Spinal fusion of C1-C6

Good morning, and thank you for taking the time to reply. I have heard about gluten in the past. I have actually never tried completely getting off of it. I have been pretty resistant to that because I love what I eat. At this point, my stomach problems are managed by so many different drugs, that it really does not matter what I eat. I could eat a cheeseburger or a jalapeno pepper it just makes no difference. A few weeks ago I had and endoscopy done because they had found some intramural Mass. They go in and do some biopsies. Tell me I have gastritis. Duh. How can I not have gastritis give all the meds I take? Then they tell me you can no longer drink coffee or eat chocolate, and this is in the recovery room. I am not giving up coffee or chocolate. I am fine with the trade off if there is one, which I doubt. I hope you can understand this. There are some areas where I'm just plain stubborn. I do have to tell you that I am very pleased with the pelvic floor therapy and biofeedback that I have been doing. I also just received the motegrity the other day to add to the list of meds. I'm already seeing a huge difference. I cannot remember the last time I felt like I had emptied. I'm going on two days in a row now. I also now have zero stomach pain. It is like a miracle. If this continues, I am confident my stomach will be okay. I am very glad that this worked for you and you no longer have stomach problems. You have had multiple surgeries. How are you doing now? Are you able to walk without assistance? Again, thank you for taking the time to reply. All the best, Robert

@hodinator
Robert, Thank you for your wonderful response. I am touched by your words of appreciation, and receiving those words makes my time volunteering here very meaningful, so thank you.

For your scheduling question about if you can make one trip to Mayo for an evaluation and surgery during the same trip, Mayo will need to answer that question. Mayo does reserve some capacity for emergency patients, and patients are flown in from around the country. I do not know how your condition will addressed, but I think you are being given some priority if they have mentioned an appointment in a few weeks. The wait is usually long to get in for an evaluation with a well respected specialist. They do give priority based on medical need. I was told it would be about 3 months when I applied. I actually got an appointment in 6 weeks because of a cancellation, and in accepting, I had 5 days notice to get there, and I did. I understand that your concerns are an effort in cost savings which I understand, but hospitals can't operate like that, and must be able to know how to schedule staff members and not overload their capacity and to efficiently cover operating expenses. After my consult at Mayo, I was scheduled for surgery 5 weeks later, and then because of a cancellation, I could have had surgery in 2 weeks, but I felt I wasn't ready at home with getting clothing organized and accessible and cleaning etc, because I knew I would be recovering for months and not be able to do much.

My consult at Mayo was scheduled for 2 days with the first day meeting a neurologist who works with the surgeon. I had nerve conduction studies and muscle function tests, and blood work all based on the evaluation from the neurologist. They contact other departments and schedule tests and give you a printed schedule. My neurology test was scheduled for the next day, but I was able to wait standby, and had that test at the end of day 1. The other test scheduled for early on day 2 was a vascular lab study about thoracic outlet syndrome (which I have), and a consult with a vascular surgeon about the overlap in symptoms between TOS and a spine problem. I had seen the vascular surgeon only the hour before, and I was in the consult with the spine neurosurgeon when his phone rang, and it was the vascular surgeon reporting my evaluation to him. That is the magic in how a team approach at an interdisciplinary medical center works or should work. Doctors actually communicate with each other the same day for the benefit of the patient.

Since you are interested in Dr. Bydon, I thought you might like to see these links of him speaking about his research and practice at Mayo Clinic.

It sounds like you have all your ducks in a row. Do you have other questions about care at Mayo?

Hello again, Jennifer! I wanted to tell you how much I loved your story! I just read it to my wife. Not only that, the painting is magnificent! The attention to detail is astounding. I am particularly partial to the fleur-de-lis by the way 🙂 what a wonderful tribute to Dr Fogelson and to the hospital. I hope that painting is hanging somewhere prominently.

I also noticed another similarity in our stories in addition to the fear of surgery in general. On Labor Day in 1972 when I was 18, I was in a serious car wreck. My right zygomatic Arch needed reconstruction. There was an eighth of an inch crack in my orbital lobe that they decide to leave. There were also two hairline fractures in my nose that they did not fix because the surgeon thought I would look more handsome if he didn't fix it. LOL! Surgery was successful. I am pretty certain that that was a major blow to my skull and may have affected my neck. I am sure all the years of karate exacerbated it, but two things that were really serious happened in 2015. The first involved a chiropractor who almost took my head off, literally. I'm not sure why he did that. It was the most violent adjustment I had ever had and left me in terrible pain for weeks. Then over the summer I was having a slice of pizza with my daughter. I went to sit down. As I did so I did not see a ledge for people that can stand and eat, and my neck slammed back into it right around the top of my neck. I literally saw Stars. Riding the Cyclone at Coney Island so many times in a row and going so often didn't help either. Anyway, it's all good!

Thank you for providing the videos of Dr Bydon. I have watched all three. Pretty sure the stem cells are experimental and not covered by Medicare. I am very interested in robotic surgery as well as minimally invasive surgery as you can imagine.

I really do not have any other questions at the moment. I'm sure my questions will be answered, including the ones about scheduling. I was really ready to get started and then find out today that my new cardiologist will not pass me for surgery. Now he wants me to have a chemical stress test. Okay. Let's go! Schedules me for 2 weeks from now. I find that aggravating. Anyway, it's all good! So I'll get that done and I guess it's in God's hands. It's all good, and I am emotionally prepared for all outcomes. God bless you, Jennifer! You have been a great help and have also helped assuage my fear of surgery due to the pain.

I am 75 years old and I’ve had a spinal fusion in my lower back. I went to a neurosurgeon when it became evident that I was going to need some additional work done in my lower back. He thought that there might be some thing else going on because of Mike loss of strength in my hands and fingers and sure enough, he found problems in my neck from C1 through C6 and he wants to do a spinal fusion of those joints I’m terrified, C1 and C2 are barely hanging in. I have to wear a cervical collar because my doctor told me I am risking a virtual decapitation if I am hit from behind C3 to C6 are unstable and his description of my function level after surgery would mean that I would no longer be independent , he told me because of my age I ought to think very carefully about what I wanted to do because of the side effects of the surgery. I’m pretty sure I have decided not to have it which means that as my condition deteriorates my doctor said I could simply stop breathing , I sure can’t believe that in this day and age such a barbaric surgery is all they have to offer either that or death. Anybody have any advice for me other than praying

To me, this sounds like Myelomalacia, which is what I have been diagnosed with. Fall, it could paralyze you, surgery could do the same thing, continued deterioration can cause you to stop breathing. My opinion is that you get a 2nd opinion before making any decisions, and a 3rd or 4th, if necessary. I am set up for my 2nd and 3rd opinions next week and will likely have at least one more. Best wishes, please keep us updated.

Yes that is correct. However I also have: Rheumatoid pannus of cervical spine (CMS-HCC). My lower back problem is minor compared with these two new neck diagnosis. I originally sought help for lower back - imagine my surprise. You did not mention your age. unfortunately, treatment options change a little bit as you age and insurance isn’t so quick to want to cover certain procedures that become riskier. Thanks for your advice. I will definitely look for second opinion.

I am 63. I am also dealing with lower back issues also. I hope you find some answers and some type of "fix", that's why I believe in second and third opinions, every doctor has a different skill and knowledge level.

I had spinal cord fusion from c2 to t2 and had 2 rods on either side of my spine plus 7 screws on each side
The surgery went well it was done on October 20 2021.

Randy 54

@donnalou0917 You have a tough decision to make. There is a lot to consider. In my book, 75 is not old. I suppose the answer to that may be based on what ailments someone lives with. I hear what you're saying about loosing independence, but that will also happen if you don't do the spine surgery. You'll become housebound because of a fragile spine that would cause an injury to be catastrophic. Falling at home could also do the same thing and paralyze you if the instability injures the spinal cord in the fall. Injuries with instability at the skull spine junction can be fatal because it can sever vital functions in the only connection between the brain and the body. That is why your doctor is concerned. There can also be years of being paralyzed with round the clock assistance needed that is financially difficult if a person cannot care for themselves.

Fusing multi levels in the cervical spine is a big change and a compromise because you will loose the mobility of those segments. It is done to protect from further damage. The phrenic nerve which goes to the lungs for breathing exits the spine around C 3 and below which are the levels you have in question which is why your surgeon said you could stop breathing because of instability there. Honestly, that would scare me more than surgery. The surgery happens and is over and the patient recovers to their maximum improvement whatever that is, but the fear of loosing the ability to breathe will stay there. This is what happened when actor Christopher Reeve had a spine injury in a horse jumping accident and he was on a ventilator the rest of his life. He had made some progress in temporarily weaning off the ventilator for short periods, but he couldn't breathe well enough on his own to stop using it and he died from pneumonia. Your lungs have to be able to move to not only breathe, but to clear the phlegm that can accumulate, and if that is compromised, it turns into an infection easily, and the lungs may not be able to physically clear the excess phlegm produced by the infection.

I think of surgery as amazing for what it did for me with a C5/C6 fusion. I had spinal cord compression because a disc ruptured into the spinal canal and bone spurs grew there alongside it. I knew my choice was to face my fear or accept disability as my future. I chose to face my fear and have the surgery and I am so glad I did. I was terrified too and I had panic attacks for 4 months until I figured out how to defuse them, and found the root cause of my fear. I didn't think I was capable of this, but I did it on my own and no longer fear surgery. That has been tested a few times with oral surgery and breaking my ankle and I was fine and sailed though the medical stuff calmly. If you want to beat your fears, you can. You have to want to work on overcoming it, and it will give you freedom. Consider this..... don't let your fear make your decisions for you. If this was happening to someone else instead of you, such as a friend, you might be able to consider the options objectively without fear.

Here is a discussion you may find helpful. A counselor may be able to help you work through all of this uncertainty and stress.

- Just Want to Talk - "How can I defeat my anxiety about medical tests and surgery?"
https://connect.mayoclinic.org/discussion/how-can-i-defeat-my-anxiety-about-medical-tests-and-surgery/

What questions do you want to ask of members here or questions directed to your doctors and medical providers?