Has anyone dealt successfully with Cervical stenosis without surgery?

@badbonz
Thanks for asking. I referred myself to Mayo Clinic and specifically to Dr. Fogelson because I read his research papers and looked at his medical training ( Neurosurgeon trained at Mayo & also Orthopedic spine fellowship ) and having both specialties for spine surgery was a bonus. I found that he was teaching neurosurgery at Mayo and co-directing surgical lab courses at the Spine Research Society Annual meeting for other surgeons in cervical surgeries, both fusion and artificial disc, and was a spinal deformity expert, and someone who takes the complex cases. He had also been recognized by his undergraduate university with a full scholarship and graduated with honors.

See https://www.bsualumni.org/young-alumni-award-dr.-jeremy-fogelson

After my surgery, he was listed in the Becker Spine Review as a spine surgeon leader to know
https://www.beckersspine.com/spine-leaders/item/37080-spine-surgeon-leader-to-know-dr-jeremy-l-fogelson-of-mayo-clinic.html
It was by reading one of Dr. Fogelson's papers, I came across a term I had to look up, and in doing that, I found medical literature with cases similar to mine, and I had found what 5 other surgeons had missed completely.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
I knew I had found a surgeon in Dr. Fogelson who would understand the complexity of my case, and it was because of the paper her co-authored, that I knew there was an answer. I had been trying to get help for 2 years, and none of the 5 surgeons I consulted would help me. I also have thoracic outlet syndrome that complicated it a bit because of overlapping symptoms, and I needed to be seen somewhere where both would be understood.

I had "funicular" pain or referred pain that confused 5 local surgeons and none recognized that this pain was being caused by cervical stenosis. I literally had pain all over my body caused by spinal cord compression in my neck, and there is no definitive test to prove that this happens, except that surgery to decompress the spinal cord fixes it. The indication that predicts this is having an epidural spinal injection that takes away all the pain; but it isn't definitive proof. I had that experience where the spinal injection temporarily took away all the pain, by the doctor ignored the results and looked no further. I had documented it completely on body diagrams, and there was no doubt in my mind, but that was what flagged me as a complicated case. When I got worse, the last surgeon dismissed me after I had done everything he asked of me over 5 months.

I called Mayo and asked about Dr. Fogelson and they told me that patients really like him. I asked to send my imaging in to him, and I wrote him a letter explaining my symptoms and I sent the medical study I found and told him I found it because of his paper. I was offered an appointment, and I was impressed when I met him. He was intelligent, kind and compassionate, and down to earth. He answered all my detailed questions well. I knew a lot about spine procedures since I'd been reading literature for 2 years and watching online videos of surgeons presenting lectures for other neurosurgeons at conferences and that is also how I knew that the surgeons before I came to Mayo were not getting it right. They were looking for easy cases with no complications, and they didn't want to risk their reputation on something they didn't understand.

At my first meeting with Dr. Fogelson, he wanted to see the painting that I brought, and he liked it and said he wouldn't mind having something like that in his house. I told him that could be arranged and we all laughed. So that is how it began, and I was relieved. I had found a surgeon who respected me as a patient. I was relieved that he was going to help me regain my ability to do my art work.

I was highly impressed with my care and recovery, and when I got the survey about my experience from the then Mayo CEO, Dr. John Noseworthy, just filling out a multiple choice questions was not enough, so I wrote him with a personal letter praising Dr. Fogelson and his nurse. She was also very kind and helpful and always called me back to answer my questions. I got a personal letter back from Dr. Noseworthy thanking me, and he said that Dr. Fogelson was one of their best neurosurgeons and that he valued working with him. I was so excited to get that letter, and I gave Dr. Fogelson a copy at my next appointment... as you can imagine that is how you really make a surgeon happy, and he was so humble and thankful to receive it.

As a patient who was anxious, having a kind doctor made a difference for me in facing my fears. Dr. Fogelson is a gifted surgeon, and I don't have any of that pain any more, and I believe that this type of healing atmosphere benefits both the doctor and the patient. I couldn't find that anywhere else. He also gave me a choice that the others usually do not in having a single level fusion without hardware because I agreed to stay in a neck brace for 3 months which lets me avoid any possible future hardware problems. I had seen that possibility in one of his papers too, and I asked him and he agreed. That really is putting the needs of the patient first.

When I delivered his portrait to him, I asked him why he wanted to be a neurosurgeon, and how told me he chose that because it was difficult and he wanted the challenge. I don't remember his exact words, but he likes solving difficult problems... unlike the others who didn't want my case. If I should need anything spine related in my future, I will go back to Dr. Fogelson at Mayo, and he told me he will be my doctor until such time as he retires. (That will be quite a while.)

Some other stories about Dr. Fogelson-
https://sharing.mayoclinic.org/2012/12/23/repaying-a-gift-scholarship-recipient-says-thanks-in-a-special-way/?utm_campaign=search
https://sharing.mayoclinic.org/2017/07/26/spinal-surgery-saves-teen-swimmers-mobility/?utm_campaign=search
http://www.startribune.com/in-second-term-minnesota-gov-markdayton-dealing-with-more-health-problems/361662931/
http://www.startribune.com/gov-mark-dayton-to-undergo-third-back-surgery/497015811/
https://www.mayoclinic.org/medical-professionals/trauma/news/geriatric-winter-falls-when-a-simple-bump-on-the-ice-can-be-serious/mac-20451017@
Mayo Clinic Minute
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-scoliosis-screening/

@bernese53 You'll be in good hands as there are many good surgeons there. I hope you'll have time to enjoy some of the wonderful art collection. I stayed at Aspen Suites for my surgery at Mayo, which was a nice little efficiency apartment. It is right across the street from St. Mary's.

Were you in the hospital following the surgery? I am from the Philadelphia area and will be traveling by plane to and from Rochester. How long did you stay in Rochester before going home? I know every case is different but I have read very little about people who have traveled for cervical spine surgery.

My husband had spine surgery in the lumbar portion of his back six years ago. His surgery was done by a neuro surgeon in Daytona Beach Florida. He was in the hospital for a week. He then had in home service by a nurse who came to the house about 3 times a week for 3 weeks. He was only allowed in the car with me driving to the grocery store once a week. (We own a vacation house in Florida) We could not return (fly home) to Alaska until 2 months after the surgery.

@bernese53 I wasn't required to stay overnight in the hospital after my cervical spine surgery ACDF C5/C6, but I stayed 1 night because after all that anesthesia and nausea, I didn't want to risk falling. The insurance coverage had to be figured to allow a one night stay. I just wanted to sleep and didn't want to walk across the street to the hotel. They recommended that I might want to stay at the hotel a day or 2 just in case there were any complications and I would have access to my surgical team. We ended up staying 4 nights (first night pre-surgery) because it snowed an we didn't want to drive home on slippery roads. I did have a lot of phlegm and difficulty breathing because of the anesthesia and I have asthma, and I did call and talk to the surgeon's assistant (one of the neurosurgery fellows) and he told me excess phlegm after anesthesia was normal. I had my nebulizer with me which worked. I did have some weird chest pains that started from a spasm in my neck and I used a microwaved bead heat wrap to help the spasms. I was happy just to sleep a couple days before the 5 hour drive back home. You'll be exhausted after this and if it's a frontal approach with a bad sore throat and swallowing correctly is difficult. I didn't have much of an appetite. I had to go slow and think about it. Bring someone with you. After surgery, your neck will hurt every time you get up or down. I would hold my head. I could have left the hospital in the afternoon on the same day. I didn't take pain medicine after I left the hospital because of the breathing issues, and my GI tract sure didn't like it at all. I found I could tolerate it without, and the pain meds didn't completely mask the pain and they nauseated me, so there was another med for nausea. It took me about a month for the GI to normalize again, so do what you need to keep things moving and it will still be difficult. I'll send you a message so you can see my pictures.

Thank you. My husband is coming with me but needs to leave about two days after surgery. I have some idea about what to expect; your post was very helpful.

@bernese53 I had to report at 6 AM at the check in desk at St. Mary's, so staying in walking distance and not having to worry about catching a bus to the hospital was easier. The rooms have DVD players so you can bring something to watch or borrow something from the hotel. You'll be nervous enough wihout having to worry about catching a shuttle bus. You might want to ask what your check in time is likely to be so you can plan. I think you'll be fine leaving 2 days after surgery. I could have done that. This recovery takes a while, so you'll need to just rest. The first 6 weeks are the hardest, and after that pain is less, but your body will put all it's energy into healing so you'll be tired. I did feel a lot better at 3 months, and I've had to rehab muscle that I lost from atrophy and I'm still working at that 2 years later, but this surgery gave me my life back. Good luck and please check back in and share how you are doing or if you have other questions.

Thank you Jennifer for your reply. You had almost exactly what I have been going through for a number of years. Did you call his specific number or did you request an apppintment through the Spine Center and ask for him? When they asked for specific records did you send them through the Spine Center or directly to him?

Thank you so very much

@badbonz What you need to do is contact Mayo and they will set up a temporary patient number for you that you will use to send in your imaging studies and a letter about your symptoms since they have to track and organize it in their system. You can request (like I did) that imaging studies be sent to Dr. Fogelson. They will also ask you questions about your diagnosis and symptoms when they set up the number. The most efficient way to do that is call his appointments phone number that I'll send to you in a private message and you'll talk to a nurse. (and please tell them how highly I recommended him). It doesn't cost anything to have them review your imaging and it can be returned to you. Then you'll be contacted by phone if they offer an appointment. I think that because all the other surgeons had misunderstood my case and how advanced the stenosis was, it helped me get treatment at Mayo. They do prioritize based on need and urgency. I was called a month after sending my imaging because of a cancellation, but they told me the wait was usually 3 months to get in at that time. You can find the insurance information on the website. Once you get accepted, they give you a permanent patient number and schedule appointments to evaluate all the issues you have that could relate to the problem. For me that was a neurologist evaluation (and he ordered tests- nerve conduction, blood work, MRI). I also had an evaluation for thoracic outlet syndrome and physical testing for that. All of that happened the day before and the morning of the evaluation with Dr. Fogelson, and the doctor who evaluated the TOS called Dr. Folgelson with his results while I was in the room at my appointment. That is how efficient they are and thorough. So when I met Dr. Fogelson and he reviewed my imaging with me that I had sent in, he offered surgery and we talked about my choices. I did have to wait for the results of one blood test that took a couple weeks, and results were good, so I asked to be scheduled for surgery. A few weeks later when they were setting up his surgery schedule, they scheduled me, and it was about 5 weeks after that first appointment. if you do see him, I hope you'll share your experience. My patient story is listed with his profile on the website. Thanks for asking.

Thank you so very much!