Spinal fusion of C1-C6

Posted by kdj @kdj, Dec 16, 2020

I have been told I should consider a fusion of C1-C6. Would appreciate hearing from anyone that has had this surgery.
Also, looking to hear from anyone that had PRP therapy for cervical spine issues.

Interested in more discussions like this? Go to the Spine Health Support Group.

Anyone had a fusion of the C-1 and C-2 vertebra? I have a fracture of my C-2 and a fusion is the only surgical option. From anyone who has had this surgery, I would like to know 1) your recovery time to return to full activity, and 2) how difficult has it been to deal with less ability to turn your head from side to side. Thanks for any information you can offer.

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@dancarpenter

Anyone had a fusion of the C-1 and C-2 vertebra? I have a fracture of my C-2 and a fusion is the only surgical option. From anyone who has had this surgery, I would like to know 1) your recovery time to return to full activity, and 2) how difficult has it been to deal with less ability to turn your head from side to side. Thanks for any information you can offer.

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@dancarpenter Hello and welcome to Connect. I have a fusion at C5-C6 which is a lot more common than C1-C2. For me it took 3 months for the fusion process to begin. It takes 6 weeks for the incision to heal well, and then the scar tissue started to tighten up a bit. I felt good at 3 months, except that my neck was weak from being in a neck brace and I needed rehab. With a C-C2 fusion, you are going to loose some head turning ability. These levels do most of head turning with a little help from C3 & C4. Are you in a neck brace now waiting for surgery? I presume that the fracture may have been caused by an accident. When is your surgery scheduled?

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@dancarpenter

Anyone had a fusion of the C-1 and C-2 vertebra? I have a fracture of my C-2 and a fusion is the only surgical option. From anyone who has had this surgery, I would like to know 1) your recovery time to return to full activity, and 2) how difficult has it been to deal with less ability to turn your head from side to side. Thanks for any information you can offer.

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Hello @dancarpenter. I'd like to add my welcome along with @jenniferhunter who has responded already!

You will notice that I have moved your post into an existing discussion on cervical spinal fusion, that you can find here:
- Spinal fusion of C1-C6: https://connect.mayoclinic.org/discussion/spinal-fusion-of-c1-c6/

Members such as @jojo58 @kdj @ken82 and @faithgirl30 have shared their experience and/or interest in exploring fusion and may be able to come in and share more with you.

Have you had any prior spinal procedures?

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@amandajro

Hello @dancarpenter. I'd like to add my welcome along with @jenniferhunter who has responded already!

You will notice that I have moved your post into an existing discussion on cervical spinal fusion, that you can find here:
- Spinal fusion of C1-C6: https://connect.mayoclinic.org/discussion/spinal-fusion-of-c1-c6/

Members such as @jojo58 @kdj @ken82 and @faithgirl30 have shared their experience and/or interest in exploring fusion and may be able to come in and share more with you.

Have you had any prior spinal procedures?

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I have not had my surgery yet. I go to see another neurosurgeon on the 20th. I’ve seen 4 already and wasn’t comfortable with them. I thoroughly research any new dr I’m going to see. Where they went to school, how many procedures have they done, reviews everything before I go. I hope this one will be it. I’m running out of time to get it done by the end of the year. I would encourage everyone to do the same. Research your doctor thoroughly, and if you can talk to anybody else who’s been to them what their experience was. You’ll be better off. Find out all the information you can about your condition so you can better understand what they’re talking about when you see them. I’ll report back after I see him

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@jenniferhunter

@jojo58 Severe cervical stenosis is something that can cause a lot of disability in the rest of your body with every signal from your brain passing through there. It can cause permanent damage to the spinal cord if not treated or paralysis. I have a fusion at C5/C6 which I had when I was about your age. Recovery is different for everyone, but many patients who go back to work too early say that they never healed right and live with pain. I chose to have a fusion with no hardware, and only had a donor bone disc. I wore a neck brace for 3 months and had to do that until the fusion process started. I was off for at least 5 months without trying to do anything. I was going to rehab because after 3 months in a neck brace, the neck muscles are weak and need to be taught how to do their job again. What I see as a problem for a cashier is that you will be looking down a lot at items a customer is purchasing. That likely will cause headaches and neck pain because the levels of C2-C4 are involved in neck bending and head turning. C1 & C2 do most of the work in head turning with help from C3 and C4. That can cause stress to the other levels above and below the fusion which can lead to more spine surgery down the road. If you can find a way to keep your neck straight and head level after surgery, your spine would be happier about that.

A lot of doctors don't want to work on levels this high in C spine. The nerves that go to the lungs exit the spine around C3 and they don't want to risk damage to your breathing. You can ask about that. Do you also have stenosis at the nerve roots too or just in the central canal?
Are you going to get any second opinions? That is always a good idea with major surgery.

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Good morning, I am sorry that you’re going through this and not knowing what to do I think compounds everything. We decided to get a second opinion 3 yrs ago on my nrck and we went to the Miller’s school of medicine in Miami. The top surgeon wanted to fuse my entire cervical spine the same as you pretty much. My pain management doctor in Naples told me that they do not know you there you are a case number during the surgery he’s teaching all of his students what he’s doing. In the end you don’t have a relationship with these people make sure that whoever operates on you is someone you trust explicitly and preferably someone you have a relationship with. We elected not to do the surgery there but instead with my neurosurgeon where I live . I only had my 6-7 fused, my 5-6 was fused a little over two weeks ago. Good luck with your decision

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Hello to all,
Today is October 14, 2020. I will be 80 years old next week. In June of this year, I had fusion surgery (Cervical levels 5-7). Additionally, I have been dealing with Parkinson's Disease for the last 6 years. I chose surgery because of 1) the horrible pain I was experiencing, nerve pain radiating down both shoulders, and 2) I knew the surgeon in my area was the best! My son vouched for that since he insisted on doing the researching. So, with a little over 4 months, I must say how pleased I am so far with the results. With my Parkinson's, my neurologist told me if I continue to fall down as I had been doing with some regularity, that the next one could possibly cause paralysis. My Neurosurgeon was one who has a history of telling his patients that surgery was the last option rather than the first option. But, when he saw my x-rays revealing a serious cord compression, he immediately scheduled me for surgery within 2 weeks. Great service, I must say! 3 months after surgery, I went to him for a review, and all seemed to be ok, with the exception of still having some nerve pain, but not as intense as before. My readings on this matter, led me to understand that this was certainly a common reaction. I must say that my taking my P.T. sessions seriously helped appreciably in my road to recovery; in addition, followed faithfully my continued sessions with my personal trainer who happened to specialize in parkinson's, building up my strength and helping with balance issues. when P.T. ended officially, I have made it a regular event at home.
So, needless to say I am so pleased with my decisions, not only to research your surgeon; determine your pain level prior to deciding on surgery, but also to faithfully do all the P.T. possible to help regain your strength. I must also add another feature of my successful recouperation process thus far; that is the fact that I purchased a hospital bed ( most of which was covered by Medicare) and quickly learned to sleep very comfortably on my back ever since surgery. Never thought I would ever want to lie on my back, but now that is still my preferred way of sleeping! The feature of having electrical controls makes for a very comfortable positioning of one's legs and head/neck areas. I suspect I will continue using it lying in my back forever. Yes, I am a very positive thinking individual who actually thinks that he can out-progress the progressive disease I am facing; and, yes, I am very blessed!
Hoping the best to all who have been suffering with any kind of painful spinal cord conditions. If I can be of further help in any way, please let me know... God bless!

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@harvodavo

Hello to all,
Today is October 14, 2020. I will be 80 years old next week. In June of this year, I had fusion surgery (Cervical levels 5-7). Additionally, I have been dealing with Parkinson's Disease for the last 6 years. I chose surgery because of 1) the horrible pain I was experiencing, nerve pain radiating down both shoulders, and 2) I knew the surgeon in my area was the best! My son vouched for that since he insisted on doing the researching. So, with a little over 4 months, I must say how pleased I am so far with the results. With my Parkinson's, my neurologist told me if I continue to fall down as I had been doing with some regularity, that the next one could possibly cause paralysis. My Neurosurgeon was one who has a history of telling his patients that surgery was the last option rather than the first option. But, when he saw my x-rays revealing a serious cord compression, he immediately scheduled me for surgery within 2 weeks. Great service, I must say! 3 months after surgery, I went to him for a review, and all seemed to be ok, with the exception of still having some nerve pain, but not as intense as before. My readings on this matter, led me to understand that this was certainly a common reaction. I must say that my taking my P.T. sessions seriously helped appreciably in my road to recovery; in addition, followed faithfully my continued sessions with my personal trainer who happened to specialize in parkinson's, building up my strength and helping with balance issues. when P.T. ended officially, I have made it a regular event at home.
So, needless to say I am so pleased with my decisions, not only to research your surgeon; determine your pain level prior to deciding on surgery, but also to faithfully do all the P.T. possible to help regain your strength. I must also add another feature of my successful recouperation process thus far; that is the fact that I purchased a hospital bed ( most of which was covered by Medicare) and quickly learned to sleep very comfortably on my back ever since surgery. Never thought I would ever want to lie on my back, but now that is still my preferred way of sleeping! The feature of having electrical controls makes for a very comfortable positioning of one's legs and head/neck areas. I suspect I will continue using it lying in my back forever. Yes, I am a very positive thinking individual who actually thinks that he can out-progress the progressive disease I am facing; and, yes, I am very blessed!
Hoping the best to all who have been suffering with any kind of painful spinal cord conditions. If I can be of further help in any way, please let me know... God bless!

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@harvodavo Thank you so much for sharing your wonderful story! I truly believe as you do, that the choices we make (or avoid making) determine our future and quality of life. I know exactly what you mean when you describe imaging that shows spinal cord compression and the very real risk of paralysis if you were to fall or have an accident and jar the spine. I worried about that too, and I didn't want to be disabled if I had a choice... which I did! I had spine surgery at Mayo that gave me back the coordination of my arms which was very important to me as an artist. I'm glad you're here on Connect providing encouragement for others who are also 80 years young! I'm glad you are doing well.

I think PT is wonderful, and I continue to do things my therapist taught me. Riding my horse also helps a lot because I'm exercising my back and building core strength doing that just at a walk. If you are interested, there are therapeutic riding centers where you can do that as physical therapy in a controlled guided environment with someone leading the horse for you. It may help with balance if you are physically able to do it and if it is safe for you. Riding my horse actually helped me recover after my cervical fusion and I was cleared to do that at 7 months post op. It would be a way to work on balance without walking, but instead compensation for the horse's movement as he walks.

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I just found out I need another neck fusion with rods from c2 to T-2 and I’m a bit freaked out. It’s difficult to talk to mu family about because I don’t want to scare them. I’ve now had 5 back and neck related surgeries. This one is scary. It mostly for stability then pain relief this time. I had a fusion over 20 years ago in my neck that went bad about a year ago, the screws became loose, and the plates and screws fell into my throat and sliced my esophagus. The infection was so bad I lost 50% of the bone in my neck. So that’s why it now needs to be stabilized.

I gave up driving several years ago because my range of motion was already really limited by pain and stiffness, so I didn’t feel safe driving anymore. Which also sucks because I feel trapped at home. But at the same time I’m frightened to get in a car. If an air bag goes off in my face my neck will likely break. I’m hoping the fusion will help that.

I also already deal with daily migraines and have since the accident 22 years
ago. They suck but you learn to live with them.

Even though Im down 50% of the time,I’m finally feeling somewhat better than I did after all the exploratory surgeries from a year ago. So looking at another year doesn’t sound good. How long were you completely down from the big fusion surgery? Do you feel stable now?

Thanks for listening. Any input would be great.

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@jenniferhunter

@kdj Fusing C1 through C6 as a first spine surgery sounds really extreme to me and I would not trust an opinion like this unless it was confirmed by several different surgeons at different medical institutions. You will loose most of your ability to move. All that will be left to turn your head will be between C1 and the skull which will put a lot of strain there. C1 & C2 do most of the head turning with some help from C3 and C4. You don't want a surgery that was done to profit the practice. It needs to be what is appropriate for you and in your best interest. Your best unbiased opinion will be from a place where the surgeons do not get bonuses for doing surgeries. That is how Mayo works. Everyone is an employee and they collect the same pay if they do or do not perform surgeries. No surgeon should push or scare a patient into a big expensive surgery. This is an important decision, so choose wisely when you pick a surgeon. I walked away from a pushy surgeon who owned a surgery center with 10 other surgeons. What is the cause of your spine problems? Have you tried any physical therapy? I know that can't fix arthritis, but it may be able to keep the spinal column aligned better and reduce pain. I had 6 different surgical opinions. The fist 5 missed understanding what the issues were and how it related to my symptoms. The 6th and only correct opinion was at Mayo, and I had a great recovery from a C5/C6 fusion. I wouldn't wish for another spine surgery, but if that is needed, I will be at Mayo.

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I agree with you whole heartily. My first neck c3-c5 was done over 20 years ago. I heard great things about the doc I used. He had many published articles and even wrote a boo. In fact a year prior he fused my lumbar ant L4-5 and I had great results. So I went with the same surgeon.

Bad mistake, his specialty was lumbar spines, not neck. And he was an arrogant ass who acted like it was no big deal. We’ll 22 years later the screws became loose, causing horrible bone and soft tissue infections with multiple bone cysts. Eventually the plates became loose too and the whole titanium mess fell into my throat and sliced my esophagus.

Then to top it off my primary care doctor was an even bigger idiot. I complained about this area for over a year, possibly more. And he kept telling me to go to physical therapy, which probably would have killed me. I asked for an mri the entire time and he said my insurance would not pay for it unless I went to PT. That I found out is a lie. Please don’t listen to that as I did.

At the first hospital ER I went to the did exploratory surgery and removed the hardware from my neck. They couldn’t fix the tear in my esophagus and told me I may never swallow again. A week later a different ENT looked in on me and cut open my incisions to find more infections.

Thank god for this women! She said you need to get out of here and proceeded to have me transferred to UC Davis hospital under the leadership of the head thoracic surgeon there. He was a very intense, intelligent gentleman who gathered a team of the top doctors there. 3 more surgeries later they decided to reconstruct my neck using a graph called a flap from my thigh. I’m told there are only a handful of surgeons in the country who do this surgery. It took 10 hours in the OR. They actually connect blood vessels to the graph to reconstruct my neck.

So now I’ve lost 50% of the bone in my neck. I’m looking at a final surgery to stabilize my neck from C2 to T2..

So many things happened that I should of caught along the way. The idiot surgeon was not a quality neck surgeon, even though he was a good low back surgeon. All the surgeons from the past year agreed on one thing. That it was the negligence or the original surgeon that caused these problems. And would you believe I had 3 opinions. Pay attention to social media and what people say about doctors and surgeons. I didn’t have that option 22 years ago.

Take matters into your own hand and research as much as possible. Credentials, specialties AND word from patients on social media.

I notice no one really mentioned doctors names here so I won’t but he was a Sacramento based surgeon wh has moved on to Beverly Hills LOL! His initials are PXM.

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@sandyzc

I agree with you whole heartily. My first neck c3-c5 was done over 20 years ago. I heard great things about the doc I used. He had many published articles and even wrote a boo. In fact a year prior he fused my lumbar ant L4-5 and I had great results. So I went with the same surgeon.

Bad mistake, his specialty was lumbar spines, not neck. And he was an arrogant ass who acted like it was no big deal. We’ll 22 years later the screws became loose, causing horrible bone and soft tissue infections with multiple bone cysts. Eventually the plates became loose too and the whole titanium mess fell into my throat and sliced my esophagus.

Then to top it off my primary care doctor was an even bigger idiot. I complained about this area for over a year, possibly more. And he kept telling me to go to physical therapy, which probably would have killed me. I asked for an mri the entire time and he said my insurance would not pay for it unless I went to PT. That I found out is a lie. Please don’t listen to that as I did.

At the first hospital ER I went to the did exploratory surgery and removed the hardware from my neck. They couldn’t fix the tear in my esophagus and told me I may never swallow again. A week later a different ENT looked in on me and cut open my incisions to find more infections.

Thank god for this women! She said you need to get out of here and proceeded to have me transferred to UC Davis hospital under the leadership of the head thoracic surgeon there. He was a very intense, intelligent gentleman who gathered a team of the top doctors there. 3 more surgeries later they decided to reconstruct my neck using a graph called a flap from my thigh. I’m told there are only a handful of surgeons in the country who do this surgery. It took 10 hours in the OR. They actually connect blood vessels to the graph to reconstruct my neck.

So now I’ve lost 50% of the bone in my neck. I’m looking at a final surgery to stabilize my neck from C2 to T2..

So many things happened that I should of caught along the way. The idiot surgeon was not a quality neck surgeon, even though he was a good low back surgeon. All the surgeons from the past year agreed on one thing. That it was the negligence or the original surgeon that caused these problems. And would you believe I had 3 opinions. Pay attention to social media and what people say about doctors and surgeons. I didn’t have that option 22 years ago.

Take matters into your own hand and research as much as possible. Credentials, specialties AND word from patients on social media.

I notice no one really mentioned doctors names here so I won’t but he was a Sacramento based surgeon wh has moved on to Beverly Hills LOL! His initials are PXM.

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@sandyzc You do have an extensive story. I know spine surgery has improved a lot in the last 20 years too. I am sorry you've had to go through all of this. I also chose not to name the surgeons who in my case refused to help me because they misunderstood my symptoms and even though they all understood the imaging, they missed the real diagnosis. Any of them could have helped me, but it took 2 years before I gave up after 5 surgeons passed on me, and I contacted a surgeon at Mayo. I had great results and am doing very well with my one fused level. I asked to do this surgery without hardware because I was worried about allergic immune responses to metals and foreign substances in my body, so I had only a natural donor bone graft and healed very nicely. We can't use this forum to bash doctors, but being honest about your patient history is important to educate others, so withholding names is a good way to do that. Without naming them, I can be comfortable in being completely honest about my experience. I have read that doctors do look for bad reviews online and try to have them removed.

I am so glad you are now in the care of expert specialists. There was no internet for research 20 years ago, but now we have that advantage. When I chose my surgeon at Mayo, I looked at his area of interest, the papers he authored and coauthored, his education and credentials that included a full undergraduate scholarship, and being awarded accolades for his research papers at spine conferences. He was well respected by his peers, had been trained at Mayo in Neurosurgery, then hired and retained by Mayo and teaches in the neurosurgery 7 year training program. That all said to me that he was at the top of his game and I knew when I met him at a consult that he was very intelligent and he answered my questions well. I had watched so many videos from spine conferences and presentations at that point, that I knew he was giving me good answers for the current trends in spine surgery.

When do you expect to have your next stabilizing neck surgery? You had asked about my recovery time, and I was able to just take my time and sleep a lot. Because I had no hardware, I was in a neck brace around the clock until it began to fuse which was 3 months, and that was my own choice. I didn't worry about it or feel claustrophobic. It was worth it to keep metal off my spine. After that, there is weakness from muscle atrophy, so I did physical therapy for awhile after that, maybe 6 months. At 3 months when I took off the neck brace, I was so exhausted just holding up my head. You are suppose to wean out of it slowly. I did feel pretty good 6 months after my spine surgery. It really takes about a year for a fusion to heal and to reach maximum recovery after surgery, maybe even longer. The bone growth continues for a long time to fill in and solidify the new vertebrae. I still stretch out skin that gets tight where the incision was periodically and it's been several years.

I am glad your current doctors have been honest with you about the negligence of the original surgeon. At least you have that validation. I do feel we have to ask a lot of questions and make sure we completely understand why a proposed surgery should work, and understand all the complications and risks we take on in going forward. There are statistics for all of that, and each surgeon has his specific statistics of successful surgeries, which may not mean exactly the same thing to a patient who may still have pain after a successful surgery. You need a compassionate doctor who really wants to help because he loves his job. For me, there is no room for arrogance in a doctor patient relationship; I will just move on and find someone better. It's like a job interview, and I get to hire the most qualified doctor to fix my problem. To me arrogance implies that the doctor thinks I'm just wasting their time or not smart enough to understand. I will ask the detailed questions about how and why it works or doesn't work and how many other ways there are to solve the problem, and what makes me a good or not so good candidate. We as patients have to advocate for ourselves and have the right to make the decision about what we authorize when we sign a consent form. It took seeing 6 different surgeons before I fond a good one that I could trust, and my gut feeling was right about him.

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