Back again, time to fix nonfusion

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?

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

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.

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

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)

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.

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.

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.

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.

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