Double Vision & Spinal Stenosis

@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.

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My problem is similar but I have not been able to get into Mayo or Cleveland Clinic because I have a UHC Medicare Advantage plan, and despite my plan paying the same for in and out of network, they have yet to accept my requests for services. Makes me so sad!

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@rbcookson I'm sorry that your insurance is causing an issue for you. I have heard of this before with another patient on the same plan, and Mayo didn't accept the Medicare "Advantage" plan. It makes much more sense to have real Medicare and add a Medigap policy to it. I actually called Mayo when I had to make that decision to ask what insurance was accepted there before I signed up. The "Advantage" plans really are not an advantage because they tend to be like the HMO policies where you can only see doctors on their network lists. You might want to try to change this when it is time to sign up again. These "Advantage plans" promise all kinds of perks, but their coverage is not as good as Medicare. Medicare lets you see any doctor in the country that accepts Medicare, so it is portable. Often the "Advantage plans" are local or only within your state of residence. Mayo in Rochester does accept real Medicare with a Medigap plan. They told me which ones of those supplemental plans they accept, and we went with Mutual of Omaha.

Is your condition urgent? It is almost halfway through the year, and if you need future surgery, would that be reasonable to wait and change your insurance coverage to real Medicare for next year and then reapply for an appointment?

The other patient I mentioned did see a doctor at a Mayo Health System hospital, and then the insurance refused to authorize her surgery, and played a waiting game of appeals, so the surgery had to be canceled. It wasted everyone's time, and she was forced to have surgery with a local surgeon who she didn't fully trust because she was in a lot of pain.

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Thank you so much for your helpful comment! Unlike in the past, when I went online for an appointment, I stayed that I would accept any of their clinics. When they called they said that my insurance was accepted only at the Mayo Clinic in Rochester. While I don’t know anyone there, I am willing to pay for airfare and an hotel for as long as I need to be there. So I am thrilled. Need to get some addition paperwork to them, and then 2 weeks later they will let me know if they will accept my case. Prayers appreciated! Are you the person who had cervical spine surgery that also helped her diplopia? If so, I would dearly love to chat with you on the phone. Is that possible? Thanks again for your help! Robin

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@rbcookson
Hi Robin,
I may have been chatting with someone about double vision, but I didn't have that. I did have vertigo from my vertebrae twisting themselves from muscle spasms from the spine condition. My spine condition was spinal cord compression at C5/C6 that was affecting the coordination of my arms, and I am an artist, so it was very disheartening as well as causing pain all over my body. That is what confused a lot of surgeons because I had unpredictable pain that could travel anywhere, so 5 of them wouldn't help me. That is why I came to Mayo, and it was like a breath of fresh air. I got the help I needed from a great surgeon, and I was so grateful because he changed my life that I painted his portrait as a gift to him.

Here is my story:
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/

I drove 5 and a half hours to get to Mayo and it was worth it. Likely, if you have an appointment, you will be diagnosed, and they will recommend treatment. If you need surgery, you'll probably need to return several weeks later for that. There are many hotels that are small apartments with full kitchens, so you don't need to go out. I like Candlewood Suites which is not as expensive and does have a shuttle to the Mayo campus and St. Mary's hospital. The closer to Mayo, the more expensive, but hotels do have Mayo Clinic rates for patients, and the Concierge can help you find them (free service.) It will cost a bit more because of travel that will be out of pocket, but Mayo is worth it for the quality of care that you get there. I did not experience anything close to that with all the spine centers I visited as a patient. Mayo is efficient is scheduling other appointments while you are there and tests that you'd be waiting weeks for at other medical facilities, so within a week typically you have an answer and a plan.

I'll keep my fingers crossed for you. What are your concerns?

Jennifer

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@rbcookson
Hi Robin,
I may have been chatting with someone about double vision, but I didn't have that. I did have vertigo from my vertebrae twisting themselves from muscle spasms from the spine condition. My spine condition was spinal cord compression at C5/C6 that was affecting the coordination of my arms, and I am an artist, so it was very disheartening as well as causing pain all over my body. That is what confused a lot of surgeons because I had unpredictable pain that could travel anywhere, so 5 of them wouldn't help me. That is why I came to Mayo, and it was like a breath of fresh air. I got the help I needed from a great surgeon, and I was so grateful because he changed my life that I painted his portrait as a gift to him.

Here is my story:
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/

I drove 5 and a half hours to get to Mayo and it was worth it. Likely, if you have an appointment, you will be diagnosed, and they will recommend treatment. If you need surgery, you'll probably need to return several weeks later for that. There are many hotels that are small apartments with full kitchens, so you don't need to go out. I like Candlewood Suites which is not as expensive and does have a shuttle to the Mayo campus and St. Mary's hospital. The closer to Mayo, the more expensive, but hotels do have Mayo Clinic rates for patients, and the Concierge can help you find them (free service.) It will cost a bit more because of travel that will be out of pocket, but Mayo is worth it for the quality of care that you get there. I did not experience anything close to that with all the spine centers I visited as a patient. Mayo is efficient is scheduling other appointments while you are there and tests that you'd be waiting weeks for at other medical facilities, so within a week typically you have an answer and a plan.

I'll keep my fingers crossed for you. What are your concerns?

Jennifer

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Opps, just skimmed your story and got
the name of you doc but not which clinic you went to.
Blessings,
Robin

On May 13, 2023, at 8:51 PM, Mayo Clinic Connect wrote:

[http://email-route-n1-use1.hubapplication.com/CI0/0100018817bda088-aa066d12-a5cd-457c-b101-ec500be6c6fd-000000/DUo43XldSiHtIHUlWqQibonaeKHtlPxsgxurLmSgYxg=300]

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@rbcookson Dr. Jeremy Fogelson is at the main campus in Rochester, MN. He's an excellent neurosurgeon and a kind doctor and very personable. I felt very comfortable with him and had great results from his surgery.

Jennifer

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