Small Nerve Fiber Neuropathy (Idiopathic) EYE ISSUES

Posted by rnlorena @rnlorena, May 3 9:41pm

Well I am at it again. This will be long. March 13,2025 I was watching TV and I noticed a feeling around my right eye. It was not painful but it was there. I took my BP and it was 180/90. I took a Clonidine and went to the ER. They did a CT of the head and found nothing. Since then I was going to have an MRI of the head and neck with and without contrast. They called me up and due to my age they wanted me to have blood work to make sure my kidneys were good. They asked me if I could go on that day. I said yes. Right after I hung up the phone I felt the feeling around my left eye for the first time. So I packed my bag with stethoscope, BP cuff, clonidine and water. I took my BP meds before I left because they were due. I got to Quest and the place was full of people. I checked in and sat down for the wait. After awhile I notice the feeling was now near my right eye. So now it was near both eyes. I took my BP and then took a clonidine because I also felt a lot of pressure in the back of my head this time but not like a headache. After having my lab work done I went home. My MRI was done April 17th. My BP has been very good except for when the eye thing happens. I had an EMG done on Monday
April 29. I took advantage of the fact a neurologist was in the room and told him what was happening. I also said I couldn't see a neurologist for 4 months because they were booked up. So he said he would get me an appt. I got one the next day. I told him all the things I have experienced since I had the head pressure and blurry vision. (Three Doctors have said I did not have a TIA.) The neurologist said that none of what I told him is related to my small nerve fiber. He did tell me one thing. He said don't go to a Neurosurgeon. I did not RESPOND to that. I had already asked that a referral be sent to a neurosurgeon. I have had the following since the head pressure. Large burning pain on top of my head. I know that is related to nerves. I have had intermittent pains in my head they come and go. I felt some feelings in my head like something fluttering in there but it didn't hurt. I also had pain once that was all the way across my upper back just below my shoulders and neck. I also had two large sore spots on top of my head. I know I didn't hit my head. But I googled it and then took my BP and it was up. So I took care of that. I am gonna write my MRI issues. I think whatever is going on in my neck is causing this.
C2-3 Central disc bulge with mild-to-moderate left and mild right neural foraminal narrowing. There is mild canal stenosis. Uncovertebral hypertrophy is appreciated. Central canal measures 12mm AP
C3-4 there is broad-based central disc osteophyte complex with mild-to-moderate bilateral neural foraminal narrowing. There is mild canal stenosis. Uncovertebral hypertrophy is seen. Central canal measures 12 mm AP
C4-5 There is posterior disc osteophyte complex with canal stenosis and uncovertebral hypertrophy. Mild bilateral neural foraminal narrowing is see. There is abutment of the ventral aspect of the cervical cord.
C5-6 There is a broad-based central disc herniation with compression of the cervical cord. There is mild bilateral neural foraminal narrowing. Uncovertebral hypertrophy is seen. Central canal measures 8 mm in AP diameter
C6-7 there is a broad-based central disc herniation with compression of the cervical cord. There is mild bilateral neural foraminal narrowing, right-greater-then-left. Uncovertebral hypertrophy is seen.
Central canal measures 9 mm AP diameter
C7-T1 there is broad-based left paracentral disc herniation. There is mild bilateral neural foraminal narrowing. Uncovertebral hypertrophy is seen. Canal stenosis is appreciated. Central canal measures 12 mm AP
T2 Hyperintense focus is seen within the cervical thoracic cord without evidence of enhancement. Findings likely represent syrinx.
This measures 2.9 cm in craniocaudad dimension and 1 mm transverse dimension. I was told years ago after a scan I had what they thought was one and I had to see a neurosurgeon who told me no. I know what a syrinx is and what it can do.
There is also straightening of the normal cervical lordosis.
When I tell you I get a feeling around my eyes it is subtle. It doesn't hurt. But I know it's there. And my Blood pressure goes up. When I leave my. house I take my bag with my BP stuff with me because I never know when the eye feeling will come. I recently saw my cardiologist and she is aware of the first eye feeling I had. I had others after that visit. My blood pressures are great except for when the eye feeling happens. I called my Regular Doctors office and spoke to the nurse line and told them I needed a referral to the neurosurgeon. Unfortunately I have to have the same one I had a couple of years ago.
If he tells me he can't help me I am gonna lose my stuff. I am not that kind of a person but what has been happening to me is not right. The differences between a Doctor (radiologist) and a Doctor you see who then reinterprets your MRI on disc is a whole different ballgame. Believe me I know. If there is just one person out there that has had feelings around the eye or eyes please let me know. Something caused the head pressure that was on Feb 17th that lasted 2 minutes or less with blurry vision. I have been to the ER and had scans and they didn't find anything. I wrote a lengthy note about the eye issues and had them give it to my Opthalmologist . I asked if he thought I would need to see him and if not just let me know. I did not need to see him. @rnlorena

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Jennifer, Volunteer Mentor | @jenniferhunter | 3 days ago

@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.

rnlorena | @rnlorena | 3 days ago

@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.

ichbindck | @ichbindck | 1 day ago

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

rnlorena | @rnlorena | 1 day ago

@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