severe multi level cervical issues and severe S1 changes

@janagain You have a lot to think about. Your doctor is right about your risk of paralysis if you were involved in a traffic collision in your condition. The cervical spine is the connection to your brain for everything in your body and that might give it some priority, but that is your surgeon’s decision. I do see the collapsed C6/C7 and bone growth on the end plates on your imaging. That may start fusing itself together without surgical intervention. At C3/C4 your spinal cord is being compressed.

I know this isn’t good news. It would be best to just stay home while you wait for your surgical consultation. Often waiting for a consultation can be a few months, so waiting a month isn’t excessive. You just have to make sure you don’t fall and cause an injury. You could wear a neck brace for protection.

I did something similar waiting for my consult by wrapping a bead filled wrap on my neck and tying it with a scarf to limit my movement. I tried not to drive anywhere. I had a fusion at C5/C6 8 years ago.

Your ability to bend your neck forward will be reduced with a fusion at C3/C4 and that may affect if you can bend to look at piano keys. I don’t know if you need to do that to play. You may be able to train yourself not to look at the keys or set up a mirror above the piano to see your hands. Bending forward will stress your cervical spine, and good ergonomic posture helps take stress off the spine and reduce wear and tear. I have a bit of this too because I am a visual artist and need to look down at a painting. I make sure to straighten up and stretch and doing other things helps maintain core strength to support my spine.

I think your piano will help you get through spine surgeries. Focus on that as your goal. I did this with my art work because I was loosing the ability to raise my arms and support their weight and had to stop painting. It was 11 months after spine surgery that I accomplished my goal, and I painted my surgeon as a gift to him for giving me back my ability. It meant a lot to me to do that to prove to myself that I could paint again at a level that I expected of myself. My surgeon was delighted. I think you will make beautiful music again.

Jennifer

Thank you so much Jennifer for taking the time to write such wonderful thoughts to remember. Waiting is the hardest part. I'm retired and I play keyboard in a band and if I just have a little bit of motion to look down, that would help. It's wonderful to hear that you are painting again! You accomplished your goal and that's what I'll keep in mind. I bet your paintings have become even more beautiful and if it takes me 11 months or more, I know I'll get there because I will also "prove to myself" that I can play the piano again. When you wrote that, I closed my eyes and visioned myself playing . I'll just have to do things differently.
I purchased a "cold pack" type neck wrap and a soft cervical collar and a cervical pillow for sleeping.
Thankyou Jennifer, just taking the time to share your thoughts has given me more hope!!
-Jan

@janagain Jan, I play keyboards too. I learned organ as a kid, and then played in a community concert band in percussion playing the bells and xylophone as well as other percussion toys. My husband played trombone and we did a lot of summers of concert series in the park and a concert trip to England some years ago.

Keep that vision of yourself playing music in your head, and bring that to your mind wherever you need it to keep going toward your goal. Visualization and hearing the music in your head will help in a fearful situation, and it is what I did a lot. I think you will have some percentage of movement to look down, and you can also move your eyes downward and not bend your neck. Head turning is done by C1 through C4, so you would loose some of that with a C3/C4 fusion. Most of head turning is done by C1 & C2 which you should still have, but with less range of motion. What I did when I was anxious was to sketch a picture of my surgeon while I waited for the surgery. I could do that with a sketchbook in my lap and not need to lift my arms. It also helped me get comfortable with him, even though it would be awhile before I would see him, and I was nervous and wanted to prepare myself.

I thought you might like to read the story and watch the painting come to life.

Mayo News Story
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/

More pictures here
https://connect.mayoclinic.org/comment/221703/

This post has the time lapse video of creating the painting and some very nice music.
https://connect.mayoclinic.org/comment/222044/

Would you please share as you go through this process? I will help any way that I can if you want to discuss your options and opinions. Are you happy with your surgeon? Will you be seeking second opinions? That is a completely normal thing to do, and perhaps your doctors may have suggested this to you. I would love it if you come back after you have recovered and post a video of yourself playing some music! I really would love to hear that!

Beautiful.... beautiful music

Jennifer

@janagain Jan, I also wanted to share this with you, an inspirational video of someone I knew personally. His message of learning to play the guitar again after a stroke is very inspiring. Sadly, Pete is no longer with us, but his story and his words and his beautiful music remain.
Jennifer

Hi Jennifer,
Pete Huttlinger is amazing and his story is incredible. I'm so happy he spent his time on earth doing what he loved most, making music. He was incredibly gifted and well known. I don't know how I missed ever knowing about him! Amazing, thank you for sharing this with me. I love his words , "Don't Just Live, Live Well!" As I get older that really brings this reality forward. I really do try each day to choose what makes me live well. And other days , I can hardly move. I've decided for now, I'm going to be doing some sewing. I've purchased all the fabrics and leather and I just need to order the pattern online. Oh yes, there's more to me than playing piano. LOL!
I'm so glad to have a new friend that understands, thank you! And when my surgery is over and I get my arm use back, I'll make a few recordings for you. I also play Mountain Dulcimer with a group of women here in my town of Fallbrook, California. We really enjoy playing in 3-4 part harmonies, really pretty. I'll keep in touch with you. My next appt with the Neurosurgeon is June 12th.
Thank you for all your encouragement, Jan

@janagain Jan, I had purchased Pete's CD that was a musical story and a short story that he wrote about fictional place out west called McGuire's Landing. It is mostly instrumental with a few vocal ballads. The music reflects the chapters of the story about an Irishman named McGuire. For some reason, I had not listened to it, it was on my "To Do" list, but when I was looking for ways to relax and calm my nerves about my surgery, I listened. I was able to get lost in the music and this album is what I used to start my music therapy and deep breathing and learning to lower my blood pressure. I did this so much, I could call it up inside my head and hear every note, and that helped me through a very painful spine injection. It is my method to lower blood pressure when I feel stressed. You would love this. If you go to his website and YouTube sites, you can listen to this and there are videos of Pete talking about this project. It was a masterwork that he spent years creating with some known session players from Nashville. Pete and his wife also wrote a book about their medical journey called "Joined at the Heart". Reading that helped me as I was on my spine journey.

Playing Mountain Dulcimer in a harmony group is pretty amazing! Are there any videos of your group playing together? I would love to be able to do that. I haven't done any sewing for a long time, but I have done a lot of that too. I seem to have more creative projects than time to do them, and now that the weather is nice, I like to be outside. Staying busy will help you pass the time as you wait and give you something positive to focus on.

You might like this discussion "Art for Healing."
https://connect.mayoclinic.org/discussion/art-for-healing/

Jennifer

Jan,
I'm very sorry you are going through all of that. I am a 58 yo male. I had my neck "fused" from c3 to T1 in 2020. Fused in parentheses because the bone graft failed between c4-5 and c7-Tl (but the hardware is intact and my neck is stable). That surgery was a revision and extension of C3 to C7 fusion in 1998 that was done incorrectly. Except for the 6 month recovery, the 3+ years since the surgery in 2020 have been productive and relatively pain free. I wish I had done it sooner. I don't see any reason why you wouldn't be able to play the piano after you are fully recovered. You may have to change your posture/seating so you are looking down at less of an angle. I don't thing the side to side would be an issue. You will want to do regular stretching and range of motion exercises even after you are out of post-op PT. It took my muscles at least a year to adjust to the lack of movement in the spine. Swalllowing can be issue after this type of procedure. It was in my case for about 6weeks. My first bit of advice on doctors is to get at least 3 opinions. I would ask your pain management doctor who they would recommend and then also do independent research. Having seen the results of their work, my PM doc steered me away from some well known local docs and recommended one I am very happy with. It is worth traveling for that. I would use the time waiting for your current doctor to seek 2nd and 3rd opinions if possible. I can't overemphasize the importance of getting multiple opinions. Surgeons are not equal anymore that professional pianists are. I would ask what surgery if any needs to be done first but with the arm weakness it sounds like the neck to me. I would ask about minimal invasive decompression and artificial disc surgery. I wouldn't necessarily use the same doctor for back and neck. Some are better at one than the other. Don't be afraid to look at Orthopedic Spine docs as well as Neurosurgeons. I would stay away from any Neuros that do a lot of brain surgery. The spine is its own specialty. You can look in Healthgrades at their doctor profile and it will actually show how often they do certain procedures compared to their peers. Regarding your neck, I would ask "How many fusions of this length have you done? What percentage have had good outcomes?" Healthgrades also has patient reviews which can be very useful. I hope some of this is helpful to you. Please let me know if you have any other questions.

Very good information , thank you for taking to share your thoughts. I'm going to see my primary on Thursda and ask her for a refferal. I never heard of Healthgrades so I'm quite interested in that. And you shared your recovery with me that gave me a better idea as to how I hope to be feeling. I'm going to call the pain management dr tomorrow, he was really understanding about my situation. And you're right about Neuros that do alot of brain surgery and not so much spine. Excellent points. This is a very intense surgery and I want someone that has specializes in spine issues. Interesting too that you wouldn't necessarily use the same surgeon that repairs the neck, repair the the lower spine.

Playing piano, If I can just look down a little bit I can keep my fingers correctly on the keys. If I lift my hands to play new chords etc, that's when I'll need ti look down to make the correct placement. If I can just look a little bit, I'll be ok.

Thank you for such great information. I really appreciate your advice.
I'll check out Orthopedic Spine docs too. I want to connect with the surgeon as well as I did with my Pain doc. He was incredibly supportive and understood my frustration. In other words, he told it like it is. Very up front.
Very happy to hear you are feeling pain free from the surgery in 2020. It must have felt strange when you woke up after surgery not knowing exactly how you were going to move. You gave me some hope that through recovery and PT, I'll be ok. That means a lot to me because I'm feeling so anxious. Great information .. thank you so much.
Jan

You are certainly welcome Jan. I am happy to share what I have learned.
As far as not necessarily using the same doctor..I think that it will be much easier to find qualified surgeons near you who have done many, many lumbar fusions than it will be to find just a few who have done more than a few cervical fusions of 4+ levels(Simply because they are relatively rare). I would also limit my surgeon search to those who do both fusions and minimally invasive procedure and not just one or the other (so as not to get a skewed perspective). It's possible you may need fusion in some segments of your neck (or back for that matter) and others can be treated with something less invasive.
Regarding you playing piano, if you only need to bend your neck slightly, 50% or more of the bending in the neck comes from C1 and C2 segments so you should be good there. I do a lot of work at the tool bench in the garage and I do definitely feel a lot of stess and strain(both above and below my fusion) when I have to look up or down at a sharp angles. It's not a as much problem if I can keep my work further away from me.
Initial recovery- 4 level (C3-C7) in 1998. I have to say that one was pretty rough, but it was necessary so as not to become a quadraplegic. I don't remember being in a lot of pain afterwards (maybe because I had so much before) but the significant swallowing and voice issues I had, and losing that much mobility at once(previously being young,healthy and very physically active) was a big surprise and quite challenging. As I mentioned, that surgery was done poorly(doctor shop!!!) and the C4-C5 joint never fused. The revision surgery I had in 2020 redid that joint and extended the fusion to T1. That recovery was much easier.
My neck surgeries have all been from the front(anterior cervical fusion discectomy-ACDFs) but some neck fusions are done from the back. (And some both front and back) From what my surgeon said the front/back combination has the best chance of a getting all joints solidly fused. I wish he would done that on my 4 years ago but he didn't think it was necessary. A drawback is that the posterior approach makes for a condsiderably longer and more painful recovery. On the plus side, with the rear approach there should be no issues with the swallowing and/or voice problems associated with the frontal approach. Your specific problems and anatomy will indicate which approach is best for you. Let us how things go and if you have any questions please ask.

Well .. I'm back from the appt with my primary doctor. She listened to my story and felt really bad for me that my journey into the doctors of Neurosurgery wasn't going so well. She did refer me to a Neurosurgeon that has very high Healthgrades ratings. (thanks for that tip) Patients wrote very positively on his review. 2 could not tolerate him for one reason or another and I expect that everyones experiences differ even if he is a great doctor. That appointment is just a few days away. With the information you suggested, I'll question his experiences with invasive decompression and artificial disc surgery. After this appt , I'll meet up with my pain management doctor and get another referral. I hope to be in surgery soon and on my way to recovery. I'm think, not sure, that they are planning on doing this surgery posterior vs. anterior. Although one mentioned that they do both, I'll know more in a few days. Again, thank you for all the information you've given me. I'll will definitly report back as I go along this journey. -Jan