Locking C1 and C2 to stop the progression into my brainstem

@day0718 Welcome to Connect. That is a big life changing surgery your doctor suggested. Have you had other opinions to verify agreement with this plan? Not all surgeons will operate on the levels right under the skull, so you need a real expert who is experienced with this. I have seen a TV commercial for Northwestern in Chicago with something like this where they have to rebuild C1 and C2 and secure them to the skull. Your proposed surgery will fuse your entire neck and you won't be able to turn your head or bend your neck in any direction. That is a question for your doctor and your insurance company if you should give up driving if your neck is entirely fused. I don't know if you would develop back pain later after a surgery like this, but you won't be moving normally anymore and the rest of the spine has to try to compensate.

Has your surgeon explained all the issues completely? Did they show you on your imaging how serious this issue is? I had 6 surgical opinions for my C5/C6 fusion and only one of the doctors really understood my condition and got it right. I had spinal cord compression only in my neck and it did cause pain all over my body and gait disturbances as well as loss of arm coordination. My surgery gave all of that back to me by decompressing my spinal cord. Are you being seen at a major medical center that has taken a number of similar cases? I know this is a tough decision, and getting several more opinions from well respected experts in this type of surgery may help you make a well informed decision.

Thank you for all your feedback. I haven't seen any other doctor other than the Mayo surgeon. He has performed surgery at that level of the neck. My surgery is soon and I am now uneasy about it. The surgeon did explain what could happen and that I will lose rotation of my head. Although he did state whatever function I have lost will not come back. There are so many unknowns with this surgery. As I mentioned earlier, I am uneasy. I decided I owe it to myself to get another opinion. Not many places will operate at that level. I will have to go to Gainesville. Debbie

Wow—I do not know your diagnosis but that seems severe. I just got my MRI results back and see the spine doc thursday. I have mild and broad based disc bulge c-2 thru C-7. Severe thecal sac narrowing c-6 c-7. Physical therapy and continuing at home with the exercises has helped me tremendously. The therapist told me you can recover if you keep up the exercises. I am sure you have done all of this. I worry about my head as well. How bad was yours before you got this diagnosis? I have weaned myself off gabapentin from 4 x day to only at bedtime.

day0718, Your story is very similar to mine although it does not involve C1-2. I'm scheduled for a posterior laminectomy on November 24th. They will be fusing C5-C6-C7. That's where my spinal cord is FLAT. This is my 3rd cervical neck surgery. The dr said that I will have some restriction but I should be able to con't driving etc. He also told me there could possibly more pain associated with posterior approach. And more pain in general after surgery. And that it may require more surgery in the future. I think that is because of the possibility of adjacent bone disease. That's when the repaired part holds up but the adjacent joints start to give out. It's all too much for me to here the con's. I too have lost almost all my strength in my left arm and it's starting in my right arm also. I'm losing dexterity in my hands/fingers. I play piano every day to keep them working. My balance is way off. I have a hard time walking and navigating my path. I can't even stand on one foot without leaning way to the side. And that I could live with , it's the unknown with the neck surgery as to the outcome of my surgery,
I hope that my strength will come back after the surgery even if it's a little bit at a time OR the surgery will stop the progression.
Keep posting so that I can hear how things are going for you. I will post after my surgery and tell you how I'm feeling.

@janagain
My surgery is scheduled for 11/3 and the more I think about mine , the more I went a second opinion. I had severe osteoporosis . I was on Tymlos injection everyday for 2 years. My bones have gotten stronger, however are they strong enough to hold C1 and C2 without having to attach it to the skull. Spinal surgery is tough. Quite honestly, I am scared to death.

I hope your surgery is as successful as mine was 11 years ago. I had severe neck pain caused by arthritis. A spinal neurosurgeon fused the C5-6-7 by putting in a metal cage. There was hardly any pain after surgery. I had to wear a neck brace except at night for a month. The C1-4 was inoperable as it was fused by the arthritis. This area started to give me pain so I have been on Gabapentin with some relief. I have had cortisone injections and ablations at a pain clinic. The C1-2 seems to be causing most of my pain. It is important to have more than one opinion and also a neurosurgeon to do the surgery.
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@joannehart
Hi. Yes my pain is coming from C1 and C2. It is in my neck on the right side. Even my ear hurts like I have an inner ear infection. I decided I must have a 2nd opinion as this is major surgery. And I might come out of it without rotation of my head. I do need surgery to stop the progression into my brain stem but it is wise to get another opinion.

@day0718 I'm glad to know that you have a surgeon at Mayo. I was hoping you could go there. They do see a volume of more difficult cases there and there are a lot of surgeons at the Rochester campus. My cervical fusion was at Mayo Rochester and I was impressed with their expertise and care. I had great results. Mine was a single level fusion of C5/C6 several years ago. You will be in great hands there. Ask for what you need if you have a lot of questions. I had the nurse also hold my hand in the operating room. She was so nice.

I know you are on a short schedule to surgery. Since you are already a Mayo patient, could you get a second opinion there? Perhaps it would help to talk to the surgical nurse. I did when I was fearful before my surgery. I hope being on Connect isn't making your fears worse. Most members here have not had your same condition with C1 and C2, so we try to support you as best we can.

If I understand correctly, the joint between C1 and C2 will be fused, correct? The rest of the cervical spine will have laminectomies which isn't the same thing. However, if laminectomies are done at multiple levels, fusions may be necessary as well to stabilize the spinal column there. Laminectomies remove a portion of the front part of a vertebra to open up the spinal column and relieve pressure. Fusion involves cutting off the base of one and the top of the other, making a slurry of bone bits and blood, packing it into the space, and transfixing them together with metal appliances so that the area heals together and fuses the two into one. So the area between the discs now is solid and no longer allows movement. You will definitely lose rotation of your head as that is the function that occurs at that level. The first cervical vertebra is very flat and slightly curved like a dish and the notched area of the base of the skull rests there. As the rest of the spinal column goes down the body, the vertebrae get taller, to result in a more cuboidal shape and rotate to allow the neck and torso to turn. Make sure that the surgeon or staff counsel you exactly what the changes will be and what your new limitations will be. I am both a physician and patient and have found that surgeons often overlook educating surgical patients about post operative changes and limitations due to the new anatomical changes. I myself have C2-C3 fused as well as T4-sacrum fused. I wasn't told how the changes would affect lifestyle. Sometimes however the surgery is absolutely necessary for quality or preservation of life. But I think you are in the best hands at Mayo. Two of my spinal surgeries were there. If youre in Arizona Dr. Matthew Neal is an excellent Neurosurgeon and I highly recommend him. Best of luck. God bless you.