Double Vision & Spinal Stenosis
I have spinal stenosis, and now double vision, and can’t get anyone to help me. Neurologist took MRI and neck showed narrowing of cord, also I developed double vision. Eye dr says tale to Neuro and Neuro nurse said go to ER. So that isn’t any help. I don’t know what to do. Not seeing Neuro dr. again until the 14th of January for an EMG. Then can’t see dr. until the 29th of January. I can’t stand it and don’t know what to do at this point. Asked the nurse to see if I could get therapy on my neck if that could be the problem but no answer so far.
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Hi, @dablues, and welcome to Mayo Clinic Connect. Since you are having these issues with your spinal stenosis, specifically in your neck, as well as the double vision, I can see that waiting till the end of January to see the doctor following your EMG would be hard.
I'd also like to introduce you to some other Connect members who have talked about spinal stenosis or double vision to see if they may have some thoughts for you on managing your symptoms while you wait for your EMG and doctor visit. Please meet @suerc @wilcy @3les54 @joanneo @zorone @anon79059957.
Sounds as though you did not consider going to the ER as a valid choice for you. Why did you not feel that option was any help? Can you follow up with the nurse tomorrow, Monday, on the neck therapy?
@dablues I would recommend getting copies of your MRI disc and taking it to another doctor for a second opinion and you can go into an emergency room with that if you need to. They should have specialists on call.
There is a big concern with doing any physical therapy and manipulation of the cervical spine if there is any spine instability. That needs to be determined by a doctor and may need X rays in different positions so the doctor can measure if the vertebrae are slipping past each other. My physical therapist told me she waits before doing therapy until it is known if there is spinal instability. The blood supply to the brain in the vertebral artery is close to the spine and can be easily injured by a spinal injury. Double vision can have a vascular cause.
I had cervical spinal stenosis with compression of my spinal cord due to a collapsed disc and bone spurs that were compressing it, and I had successful surgery at Mayo to free my spinal cord and a fusion of C5/C6. Is that something that you are considering? You might want to see a spine neurosurgeon for that opinion. The spine surgeon would order necessary tests and is the doctor who can surgically repair a spine problem. A neurologist is the doctor who figures out what nerves are affected and how well they are working. Spine surgeons usually have other specialists they like to work with for these tests, so it might save time and effort if you start with a surgeon. It can be a physical issue because of a spine problem that also causes a vascular issue. I also have thoracic outlet syndrome which is a vascular problem where the physical tightness of my neck and chest muscles compress nerves and blood vessels that go to my arms and this had overlapping symptoms with my spine problem. The best place to evaluate this kind of problem would be at a larger teaching hospital medical center like Mayo or Cleveland Clinic or a major university with a medical school.
You will need to advocate for yourself and not wait a month for an appointment if you feel your case is urgent. Stenosis can cause permanent nerve or spinal cord damage if it goes untreated too long. It took me 2 years to find a surgeon who was willing to help me (before I came to Mayo) and during that time I lost about half my muscle mass in my shoulders and arms. I am 3 years post op now, and still do not have all of my muscle back (perhaps about 2/3). I am still hopeful and still working on it, but it takes along time to recover. You will have to live with the outcome of your decision, so don't waste time on doctors if they don't want to help you. Move on, and find a better one. I wish I had come to Mayo sooner. 5 surgeons prior to this misunderstood my case and would not help me and I just got worse. My Mayo surgeon understood what the problem was and offered to help me right away and I didn't waste 6 months waiting for a series of tests like I had done with the previous doctor only to have him decide to refuse surgery. They are taking a risk with their reputation and ratings of surgical success, and if you are the patient with a few complictaoing issues, it is harder to find a surgeon confident enough to help, so if that is you, start at the top and go to the best who are available to you. Mayo gives priority according to medical need in granting appointments. Hopefully you can request an "emergency" appointment somewhere. Doctors do save slots for emergencies and you can ask for that.
Thank you for your response. Will consider all you stated. I won't be seeing my doctor until the end of January. He has another test in the middle of January for me to take. Also made an eye appointment in January. Couldn't get anything sooner.
ER is out because I have been to the ER 3 times since November with acute anxiety due to the problems I'm having and all they do is take the same blood work over and over again. I doubt they will do anything different since I do have a neurologist and an eye doctor. The neurologist nurse said go to ER. They will not do anything other than refer me to a doctor. Am sure my insurance company is not happen with my ER visits. Anytime I tried to see a doctor it's a long wait. What is going on with me I don't know if it's a combination of things or not, but had a brain scan, EEG, cervical spine scan, and I'm not getting any better. Now my legs don't work right and I get off balance unless I wear my sneakers that has supports in them.
@dablues I also had the symptoms of problems walking and an uneven gait and dizziness. For me, that was caused by the compression of my spinal cord in my neck because of a ruptured disc and bone spurs that were pressing into the spinal cord. That got progressively worse as time went on. I could bend my neck and cause pain somewhere in my body, and later when I bent my neck, it caused an electric shock to go from my head and down my entire body. Those are symptoms of spinal cord compression.
My recommendation is to get your test results and get an explanation of what they say about your case so you understand. When you understand the real problem, it helps you to find an answer and make decisions. Not knowing what is wrong when you are getting worse is probably increasing anxiety. I had a lot of anxiety to deal with myself because of fears from the past that triggered a fear of having surgery. I did work through all that emotional stuff and getting through surgery was not as bad as I had imagined. I am an artist and I had to decide if I wanted to save my talent and ability, and doing that required me to face my biggest fears. That changed my life profoundly, and I had a great recovery and result from my surgery. I had to advocate for myself even though I was afraid and 5 surgeons misunderstood my symptoms and would not help, but the 6th (at Mayo) was the best of all of them, and he gave me my life back.
It might help to write down your symptoms and when they happen and date them so you can document a progression of changes. I drew diagrams of mine. Have you considered going to a different hospital or emergency room? Every opinion I sought was in a different facility because once you are assigned to a doctor, it would be hard to get a second opinion in the same facility because the doctors respect each other's opinions there. If you have copies of your records and reports of tests and imaging collected together, it is easy to take that with you when you seek another opinion.
I know it is easy to get overwhelmed with all of this, and counseling sure does help and will help you see it objectively. I don't know if your insurance requires you to see only doctors on their lists, but for me it was important that I selected my doctors myself. Find a surgeon who's areas of interests matches what you need. I studied their published literature and I understood a lot about specific procedures for spine surgery because I researched it myself, and that was how I found the surgeon at Mayo who helped me. It was because I looked up a term in a paper he co-authored, that I found links to other studies that described cases similar to mine. I found what all 5 other surgeons missed right after the 5th one decided not to offer surgery. I tried to get help addressing this with him from other doctors there and none would help me even though I had been a patient of one of them for 10 years. I needed an opinion somewhere else, and I came to Mayo, and I knew the surgeon there would understand my case because of his literature. I sent a copy of the literature with a case like mine with my request to be seen at Mayo. It took 2 years to get through all the visits and 5 surgeons who didn't want me as a patient, and I wish I had come to Mayo sooner. I was trusting that everything would work out, but it didn't.
Here's my story. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
I'd be happy to help in your journey any way that I can and answer questions. I was fortunate that my biology background helps me understand medical literature. I can't diagnose, but I may be able to help you understand what your reports are saying. You can take control of your health decisions and your doctors are working for you. You can fire them and move on if they are not meeting your needs.
I updated my post with a new post and posed my results. I won't get to see my doctor until the end of January. So, I called the office and told them I wanted all records that were available at that day and I got my MRI Images, and results, plus results of the EEG. I posted the cervical MRI and when looking up what some of the things they said got me more anxious. Plus don't like the brain scan either.
I love Mayo Clinic. My husband has been going there for checkups since he got cancer. My primary insurance Mayo Clinic doesn't have a contract with but I do have two other insurances at this time too. I read your story. Very informative. Thank you for posting.
@dablues It would be worth calling the other Mayo Campuses to see if your insurance is accepted. It can be different between them. You might have a wait to get into Mayo, and they have to review your case and accept you. I was told it might be a 3 month wait, and I got in sooner after a month because of a cancellation. It was worth it to me to travel to Mayo and they don't waste your time. They get all their testing done right away and you have an answer usually within a week.
Doctors have to look for a differential diagnosis for things like MS or ALS that can be confused with a spine problem because they need to know with certainty what is causing the pain. Clearly from your other post, you do have a multilevel cervical issue with significant impingement of nerves that exit the spine in the foramen (nerve roots). That might be part just of the issues and there could be something else causing overlapping symptoms. According to my neurologist, MS would show some changes in the brain imaging, and the EMG nerve conduction tests would show some malfunction in conduction of signal in the nerves.
You might ask for imaging in the rest of your spine too to rule out a spine related cause there since you have leg pain. I had Mayo do MRIs of my thoracic and lumbar spine so I had a complete picture. What makes this confusing (if it is a spine issue) is that nerve root compression causes pain that follows a specific dermatome map, but spinal cord compression can also cause pain, but it doesn't follow a map. It can be anywhere, and that may depend on how you move your head or neck and the spinal cord should move and float freely inside the spinal canal and that can change where the cord may be touching bad discs or bone spurs (osteophytes). The spinal cord is a huge bundle of all the nerve pathways for everything in the body and when one part of it gets compressed, it's hard to know where that is happening. You can also have a situation where the spinal cord gets touched in multiple places because of the bulging discs and osteophytes and it can cause pain in an unsuspected place like in the legs, and that leg pain can be generated by spinal cord compression in the neck (funicular pain). The dermatome map for leg pain, if caused by compression of nerve roots would be from the lumbar spine which I didn't have, but I did have a bulging lumbar disc. It cracks on rotation and that did change some sciatic pain and stop it temporarily when I still had cord compression before my surgery. I had pain all over my body in every dermatome. That is what confused a bunch of surgeons in my case and because they didn't understand it, they wouldn't help me. If I keep my core strength up and maintain good posture, I avoid leg pains altogether. Having spine surgery that freed the cervical spinal cord resolved all the pain I was getting everywhere in my body from the compression in my neck. There are also some pelvic syndromes that can cause sciatic pain from nerve compression and misalignment that are not spine related. I have had pelvis tightness also create some sciatic pain, and my physical therapist has been able to resolve that, and what happens is that it pulls on the spine and throws the pelvis out of normal alignment and compresses nerves that pass through overly tight muscles.
Your doctors should be able to tell you why you have your symptoms and be able to connect that to what they see on imaging and tests. That is where in my case, they got it wrong. The spine surgery on my neck at C5/C6 completely resolved my leg and body pain, as well as the problems walking with an uneven gait.
Here are a couple links with information and the literature I found that described cases similar to mine.
This is a Spine Health link that explains "funicular pain". I'm glad to see they have updated this as this was not explained at the time of my surgery. https://www.spine-health.com/conditions/neck-pain/types-neck-pain
This explains pelvis alignment issues. https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
This explains dermatome maps and where the nerve pathways go. https://www.healthline.com/health/dermatome#dermatomes-list
Thanks again for your reply. We are going to Mayo January 20th, for my husband but doubt I could even get a appointment for me at the same time while we are down there. Will check out Mayo Campuses. Didn't know anything about them. We just go to May in FL for my husband.
The ER does absolutely NOTHING! Blood work and that's about all.