Connect
← Return to Need some insight. Cannot see neurologist for 7 months.
Discussion
Need some insight. Cannot see neurologist for 7 months.
Brain & Nervous System | Last Active: May 16, 2023 | Replies (20)Comment receiving replies
@slyfryryeguy Hello and welcome to Connect. I think I can help you understand what may be going on as a possibility. I'm not a doctor, but I am a spine surgery patient and I had a similar experience with symptoms to what you are describing. First, I have to say that I am shocked that your doctor told you to try taking magnesium when you are describing neurological symptoms. Did you tell this doctor about the whiplash and concussions? That is a key piece of evidence for diagnosis.
You may have done what I did after a whiplash. I told myself I was going to be OK. I had an HMO insurance plan at the time and all my primary care doctor did was write down if my neck stiffness and pain was getting better and did no further testing. It was a long time ago. You had 2 events that jarred your spine. You are reporting drop foot, difficulty walking, weakness and fatigue in your legs. Twitching muscles. I remember thinking it could be ALS, and didn't even consider that a whiplash could have injured me and caused this. I remember that my leg pain changed sides, and when I took a step, my foot slapped the floor which I could not prevent. I reported that to my doctor, but that didn't raise eyebrows, but it should have.
Laying down and having your arms and legs go numb is another huge clue to what may be wrong if you understand how the spinal cord shifts inside the spinal canal with changing body positions and the effect of gravity and what happens during a whiplash. It's like cracking a whip and snapping the spine in changing directions quickly and it stresses the discs that are holding the bones of the spine together. If there is enough damage, the discs can weaken, crack, bulge or herniate and start spilling the jelly like stuff inside. If that jelly has spilled out, it causes inflammation and initiates bone growth next to it to try to stabilize the spine. Imaging the spine in different positions of standing vs laying down or seated can show very different pictures of vertebrae that are slipping past each other instead of maintaining a neatly stacked position. There could be multiple places of laxity in the spine, a whiplash affects the neck, but there may have been damage to the spine in the lower back too. Typically with leg related symptoms, that is where doctors will look for trouble. If there is enough sliding of vertebrae, it can contact or put pressure on the spinal cord, and that is pot luck on what will be affected. The spinal cord is a big bundle of all the nerves between the brain and the body that control everything. Nerves leave at levels all along the spine, but in the neck, everything must pass through there for the entire body. Remember that the spinal cord is supposed to move inside the fluid filled spinal canal, so it may contact different places at different times and change where your symptoms are.
Here is where understanding spine injuries gets tricky and 5 surgeons missed my diagnosis in that they could not relate my symptoms to my imaging of my neck. I had pain all over my body, twitching and it changed positions, uneven gait when walking, difficulty emptying my bladder, weakness in arms and legs, loss of coordination of my arms, headaches that were usually worse on one side. Pain in the bottom of my feet that made it difficult to press the accelerator and drive which would start tingling and pain in my foot. If a nerve is compressed where it exits the spinal cord between the vertebrae bones, it is very predictable where pain and nerve symptoms will be felt. If spinal cord compression is present, it can cause pain anywhere in the body and pain that can change locations. That is what confused every spine surgeon before I came to Mayo. I found medical literature that described a case like mine because I was reading literature authored by a Mayo neurosurgeon, and I looked up a term I didn't understand which was "funicular pain". That is pain all over the body caused by spinal cord compression in the neck. I wasted 2 years seeing surgeons who wouldn't help me because they didn't understand this, and there was not a lot of literature about this "rare presentation of symptoms" 6 years ago when I had my surgery.
(continued in next post)
Replies to "@slyfryryeguy Hello and welcome to Connect. I think I can help you understand what may be..."
Connect
@slyfryryeguy
If I may be direct here, I think that waiting 7 months to see a neurologist is a waste of time. Then you'll wait again for testing or imaging and just drag out the diagnosis. It is better to see a spine specialist first. The spine surgeon probably has a preferred neurologist that they like to work with anyway. I saw 5 different surgeons over a 2 year time and got nowhere, only to be dismissed because they didn't understand my case and there was neurology testing too. When I got to Mayo, they repeated the neurology testing again because the need to confirm the results.
Find the very best spine surgeon that you can. If you can go to Mayo first, you will probably save a lot of time and find a surgeon who can figure all this out. The wait to get into Mayo (if accepted) is probably around 3 months, but they would have to answer that. Urgent cases get priority. I wish I had come to Mayo first, but I didn't know how difficult this was to figure out. I was also running up against surgeons who didn't want to risk their reputation on something that they thought was difficult with unpredictable results. No one wants that on their record. It was much easier to say that they thought I could have an inflammatory disease like MS and I was told that by a top level surgeon who said that a cervical fusion may not help most of my symptoms and he didn't want to put me through it... how "kind' of him to say that, but he was wrong. This surgeon did an epidural spinal injection as a diagnostic test and that temporarily took away ALL my pain symptoms, and then they gradually came back. He didn't understand the results, so he ignored the test. Apparently it was supposed to only help my arm pain, and leave the rest as evidence there was an additional problem and weed me out as patient. This is a possible predictor that funicular pain is present if it resolves all the pain temporarily. There is no diagnostic test to confirm it, except that decompression spine surgery fixes the problem, and in my case, that was true and surgery fixed everything.
Surgeons can be very selective about what cases they will accept for many reasons. Some reasons are honest opinions of not wanting to harm a patent, and some are selfish reasons that are more about their own fears of failure. I don't wish to bash doctors, and the best ones do put the patients needs first. That is why you want a surgeon who enjoys the challenge of a difficult case. My surgeon at Mayo wants the challenging cases. You will have to advocate for yourself and you need one who understands funicular pain. I found myself in the position of finding my correct diagnosis myself and then none of my doctors at that medical center would help me inform the surgeon who examined me. No one would point out his mistake and I was left without help. That is when I applied to Mayo, and I sent in a copy of the medical literature that I found asking if my case was similar to this paper and I sent it with a letter explaining that I found it because of his paper where I found the term "funicular pain". That gives control to the doctor who can evaluate it and decide, and my concern was heard.
After my whiplash, the drop foot did resolve in a couple months, but returned again later when I had bone spurs and a ruptured disc pressing into my spinal cord. I was working with a physical therapist at the time and she would realign my spine which improved my symptoms and the drop foot until muscle spasms brought it back because it shifted my vertebrae. It was about 20 years for my spine condition to progress to surgery after the injury. Each case is different, and the degree of injury can be different.
Here are some links. There are 2 stories about my surgeon at Mayo, and one of them is mine, and the medical literature that I found that described my condition of "funicular pain."
Sharing Mayo Clinic: Spinal surgery saves teen swimmer’s mobility
https://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-spinal-surgery-saves-teen-swimmers-mobility/
Sharing Mayo Clinic: Using the Art of Medicine to Overcome Fear of Surgery
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/
National Library of Medicine: "Cervical cord compression presenting with sciatica-like leg pain"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
Would you consider an appointment at Mayo for a spine consultation? If you would answer yes to that, you may want to call the Mayo billing department to see if your health insurance is accepted at Mayo.
Billing can be found at https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance or call Patient Account Services toll free at 844-217-9591 Monday through Friday.
Then if you wish to continue, you may request an appointment at any Mayo Clinic campus with this link: http://mayocl.in/1mtmR63
If that isn't possible, you'll need to research to find a good spine specialist at a major medical teaching facility.
May I answer any questions for you about my experience as a spine patient?
Jennifer