qualify for Medicaid? Medicaid offers “longterm care,” which is an aide who will help with bathing, housechores, etc.

    Medicare offers short-term skilled nursing or PT care, especially just after a hospital discharge. They don’t cover other care if you don’t require a nurse/PT.

    Medicaid also has transportation to medical appointments. They will loan you a wheelchair and push it for you, if needed. I imagine they cover ambulance services with a guerney, too. There are programs which would cover copays for an ambulance transfer. (And prescription medications, if that would help.)

    It’s either free or on a sliding scale. There’s paperwork to qualify.

    There’s also a thing in many cities called paratransit service. If you can’t ride the bus for some reason (can’t walk between stops, can’t navigate, etc.), they will send an accessible bus to your door, and drop you off at the driveway of your destination. Or walk you inside, if you qualify for “hand-to-hand service “. There’s probably an interview to qualify. I doubt it would be much help prior to surgery, but perhaps after.

    Best place to start may be your local Area Agency on Aging. Even if you don’t financially qualify for all the programs, they’ll have a list of volunteer and reduced-cost (“low-cost” looks enormously expensive to me, but I qualify for Medicaid) organizations. The volunteers may be a religious organization, just so you are aware.
     
    Last edited: Aug 22, 2018
  3. LucyLouWho

    LucyLouWho Senior Member (Voting Rights)

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    @WillowJ -hi. I am on SSDI and I do not qualify for medicaid. I will see if I can find anything and thank you. The hardest thing with all of this is I am on heavy pain meds, which makes it even harder for me to get anything done.

    What you provided could be a great resource. Thank you so much!
     
  4. erin

    erin Senior Member (Voting Rights)

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    I'm sorry that I know nothing about your inquiries.

    So sorry to hear this happened to you. I hope you get the help and the surgery asap. Will be praying for you and for your recovery. I don't know what else to say.
     
  5. andypants

    andypants Senior Member (Voting Rights)

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    I’m sorry you’re going through this, @LucyLouWho :(
     
  6. Hell..hath..no..fury...

    Hell..hath..no..fury... Senior Member (Voting Rights)

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    I’m so sorry you’re going through this again @LucyLouWho

    I know how traumatic hospital is, my heart goes out to you :cry: I hope you find a way to get through this somehow.

    When your operation is a success and you can move again, give your friends a kick up the ass from me :mad:

    We’re all with you in spirit and wishing you the best possible outcome :hug:
     
  7. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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  8. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    LucyLouWho likes this.
  9. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    Do you know if the hospital will be discharging you to a rehab facility? That is often the case. If so, they should keep you until you are able to care for yourself.
     
  10. Gingergrrl

    Gingergrrl Senior Member (Voting Rights)

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    I just posted an update in @LucyLouWho (Misfit Toy's) thread on the other board but also wanted to reply here since you tagged me @AndyPandy to let everyone know how she is doing. @LucyLouWho ended up calling 911 a few nights ago b/c she was in severe pain and couldn't move. She is in the hospital now and will be there over the weekend.

    I'm going to call her tonight or over the weekend but she said they are treating her well in hospital, she is on pain meds, and that they have gluten-free food for her. She'll have another MRI (b/c the first one was inconclusive) to see if she has a ruptured disc in her back and also had an x-ray. She said that a neurosurgeon came to see her and they are still trying to determine what exactly is going on.
     
    Last edited: Aug 25, 2018
    Joel, TigerLilea, MEMarge and 17 others like this.
  11. Trish

    Trish Moderator Staff Member

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    Thanks for the update, please give her our best wishes.
     
  12. erin

    erin Senior Member (Voting Rights)

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    Thank you @Gingergrrl, if you get a chance to speak to her and if it is appropriate at the time please give our regards and speedy recovery wishes.

    I can no longer sign in to the other place as they changed something after the last upgrading their system and my browser won't allow me. I use a very old version and hate to change it.

    I wish I can sent her a card though it is a very long war from where I am.
     
  13. Gingergrrl

    Gingergrrl Senior Member (Voting Rights)

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    I hope to talk to her later today and will tell her that all you guys from both boards send your best wishes. @erin, did you want me to ask her about sending cards?
     
    erin, MEMarge, ladycatlover and 10 others like this.
  14. LucyLouWho

    LucyLouWho Senior Member (Voting Rights)

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    Thanks everyone for inquiring and checking on me. I know many do not go over to the other site so I will make this quick over here. I am home and the only thing working for me right now are the meds. I am on so many medications to keep everything in a better place. Dexamethasone, flexeril, Percocet, valium, ibuprofen and I am sure I am missing something.

    The hospital was great, the doctors were caring, but they do not believe I need surgery. I have two bulging discs and I have a report at the bottom of this post. I am perplexed as my left butt cheek is in so much pain with sciatica and then it radiates into my leg. I clearly have some sort of nerve situation that is hurting me so much. I reached out to a spinal surgeon today as advised by the physical therapist at the hospital and they took one look at my MRI and said, NO. She is not a candidate for surgery. It makes no sense to me.

    I can't move at times I am in so much pain. In 1995, I had a bulging disc and had a laminectomy surgery and my drop foot went away. It was a bulging disc. Why have things changed things with what is regarded for surgery?

    Anyway, I am trying to be optimistic but I am angry. It's not good how angry I am. I am angry at my friends, at my body, at all doctors and yeah...not good. I had no friends come to the hospital. One said she was going to visit me tonight at home or the hospital and then totally blew me off. I do not get it. She called me to see how I was, I never even let her know I was in the hospital. People are cold and uncaring. Ginger....Ginger called me. She was kind and has so much going on with her yet took the time to let me know she cared. I have never met Ginger and she did that. My very friends could not do that. (I will get past this.)

    I slept the whole time I was in the hospital. I just died in there. I was so exhausted and the meds...BOOM.

    So, yes and thank you. My report is below. There is more to it including that I have a very large fibroid. I am also wondering if that could cause pain. I go see my PCP tomorrow and and I am going to ask.

    Thank you everyone. I appreciate it. I think it's interesting that it shows severe narrowing to the left. Yes that's right. To the left, where my left bum cheek is and my leg is numb...left leg.



    There is a disc desiccation and narrowing noted worst at L4-L5. L1-L2 shows facet inflammation. L2-L3 shows facet inflammation. L3-L4 shows a disc bulge that are contributing to SEVERE left and mild right narrowing and moderate left foramina narrowing. L4-L5 shows a minimal disc osteophyte complex and facet inflammation contributing to bilateral narrowing and moderate bilateral foramina narrowing. Ls-S1 shows inflammation in facets.

     
    Last edited: Aug 28, 2018
  15. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I'm sorry you are having such an awful rough time. Thank you for letting us know how you are doing. I don't think it's surprising that you are feeling angry. I hope your pcp helps you make sense of everything and is helpful.
     
    erin, MEMarge, ladycatlover and 8 others like this.
  16. Lisa108

    Lisa108 Senior Member (Voting Rights)

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    I already wrote this on the other board, but just wanted to emphazise that having neurological signs caused by herniated discs (loss of bladder control, atrophied muscles) is seen as THE indicator for immediate surgery in Germany. These signs would overrule any imaging technique's findings. It's the symptoms that count, not the images.


    I keep my fingers crossed that you'll find a doctor willing to treat you soon! :nailbiting::banghead::hug:
     
  17. LucyLouWho

    LucyLouWho Senior Member (Voting Rights)

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    I did see this. Thank you. I know, it shocks me. I need to move to Germany and for many reasons. It seems like good health care is there. That is so weird. I wonder if it's all about money in the US an not wanting to pay for surgeries.

    My doctor will be in touch with a surgeon he knows and I will go from there.

    He really wants me to be seen by a surgeon. I am coming off of the steroids slowly and worried about that, but for some reason my pain tonight was not too bad and I am wondering why. What happened? This..this worries me and makes me wonder if it has anything to do with the fibroid and hormones. I looked up that fibroids can compress nerves so I wrote my doctor to get an ultrasound of it.

    I need to know where it is and what is it's size. Endometriosis brought on horrible pain in my spine years ago, so this fibroid is making it confusing. But, it may be just some freak thing caused by God knows what.
     
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  18. Lisa108

    Lisa108 Senior Member (Voting Rights)

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    Not for ME/CFS patients, though... sigh...

    I hope you'll figure it out soon what is causing the compression of your nerve roots! And have it fixed. :emoji_four_leaf_clover::emoji_four_leaf_clover::emoji_four_leaf_clover:
     
  19. LucyLouWho

    LucyLouWho Senior Member (Voting Rights)

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    Thank you, Lisa. I hope so, too. It is a bit of a mystery. It's the back but it's also somehow my insides. My stomach is so distended, I could pass for being 4 months pregnant. I noticed this last week and it's not gone away. I thought it was my back, but now I am wondering.

    My sister died, at my age, of colon cancer. I am not saying I have that. But, I remembered that she went into the hospital with horrible pain in her back. Screaming pain. She kept telling everyone that her back was killing her. It turned out that the cancer was all in her colon and pancreas.

    I need to try and see a GYN and a gastro doc. This is so much work as it takes forever to see one. Months.

    But, I am going to get on it. I have to.
     
  20. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    Yes @LucyLouWho

    You are wise to get onto the gastroenterologist and the gynaecologist.

    Best wishes Andy
     

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