Spinal fusion of C1-C6

K live in High Point NC looking for a specialist for arachnoiditis in 2013 had failed adult scoliosis fusion T12-S2 bones did not fuse and both rods have broken & loose screws.2015 I had SCS that lasted about 1 year then pain moved up to cervical & upper thoracic were the SCS want reach.2016 was told I have arachnoditis at L2-L3,L4-L5 with burning feet & shoulders bladder problems,shock like spasms from low back to left calf,tingling in both legs,headaches severe sweating spells and blurred vision when upper spasms happens see pain management for medications but no one I can find to help treat the actual problem from arachnoiditis.Please help direct me if you can.Thanks.

@harris73 I found this discussion where other patients were discussing their doctors. You may be interested in this. I found this by using the search field at the top of the screen and just searching for "Arachnoiditis".
https://connect.mayoclinic.org/discussion/i-am-looking-for-a-doctor-in-nc-that-treats-patients-arachnoiditis/

Hi @kdj I was recently (a year ago) fully fused from C2-T2 and I had an additional surgery to add rods to the back of my neck for stability. This was my fourth and fifth cervical surgeries. Overall, I am recovering well, although I did lose a significant amount of mobility in my neck which has taken some getting used to. That much fusion is a big surgery, and it has taken me about a year to recover. In addition, one of the side effects of this surgery has been daily chronic headaches. I am hoping to avoid having C1 fused as this would limit mobility even more.

Would you like to share more about why you need this surgery and how some of us might be able to help with your concerns or questions? I see this is your first post - so I want to welcome you to the forums!

Hi @kdj I was recently (a year ago) fully fused from C2-T2 and I had an additional surgery to add rods to the back of my neck for stability. This was my fourth and fifth cervical surgeries. Overall, I am recovering well, although I did lose a significant amount of mobility in my neck which has taken some getting used to. That much fusion is a big surgery, and it has taken me about a year to recover. In addition, one of the side effects of this surgery has been daily chronic headaches. I am hoping to avoid having C1 fused as this would limit mobility even more.

Would you like to share more about why you need this surgery and how some of us might be able to help with your concerns or questions? I see this is your first post - so I want to welcome you to the forums!

Hello jacklynn12, I had a cervical fusion from occiput to T3 in 2016, It was performed because of instability and spinal cord compression due to long term juvenile rheumatoid arthritis. It took about 3 years for me to really get used to not being able to move my head, twisting from the waist, proper posture, etc. But, I did. The surgery was long and difficult for me, because I have a difficult airway. I was placed in ICU for 5 days (planned ahead of time), and then agreed to in patient rehab for two weeks, then outpatient for two months. Residually, I have much less pain, but get occasional headaches and deal with ongoing neuropathy in my shoulder/upper back area. I'm not sure what else to tell you, except what I experienced before. Because of the spinal cord compression, my surgery was urgent enough to be performed within a month of diagnosis. Prior to diagnosis, about 2 months before surgery, I started getting symptoms--"zaps" down my legs, numbness in my fingers, hands, and reduced coordination in my hands, as well as more pain and a sense of heaviness in my head. I was tired all the time.

Please let me know if I can offer anymore information, and I wish you all the best!

I had car accident and went to my orthopedic. Head and neck pain. They want to fuse C2-C4. Severe stenosis, bulging disc and don’t ask me to bend over. Throbbing head and dizzy when I come back up. I’m not so sure I want to have this surgery. I’m 60 a widow young. I work full time retail. What is recovery time you think.

@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.

I’ve talked to 3 different surgeons. My whole C Spine is compressed and 1 wanted to lay the whole back of my neck open. I do have a lot of medical knowledge. I have both CNA certificates and my aunt is a nurse with multiple specialties. I wasn’t going back to him. I know the stenosis needs to be fixed and no guarantee of any pain relief. I do a lot of research on doctors I go to after I see who I was referred to. None of those 3 qualify as far as I’m concerned. I want to get back to riding my motorcycle and they all said not until 6 months after surgery. Another problem is for long term disability my company only pays 40%. But I’m a self checkout cashier and it’s a lot different than regular. I had to quit regular cashier because of the pain. I’m going to a neurologist head doctor for my constant headache and migraines. Maybe he will have someone in mind better. They forced me to take intermittent FMLA for the head and neck pain. This is a high end grocery store and they don’t pay much. I know I have to have another MRI. The other thing is how long do I wait? None of them said anything about time frame, like I should really do it before end of year or anything. I asked and they didn’t seem to be too concerned. My orthopedic is more concerned than the surgeons were. Does the pain ever get any better? I feel exhausted from it all the time.

@jojo58 Yes, pain is exhausting. I used to need a nap if I pushed a shopping cart. I experienced that too, and yes it gets better. My neck still gets tired, but I also have thoracic outlet syndrome which is another condition that affects it and I do some stretching and self care to help. If I get a one sided pain on the back of my head, I check my vertebral alignment because my vertebrae can independently rotate and cause a headache. It all stops when things are back where they belong. I have worked with a physical therapist on this.

Most surgeons consider an MRI to be current if it is within a year, but if symptoms are getting worse, sooner makes sense. I saw my bone spurs double in 9 months time on consecutive MRIs. You definitely need a good surgeon. Have you considered coming to Mayo for an opinion? I had my surgery there with one of their best. If you want to try for an appointment at Mayo, you may use this link and fill out some information and they will contact you. http://mayocl.in/1mtmR63

Hi, I had c5-6-7 fused 20 years ago and have had no problems until the last year. My neck is a disaster of collapsed and herniated discs, arthritis, stenosis, mild instability etc. My hometown neurosurgeon wanted to do a complete cervical fusion plus t1-3, soon as he saw MRI. Since I was having arm pain and have shoulder arthritis I came to Mayo’s Spine Center in Sept to be sure of the source of the pain. I have never had such a complete and thorough work up by several different specialties and am now working with pain specialist on diagnostic injections to further identify pain source. My neurosurgeon at Mayo could have easily justified surgery based on imaging alone, but has done several additional tests and been very conservative, and tried to avoid surgery if possible.