C5-C6 issue affecting my shoulder?

@ken82 it was never mentioned. I am guessing it's because of what he saw in the MRI and because I sometimes get tingles in both hands/fingers (mostly in the left though). Without researching it, I am not sure if I would have symptoms in both hands if it were cubital tunnel syndrome.

I was a firefighter for 12 years, had a lumbar fusion in 2013. Lower back is doing great other than the normal aching and pain. Totally unrelated I think.. Since then I've had tingling, numbness and severe pain in my neck and shoulders/shoulder blades with headaches from time to time. When I went to see a neurosurgeon here he did MRI and a myelogram of my thoracic and lumbar spine. Showed lumbar a has herniation's above and below my fusion site. Also revealed that I have a syrinx extending from T-2 to T-11. I was told with the syrinx to just monitor it with MRI's every 6 months etc. Nothing got better and had lost control of my bowels 3-4 times last year, but nothing since then. Since then the neck pain has continued to progressively get worse and I know have headaches everyday pretty much some tolerable, some not tolerable. I have seen a total of 3 neurosurgeons and 3 neurologist thus far. I've had several MRI's last MRI of Cervical stated that I had 4-5 herniated discs in my cervical spine the worst at C-5 C-6 and C-6 C-7. The neurologist I saw recommended Physical therapy and shots, I've been in PT for 8 months and have had epidural steroid injections, trigger point injections and occipital nerve block. No relief with any of them in fact over time my pain has gotten worse. My pain is affecting my personal life as well as my professional life. I've been dealing with all this since Oct of 18, I know that is not as long as some of you folks but I can't deal with it anymore. It was advised to me to me to go to Mayo clinic I just really don't know much about them but doing some research on here and elsewhere, they sound great. I welcome any advice or anything at this point!!

@fdchik22 Hello and welcome to Connect. I am a Mayo spine surgery patient. Mayo is an excellent place for another opinion. I came to Mayo after 5 different spine surgeons wouldn't help me and they didn't understand how my symptoms related to my cervical stenosis and I went 2 years before I could find a surgeon who would help me. I found medical literature with a case like mine, and contacted a surgeon at Mayo with the literature and he reviewed my imaging. I had spine surgery at Mayo Rochester and I can't say enough about the excellence in the quality of my care, and the great results I had from surgery. I was loosing the ability to hold my arms up and control them because of spinal cord compression, and regained my abilities after surgery. It may be a wait to get in, so you will need to call and set up a temporary patient number and arrange to send in imaging and records for review as soon as you can. It sounds like you are ready for surgery and that conservative treatment has not helped much. You can request that your records be reviewed by a particular surgeon, and I did that. I researched a lot about spine surgery before I came to Mayo, and I could tell that I was getting good answers to my questions at my evaluation. I would highly recommend my surgeon, Jeremy Fogelson. Here are some links about him and my patient story. Let me know if you have other questions and if I can help.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
https://sharing.mayoclinic.org/2012/12/23/repaying-a-gift-scholarship-recipient-says-thanks-in-a-special-way/
https://sharing.mayoclinic.org/2017/07/26/spinal-surgery-saves-teen-swimmers-mobility/
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/neurology-neurosurgery/news/specialized-expertise-for-spinal-deformity-surgery/mac-20469055

First off, thank you so much for the quick reply and welcome I appreciate that. Yeah my shoulders they're ok if lifting close to my body but if I have any weight or I try to lift something away from my body they're really weak as well and I'm losing grip strength etc. My symptoms have just gotten worse and worse over time. As I stated earlier 8 months of physical therapy shots all that good stuff and doctors here just seemed to give me the run around. I'm at a point now where it's severely affecting my quality of life. It sucks!! It frustrates me and my family. I just want help!! I read some of the articles you posted unfortunately I don't fear surgery because I was a medic as well as a firefighter for so long but I'm scared anything that has to with my spine. So you think mayo and this doctor can help??

@fdchik22 Yes, absolutely. Dr. Fogelson is one of Mayo's best according to the former CEO who wrote back to me about him after he got my letter. He is excellent. He did his neurosurgrey training at Mayo, and he teaches there too, and everything in his background shows his excellence in academics and that he has been recognized in his field. His surgery was so good that he didn't need to place a drain in my neck, and I woke up with all the pain gone except for what is caused by the surgical path. I also had surgery without hardware for one level and I have only a bone graft and a lot of surgeons probably wouldn't allow that, so he had to trust me to follow directions. The incision was closed in layers with help from doctors in the neuro program and was nice and neat, nothing was glued together there like I see on so many other patient online posts. I stayed in a neck brace until fused. He gave me my life back. I had lost about half my shoulder and arm muscle to atrophy before surgery, and most has come back. I'm trying not to need a spine surgeon again, but if I do, it will only be Dr. Fogelson at Mayo. I've seen 5 spine surgeons at other places and I wouldn't trust most of them. Dr. Fogelson told me he would be my doctor as long as I need him. He is also very personable, and a down to earth nice guy. It doesn't cost anything to ask him to review your imaging, and if he offers you an appointment, you can decide. My experience of everyone at Mayo exceeded my expectations, and I didn't know medicine could be like that where doctors consult each other in an interdisciplinary team approach. I also have thoracic outlet syndrome which muddies the waters a bit causing symptoms that can overlap with spine caused symptoms, and that was evaluated by another doctor and lab there, and that doctor called Dr. Fogelson to discuss it while I was at my neurosurgery consult. I say go for it. If I had to do this over, I would go to Mayo first, and skip the 5 surgeons who didn't want to help me.

Wow that sounds like a dream situation with the doctors I mean it sucks that we're both in a situation where we need them but good there is actually compassion in doctors still. I'm very sceptical these days because of how many different neurologists and neurosurgeons I've seen that have just pushed what I've said to the side. For instance the neurosurgeon I've been to recently has had my MRI results for over a week with no communication from his office other than I'm on a list for him to review. I understand everybody's busy but I've expressed several times that I can't live like this and nothing changes. VERY FRUSTRATING!! How long does it take to know if your approved to be seen etc? How's the process work exactly??

@fdchik22 Everyone at Mayo has a lot of compassion for patients. It's actually written in their job listings and it is true that they attract good people. One thing I ran into before I came to Mayo was doctors who were dismissive and nurses of surgeons who were hostile toward me and all of that was because no one was connecting the real symptoms I had with my spine issues. One nurse in particular was refusing to schedule appointments for me because she was protecting the doctor's time, and she didn't regard my case as serious. As I reported things getting worse, and getting vertigo intermittently, the surgeon made a decision not to offer surgery because he thought it would be a lot to put me through and wouldn't help my bigger issues. Apparently he didn't know about "funicular pain" caused by spinal cord compression that sends crazy pain all over the body, and it isn't a nice presentation of pain according to a dermatome map. Compression at nerve roots will follow that, but spinal cord compression is a different game. If they don't understand why you have symptoms, they don't have the confidence to help, and you wouldn't want a doctor like that. They are rated in the number of successful procedures they have, and why risk your reputation on something you don't understand? It's a lot easier to choose patients with straightforward cases that you know will be successful. Mayo is known for taking more difficult cases, and it may have helped me in my acceptance because 5 surgeons turned me down over 2 years time and would not operate after they learned more about my symptoms. My MRI was obvious spinal cord compression, but they didn't want the other possible complications.

When I called Mayo in 2016, they said it was probably a 3 month wait to get an appointment after a review of my records and imaging. I had requested that Dr. Fogelson review my case and I chose him because I knew he would understand funicular pain because I looked that up after reading medical literature he co authored. I knew I had found a surgeon who would understand my symptoms, and his areas of interest was a good match, and he can do artificial discs or fusions for cervical issues. A lot of times, you don't know what a surgeon prefers ahead of time until you see them, and a lot only did fusion. It all depends on what they have been trained to do and what manufacturers they work with. When I inquired about him, they told me that patients really like him, and I was a scared patient, so that sounded good. I actually was called for an appointment a month after they received my imaging because he had a cancellation, and I got a short notice of a week to get there, and I jumped at it. They scheduled 2 days of testing and appointments, and I met Dr. Fogelson the 2nd day. I did have to return a week later for an MRI to cover the entire spine, because I had an art show opening I wanted to attend on the weekend. I also had a followup with the neurologist that same day and he reviewed the new MRI with me, and also talked about a counseling program they have for patients to deal with pain. Dr. Fogelson offered surgery to me at my first appointment on day 2, and he couldn't promise it would solve the funicular pain, but he would help me anyway and I had surgery about 5 weeks later. I could have been scheduled in 2 weeks because mine was a smaller surgery that was easier to fit in, but I wasn't ready at home. I knew that this surgery would solve my pain because I tracked my symptoms as they developed and this pain was variable and reproducible because of my neck position and how I turned my head at least in the beginning. By the time I had surgery, it had advanced enough I could bend my neck and send an electric shock down my body. I was told he would do 2 smaller surgeries a day, or one complex bigger one. My surgery was 2 hours. In comparison, one of the prior surgeons I saw before Mayo did about 10 cervical surgeries a day in 30 minute procedures at their privately owned surgical center. I wanted a doctor who took more time and precautions like neuro-monitoring.

Personally, I really liked Dr. Fogelson, and he liked my artwork. I had been used to surgeons turning me down, and I brought a painting with me to show him what I needed to be able to do because I had lost the ability to control my arms and the strength to hold them up. When he said he wouldn't mind having something like this in his house, I told him it could be arranged and we all laughed and that's how it began. He is a guy who loves his job and that was important to me too. As a patient, I arrived with a sense of hope and a list of intelligent questions that I compiled because I had already learned a lot about spine surgery. That understanding let us converse in detail about my case and how his surgery could help. I asked about having a fusion without hardware and I thought it was an option because I had read that in one of his papers that a single level fusion could be done that way, and I promised him I would stay in a neck brace until it fused which he said would be about 3 months. A lot of surgeons who saw me before Mayo had very specific ways they worked and specific hardware they installed with plates, cages, etc made of PEEK or titanium. At Mayo, I felt I had a choice in what I asked my surgeon to do. It is their mantra that the needs of the patient come first, and my request was granted. I knew that some patients had allergic reactions to these materials because I had read research about this, and since I had issues with metals in earrings, I wanted to avoid foreign materials placed on my spine. Dr. Fogelson said it heals best with just a bone spacer. One of the prior surgeons I saw refused to test me for possible reactions to implant materials and I paid out of pocket and did that anyway with my PCP. That isn't foolproof because you can develop a problem later down the road, and I didn't want any re-operation due to possible hardware failure or incompatibilities. Anything screwed into the spine has the potential to fail if a screw breaks or backs out, or if the bone quality and placement is not sufficient. If that is hardware in the lumbar spine, it's even more important because of all the pressure of weight bearing, and the screw placement and angles are very important, or the screws can pull out in a hardware failure.

When you come to Mayo, start fresh, and leave all your frustrations from prior specialists behind. It really is different and refreshing and they want to help. I didn't know medicine could be like that. You do have to come with a desire to be well and to let your specialist work out the issues and provide the answers. Mayo will redo tests like EMG/ nerve conduction because they do it a little differently, and Dr. Fogelson requested this before my consultation, and also an evaluation of my thoracic outlet syndrome which has overlapping symptoms with spine issues. No surgeon wants a patient to come in and tell them how to do their job, but it is OK to ask why one procedure is preferred over another and what other options there are, and what are the predicted outcome of success that relates to your case with any other health problems that you have. They should be willing to explain this while showing the problem in the imaging. Dr. Fogelson did that for me, but some of the prior surgeons I saw only wanted to look at an MRI by themselves and not explain it to me. I think it will be different for you if you come to Mayo, as long as you come with respect and wanting to heal. It really can be wonderful and compassionate. That is what I found after years of my frustration. I have a lot of patience and I researched and advocated for myself. I wish I had come to Mayo first, and having a really compassionate surgeon helps a lot. I did my part too to be friendly and engaged and interested in my care. Mayo is my happy place now, and I really enjoyed coming back at my one year followup and then another year later to deliver the portrait I created for Dr. Fogelson. I had fun enjoying the piano music in the atrium of the Gonda building and dancing with other patients, and if I lived there, I would want to work for Mayo. It means a lot to me for what I received as a patient, and that is the reason I'm here on Connect, because I want to help other patients who are on a similar journey. To me this is inspiring as to what is possible in health and healing and my personal journey overcoming an injury and returning to my ability to work again as an artist.

If you look at the first page of this discussion, there are photos of Dr. Fogelson at my one year follow up when he saw his portrait the first time. The frame was damaged, so I had to return later after getting a new custom frame made. It meant a lot for me to do this for him and to prove to myself, that after surgery and rehab I could paint again at a level I expected of myself.
https://connect.mayoclinic.org/discussion/art-for-healing/

So sounds like he is an amazing doctor who knows his stuff very well. I will have an open mind about my care because I'm just ready to get some genuine help. I have had 2 EMG's already as well in both arms and they tried my neck area but it was extremely painful so they couldn't go forward with the test. So adding everything up multiple MRI's, EMG's, physical therapy, epidural and other injections with no relief. My most recent MRI on cervical showed this last time on the report.

C2-C3: Minimal disc desiccation. No spinal canal or foraminal stenosis.
C3-C4: Mild disc desiccation. Minimal posterior midline disc osteophyte complex. No resulting spinal canal or foraminal stenosis on either side.
C4-C5: Disc desiccation with very minimal disc bulge. Mild bilateral uncovertebral hypertrophy. No spinal canal or foraminal stenosis on either side.
C5-C6: Disc desiccation with diffuse disc bulge. Degenerative changes cause very mild spinal canal stenosis and left foraminal stenosis. There is no right foraminal stenosis.
C6-C7: Disc desiccation with posterior disc broad-based protrusion effacing the anterior thecal sac. There is mild spinal canal stenosis resulting. Mild left and mild right foraminal stenosis is seen as well.
C7-T1: No disc pathology. No spinal canal or foraminal stenosis on either side

The one previous showed this:
C2-C3: Normal
C3-C4: Moderate central disc herniation which indents the thecal sac and touches the anterior surface of the spinal cord. No cord deformity. No foraminal narrowing.
C-4-C-5: Small central T2 abnormality could represent a annular fissure or small herniation. No spinal or foraminal stenosis.
C5-C-6: Moderate disc herniation with some mild flattening of the anterior thecal sac. Mild spinal stenosis. No foraminal stenosis.
C-6-7: Mixed signal abnormality in the disc is broad-based. Probable large bulge with possible superimposed annular fissure or poorly visualized herniation. Mild flattening of the anterior thecal sac. No foraminal stenosis.
C-7-T-1 Normal

Do you know what any of this means? That's just my cervical there is some in my thoracic as well as lumbar. I'm at my wits end and just don't know what to do, I'm trying to wait and let this neurosurgeon respond but I don't seem to be a priority for him or his office. Sorry for venting just nice to chat with someone who understand what I'm dealing with. I'm just ready for some answers because the research I find and what doctors tell me is very contradicting, even different doctors have different answers for what is causing all my symptoms and issues. Symptoms are severe pain and pressure between shoulder blades as well as numbness and tingling. Severe shoulder and neck pain at times it's difficult to even hold my head up. More and more difficulty with my grip strength and lifting things away from my body especially on the right shoulder. Severe to mild headaches 5 out of 7 days a week I mean this is getting way out of hand and I can't get the doctor to even read my freaking MRI that to me is unacceptable. So according to what you said I should plan on being up there at least a couple days? I have to fly or drive so just curious, I wish I was closer.

@fdchik22 This should help you understand your report. When visiting Mayo, they recommend in general to allow a week for everything. You will be given a printed schedule of appointments, but you can try to get them done earlier if there are openings. You just go ahead of time, and check in, and they will call you if they can take you early. That happens frequently as patient schedules can change for various reasons. There are lots of hotels and most have free shuttles. If you drive there, get to the parking ramp (deck) early as it fills up mid day. It was a 5 hour drive for me. Here is a discussion on visiting Mayo. https://connect.mayoclinic.org/discussion/suggestions-for-a-stay-at-mayo-rochester/ and from the Mayo website, https://www.mayoclinic.org/patient-visitor-guide/minnesota

Surgeons tend to look at the images on the MRI instead of paying attention to what the report from the radiologist says. I wrote definitions of the terminology and gave you a translated version in common language. I can't interpret what this means in your case as only a medical specialist can do that, but you can get the general idea and compare that to where you have symptoms. Sometimes you get contradicting recommendations from different surgeons. I know that shoulder blade pain comes from C5 C6 area. That is what a surgeon told me. The shoulder blade is connected to the spine by muscles and also to the shoulders. I also had bad headaches generated by spine issues called cervicogenic headaches, and aches on the back of my head caused by neck muscle spasms. If you want to go to Mayo, you will need to set up an account and send in copies of your imaging on CDs, and then wait for their response. Getting other opinions is normal for surgery and usually recommended. Once you get in Mayo, they get everything done right away, and you don't waste weeks waiting for appointments, and waiting again for the next test, etc. Often they schedule same day appointments when a specialist wants further testing. I know this can be confusing and frustrating, but you will need to advocate for yourself.

There are 7 numbered cervical vertebrae and the discs are named for being between the vertebrae and there are joints that allow the vertebrae to slide on twisting on bending. The discs act as cushions and the joints allow the movement.

Nerve roots emerge above their numbered vertebrae.

Here is an excerpt from this link that explains where the nerve roots send their signals.
https://www.healthline.com/health/dermatome#dermatomes-chart
Cervical spinal nerves
C2: lower jaw, back of the head
C3: upper neck, back of the head
C4: lower neck, upper shoulders
C5: area of the collarbones, upper shoulders
C6: shoulders, outside of arm, thumb
C7: upper back, back of arm, pointer and middle finger
C8: upper back, inside of arm, ring and little finger

From your MRI report:

“C3-C4: Mild disc desiccation. Minimal posterior midline disc osteophyte complex “
This is a small herniated disc with some bone spurs centered at the midline, but not causing stenosis C 4 dermatome

“C4-C5: Disc desiccation with very minimal disc bulge. Mild bilateral uncovertebral hypertrophy. “
Increase in size of uncovertebral joints. C5 dermatome

“C5-C6: Disc desiccation with diffuse disc bulge. Degenerative changes cause very mild spinal canal stenosis and left foraminal stenosis.”
Degenerated disc bulge causing compression in the central canal and left foramen nerve root. C6 dermatome

“C6-C7: Disc desiccation with posterior disc broad-based protrusion effacing the anterior thecal sac. There is mild spinal canal stenosis resulting. Mild left and mild right foraminal stenosis is seen as well.”
Posterior mild disc herniation compressing the membrane around the spinal cord and spinal cord and the nerve roots on both sides.” C 7 dermatome

This link has a page with several videos that explain how to read MRIs and there are also some for reading MRIs with nerve root or spinal cord compression.
https://neckandback.com/videos/understanding-an-mri-of-the-normal-cervical-spine/
Terms in your report:

Dessication is drying out of the disc.
Foramen are the spaces between every vertebrae where the nerve roots exit the spinal cord.
Central Spinal canal is the tube where the spinal cord floats in fluid where is passes through each vertebrae in the spine.
Stenosis is narrowing where a nerve root (foraminal) or spinal cord (central canal) is getting compressed.
Uncovertebral are joints.
Thecal sac is a membrane around the spinal cord.
Anterior is toward the front.
Posterior is toward the back.
T2 is a contast lighted view of the MRI.
Signal abnormality of a disc is how the MRI passes through it unevenly because of degeneration, etc.
Annulus is the tough fibrous outer covering of a disk, annular fissure is a tear in the annulus.
Nucleus is the jelly like center of the disk that squishes out through a tear in the annulus.
Disc osteophyte complex is when the herniation of the disc causes bone spurs to grow next to it because of the inflammation from the ruptured nucleus of the disc.

First of all thank you so much for your advice, being a sounding board and being a great listener. Something that's funny is I've looked at both those websites before lol. I spent so many years as a medic so I'm very curious about anything medically related. When I don't understand things I must do research. But you explained some of it by "breaking it down barney style" as we say in the fire dept, that's much appreciated. I of course welcome many opinions on my body before having surgery. The visit up there would be no problem because I have a ton of family up there my folks are from there. I'll probably start the process soon since you said it takes a while to get in. Is it done online or just call? How does one go about creating an account??