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What to do with Dad 49yo - multiple issues, chronic pain

Sydney siderSSydney sider Posts: 25
edited 01/21/2015 - 5:11 PM in Chronic Pain
Hey everyone,

I need some advice and ideas on how I can make Dad's life better and what options he might have open.

History:

* Dad is 49 yo, worked as a machine operator (lots of bending+lifting) for 15+ years.
* Had had a history of mild lower back pain that was treated with physio whenever it flared up.
* Had Ulnar nerve problems in right arm in 2013 Sept causing him to lose arm strength and feeling. Performed a ulnar nerve release in the elbow. Recovered reasonably well. I guess the intro to chronic pain started there. His hand recovered and didn't need pain meds afterwards for about 4 months. Cervical issues hinted in Cervical MRI (degenerated discs and pressing on nerves along with stenosis).
* After starting work in Dec 2013 Dad shortly developed SEVERE back problems from Jan/Feb 2014. Lots of lower mechanical back pain, shooting/burning pain in legs causing them to weaken and cramp. MRI revealed bilateral foraminal stenosis in lower back on a few levels most severe at L5/S1.
* He got a nerve root block injection on L5/S1 for relief. It seemed to work. He followed the specialist advice and took time off work to continue physio and resting. He did some swimming as well.
* By March/April the pain had returned despite physio and other therapies. The pain was worse than before and he was growing desperate. He decided to undergo a L5/S1 PLIF laminectomy, rhizotomy and fusion in June 2014. By this time he had suffered a lot and had developed depression and anxiety. This was party due to the fact that our GP failed to provide adequate pain management and Dad tried to endure it and be stoic.

Current Situation:

* 7 months post op from the fusion. Initial recovery and healing went well. Fusion had occurred at the 6 month mark but no union yet. He can do most housework and does about 4KM walk a day.
* Right Shoulder pain and loss of movement started a few weeks ago (Dec 2014) which has cause some of the worry and anxiety to return. It could be a cervical problem. Another Cervical MRI was done and it showed significant issues with the cervical spine. The treating dr instructed nerve root blocks (foraminal) on his right side but that made the pain worse (did not provide relief).
* Recently found out he lost his job which has caused a flare up of pain and depression this week. The pain had reached a level of 7 in scale and we went so far to request hospitlisation. Thankfully it is better today. He got a CT scan done yesterday and it showed up clear. He is getting an MRI of his back to make sure his fusion is going ok.
* Currently his depression and anxiety is growing. Especially after finding out about his redundancy at work. He feels like there is no fix for him and that he is worthless and a burden. He simply keeps thinking about this most of the time in the past few days and crying a lot. We try to comfort him but his pain mixed with his feelings is very overwhelming for him.
* Using Lyrica 75MG twice/day and has had to start taking Endne 5mg twice/day to control the onset of shoulder pain and general pain that has started in the past month. He had given up endone and reduced Lyrica by November when things were getting better.

Questions/Advice needed:

* What is the prospect for my father? It seems there are ongoing issues with his whole spine (cervical and lumbar) and he is suffering mentally and physically. I know there are a lot of people out there who have made do with a lot more pain and issues but Dad just seems to have lost hope. It looks like there will have to be a discussion about further surgery at some time but we are scared to go for it. I often lament the decision for the lumbar fusion. He is so much weaker as a result especially at such a young age (49 yo).

* There is also the issue of not ever finding a clear diagnosis. This is eating him inside because he does not know how things have gotten so wrong with his body. He is type of person that worked hard and stayed busy throughout the day. Right now, he has trouble even lifting and moving (made worse by the shoulder troubles recently) which is frustrating him and making him feel like he is trapped inside his body with all this pain and inability to get better.

* My next course of action is looking to get him into a pain clinic that can offer him advice and treatment through a multi disciplinary approach. Right now he has separate physio (works hard for Dad) and psychologist (who isn't the best for his condition I think) but I think a pain clinic might be able to help him deal with accepting the chronic pain and manage his pain better.

* Secondly, I need to get him into hobbies or better yet some sort of part time work/volunteer job. I think without work or staying busy he will go mad.

Thank you for reading.
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Comments

  • Unfortunately, that's all you can do for your Dad. The rest is up to him....

    In the grand scheme of things, 7 months is not a whole lot of time for any kind of fusion recovery, so I think you may be a bit premature to question the decision to move forward with it.... Give him a couple of years before thinking anything along those lines as his recovery is still not over, especially with the possibility of another on the rise...

    When feeling down, deflect. Go for a walk and talk.... GET HIM OUT. Release those endorphins. Help him to see that things can (and often do) get better or at least offer him that hope through verbal communication. Unfortunately, things do get worse before they get any better and there is a roller coaster effect down that road to recovery... Yes, there will be ups and downs along the way (I am 12 months post 4 level cervical fusion and I still have a ton of work to do).

    I feel for your Dad as I am in his shoes... Many of the people here are in his shoes too, so you have reached out to the right crowd. You are already helping your Father, so be proud of who you are and don't let this destroy you either.

    If there is anything you need, we're a message away....

    -Dougie


    A lil read before I go...

    Are you afraid
    Afraid of the truth
    In a mirror staring back at you?
    The image is cracked
    But so is the view
    And the strength of a tree
    Begins in the roots
    That I tend to bury into you
    At least now the storm
    Can't blow me away...
    Realize that FEAR is our worst enemy. Get up & get out in that stormy weather of the real world & kick fear in the teeth. Stare at it dead in the eyes & walk right through it into the storm; because once you're wet, you won’t fear the rain anymore
  • swayesswaye Posts: 5
    edited 01/29/2015 - 3:42 PM
    Wow - your father's scenario is so similar to mine. I have been dealing with back pain on and off for 20 years. I had a laminectomy at 30 years old and did well for many years. Shortly after having my daughter, I re-herniated that disc. I waited 8 years before finally deciding to have a lumbar fusion in November 2014. I have also been dealing with neck, shoulder and hand pain on and off for years. I think once you mess up one area, other area's of your body compensate and then they end up in pain down the road. I would highly suggest getting a Pain Management doctor in place for him as soon as possible. I have had the same doctor for 6 years and we have a good trusting relationship so I don't have to worry about getting adequate pain relief. I would make appt's with one or two to make he gets the right person. If the pain is chronic, it will be a long term relationship.

    I have also done all the nerve burning (7x's). The area will feel better for awhile and then the nerves come back hotter and angrier than before. I seem to do the best on Lyrica and having a Butrans patch for 24 hour pain relief. I find that it is so much more helpful than pills and allows me to exist somewhat as a normal person. It has helped me break out of the depression cycle of pain which I think a lot of people get stuck in. If a person is dealing with long term pain, at some point they have to go through the acceptance phase that they will never be the same and they may have to take medications long term in order to have some sort of life. Staying in high levels of pain is never good for the mind and everything will suffer.

    I have found the best thing for nagging neck pain that goes into the shoulder's is trigger point injections and massage therapy. My massage therapist pulls and stretches my neck and shoulder blades out and that really helps. I also get trigger point injections at the pain clinic. Sometimes with lidocaine and sometimes with cortisone when I have a big flair up. It is always hard for the doctor to determine if it is coming from the neck or my muscles due to referred pain. It can get very tricky and some people will say it is referred pain from the spine while others will say it is fibromyalgia. Sorry for the rambling thoughts but I hope I am offering something that might help. It is comforting to know that you are never alone and chronic pain is so hard on the patients and their families.

    swaye
  • Just to touch up on Swaye's post....

    Another option is acupuncture. It works well for me. 2 trigger points at the base of the skull work wonders for me.....

    -Dougie
    Realize that FEAR is our worst enemy. Get up & get out in that stormy weather of the real world & kick fear in the teeth. Stare at it dead in the eyes & walk right through it into the storm; because once you're wet, you won’t fear the rain anymore
  • itsautonomicitsautonomic LouisianaPosts: 1,952
    Man i feel his pain, anyone who worked hard for what they have to have it taken goes thru this. The guilt, the worthlessness, the feeling of burden. When people think about post tramatic stress its often only in terms of war, but so many things can cause varying levels of these types of things. I think the key is what you talked about, getttign the correct diagnosis. It all began with ulnar nerve surgury it seems, and issues all over after that may/may not been there. Ulnar nerve surgury is notorious for causing types of exaggerated pain conditions such as CRPS, or central sensitization syndrome.
    I too ask how my health ended up so badly , worked hard, took care of self etc. It is tough road. And swaye is right untreated high levels of pain changes a person for the worse
    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.
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