Small Nerve Fiber Neuropathy (Idiopathic) EYE ISSUES

@rnlorena Thank you for your message. When I read your message about your symptoms with your blood pressure suddenly getting very high and visual disturbances, my first thoughts were something related to your neck. In my own experience of being a cervical spine patient and also having thoracic outlet syndrome, I can have my vertebrae move and shift from muscle spasms. I had some spinal cord compression at C5/C6 from a collapsed disc osteophyte complex and that was fused 8 years ago. My symptoms improved a lot, but if I kick up the TOS that causes tightness which is worse on one side of my neck, and that can set up some independent rotation of the cervical vertebrae. That causes headaches, neck pain, scapular pain, possible jaw pain, and some slight dizziness. Every once in a while, my heart rate goes up which I believe is related to my neck. I do better when I work on my neck, chest and shoulders to stretch out the muscle tightness.

There have been some other spine patients here talking about vision problems with cervical spine issues. Recently, I have had more neck tightness from the TOS, and I had a brief less than a second disturbance in the vision of one eye getting blurry, and then it returned to normal. I think TOS is more common in spine patients because both may be caused by an injury such as a whiplash. TOS often goes undiagnosed because so few doctors understand it. From your description of straightening of the lordotic curve, it sounds like your vertebrae are moving due to muscle spasms. If there is some instability allowing a slight misalignment, that may be able to generate the symptoms you've described. I found this literature about cervical instability and visual dysfunction.

"Cervicogenic visual dysfunction: an understanding of its pathomechanism"
https://pmc.ncbi.nlm.nih.gov/articles/PMC9924804/
Have you had any spine surgery? You have quite a list of spine related pathology that I think would bring you offers for surgery. The questions you may think about asking would be how movement in the vertebrae and any possible instability may generate your symptoms. I don't know if they would recommend physical therapy, and if they do, it would be worth also looking at myofascial release. There is a provider search at https://mfrtherapists.com/ . There is a point when physical therapy doesn't help anymore, and symptoms may plateau. I reached that point, and my PT was just trying to stabilize the situation by realigning my vertebrae and using a Dolphin neural stimulator to interrupt the pain signals in the nerve roots. That would resolve my symptoms until the next muscle spasms and the pain relief lasted about a week.

@jenniferhunter Thank you for replying back. I had a Lumbar Laminectomy is July 2024. It was on February 17, 2025 that I had pressure come up in my head and I had blurry vision. It went away in less than 2 minutes. No deficits. But they couldn't find anything on scans. The eye thing that is going on comes and goes at will. The first time was March 13. I was sitting watching TV and I noticed what I will call a subtle feeling close to my eye. I took my BP and it was 180/90 I took a Clonidine and went to the ER and again they didn't find anything. I have had it happen more and am keeping track. I am keeping a journal of dates and whatever happens to me. One day It came to the left eye then it came to the right eye some time later. My cardiologist knows about it, my Ophthalmologist knows about it (He use to be a Neurologist). My regular doctor knows. I saw my Ophthalmologist and he checked my retinas and they were good. I have a referral in the works for a Neurosurgeon. I am hoping to hear something this week. When I saw the Neurologist that diagnosed me with SNF neuropathy idiopathic non length dependent I questioned him but he didn't have any answers. He said, "Don't go to a Neurosurgeon." I did not respond to that. I will go to whoever I think can help me. After the hospital visit in February I was told to see a Neurosurgeon. I specifically asked if my neck could have caused the pressure in my head and blurry vision and he said I had to get an MRI. I went back to see him and asked him again and he said well I don't know. When I saw him at that visit I was in a pt room. I heard him coming out of other patient rooms and he was sighing like he sounded frustrated and it didn't sound good to me. He told me that he could give me 3 injections in my neck in three different places. I asked him what he would use. He mentioned numbing medication and steroids. I was not happy about that and I made a comment. He got all flustered and said that Medicare requires him to start there. I had my back surgery and wasn't required to do anything else. I did not get any injections. I only think of that as a stop gap. The eye/blood pressure issue to me is more important right now and also I want to know more about this head pressure. I don't wish to have that again either. I also have other things that need done but they will stay on the back burner for now. I was supposed to go on a trip with two of my friends but I told them I couldn't. They understood why. I won't be making any trips unless it is to Houston if nothing is happening here with Doctors. I always read my reports and I think my neck needs some work. The problem is the Neurosurgeon. There seems to be a difference between a Doctor of Radiology who reads reports day in and day out and the actual Dr that you see. That in itself can be frustrating. If the Neurosurgeon says he can't help me I have a plan in place. I am most certainly not gonna sit and wait for another shoe to drop. No way. Having the head pressure and blurry vision which scared me and then to now have the feelings around my eyes it makes me nervous. Because I don't know when or if it will come back. Thank you so much for your response. I really appreciate it.

Seems we have all these specialists in their little towers and game is to bounce you from one to another.

@ichbindck Well that is true. I asked for a referral to a Neurosurgeon. Now I finally got a call and they asked me a bunch of questions. So here is the real deal. The Dr. is going to decide whether he will see me or not. How about that. I am already looking for help elsewhere just trying to be prepared. @rnlorena

I agree with you 100% regarding radiologists. I have an AVM in right temporal lobe. It was first found in 2008 after car accident. I was told to have annual imaging. Being lazy, I had my next scan 2012 then 2014,'15, '17 where I had full cath imaging. Two months ago I started having weird issues...Internist sent me for MRI W/WO contrast. Rx stated it was for the AVM. Brought past scans for comparison but no one would take them. Two days later I received results...NO AVM and nothing for comparison. That’s not scary as sh*t! I went mental. I wonder how many people may have died because this idiot can't read a neuro scan! Immediately went back to my neurosurgeon! WOW!

@malmor I have had this happen a couple of times. When I went to the hospital in February they found a nodule on my thyroid. Since then I have had a scan and it's not there. Now you see me now you don't. And then the difference between a Dr. of radiology who reads scans day in and day out for years. Then here come the doctor who says it isn't what the radiologist says. That is so crazy. I do know that when I first went to the hospital that they did a CT. The Doctor said that there was something on the back of my head and that they would get an MRI to see. It was probably artifact. Because they found nothing on the CT related to the head pressure and blurriness the next day they did the MRI and still found nothing. I saw awhile ago that they have a MRN which is a Magnetic Resonance neurography and it can evaluate peripheral nerves. I don't know in my case if they would do one but I want to find out. @rnlorena

It wasn't that it didn't appear on the scan, but the radiologist who must have been informed as to why I had the MRI and should have known what to look for, missed it entirely. I went back to the hospital where I have my imaging done and demanded that a neurologist read them and I gave them my prior scans so they can see how it has been growing. Even this neurologist didn't give a cr*p because he wrote a new report which happened to be verbatim from my scan from 2012. The AVM has actually grown, which was indicated in the following scans I had taken, of which he couldn't be bothered to read. The best part...They sent me a bill! YA!

@rnlorena I'm glad you are advocating for yourself. You can't count on your doctor for this as is sounds like they are not paying attention to your cervical spine symptoms. Good for you!

@jenniferhunter I have an appt. on Thursday to see the PA in Neurosurgery. I will not be accepting shots in my neck or pills. That is nothing but a stop gap. We will see what they have to say. I myself feel like they expect you to be broken down and in horrible pain before they will do anything. I have been looking at Houston. They have some hospitals there that have what appears to be large Neurology units. I have read about them. I am gonna see if I can contact them this week and talk to someone about an appt. My plan is to hopefully talk to someone that knows medical terminology and I can tell them what I have been experiencing around my eyes. And I hope I can snag an appt. there. I know they now have MR neurography where they take pictures of your nerves. I would almost think in my case since I get these feelings around my eyes that might be helpful. I did read that an MRI can detect certain things about the nerves. When I saw the neurologist who diagnosed my small nerve fiber in 2021 and asked him specific questions regarding head pressure and the eye things he couldn't come up with anything. I just cannot understand this. @rnlorena

@rnlorena I chose my spine surgeon after doing a lot of research and reading any medical publications they authored and anything I can find online such as speaking and teaching at spine conferences. Generally, I think it’s best to play dumb and not use correct medical terminology because they may think you are reading online and diagnosing yourself. My PT says let the surgeon be the brain in the room. I had used correct terminology with a specialist and he refused to help. I also scared him out of it with my body map pain drawings because I had pain everywhere from cervical stenosis. That is what most of them missed because they didn’t connect my symptoms to funicular pain. I found medical case literature that was similar to my situation and with that in hand, I approached a doctor at Mayo who was familiar with that condition. If you consider traveling to Mayo. My surgeon, Jeremy Fogelson, would be a good consultant. I think it helps get accepted at Mayo when your specialists can’t figure out the problem and I think that is what you’re experiencing. Let me know what your next consultation brings to the table.