Recommendation for a neurologist to evaluate me for spinal stenosis.

@dgcosentino831 That must be disappointing to not be able to get an appointment. Some spine centers require imaging for review before they will schedule an appointment for a spine consultation. I know Mayo in Rochester does this because I am a Mayo spine surgery patient and sent in imaging with my request to be seen. That helps efficiency to schedule for patients who need spine care instead of seeing patients for back pain that is not related to a structural spine problem. If you have never had imaging done for your spine, that may be a reason for refusal or they may be very backlogged with cases. Another option may be Cleveland Clinic and they are similar to Mayo. I didn't know they had a Florida campus until I searched online.

This is the website for Cleveland Clinic in Florida.
https://my.clevelandclinic.org/florida

If you are willing to travel, you could try either Vanderbuilt in Tennessee or the Mayo campus in Rochester, MN as they are the main campus and have more surgeons there, but you would likely need imaging that shows a spine issue for an appointment. There is also a process where your doctor can refer you to Mayo to try to gain an appointment. I had referred myself, but I had imaging showing spinal cord compression and had seen 5 surgeons locally who didn't want to operate which was difficult for me because my symptoms kept progressing, and the surgeons misunderstood why I had crazy pain all over so they passed on me. That probably helped me get into Mayo where they understood this pain which is called funicular pain. There is a long wait if you are accepted for an appointment because there are many patients in need of help.

Are you having pain or functional disability symptoms with movement and mobility? Have some of your doctors suggested stenosis as a possibility? Have you had any injuries to your back or neck in a traffic accident such as a whiplash? Do you have any other conditions that can mimic a spine problem? Do your symptoms change with changing positions such as sitting, standing, bending, laying down, etc?

Another good resource is a physical therapist. They may be able to examine you and tell you if anything they see suggests a possible spine issue that should be seen by a doctor. They treat injuries, rehab surgical patients and assess for weakness in muscles as well as movement and postural complications. Sometimes they improve a person's condition, and prevent surgeries. Many times, failure of PT to improve a patient is a precursor to surgery.

Jennifer, thank you for taking the time to respond. I was a self referral when I contacted Mayo in Jacksonville. The scheduler said it would not make any difference if I had been referred by my PCP.
I should mention I am a retired radiologist . My last MRI’s were in 2018. My diagnosis of spinal stenosis is not the issue. The issue for me is to be examined by a neurologist to determine if my symptoms are caused by my my spinal stenosis, and secondly to evaluate for any change compared to my 2018 images. The Mayo representative did not offer to have me send in my exams or reports. I was disappointed. My wife had a good work up in Rochester a few years back, and I had expected a similar experience.
I was not aware Cleveland Clinic had a Fl location. I will look into that.
Again, thanks for your input.

@dgcosentino831 I understand now. As a radiologist, you would know how to read your images, and that an MRI 4 years old may not show an accurate evaluation at this time. I'm writing this response to you, but also for the community, so I may be explaining things that you already know where other members may benefit too. My background is that I considered going into medicine and got a biology degree, then worked in research for a neuro-anatomist at a university instead. I left that and went to art school, but had studied anatomy as part of my biology degree and art school, so I can understand a lot of medical literature, and I learned a lot in the 2 years I spent looking for a surgeon to help me. I also have been working with an expert physical therapist who has taught me a lot while under her care.

Where do you have stenosis? For me, it was spinal cord compression because of a collapsed C5/C6 disc with a disc/osteophyte complex pressing into the cord in front. I was charting my pain and nerve symptoms on a body diagram dermatome map over about a year. On MRIs 9 months apart, the osteophytes doubled in area by spreading to the other side of the ruptured disc material. I didn't have foraminal stenosis, only in the central canal. I had pain all over my body that changed location with different head and neck positions, and that confused a lot of surgeons and symptoms in every dermatome. It is called funicular pain, and it was because I was reading medical literature, I ran across that term, looked it up, and I found literature with medical cases like mine that described it as a "rare" presentation of cervical stenosis. I chased surgeons for 2 years and none would help until I got to Mayo after I found that medical literature because of reading a Mayo surgeon's literature.

I'm sure this is very frustrating for you when you know what is going on and understand why, but can't get an appointment. Just prior to my surgery, if I flexed my neck forward and down over the bone spurs, I sent an electric shock down my entire body. If I side bent my head, I did get a burning pain down my arm because the foramen was a smaller space due to the collapsed disc (50% height) and didn't have enough space for that move without hitting the nerve root. The difference between radicular pain and cord compression pain is that radicular pain from foraminal stenosis is very predictable as to what nerve is affected and what body part according to a dermatome map. Cord compression can affect anything below that level depending on how the cord is positioned as it floats and moves within the canal and is subject to change.

My very first sign of cervical canal stenosis was when I turned my head to the left, I got a pain in my ankle like something was biting me. If I turned my head back straight again, it went away. It was reproducible. As time went on and there was more compression and pressure, the pains just moved all over my body and I could not totally eliminate them, but changing body position did change where they were and reduced some of it. I also had 2 mm of retrolisthesis at the bad disc, and when spasms moved my vertebrae out of alignment, it caused gait disturbances and I walked with a limp with my foot kind of slapping the floor with each step. That was something that I remembered happened right after a whiplash injury about 20 years earlier that had led me to the same symptoms with an aging spine. I was working with a physical therapist who would realign everything and correct my gait until the next spasm caused it to happen again. I also had intermittent difficulty fully emptying my bladder because of the retrolisthesis, and that was also corrected by better spine alignment. (Cervical cord compression can cause incontinence of bowel and bladder function.) Essentially, when a vertebrae slips in a direction out of alignment because the disc is not strong enough to hold it in place, the spinal canal gets smaller causing increased symptoms. It is kind of like a string of beads, and if you pull one sideways, it puts pressure on the string. I charted these intermittent problems and knew how changing my body position was changing them. This helps figure out what is happening and something a neurologist would probably want to know.

Can you share what symptoms you are experiencing that you think may be spine related? Have you considered making a drawing of your symptoms to chart how the symptoms have changed over time? I'll help any way that I can from what I have learned through my experience.

Jennifer

Hi Jennifer, this is the cervical MRI report

Cervical Spine…conclusion of report….

Disc bulging with osteophytes complex causes moderate compression of
ventral thecal sac and mild ventral cord flattening at C3-C4, C4-05,
end C5-C6. The most affected level is C5-C6, with the neural canal
measures 8.1 mm in maximum AP dimension.
2. Osteophytes cause bilateral foraminal encroachment at C4-05 and
C5-C6. Osteophytes cause mild left-sided foraminal encroachment at
C6-C7 and C3-C4.

The good news is there were no signal changes in the cord in 2018 to indicate myelomalacia.

Just to address symptoms :

Numbness both upper extremities is related to neck positioning
Weakness in both upper extremities
Increasing loss of dexterity in hands
Mild tremor in hands
Occasional loss of balance
Nocturnal leg muscle cramps

Doug Cosentino

@dgcosentino831

Doug, thank you for your report. My imaging of my C spine did not show myelomalacia, and my Mayo surgeon, Jeremy Fogelson, told me that myelopathy does not always show up on an MRI, but can be present. My MRI showed no damage to the spinal cord, but I was getting muscle atrophy on the back of my shoulders and in the triceps. The short answer is that every symptom you listed can be associated with cervical spine issues. I actually had vertigo a few times because muscle spasms were causing independent rotating or tilting of my upper vertebrae and when that happened to C1 & C2 it caused extreme dizziness that could come on suddenly. Rotation of the C vertebrae stretches the vertebral arteries affecting flood flow to the brain much like what happens with Bow Hunter's syndrome. It also caused occipital headaches usually on one side, jaw misalignment, ear pain or a choking sensation.

Are your symptoms a new development that didn't occur in 2018? Generally speaking, surgery should be done before permanent damage happens, and not all patients feel pain from cervical cord compression and are surprised to find out they are at risk of paralysis if they were in an accident in their current condition. When myelomalacia shows up on an MRI as a white mottled appearance inside the spinal cord, it represents nerve axons that have died and dissolved in the spinal fluid. I said that here because many other patients don't understand what that means.

I agree that you need to see a specialist and there may be a long wait. What I have found is that many spine surgeons want you to see the neurologist that they prefer to work with so it makes sense to seek a consult with a spine surgeon. Dr. Fogelson sent me to neurologist, Dr. Bartleson, in the spine center at Rochester for testing and a full exam. The neurologist didn't say that I needed surgery based on his findings, but the neurosurgeon did recommend surgery. Your report and symptoms do match up to what a doctor might expect.

Here are a couple links, a Mayo podcast that defines stenosis measurements and treatment options. It is for patients, but covers a lot of useful information.

and a video presentation about surgery for cervical stenosis from a spine surgery conference

My surgery was a C5/C6 fusion with donor bone spacer and no hardware. I stayed in a neck brace for about 3 months until it fused. The surgeon offered this because it was a single level, and may not have done that if it was more than one. I had concerns about immune responses to metals because of reactions to pierced earrings in my past and having no hardware let me avoid any possible complications with that. If you have surgery, there would likely be hardware. It is a long recovery and the first 6 weeks were the most painful, but that is different for everyone. This is my patient story:
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Also you need a better surgeon because of the C3 involvement. Many spine surgeons do not want to operate on levels that close to the skull, and because the Phrenic nerve that partially innervates the lungs for breathing emerges near there from the spinal cord. Fusions of these levels will limit movement. My C5/C6 fusion does not limit my head turning. That is mostly done by C1 & C2 with some help from C3 & C4. I also have thoracic outlet syndrome that causes compression on nerve and vessels between the collar bone and rib cage and near points where it passes through the heads of the scalene muscles and under pec minor near the armpit.

I will send you some information by private message. If you have more questions, please ask. In the links I have sent, doctors say that loss of balance is considered a serious issue when it comes from spinal stenosis, and with aging that can get worse. My elderly mom has no balance and spends her days in a wheelchair. The stenosis measurement of 8.1 mm is significant. That is discussed in the Mayo podcast video link. I hope this has been helpful.

Take care,
Jennifer

Dr. Berkman Vanderbilt Spine Center, Not A bad drive.
,

Thanks, I will look into it

@jenniferhunter
Very nice patient story, thanks for sharing. It is very good to read this.

@dgcosentino831
Doug,
I had another thought of what may help you right now while you are waiting for an exam. I was working with a physical therapist when my spine problem started becoming evident, and I continued this therapy and also did myofascial release. She was trained in the John Barnes methods, and did a lot of this on my neck because of thoracic outlet syndrome. She was also using a Dolphin Neurostim unit on the cervical nerve roots. There is a setting that interrupts the neuro transmitter pain signals, and I found that it reduced my pain for about a week at a time. That was during the time when I was having trouble finding a surgeon to help me, and my symptoms were getting worse.

Myofascial release helped a lot to loosen my neck, so it was easier for the surgeon to retract during surgery. During my consult, his comment about my neck skin was "loosey goosey" when I asked what I could do to make his job easier. This set me up for a successful surgical procedure, and after surgery and healing, MFR helped loosen the scar tissue which reduces pain. If you need to find a PT trained in these methods, there is a search at http://mfrtherapists.com/

Here is our MFR discussion: (the first pages have lots of links to information)

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Dolphin Neuro Stim https://www.dolphinmps.com/

This helped me buy some time before I could have decompression surgery. It doesn't fix anything, but may help you feel better at least temporarily.

Jennifer

Hi Jennifer
Wow, you are a wealth of knowledge!!
My local PCP was not helpful with a specific referral. I reached out to my DIL who is an anesthesiologist at Ochsner in New Orleans. She suggested Dr Paul Celestre who is an ortho spine surgeon. I set up an appt with a few mouse clicks (unlike the numerous hoops Mayo puts one through), although to be fair I was already in their system. My appt is on February 3rd. I would have preferred a neurologist workup, but ultimately the same studies will be performed.
Again, thanks for your insight.
Doug