Announcement

Collapse
No announcement yet.

VISION LOSS WHEN FLEXING NECK

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    VISION LOSS WHEN FLEXING NECK

    Hi all, I have SPMS with multiple symptoms. There's always something going on, life is not boring in the MS department.

    In the past few months I have started losing vision in my right eye went I flex my neck to look down, or when I turn my head in certain directions. I can tell when it's going to get bad, as first there's a few pinpoints of light that flash across my vision. If I do not pay attention to those warnings, and keep my neck flexed, then my vision will either become all kaleidescopes or it will get dark clouds and opaque clouds over the entire field of vision. And, my eyeball will start to hurt.

    Once I straighten up my neck, it takes about 1/2-1 hour for my vision to return to baseline.

    The majority of my worst lesions are located on C2-3 and on my brain stem.

    Soooo is this and MS thing? It's scaring me. I always thought of wheelchairs, not vision loss. I will be seeing my neurologist on January 18.

    Thanks for any ideas or experience you can share.

    #2
    Hi HereIam,

    Yes, it's a good possibility the vision problem when flexing your neck is caused by your MS You might consider contacting your Neurologist sooner than your January 18 appointment and possibly a Neuro-Ophthalmologist for a more comprehensive work-up.
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

    Comment


      #3
      Hi Snoopy And thank you for checking in, you are always reliable and with good knowledge and advice.

      Arghhhhh I thought it could be part of MS but I just can't figure out how.... pressure on a lesion, a lesion becoming a black hole? I'll look forward to figuring out the mechanism of this weird one.

      As for seeing the neuro early, that's impossible at this point. We have moved from the Boston area to a lake in NH and I'm in that in between world. My neuro at the MS Partners MS Center in Boston will keep my scripts going for me until I see the new neuro in Concord, NH (he recommended her).

      And, like most things MS that land on me, I always ask the question, well, what can they do anyhow? Nothing, that's the answer that usually lands on me. We gave up on pulse steroids a few years back, because I am so far beyond the inflammatory stage of the disease and the last few rounds did not improve the progression we were aiming to hit.

      So, I shall wait, and December always flies by, the holiday times do that. I bought a Table Mate table to use while sitting on the couch. It allows me to use my computer, color, and write without having to look down. I have stopped driving. There have been no times of this symptom upsetting my driving, but I will not take a chance that it may happen.

      Very rarely have I allowed myself to be as discouraged as I am now. It's OK, winter is here, I have time to concentrate and gather and adjust. However, the majority of my past times are all very visual---Quilting, sewing, knitting, and most important of all, I am a Loon Watcher and Guardian for the loons on our lake for a Preservation group, so this is all a bit much to swallow right now. I think that it's good that this isn't happening in the middle of lake season, so that I have time between now and then to take any steps that can be taken, make adjustments that can be made, and practice acceptance if that's all that's left.

      Comment


        #4
        Hi HereIam,

        Very rarely have I allowed myself to be as discouraged as I am now. It's OK, winter is here
        No, it's not okay. You have the right to feel discouraged this disease sucks big goose eggs

        I have time between now and then to take any steps that can be taken, make adjustments that can be made, and practice acceptance if that's all that's left.
        Make adjustments and practice acceptance? Yep, you're right that's all you or any of us can do I'm sorry HereIam it can be so difficult when those adjustments and acceptances are based within those things you love to do and are important to you.

        The vision issue upon neck flexing is going to be based on a troublesome lesion on the cervical spine, brainstem, visual pathways or a combination --- my unprofessional thoughts . It makes me wonder if you were to wear a neck brace(?) if that would help --- I don't know
        Diagnosed 1984
        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

        Comment


          #5
          Yes, Snoopy, I wondered about the neck brace, especially at night. If I sleep with my neck in just the wrong position, I'll wake up during the night totally blind in my right eye. And, that cannot be good, to cut off those signals for so long. When awake, I can pretty well control my head and neck position to keep my sight going.

          Acceptance is a huge part of this disease, especially when it gets progressive. I am glad that the young peeps with MS have a large arsenal of meds to keep them from every getting where some of us older folk have ended up.

          Comment


            #6
            Hi HereIam:

            You're off on the wrong track. What you're describing is NOT MS. MS isn't positional, and even if it were, there are no nerves in your neck or brainstem that control vision turning "on" and "off." Your optic nerves are at the FRONT of your head, right behind your eyes, and go directly into your brain. They don't go anywhere near your neck. What you're descibing has nothing to do with your neck, your spinal cord or the nerves in your brainstem.

            What you're describing is classic for compression of blood vessels. Flexing your neck should NOT be cutting off blood flow. Anything cutting off blood supply to your head is not normal and is not good. Cutting off blood supply to the head that way is the mechanical equivalent of a stroke.

            My best recommendation is for you to NOT flex your neck and go to your nearest emergency room immediately to rule out any urgent conditions.

            If for some reason you don't want to do that, then please DON'T flex your neck and go to the ER otherwise ASAP, or see an ophthalmologist or your primary care doctor first thing on Monday morning. Absolutely DO NOT WAIT until your neurology appointment. This is NOT MS, and it has the potential to be very dangerous. Please go to the ER NOW.

            Comment


              #7
              Hi JR--Thank you so much for taking the time to respond to my question. You are right on 1000 different levels.

              One thing I didn't include in my post was that I did go to my PCP, who had ultrasounds done of my carotids, and also had MRI's done of my head and cervical spine, and had me see his vascular guy. They came up with a big fat nothing. Except for "Holy cow, these lesions on your brain stem, c2-c3, and [somethingorother] pons are whoppers and may be going black hole on you."

              And that's what they came up with. They had some wishy-washy explanation about nerve bundles affecting nerve roots that would affect the optic nerve. And, so I wait for that January 18 appointment with the neuro.

              However, with your caring, cautionary and accurate warning, I will call my PCP on Monday to get to a neuro-opthalmologist immediately. It's affecting the eyes, let's see someone who is in that specialty.

              Thank you!

              Comment


                #8
                An update. I did see my PCP and he re-evaluated the whole mess and again declared all blood flow to my brain is as it should be. He contacted the neuro who said yes, with the lesions in the spots where they are, and the nature of them, position could influence my vision. As for going to her quickly, or to an opthalmologist quickly, we just aren't going to bother with that. Because there is nothing they can do. Pulse steroids have had no affect on anything that has worsened over the past 10 years, and so I'm done with those. So, I shall sail along, adjusting. Funny that I'm adjusting to the vision change in my right eye, as it comes and goes. The thing that's driving me truly nuts is the new buzz patch along my right jaw, which slowly has been getting worse. In the past I've had new buzz spots join in the chorus and have declared "this is the one that's going to drive me nuts!" and that's what I say about this one. Then I get used to it that is what will happen now

                After I see the neuro in January I'll come back in with her explanation of why it can be positional and just what it is they are seeing on my MRI, as it sounds like my collection of lesions are changing.

                Comment


                  #9
                  Originally posted by HereIam View Post
                  As for going to her quickly, or to an opthalmologist quickly, we just aren't going to bother with that.
                  Quickly was only an issue because you had left out the really important detail about already having had a vascular workup (whew!). After that, the problem wasn't urgent anymore.

                  From your description, it's apparent that the cause of your transient vision loss is positional. And if it's positional, it's mechanical in some way. So I'm keen to hear your neurologist's explanation of how something neurological can be the cause of a mechanical issue rather than the effect.

                  It's still a good idea to ask your neurologist for a referral to a neuro-ophthalmologist, if for no other reason than to get confirmation of your neuro's explanation from an expert in that exact subject matter.

                  Comment


                    #10
                    Hi JR--the doctors are on me now! I am having MRI's of the brain and cervical spine on Thursday and seeing a Neuro-Opthalmologist next week.

                    I really hate all of this, because there's really nothing they can do about any of it. I now live on a lake and I'd rather spend my time here than at a doctor. It's just the way I am. After living so long with this disease, and never once having a symptom stopped, I am weary of the chase. My symptom meds, healthy diet, good rest, and simple living are my best treatment.

                    However, I do feel lucky in that I have a PCP who is pro-active and bright. He communicated well with the Neuro. I just moved to this area and so am starting fresh with this Neuro. Once the PCP communicated with her, things started to happen. I am grateful for that.

                    I have l'hermittes not only down my spine and limb, but also to my head--those zaps are stinking nasty and scary. Apparently there also can be l'hermittes to the eyeball. This is what they are curious of, I think. I don't really know. I just know that when the PCP communicated with the Neuro and reported that I had these head zaps, that's when the MRIs were ordered.

                    This is one crazy disease.

                    Thank you for staying with me through this journey. I appreciate your ideas and viewpoint, and caring.

                    I hope that today has been a good one for you.

                    Comment


                      #11
                      I hope your MRIs went well. I appreciate what you said about your doctors being distracted by things other than your vision loss.

                      I'm still quite interested in hearing about what the neuro-ophthalmologist says. (Hopefully, s/he won't be distracted by anything else.)

                      Comment


                        #12
                        Hey JR, the second set of MRI's have been revealing. The first ones were 3 months ago when I just started to have vision problems. On those MRI's there was no evidence of severe issues with carotids. There was what they called "normal" changes for my age (60).

                        Last Thursday's MRI's reveals an occlusion in the carotid on the right side. Yikes. This explains a lot, sensibly, finally. I really do not understand how things must have been starting to go haywire but didn't show up in the first set of MRI's or the ultrasounds, and now here we are. It's like I've brought two different bodies to the tables!

                        Tomorrow they are repeating the ultrasounds and a plan will be formed. Sometimes they just watch, as clearing those suckers out can cause more problems than you already have. However, I am now missing a small patch of my central vision in my right eye, so I don't know if that makes it more urgent.

                        I'm certainly not flexing my neck, or looking to the left or at the floor, ..... or any of the other things that have caused my vision to go out. They have me on a baby aspirin twice a day and I'm not about to pull up to a table of ribs and ice cream, that's for sure.

                        You were spot on, my friend.

                        Comment


                          #13
                          Originally posted by HereIam View Post
                          Hey JR, the second set of MRI's have been revealing. The first ones were 3 months ago when I just started to have vision problems. On those MRI's there was no evidence of severe issues with carotids. There was what they called "normal" changes for my age (60).

                          Last Thursday's MRI's reveals an occlusion in the carotid on the right side. Yikes. This explains a lot, sensibly, finally. I really do not understand how things must have been starting to go haywire but didn't show up in the first set of MRI's or the ultrasounds, and now here we are. It's like I've brought two different bodies to the tables!

                          Tomorrow they are repeating the ultrasounds and a plan will be formed. Sometimes they just watch, as clearing those suckers out can cause more problems than you already have. However, I am now missing a small patch of my central vision in my right eye, so I don't know if that makes it more urgent.

                          I'm certainly not flexing my neck, or looking to the left or at the floor, ..... or any of the other things that have caused my vision to go out. They have me on a baby aspirin twice a day and I'm not about to pull up to a table of ribs and ice cream, that's for sure.

                          You were spot on, my friend.
                          Herelam,

                          If you don't mind me asking, how did things work out for you related to the carotid artery and vision? My MRI last year showed nothing, but just had carotid ultrasound since dr heard a bruit. Have more tests to go, but the u/s determined "moderate blockage" on right side. Also have different Blood Pressure readings on left and right side. Seemed like depending on other tests, kind of a monitor and watch and see.

                          So not sure what it all means yet and trying not to get too stressed. Will talk to cardiologist in 2 weeks and have neuro appt in June.

                          Thanks
                          Kathy
                          DX 01/06, currently on Tysabri

                          Comment


                            #14
                            Hi Kathy. Sorry to hear of this development, however am glad that your doc recognized the bruit sound and is following up.

                            I had a carotid enderctomy on Xmas Eve 2016, was put in hospital urgently following CT angiography. Went home 24 hours later. The vision anomalies never occurred again. The surgeon said that those were an incredibly rare presentation of a carotid issue. I got lucky. Have had no issues since.

                            This is very very tricky precise surgery, lest they give u a stroke. My blockage was 98%. Anything beyond that makes surgery nearly impossible, it ends up behind safer to leave the blockage and the blood flow is covered by other veins and arteries.

                            You may be at the point where they watch with annual testing. Do not let any one tell you that putting in a stent is a good solution. It is not and is very dangerous.

                            Good luck, let us know how u do.

                            Comment


                              #15
                              Originally posted by HereIam View Post
                              Hi Kathy. Sorry to hear of this development, however am glad that your doc recognized the bruit sound and is following up.

                              I had a carotid enderctomy on Xmas Eve 2016, was put in hospital urgently following CT angiography. Went home 24 hours later. The vision anomalies never occurred again. The surgeon said that those were an incredibly rare presentation of a carotid issue. I got lucky. Have had no issues since.

                              This is very very tricky precise surgery, lest they give u a stroke. My blockage was 98%. Anything beyond that makes surgery nearly impossible, it ends up behind safer to leave the blockage and the blood flow is covered by other veins and arteries.

                              You may be at the point where they watch with annual testing. Do not let any one tell you that putting in a stent is a good solution. It is not and is very dangerous.

                              Good luck, let us know how u do.

                              Glad to hear things worked out great. My mom had carotid issues, so remember the discussions well on risks of the blockage, as well as surgery options. Appreciate your input.

                              I will know more after I talk to the Doc again after testing this Thursday. From all I read, if moderate is in the 30-50% range, monitor. If in the high end of moderate, 51-69%, then may add medication. And of course, monitoring, diet changes, etc..
                              Kathy
                              DX 01/06, currently on Tysabri

                              Comment

                              Working...
                              X