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Failed ACDF surgery - now what?

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Posted 8/8/2016 9:34 PM (GMT 0)
Hello everyone again,
I am back with bad news. As a reminder I had C4-7 ACDF two years ago. Wore the bone fuser for six months and neck brace for four months. Got better then got worse and continue to have debilitating pain. Went on disability retirement earlier this year.

Went to see neurosurgeon at the prompting of my PM doctor. Had a myelogram on my neck (a nightmare of a procedure) and we confirmed what the X-rays showed. I am not fused (pseudoarthrosis) at C6/7, T1 has moved because of it and worsening foraminal stenosis above that area. But the surgeon said nothing life threatening so I do not HAVE to have surgery and he thinks the risks for an iffy outcome are not worth it. Also, my osteoporosis is worse (probably a genetic thing) that would likely make additional surgery fail. I felt completely dismissed.

Everyone I have talked to says don't have the revision surgery. That 30% of the patients come out better, 30% same and 30% worse. I would probably be worse based on what neurosurgeon said.

So, what do I do? Any suggestions? Just keep taking pain meds etc? I know my whole spine is falling apart but this news is upsetting. https://www.healingwell.com/community/emoticons/confused.gif

Any suggestions (please not creams, acupuncture or massage)... confused confused
Posted 8/9/2016 3:27 AM (GMT 0)
Just wanted to say Hello, I'm so sorry. Wish I had suggestions.
Of course, this news is very upsetting. With your history it sounds like surgery is probably not going to help. But who knows what the future holds. Someone may be working on something new right now that will help you. So what is there in the waiting time? Is a pain pump a possibility?

Thinking Fusion does not always make it happen. But you have been here many times to help me and others-thank you for that!

I'm still getting by ok. I'm stiff but not much pain unless I overdo then just sitting a bit is a relief, so nothing much has changed. I've driven more just recently and really miss being able to turn easily. It's not kept me from enjoying life. Two more grandsons were added recently, so I will be getting acquainted with them soon.
Posted 8/9/2016 5:05 AM (GMT 0)
Wish I could offer up advise, but I agree with Abilene, you need to maybe ask about a pain medication pump...until medical sciences advances more that might be a starting point for you...I'm sorry your having to go through this failed surgery. You might want to get a second opinion from another surgeon if possible, if you were in South Houston I'd say go to Dr. Westmark...best neuro in this area..
You have my prayers and well wishes...wish I could've helped better...
Posted 8/9/2016 5:25 AM (GMT 0)
TN just popped on & saw your post. I am so sorry to read your news but do remember your surgery was not something the surgeon could give excellent results after surgery. Seems you had some issues such as osteoporosis & he wasn't sure you would fuse.

I don't like to come across sounding like an advocate for pain pumps because they are not for everyone, but its sure something I suggest you look into. Go to Medtronics,com read up on them there also check out TameThePain. With what you have going on it may help restore some quality life to you & make things easier on the liver.

Talk to your pain mgt dr about after reading about them. Let us know how thing go. Take care.
Posted 8/9/2016 2:54 PM (GMT 0)
Taller Now:
The science and art of medicine cannot fix everything that may ail us.

I am sincerely sorry to hear that your bone fusion was unsuccessful. It is difficult to wrap one's head around the knowledge that one's body is failing.

Give yourself the gift of time to let this news soften and decompress. You will find a way to go forward.

I have stage iV avascular necrosis of both of my hips, the result of prolonged use of glucocorticosteroids. I am not a candidate for total hip replacements as my accompanied bone density is too poor (4 standard deviations below the mean, meaning only 1% of individuals have a bone density worse than mine).

I am a former marathon long distance runner. The loss of being able to walk freely has been the most difficult loss for me to process emotionally.

I also struggle with profound endocrine failure due to a pituitary tumor.

I continue on. I do what I can do. Adapt and adjust. My life is small in scope. It is not a life that I would have hope for myself but it is my reality.

I have learned that unrelenting pain is my most vulnerable point. I can deal with the loss of mobility, the loss of range of motion, the difficulties with activities of daily living . . . but if my pain level is high I decompensate on many fronts.

If you pain can be moderated, I think that you will be able to address your future. The idea that others have suggested to look into an implantable pain pump is valid advice.

All to say: You will find a way to process the unfortunate news of your failed fusion. You will find new focus in looking at the things that you can do and find hobbies/interests in those areas where you are able.

When I feel defeated by the failings of my body, I remind myself of all that my body is doing well . . . I am still able to stand and walk (albeit for short and limited distances); I can speak and write and think and express myself; I am able to dress myself, shower, and toilet myself - these are significant losses for those who lose self care skills.

Take time to remind yourself of all that your body is doing well. The fusion is only one small part of who you are.
- Karen -
Posted 9/13/2016 3:11 AM (GMT 0)
Thanks everyone for your replies. I apologize for taking so long to reply back. Our internet has been on and off and then I got distracted with just coping day to day etc.

I have talked to my PM about a pain pump but because I have severe pain in both my neck, low back and down my legs it would only help neck or lumbar but not both and I would still need medication for the other and then they don't like to do that. So not an option until they figure out how to get a pain pump to be helpful for than one area of the spine.

I am going in for an occipital nerve block at the end of the month to see it that helps with some of my base of skull pain.

I know that it is all about coping, accepting and managing my pain now. I do okay with all of that thanks to my pain psychologist. But as you know there are good days and not so good days.

I just got past three weeks of severe neck pain where I was really wondering if I could endure. Thankfully after digging through my meds a couple of nights of Valium broke the pain cycle. Of course, doctors don't prescribe that anymore but I will see if there is a muscle relaxer I can try in the future. Flexeril and baclofen don't work for me, any suggestions?

Karen, I am sorry about your situation. It is the time of severe unrelenting pain that makes it hard to know how to continue. Any day I do much, go out to dinner, or even just grocery shopping can incapacitate me for the rest of the day or several days. I do my best to pace and take a lot of pain medication to enjoy things like a dinner out, but it just gets hard; hard to enjoy anything when you hurt so darn bad all of the time. I have lived with migraines since I was a teenager, a bad low back since my twenties, and then all my issues escalated and got serious after a car accident in 2005. My hysterectomy was no big deal, a broken ankle caused what I would consider low pain, etc. my pain threshold is high.

Abilene, good to hear you are doing okay! And congratulations! I too have two new grand babies (girls). Bitter sweet though, it hurts so much to hold them!

I will carry on and do my best to be there for others. Been attending a women's bible study and it has been a blessing. I wear my soft collar in social situations and that helps a lot.

Blessings to all of you.
Posted 9/13/2016 12:52 PM (GMT 0)
Taller Now:
It is the periods when my bone pain is high and unrelenting that I wonder if I can continue.

How many more days? Weeks? Months? Of misery.

The world around me hums and bustles with busyness. I am not an active participant in the world around me.

I can generally do one defined thing or activity a day. One outing outside of my little condominium home. That is all that I can tolerate.

I take a narcotic cocktail of a Fentanyl patch + dilaudid for breakthrough pain. It is a dose reviewed and authorized at many levels: My Palliative Care MD, my PCP, my insurance company, and a state regulatory review panel. I feel as though I jump through hoops to get the narcotics that I do.

My mother, at the age of 82, rarely takes an aspirin.

My mother has strong opinions about my use of narcotics, and it is not favorable.

I do not discuss my narcotic dosing with her. It would only aggravate the situation. She only knows that I take a narcotic.

Yesterday my mother referred to me as "a junkie." This was not the first time.

It hurts to my inner soul when my mother says this.

Today is starting as a high pain day. I do not know what makes for a higher pain day. Perhaps I did too much yesterday? Too much which . . is really quite little, in real terms of activity or tasks accomplished.

Chronic pain is not a companion friend.

Gentle thoughts to all who have the misfortune of chronic pain,
- Karen -
Posted 9/13/2016 3:52 PM (GMT 0)
Karen,
Your words rang true and to my soul. I know what you are saying all too well. I am sorry and my heart goes out to you. Chronic pain isolates you in so many ways. People can't see our pain but if they could they would cry for us.

I am so very sorry about your mother's hurtful attitude towards you, the final emotional blow to an already fragile sense of well-being.

I too take diladid for breakthrough, but am allergic to fentanyl (and many other medications). I have stopped telling people about what I take and frequency because they too would see me as a druggie. I have heard other conversations where people talk about someone else who has chronic pain and refer to them as addicts. I take norco all day long and an extended release narcotic so I can get some sleep.

I told my husband this weekend, after spending three days in low activity mode to try to get my pain down, that it doesn't make sense. I do little and I hurt, I do a lot and I hurt. And yes, I have learned not to have more than one thing per day. And sometimes I don't get that done.

I have tried diet changes, avoidance, supplements etc. I know some foods can increase my pain. But if having a glass of wine with friends is fun, I do it anyway, knowing I will pay later.

Must keep going. One step in front of the other. Grab a hold of what small bits of joyous life that you can and hang tightly to it. And when stuck unable to do anything but writh in pain, go back to those joyous moments knowing that you will have more.

The person I was and the person I am is so different. Like you I was physically fit, active, nothing could stop me. But I have no regrets because I did live life to the fullest and experienced more than many.

I wish I could give you and everyone else who is hurting a big hug. Know that many understand your sadness and you are loved by many and that God loves you too. Even though that is very hard to understand.
Thank you for your understanding words.
TN
Posted 9/13/2016 11:11 PM (GMT 0)
Talk to your Dr about the Valium. I've had both this and pain meds prescribed together for many years.

Couldn't hurt to ask.

I hope each day finds you feeling better
Posted 9/13/2016 11:36 PM (GMT 0)
Thanks rocckyd I will ask. I have a new PM that seems to be more open and flexible. It sure has helped the past couple of nights.

I will always be up and down, probably like most folks here. And over time will get worse. Had a good day today although I may have over done it a bit and am starting to feel it already.

But it is a beautiful day and will soak in my surroundings. Hugs to you.
Posted 9/14/2016 1:31 AM (GMT 0)
TN, I wish I could wave that magic wand & makes things right for you. I remember your the surgeon had some reservations on this surgery being a success, because of the osteoporosis interfering with the fusion process. You remained optimistic & certainly gave it your all.

Yes its true the pump will only cover one area. You would think as long as Medtronics has been the leading mfg of these things by now they could come up with something to cover multiple areas. With today's environment no way would a dr rx oral meds with a pump. My first pump was a Medtronics but it did not have the little PTM so my dr back then did give me oral meds for BT pain.

Keep putting one foot in front of the other. Thats all we can do some days. I am on the fence about having a new pump put in. This Codman is not working & hasn't for a long time, we don't even bother filling it since I have a mass on the tip of the catheter nothing is getting through. Pain may win over though. Regardless of my decision this pump has to come out but I have a lingering problem with a cyst on my back. Its always something isn't it. I guess some things do happen for a reason.

Hang in there & know we care. Take care.
Posted 9/14/2016 1:45 AM (GMT 0)
TallerNow:
I appreciate your sensitivity and empathy. I am running on empathy - literally and figuratively.

My Palliative Care MD gave an upward gradation in my narcotic cocktail earlier this afternoon.

But I have to wonder, what is the end-point?

What is the purpose of the streams of prescriptions?

I am a walking pharmacy.

Every month, I am provided an allotment of narcotic. Every month I wonder if the prescriptions will it be sufficient to keep me in a semblance of sanity.

Due to 20+ years of corticosteroids, small fat emboli occlude the capillaries that nourish my femoral heads (hips). It is similar to Sickle Cell Anemia. Osteonecrosis. The bones of my legs are dying . . . and screaming.

It is not this single origin of bone pain that fatigues me.

A history of a life-time of pain from multiple co-morbidities has left me broken and exhausted.

Pain, and its continual presence, has made me question my own faith and spirituality.

I am a tiny mite of a person, 5'2" and 85 pounds. I am 55 years of age and look as though I am 12 years of age - due to complete pituitary failure.

And yet my internal body is that of a 90 year old.

My chronological age does not match my physiological age.

How much pain can a person endure in a lifetime?

It is a question that I find myself grappling with quite a bit.

The experience of chronic pain has been life-altering for me. I am no longer the person that I knew myself to be.

Anyone with chronic pain has my unconditional empathy.
- Karen -
Posted 11/11/2016 5:06 PM (GMT 0)
Greetings,
First off a delayed reply to Karen. My heart aches for you and I have times where I wonder how to carry on. I read a book recently that helped with this wrestling with God, why me, why so much suffering? It is called A Place of Healing by Joni Eareckson Tada. It helped me and it also helped me to take some next steps. I will keep you in my prayers.

So this is my good news. In spite of my ever increasing pain I have started a Chronic Pain support group that is sponsored by my church but not limited to church members. I have set it up so it can go on without me, since I never can predict a bad pain day that will keep me house bound. There has already been a lot of interest.

On my pain side. The occipital nerve blocks did nothing more than increase my pain. So my doctor will do bilateral epidural sat C6/7 where I am not fused in December. Mostly as a diagnostic but with hopes at confirming my pain source. I feel like it is a bit of a "duh" but I continue to try anything and everything. The zoohydro combined with Valium does help me sleep better, so that is a positive.

A bit nervous about my blood issues. My WBC has been super low so I was sent to a hematologist/oncologist. I will know more in a week or so. I am not too worried, but it does nag me a bit.

Fellow CPers, I wish all of you a low pain day.
TN
Posted 11/11/2016 6:30 PM (GMT 0)
TN, so very good to hear from you. I think the support group is an excellent idea. It can serve so many purposes. It can help you & others. I think that is why I still hang my hat here. I can come here & read stories of others & see there are so many out there struggling too.

Who knows one day there may be something on the horizon to help us all. I never give up on that idea. Just keep on doing what you can. It's funny, I had you & Abilene on my mind yesterday, really miss seeing both of you here & then today you post. Please don't be a stranger.

Take care.
Posted 11/11/2016 11:18 PM (GMT 0)
Susie,
Good to hear from you too! And yes, what a wonderful role you play in this support group. I am forever thankful to you and others here.

How is the cyst on your back doing? Will they do anything about it? I have several kinds of benign cysts in my spine. The doctors don't seem concerned about them but I have to think that it adds to my pain.

And yes, let's hope one day they can come up with more options for pain. It is really a sad state now.

I had an older gentleman come to my group, which is otherwise women. His daughter came and so did his wife. The daughter just had a neck fusion so I understand her coming. The wife has never had any pain in her life but wants to come to hear from people who do have pain. The gentleman has RA, but bragged add nausea about how he only takes Tylenol on occasion, which is wonderful but in my mind he doesn't have the level of CP that I tend to think need support. Any thoughts from your experience? I don't want to tell people they can't come but I have a feeling it may be making others uncomfortable.

Take care and thanks for all you do.
TN
Posted 11/12/2016 5:24 AM (GMT 0)
Hi TN I think you setting up a pain support group is a EXCELLENT thing to have done! I congratulate you on doing it! I am sure that it will be of great help not only to all the others that attend it but to you too!

Boy you have hit on a rather difficult situation, I can understand how that gentleman might make others uncomfortable and really probably does not need to attend, but the million dollar question is to how to """ uninvited him to your meetings""" You know maybe just confronting him when he brags about only taking Tylenol on occasion, and just ask him that since he is obviously not in that much pain, why he is coming to the meeting? And that these meeting is met for those that need help coping with chronic pain. Then others in the group might chime in, and he might get the message to either not come to the meetings any more or to shut up and quit bragging about how he takes care of his pain. ??? Just a thought??? I know it is a rather difficult situation, but if he is making others in the group uncomfortable, then it probably should be addressed!

TN it sounds like you have had a really rough time of it, I do hope that they can find a way to give you some pain relief soon!

Don't be a stranger here at this forum, it is really good to hear from you again!

White Beard
Posted 11/12/2016 8:25 PM (GMT 0)
Oh boy, the man with RA is going to have to be put in his place some how it sounds like. We all know what it can be like being around someone that has never suffered with pain for more than a day or two. They have no concept of chronic pain.

Something to consider the next time he brags about how he controls his pain you may want to comment loud enough for all to hear, that his RA must be in remission & perhaps his RA is mild in nature. That may or may not shut him up. You might also suggest for all to hear that he may want to consider looking for an RA support group, lol. I would not let him ruin what you have going on.

As far as the cyst is concerned on my back, no it did not heal up. I have got to go back to the dr that took care of it to see what he thinks. It always something it seems like.

Keep us posted please.
Posted 11/13/2016 6:18 AM (GMT 0)
Thanks Susie and Whitebeard for your input. We will see how it goes this week.

I over did it today and my nerve pain down my legs is awful. My neck is flared too. I hobble like I am 90. I am trying CBD topical oil on my low back at my husbands urging (he so wants me well). Any experience with that?

Good to reconnect. I will keep you posted.
TN
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