The original version of this page can be found at : http://www.healingwell.com/community/default.aspx?f=16&m=3893505
Posted By : Taller Now - 8/5/2017 9:36 PM
Greetings,
I had C4-7 ACDF in 2014 (I think there are lots of posts from me) and after two years my neurosurgeon determined it was not fused at C6/7 and moving around. But that surgeon said the benefits did not out weigh the risks of the surgery. He wanted to go back in anterior and also fuse T1. I left frustrated. I don't think he wants to help me.

A year later and my pain is unbearable. My pain management doctor recommended a neurosurgeon and after lots of imaging, nerve tests etc he says he can do a posterior fusion with rods at C6/7 and also clean up C3/4. He doesn't think T1 needs to be fused since it only moves 2mm in flexion extension X-rays. He says my nonfusion itself is moving and causing my severe pain, although I have severe issues with my facet joints throughout my spine (osteoarthritis and will never be pain free. This all makes sense but I am wondering if I should get another opinion?

The other issue is that both neurosurgeons say they cannot do anything for my nerve pain down my legs or weakness in my left leg and foot. I am losing my ability to walk and cannot sit for more than 45 minutes at a time. I get epidurals and take lyrica as well as Norco and diladid.

Any ideas or input my friends?
Failed C4-7 ACDF on June 2014:Large plate, 8 screws: done for spurring, spinal cord compression. Pseudoarthrosis C6/7, T1 moved, foraminal stenosis after surgery. Severe osteoporosis, DDD, osteoarthritis - all levels of spine
Failed L5/S1 LD surgery, spondylitheisis, stenosis, etc.
Migraines, cervicogenic headaches,hysterectomy, melanoma
Health nut, fit, active my whole life....before

Posted By : (Seashell) - 8/6/2017 9:22 AM
Taller Now:
It is nice to see a post from you, although I am sorry to read that your surgical results have left you with lingering pains and a failed fusion.

I was a former marathon runner and busy professional, until chronic loss of health found me. I never saw chronic illness on my life's trajectory.

There can come and time and place where medicine and medical science cannot "fix" the body. A time and place where the prospect of more surgery can bring with it not improvement but rather more dysfunction and pain.

I wonder if the best course of action for you might be to seek the opinion of a Palliative Care physician and palliative care team approach.

Palliative Care has provided me with refinding of a semblance of life. It is not the life that I had before . . . But it is a life with more "good" days than less than good" days. Palliative Care is whole person care. It is about making the best of a less than ideal situation. It is about managing distressing symptoms (pain, fatigue, nausea, neuropathy, et al). It is less about "fixing" what ailes you and more about maximizing one's quality of life in contending with underling health conditions).

There is no "Dummies Guide to Living with Chronic Illness," no informational sheet that guides us in how to find life amidst a body that is no longer a best friend. Palliative Care has been a supportive model of care that has enabled me to re-find a life worth living.

It includes a Palliative Care physician who serves as the coordinator of care between the specialists that I see. Treatments and tests are decided upon as to whether they will make a positive impact on my quality of life. If not, there is no reason to proceed with tests and treatments that will only add to my pain and suffering.

It includes a RN who visits with me 1-2 times a week to monitor my status and identify potential problems before they escalate or intensify.

It includes a psychologist who meets with both me and members of my immediate family. The role of the psychologist is pivotal in providing tools to emotionally adapt and cope to chronic health.

It includes a physical therapist and occupational therapist, as needed. It includes a personal care aide, as needed.

Palliative Care is about optimizing your quality of life in a body that may be broken or failing. It focuses on what you can do rather than what you cannot do. It focuses on care and comfort.

You may be at a place where more surgery may compound your problems.

Look into options for home-based palliative care before considering additional surgery.
Karen

Post Edited ((Seashell)) : 8/6/2017 4:56:15 PM (GMT-6)


Posted By : Taller Now - 8/6/2017 3:06 PM
Karen,
Thank you for your reply. I have been receiving palliative care since my surgery that failed. My pain management doctor is always looking for ways to ease my pain through new medications, increased dosages and epidurals (since my whole spine is bad) and many procedures that failed to provide relief. I have been through a six month pain center program and learned pacing, occupational therapy, biofeedback, mindfulness etc etc. and have been seeing a pain psychologist for a few years now. I even lead a faith-based chronic pain support group. Helping others helps me and keeps my focus on the positive not the negative. Acupuncture, which I have tried over 50 times by at least five different providers does nothing but make things worse. Physical therapy is probably partially responsible for my nonfusion (aka broken neck). Massage is not recommended for me since I have joint hypertrophy, and I can't lie on my back or stomach.

I continue to stay fairly active since we live on acreage and even though I have difficulty walking I drag my left leg down our road as often as I can (2 miles). I use TENS unit (on low back since it makes my neck worse), I use ice a lot, I eat an anti-inflammatory diet. I am thin (my neurosurgeon said thankfully because he could not do the surgery if I was not).

By training I am a scientist. So I am fairly well-informed. But I know the experience of others is invaluable. Do you have a psuedoarthrosis aka nonfusion of a failed multilevel fusion? If so, how much does the palative care help you? Have you not had it fixed because the risks are too high or due to other health conditions?

TN
Failed C4-7 ACDF on June 2014:Large plate, 8 screws: done for spurring, spinal cord compression. Pseudoarthrosis C6/7, T1 moved, foraminal stenosis after surgery. Severe osteoporosis, DDD, osteoarthritis - all levels of spine
Failed L5/S1 LD surgery, spondylitheisis, stenosis, etc.
Migraines, cervicogenic headaches,hysterectomy, melanoma
Health nut, fit, active my whole life....before

Posted By : (Seashell) - 8/6/2017 4:04 PM
TallerNow:'
I do not have any spine or disc problems. I was suggesting Palliative Care as a model of care that has been enormously helpful for me in coping with serious endocrine failure and corticosteroid dependency (and detrimental effects of corticosteroids).

I was not aware that you are already familiar with and receiving palliative care.

From reading your subsequent post it is apparent that you have cast a wide and deep net of care and treatment options. You have been through the ringer.

I am a physical therapist with a masters degree in business administration. For all that I have been able to heal in the laying of hands as a physical therapist, I am unable to heal myself. It iis a perplexing juxtaposition.

I have a explicit advance directive. My body is no longer my friend. I had a near death experience with the intestinal perforation. It was profound spiritual experience that touched me to the very core of my being.

I want no further invasive medical intervention where I may be worsen than my current status quo. I want for myself care and comfort only.

I did not mean for my post to be all about me. But it is what it is. I am leary of physicians and medical care. I have been hurt and harmed by "medical care" more than I have been helped or benefited.

There is a pool of valuable insights and experiences in this forum. As you, yourself, are aware. I hope that other members with spine issues can weigh in to provide additional perspective that is helpful to you in decision-making and next steps.

I hope that today has been a tad easier for you,
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Post Edited ((Seashell)) : 8/6/2017 9:42:14 PM (GMT-6)


Posted By : Abilene - 8/6/2017 7:07 PM
Hello Taller Now,

How nice to see your name again, but so sorry it's not to share better news than this. I am not here very often but do drop by just to see if there is someone I might be able to connect with...as we connected so long ago it seems. I'm doing well, recovering from a total knee replacement nearly 8 weeks ago.

Help me to understand please. Does the possible posterior surgery give you hope of less severe pain in your neck? If so are you able to separate your different pains and imagine what some relief in one area could mean for you?

I am very impressed with all that you do to help others, thus helping yourself. I think I might want another opinion perhaps to help with this decision. My very best wishes to you, my friend.
Posterior C3 - C7 laminectomy and fusion 2 rods and 10 screws, local bone graft from surgery site-lamina and other bony tissue 12/17/2013; Hyperthyroidism; Sleep Apnea-update-it's gone after a 25 lb weight loss;
Thankful for my husband of over 40 years

Posted By : straydog - 8/7/2017 7:15 AM
Hi Taller Now, so glad to hear from you but sorry to read another surgery is looming in your future. I do remember very well the problem with fusion not taking. It does sound like you have a dr that is willing to help you in that area. I had a feeling that you were staying busy when we didn't hear much out of you. I think it's great that you have kept yourself busy in spite all everything. Even with limitations, I think it is important for people to stay busy, keeps me from going down a dark hole.

I would opt for another opinion as Abilene suggested. I do know you have suffered for a very long time with this neck situation. I remember you having to use the bone stimulator after you last surgery.

I am sure Abilene can weigh in with you later on the posterior surgery, she has experience there. Please keep us posted.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Taller Now - 8/8/2017 9:25 AM
Thank you all for your input. I am thinking of a third opinion and even going back to my previous surgeon (Who I haven't seen for over a year). Something in my gut says something about this recent neurosurgeon is not right.

I woke early this morning and knew I needed to pray about this whole thing. I read the Psalms, which spoke to my soul. I made some delicious blackberry scones since I had two lumbar epidurals yesterday and now have enough steroids to keep me going ;-) My pain doctor who did them said he couldn't get much of the solution in at L5/S1 because tissue is blocking the space. He did better at L4/5. The challenge today will be resting when I want to move.

Abilene, I have a question for you. How is your pain from your posterior fusion? I am wondering what the lingering posterior pain is like, since one surgeon is talking about that aspect. Good to hear from you. I am sorry about your knee replacement. Will pray for an uncomplicated recovery for you. I have heard those are tough, but we know you are tougher!

Seashell, it sounds like you have been through a lot, but are on the path to healing. One thing I teach in my class is that there are two types of healing; physical and spiritual. And spiritual is far more important than physical. These are temporary bodies we have and one day we will have new ones that won't hurt anymore. Until that day we can rest in our relationship with God. We can have peace and joy that surpasses understanding if we are spiritually well. I will pray that you continue to heal spiritually. And have to agree that medical practice is just that, "practice". And I am slowly learning that only a fraction of our ailments can be treated medically.

Susie, thanks for your input. I hope you are doing well. It is always like homecoming to be back here. It is here that I learned that support from those who understand is invaluable. And the reason I started a group (that keeps growing) at our church.

Since I last chatted, I have two more grandchildren, making a total of four. Three from one daughter and one from my other daughter (so far). We are happy on our acreage, my husband has retired early to help me and take me to appointments. So overall I have much to be thankful for, and mentally I am in a good place (unlike even a year ago) and I continue to learn and grow. And if you read my early blogs I complained of loneliness and how my "friends" all left me. Now God has blessed me with three times more friends than I had before!

And to all of you that are new to chronic pain and illness, don't give up! You can choose joy in spite of your pain.
TN
Failed C4-7 ACDF on June 2014:Large plate, 8 screws: done for spurring, spinal cord compression. Pseudoarthrosis C6/7, T1 moved, foraminal stenosis after surgery. Severe osteoporosis, DDD, osteoarthritis - all levels of spine
Failed L5/S1 LD surgery, spondylitheisis, stenosis, etc.
Migraines, cervicogenic headaches,hysterectomy, melanoma
Health nut, fit, active my whole life....before

Posted By : straydog - 8/8/2017 10:58 AM
Taller Now, I am truly happy to read about how you have battled to not let chronic pain define who you really are. It is a tough battle, which a lot of us know. I remember how hard everything was for you back then. I have been in your shoes where everything looked bleak with little hope of it changing. I found that drs can only do so much, the rest has to come from within me & having my faith.

You mentioned maybe going back to your old surgeon. If it were me, I would consult with another new set of eyes. Depending on that outcome would dictate seeing the old surgeon. Can you look for a board certified neurosurgeon that takes your insurance? I just don't think you could go wrong going for one more new consult.

I have one grandchild, he is 12 & beginning to not be so dependent on me lol. I keep him after school & during the summer. He has made such a positive impact on my life. I have been doing this for several years now & believe me, these have been my best years in a very long time. Pain & health issues are no longer my focus. This is another reason I have stayed at Healing Well for so long. I read in many forums here daily & see some of the battles people are fighting, some are fighting for their life. It is a wake up call to me & makes me grateful to be where I am.

Please keep us posted on how you are doing. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Abilene - 8/8/2017 2:53 PM
SUSIE, thank you for staying HERE! You are a wonderful support!

Taller Now, you might want to read my story again. It's not really very long and might help you. The title is just like it is in my signature. I have neck stiffness but NO pain. I wish I could say that your situation would be the same. People still ask about my stiff neck. I gladly say I traded pain for only stiffness (actually I already had a loss of range of motion, it's just permanent now and it's not total loss, just some). I think it bothers others more than me. Those who know me and know that it is no longer painful share my joy!

I am healing very well from the TKR. I had the other one five years ago, so I knew what to expect, even went back to the same surgeon. It may have been even easier this time. A friend told me it might be since I would know what to expect. My home physical therapy was very different. The first time the PT and I just visited more than worked on anything. This time the PT was a very kind, friendly woman who worked me Hard! But my result both times is very similar at the 6/7 week mark. I'm glad I don't have a third knee!

Our family has also added two wonderful blessings by way of adoption. They are precious little guys who have adjusted beautifully to their new life. My husband and I celebrated our 49th anniversary recently!

Post Edited (Abilene) : 8/8/2017 3:03:02 PM (GMT-6)


Posted By : Taller Now - 8/8/2017 3:35 PM
Abilene,
Thanks! I did look at your story, you went through many month of pain and then stiffness. Sounds like a tough first four months before you gradually got better. If all I am is stiff after surgery recovery, I would be thrilled. I am stiff, have little ROM and pain. All I want is manageable pain. I am on so much medication now that I have to limit my driving to when I purposely don't take meds. Glad to hear you are on the mend with your TKR. And Happy Anniversary! That's a long time! Congrats!

Thanks for your input Susie, I called another doctor but neither of the next visits for opinions are until mid September, unless there is a cancellation.

We will see, won't rush into anything. Although my quality of life is not so good, can't travel, sometimes can't even get to the grocery store. Evenings are out for anything since my pain is high by end of the day even with meds. The more I do the more I hurt. When it gets bad all I can do is lie very still and hold my neck with my hands, take meds and wait hours for it to calm down.

Thanks all - TN
Failed C4-7 ACDF on June 2014:Large plate, 8 screws: done for spurring, spinal cord compression. Pseudoarthrosis C6/7, T1 moved, foraminal stenosis after surgery. Severe osteoporosis, DDD, osteoarthritis - all levels of spine
Failed L5/S1 LD surgery, spondylitheisis, stenosis, etc.
Migraines, cervicogenic headaches,hysterectomy, melanoma
Health nut, fit, active my whole life....before

Posted By : straydog - 8/8/2017 5:21 PM
Taller Now, I know you will take your time & weigh any options before making any further decisions. Very wise thing to do. I do hope at some point there will be something out there for you that will help. I am so glad you read Abilene's journey, as the posterior approach has a different healing time. However, when I think about it, with the osteoporosis hanging over your head on the last surgery, pretty close time line even with that surgery.

In the meantime, I will keep you in my prayers. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Taller Now - 8/9/2017 9:56 AM
Thanks Susie. I think between my original neurosurgeon and some additional input we will have information to make a decision. The recent new neurosurgeon said a nonfusion is one of the most painful conditions you can have in your cervical spine. And if we can stabilize that broken bone that is moving around and grinding bone on bone that I should have less pain. The question is, will the surgery to fix it leave me with new debilitating pain.....and how much of my neck that is messed up above and below the psuedoarthrosis needs to, or should be fixed while they are in there....(T1 is moving, C3/4 is bad)?
Failed C4-7 ACDF on June 2014:Large plate, 8 screws: done for spurring, spinal cord compression. Pseudoarthrosis C6/7, T1 moved, foraminal stenosis after surgery. Severe osteoporosis, DDD, osteoarthritis - all levels of spine
Failed L5/S1 LD surgery, spondylitheisis, stenosis, etc.
Migraines, cervicogenic headaches,hysterectomy, melanoma
Health nut, fit, active my whole life....before

Posted By : straydog - 8/9/2017 3:59 PM
TN, I do agree with the new guy about the non-fusion causing a great deal of pain. I saw this when I worked, the people had incredible pain, whether it was their neck or back. By the time they got to us they had surgery by some not so good drs. We knew the best neuros & orthos that helped them. I think your questions about the upper & lower levels are something the drs should address, including the new one you just saw. It may well be a situation they will not know until they actually see what is going on inside. However, you need answers.

Take as much time as you need to make the best decision for you.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Raew64333 - 10/10/2017 1:30 PM
Hi Taller.. Iam new to the site here.. I read your posts and wish you the best.. I had acdf C3-C7 1month ago.. I feel for you.. I do hope you are doing better and look forward to hearing new posts how you are.. God Bless you.

Posted By : Taller Now - 10/10/2017 7:16 PM
Hi New person and others I haven’t responded to yet,
I apologize for my tardy response. Life has been hectic, stressful, and painful.

After the one new surgeon, I went to a spine specialist who took plenty of time with me and thinks it is C0-C3 that is causing my most disabling pain. Especially C2/3 and C3/4 facet joint. The MRI shows lots of edema and issues in those areas. He thinks that if I have nerve blocks in those areas and it helps that I could then get nerve ablation in those facet joints. If it doesn’t help then it is coming from my nonfusion. It all made sense so I am going to talk to my PM about it next week.

The neurosurgeon who did my original surgery was an arrogant jerk. Basically repeated what he said last year that the risk of surgery doesn’t outweigh the benefit. I do not plan on seeing him again.

In the meantime I took my first short road trip. We had a wonderful time but it has taken three weeks for my low back to feel better. The pain from my low back has been as bad as my neck of late. And my neck is awful. I feel myself lapsing into depression. This all is taking a toll on not only me but the relationship with my husband too. I have my faith and help others get through these difficult times and I know this will pass, but when in the storm it is hard.

If we determine that the worst of my neck pain is not from my facet joints but from my nonfusion, I am not sure I will seek another surgery. From what I gather it is a crap shoot, I may come out better, the same, or worse. So far I have two failed spine surgeries, so I don’t have much confidence in coming out better.

I know I had to have the first surgery or I would be in a wheelchair, but I had no idea what a life changer it would be. I would tell anyone out there not to mess with your spine unless the spinal cord is compromised or you have severe nerve impingement. And not to expect a full recovery unless you just have one level and it is a clear cut issue. My surgeon told me I needed my whole neck fused and was a complicated case....who knew....

Bless all of you suffering from debilitating pain. Know that God doesn’t waste pain and you still have purpose. Stay close to God and He will get you through everything.
Failed C4-7 ACDF on June 2014:Large plate, 8 screws: done for spurring, spinal cord compression. Pseudoarthrosis C6/7, T1 moved, foraminal stenosis after surgery. Severe osteoporosis, DDD, osteoarthritis - all levels of spine
Failed L5/S1 LD surgery, spondylitheisis, stenosis, etc.
Migraines, cervicogenic headaches,hysterectomy, melanoma
Health nut, fit, active my whole life....before

Posted By : straydog - 10/11/2017 6:34 AM
TN, I do think you have a good plan of action. I had good success with the ablation on my neck. It didn't do anything for my back. But I do think its much worth trying. I am glad that you are trying to stay as active as possible. Its called pacing yourself.

Please let us know when you get things lined up. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Taller Now - 10/11/2017 4:57 PM
Thanks Susie,
Some of my plans might be altered since I just found out that Federal Blue Cross is no longer covering epidurals, facet blocks, and ablation because “new studies” show they don’t work.....

I am so upset now I could cry. Well I have cried after being on the phone for an hour with blue cross. I will likely have to pay for four injections I have already had this year, a total of $5000.....

They just now rejected a claim from March, and I have had two since then. They don’t want you taking pain meds, they don’t want you to do other treatments.....

I am beginning to believe what someone sent me that medical treatment (non treatment) is a form of population control now. Actual taped statements from a variety of people like Bill Gates and other world figures. I watched it the other day. Like in Canada and Europe where already they don’t treat certain conditions or people over a certain age. Weed out the unhealthy people.....we live in a terrible age.
Failed C4-7 ACDF on June 2014:Large plate, 8 screws: done for spurring, spinal cord compression. Pseudoarthrosis C6/7, T1 moved, foraminal stenosis after surgery. Severe osteoporosis, DDD, osteoarthritis - all levels of spine
Failed L5/S1 LD surgery, spondylitheisis, stenosis, etc.
Migraines, cervicogenic headaches,hysterectomy, melanoma
Health nut, fit, active my whole life....before

Posted By : (Seashell) - 10/12/2017 8:55 AM
Taller Now:
I can empathize with the flood of emotions that you may be feeling and trying to process.

Like you, I am living in a body that is no longer my friend. I am in disbelief that my life’s trajectory has been circumvented by serious illness.

The provision of Palliative care services has been a bright light for me in an otherwise bleak prospect. If Palliative Care is an available service in your community, I highly recommend that you explore it as an option for you.

Palliative Care is whole person care - physical, emotional, spiritual. It’s focus is on living one’s best life in the face of serious or life-threatening illness where there is no “fix” or cure. I have been able to find a level of personalized care and understanding not otherwise available in the general umbrella of medical care.
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : Taller Now - 10/12/2017 10:34 AM
Hi Karen,
Thanks for your input. I will talk to my doctor about palliative care. I have been part of a program that addresses all of my various limitations and works with me. I need to go back to my pain psychologist who I haven’t seen in a while.

Most of the time I can stay positive and function fairly well. A series of things has put me in my current state of depression.

I am sorry you must also struggle each day. My best wishes for you.
TN
Failed C4-7 ACDF on June 2014:Large plate, 8 screws: done for spurring, spinal cord compression. Pseudoarthrosis C6/7, T1 moved, foraminal stenosis after surgery. Severe osteoporosis, DDD, osteoarthritis - all levels of spine
Failed L5/S1 LD surgery, spondylitheisis, stenosis, etc.
Migraines, cervicogenic headaches,hysterectomy, melanoma
Health nut, fit, active my whole life....before

Posted By : Larissa Cruz - 10/17/2017 8:23 PM
Have any of your surgeons mentioned having a spinal stimulator put in? I’ve had mine from Nevro for a little more than a year. As far has the horrific leg pain goes, it’s been an absolute life saver. At my absolute worst, I was unable to get out of bed for days at a time and if I did force myself to get up and do something easy like run errands, often it would get so bad that I would have to abandon my shopping cart because I couldn’t deal with the pain a minute longer. It doesn’t do much for most of my other back pains, but it’s been a life changer for the legs. I have access to reps 24/7 who constantly follow up, check in on me between visits, come with me to doctor appointments to discuss my care with my surgeons, adjust my settings based on my feedback.
The short version: 1 microdiscectomy, 3 laminectomies, 1 ALIF (anterior lumbar interbody fusion). 1 Nevro Spinal Stimulator (and most recently had the leads replaced with the new paddles because everything migrated out of place). DDD, post-laminectomy syndrome, bilateral SI-joints, RSD (reflex sympathetic dystrophy-right foot and ankle). More same day surgery procedures than I can count. All by 33

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer