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Questions for those who have "Been There"

It's been a mess because I had thought I could avoid more surgery with good pain management. This has been wonderful but being out of pain does not mean that I can do all those things I need to do. I have issues with my neck and with my lumber spine. The whole Illio-sacral area is inoperable due to severe arthritis, joints fusing that shouldn't be, and, of course, I was born with a congenital issues with my hips and pelvis. (Sorry, I have all the words but once my pain meds kick in I feel more comfortable asking for support but I make less sense!)

I mostly experienced positives with my lumbar surgeries. No one told me I'd lose feeling in my toes- that's okay but I would have liked to have known. I've also had three knee surgeries. I was left with a bunch of weird issues there. I have lymphedema. My left leg always looks 2 sizes larger than my right leg. I knew there would be a bad scar but I didn't know a nerve would be severed and the pain that is from that- 12 years later! I can no longer kneel- when I think about putting my knee to the floor I pass out. Don't know if it hurts or not- I have never gotten that far!

So with my neck. The severe stenosis is c6-7 but also with several of the thoracic disks just below that. Those who have had fusions, have you been able to turn your neck? I cannot now- people yell at me for being rude but it's painful to keep looking back, turning my head to try to remain engaged in conversations. Can you drive? Back, 10 years ago when this started I remember it getting more and more difficult to look behind my car. Do you have a scar in front of your neck or in back- or both?

For me, the scariest thing is going this alone. I know many of you would offer to help out but I'm one of those people who doesn't accept help easily. I've been on disability for almost half my life so I cannot afford to pay people. I cry myself to sleep some nights because I get afraid someone will say I cannot take care of my dog and cats. I would prefer to run to the woods and live with those guys- the heck with humans! I also have Celiac Disease which makes it almost impossible for people to shop for me, cook for me........ they definitely mean well but I cannot have any mistakes there!

I feel the depression sneaking in. I want to be left alone but I need others to help. I have zero family but lots of friends. Problem is, I have busy friends- people with new babies, people who are doctors and travel a lot. People who I don't want to bother.....
How do I get through this? (I'm on medicare but trust me, the co-pays and deductibles are going to bury me!)

Thanks- even just writing this helps

Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)


  • SavageSavage United StatesPosts: 5,459
    I'm glad you know we are here for you!

    You have so many issues going on to deal with. And such a limited amount of "spoons" to work with.
    I, too, usually been the one to help others, ...I too had to learn how to ask for help, as my life of pain became more challenging.

    I have asked a friend of mine for light clean my house few times...but so difficult to accept her assistance.
    But the next couple of times were easier, and she made it easy for me, too. Like it truly was no problem to her.

    Another friend to occasionally grocery shop or pick up meds.
    They offer often, but I, too, struggle with wanting to be like a full time job to them.
    With my close friendships and our talks, Ive been reassured that they will speak up if any of my requests are inconvenient.

    That may be same for you. Your friends may want to do things, anything to help ease your daily life, but don't know what to do. They may also come up with some ideas of other resources available for you.

    Have you ever spoken with a social worker for ideas of resources available to you?
    The hospital social workers may be more helpful with dietician guidance for your special diet and your need for assistance...maybe meals for freezer to last a while....?

    Maybe referral from your GI doctor , to continue stability provided by diet.
    I'm sure she doesn't want her good work complicated either.

    My social worker is from my township and very helpful to me, as so much out there to help me I was so unaware of.
    Some things available to me, free of charge, someone to drive me to doctor visit, grocery store, pharmacy, etc....

    And someone to come in for light housekeeping.... I didn't ask about the meals.
    I live off of frozen microwave meals...only ever using my microwave and toaster oven.
    All I do is dust my stove and the burner covers!

    I, too, live alone and on disability income, to say that I share in many of your feelings ....and struggles.

    I certainly hope you find relief to many of your struggle quite soon!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • Bruce EitmanBruce Eitman Akron, OH, USAPosts: 1,154
    I just have cervical problems. But I know what you mean about asking for help - something that I had to learn to do also. So many friends want to help, and I learned to say yes.

    My incision is in front (surgery 2013 and 2015). I can turn my neck, but less that I used to. I drive, but have difficulty when needing to really look over my shoulder. So I do drive a bit slower now...

    My mother's surgery was in 1984, hers is in back. She turns her body a lot more than I do, so I don't think she has much neck movement at all.

    Spine-health Moderator

    Read my story at Bruce - My Story
    ACDF C4-C5-C6-C7, and getting better every day
    It has been a process of healing, learning, exercising, and resting - and figuring out when to do which.

  • itsautonomicitsautonomic LouisianaPosts: 1,807
    I hate that so many have to suffer with so much pain. Sorry to hear depression creeping in and some things going downhill. I hate asking for assistance also
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    Getting responses on here to my questions helps so much!

    Last night while I was feeling uninhibited because of my medications I emailed my primary doc explaining my confusion. Because all my referrals had been done by my pain doc who is, as of yesterday, working at a different hospital in another state, my bridge to the surgeons is now "swinging in the wind" so to speak. My primary care doc said she would talk to her office's patient advocate to tailor a path for me! Huge sigh of relief! It was this primary doc who first prescribed a service dog for me so she's pretty good with the non-traditional ways of being outside the box. Actually, next service dog is definitely having the upgrade to opposable thumbs!

    Today I was out walking with my dog and so many people stopped to say that I hadn't been by to...... far too many people expect me to do things that others just don't do in the neighborhood. I had to remind them that I have days when I don't feel good too. One person went as far as to ask if I could stay and do something for him. He could drain Niagra Falls dry but I just said "no" and left it at that. Learning that some people are just not going to understand that I have limits.

    Thanks so much for the support!

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    Received a call today from a surgeon's office, one my primary care doc liked.  I had received a call from the patient advocate the other day that I needed to call the surgeon's office, make an appointment with an assistant to do a screening, having all my imaging go to that office, get my records from pain management.....

    Today the call was for me to be at their office on Monday at 3:30pm.  I've seen the MRI report and it's not as if I'm experiencing internal decapitation...  What concerns me is my first back surgery.  I went to doctor after doctor and each told me I was med seeking, etc.  Then I finally saw a doc who insisted they operate that night.  The surgery went very well and all was fine but I'm more comforted by the "We'll see you at the end of the waiting list".....


    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • SavageSavage United StatesPosts: 5,459
    edited 02/07/2016 - 6:05 AM
    Hi Sheila!
    Best of luck with your soon to be surgical consult!
    I can understand the uncertainty of the unknown, esp as it moves quickly....and the need to take it a day, or minute, at a time.

    Please keep us posted!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    I had one of the worst appointments with a really bad doctor.  I'm not sure how he is as a surgeon but as a doctor- bad.  They had an incomplete history since they never asked- the surgeon and the resident.  One idea was for me to stop all my pain meds so they would be effective "after surgery".    They have no idea that the pain meds are for other conditions than my neck.    Essentially I was told to go home, lose weight, get a job.

    Pretty much like it was back when I was in my 20's. 

    And stress is great for pain too!


    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • Sheila,

    Like the others, I fully understand what you are going through. My profile lists my ailments, so no need to go through them here.

    With my neck fusion, yes it is difficult turning the head or look up and down. Even shaving is painful! :'(   Fortunately I can still drive, but instead of turning my head to look behind me I twist my torso. To answer your question, my scar is in the front of the neck.

    One thing I do to fight depression is my hobbies. I find when I am doing something I enjoy the depression is completely forgotten. Maybe this would help you as well. Another thing that helps me fight depression is to not worry about the tings I can not change and only deal with what I can control.

    I wish you the best and hope things improve.

    View my history for all the gory details.
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