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Small Nerve Fiber Neuropathy (Idiopathic) EYE ISSUES
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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@jenniferhunter Nothing. My appt. to the PA brought nothing. Nothing but aggravation. I tried getting an appt. at Mayo Jacksonville and the girl said it could be a YEAR in order to get an appt. I would love to go there. I am gonna check out Houston. There are When I went to see the PA I had my BP taken with an automatic machine. Those are flat out stupid they are not good. I take my with a manual cuff. The machine read 156/96. So when I got in a room I noticed my head pressure was increasing and I took my BP. It was 190/80. Right then the PA walked in and I told her I was taking a Clonidine. The PA thinks that my problem is caused by my blood pressure. Well as a nurse here is what I have to say. Out of 45 days of taking my blood pressures there were only 10 where my blood pressure was elevated. And some were not super high. So in that case I already know that my Dr. is not going to increase my blood pressure medication because if she did my BP would drop like a rock. There are days when I get up in the morning and take it and it is like 116/70 and I wait to retake my BP to see if it goes up enough to take my meds. I don't want to have my BP bottom out. Not good. I wanted a note in my record showing that I called and talked to one of the cardiology nurses and she told me what I already knew. The PA also suggested that I go back to the neurologist and see if he wants to do a spinal tap. I already saw him and he could have suggested it then. And no I don't want a spinal tap. The PA did say she would ask the Neurosurgeon to look at my discs. But I don't think anything will come of that. Communication Sucks. Sorry for that word. I left a note to my Eye Dr. describing exactly what change was going on with my eye. So I got a phone call on my cell phone with a message. It was totally wrong. I think it was for someone else. When a message is left on your phone it can be scrambled. The person that called me mentioned lab work and sinuses. That was nothing that I mentioned. So when I called about how the thing around my eye had changed his assistant said, "You need to keep using the eye drops for your Blepharospasm." First of all I have no Blepharospasm. And no one told me I did. And no one told me to use eye drops. I looked up Blepharospasm. It is a condition characterized by involuntary and forceful eyelid closure. It can occur as part of other neurological disorders. MY EYES are WIDE OPEN. I was getting a subtle feeling near my eye whichever one it decided to go to. And when that happened my BP was going up. Now the feelings are staying around my eyes. So I was worried about it because they are staying there. I thought it would be a good idea to get them checked. But now I have been labeled as having a Blepharospasm in my eye. I know for a fact a DOCTOR does not have to do a physical on you. Some still do. But I now wonder what other scrutiny they are under. Another neurosurgeon I had gone to suggested that he could inject three different discs. I asked him what he would use. I know they use a steroid but he also said he uses a numbing medication. I told him no because that is nothing but a stop gap. He raised his voice and said, "Medicare requires me to do that." Well if that were really true when I had my lumbar laminectomy why didn't my other Dr. say that? Besides a steroid can raise your Blood pressure. I happen to know all about that. I had to get a shot because of my back and my BP did go up. I would wake up and it was 140/90. I called a pharmacist and she gave me the facts about steroids and BP. I told her what kind and how much and she told me it could last for 5 weeks. Given the fact that my BP is going up because of my eye issues I don't need to help it any. Sorry if this seems rambling. As a retired nurse I am appalled at what the medical profession has become. Don't get me wrong. I am not surprised. I know there are still some great Drs. out there. I know that there are some doctors who will still assess their patients. When I spent two nights in the hospital the nurse who did my admission didn't touch me for assessment. She sat at a computer and asked me questions. @rnlorena
@rnlorena Are you able to go to Mayo in Rochester? There are many spine surgeons there, and a lot more than Mayo in Florida. You could request my surgeon, Dr. Fogelson. He would review your imaging which is at no charge prior to becoming a patient there. I agree with you on opting out of spine injections. I had an adverse reaction from that, and I think it may be related to an ingredient, perhaps polyethylene glycol that has been a problem for me in other instances. There are also hospitals in the Mayo Clinic Health System that may be easier to get into. Some have Mayo trained spine surgeons.
https://www.mayoclinichealthsystem.org/
This is Dr. Murphy's profile. She was being mentored by Dr. Fogelson when I was a patient and she saw me at discharge. https://www.mayoclinichealthsystem.org/providers/meghan-murphy-md
I do think you need another opinion from a good surgeon. It doesn't sound like they want to help you. If you do decide to apply for Rochester, write a letter describing your symptoms and prior spine history to send with your application.
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2 Reactions@jenniferhunter I was thinking about Mayo Rochester. I won't fly right now due to airport issues. Too many things with that. I can drive it. It's 1176 miles from my house to Mayo. I can do most of it in one day. I drove to Michigan once in the lower part of the state and made it before dark. I am not hardly having any pain issues though. Just intermittent pains in my head that come and go. I had pain across my upper back once. I did have some pain coming down my left arm once. The thing that is really bothersome is what is going on with the feelings around my eyes. It is not in my eyes. My blood pressure goes up because of it. I am gonna get my stuff together and see what I can do. Thank you for your support I really appreciate it. I am just appalled by the things I am hearing and seeing in the medical field. I will let you know what happens. @rnlorena
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1 Reaction@rnlorena You may use this link to request an appointment for any Mayo campus. http://mayocl.in/1mtmR63
When they call you back, at that time, you may request your imaging and records be sent to Dr. Fogelson. Make sure to write a letter about symptoms, but leave out a lot of your dissatisfaction. Just saying that your doctors can't figure it out is enough, and with a history of records, they will understand that you are not being helped. Keep it simple and to the point so you don't bury the important details. When you get into Mayo, the doctor that accepts you is like a quarterback, and will refer you to other departments and specialists as needed to understand all the issues. It's also possible you would be referred to another spine specialist by Dr. Fogelson if that is in your best interest. There may be a long wait to see him as he is much in demand for deformity surgery and he goes to spine conferences. That is a long drive. I hope you can bring someone with you or break that into a few days for travel.
Take your scans to a Neurosurgeon. Unless you are allergic to iodine always try to get them done with contrast.
I had an AVM rupture when I was 16. I thank God I was living in Houston, TX at the time and my neurosurgeon knew what he was doing.
Don't give up, just find a good Neurosurgeon.
Hello,
Your post resonates with me in a few ways. I have intracranial hypertension. It was hard for doctors to diagnose. I live in a place with limited specialty care. I feel for you. Eyes are so crucial. I want to commend you for what you do to advocate for yourself. I know how much energy it takes. Have you had any sort of eye exam locally even screening? I have a friend who made it to Mayo in Rochester. He got a great team. He had his appointments organized and was treated with care.
@9yearspast So far I have had my eyes checked twice and my vision is okay. I now have dry eyes though. I sent records but Mayo turned me down. The doctors I have seen don’t know anything. I did some research and decided I wanted to see a vascular surgeon near me. I called them and asked for an appt and they said I had to get a referral. When I told them I had Medicare and didn’t need one they said it was office based. So I got the referral and sent my records. I waited awhile then called and asked how long before I would get an appt. Then they told me they would look at my record and decide what Dr. I should see. I told the person I talked to I wanted to see a vascular neurologist that I had already saw my neurologist and he couldn’t help me. I also asked her to write down the things that I found in my chart that I am getting removed. I don’t want that to be looked at and they think something else. The girl I talked to said she didn’t know medical terminology. I said I wanted to see a vascular neurologist. She then said the Dr. I picked was not a vascular surgeon that he treated stroke patients. It’s written under his name. I sometimes wonder why I bother. vascular/stroke. I am keeping a journal of what is happening daily. I get Head pressure not a headache. It is in the lower back of my head above my neck. I also get intermittent head pains. My upper spine has bulging discs and my neck has stenosis and a lot of other things. But hey unless I have pain going down both arms they won’t touch my neck. Could it be my neck? Head pressure is daily. Two doctors I saw said they think my blood pressure is causing it. I saw my cardiologist last week. I took papers that I have my BP and heart rate written for many weeks. I also write next to the B/P if I had head pressure. I pointed out one B/P that was as low as 120/76 with head pressure. I have others that were normal. It is not my BP. I read my doctors written reports about my office visit. They write Headaches not head pressure. One wrote I had pressure in my eyes. Never said that. They could not find any cause of the Head pressure and blurry vision on scans. So instead off the Dr just saying that he said, “for lack of a better term we’re gonna call this a TIA. So I was labeled. I went to medical records to get mine. I had them sent to the Dr I want to see. I read my records from the hospital and ask that they correct the following. I wanted the doctors statement gone. I saw where they said the head pressure lasted 30 seconds when I told them it was about two minutes. They said I had shortness of breath and I never had that. They said I was nauseated.ed but didn’t throw up. I asked that those things be removed. As I told the lady in medical records she was saying who said that. Apparently way more than one person wrote stuff. They got rid of their scribes so there you go. I am looking at Houston for a Dr. I did talk to someone who has worked with a neurologist for 10 years. She said he has seen patients for head pressure and blurry vision. She couldn’t continue our conversation because she had to get back to work with the Dr. He has no openings till next year. I can’t wait that long. I fully understand that they can be booked up. I am going into my sixth month since this happened. I did think back to the day I was discharged. In the real world one would think that if they couldn’t find anything they would send you to someone else. As a retired RN I am appalled at the things I am seeing and hearing. I am not done yet! @rnlorena
I am having vision problems in one of my eyes as well...and it has been like that for 4 years now. You are not alone. I have not been able to determine the cause either. I am more inclined to believe mine stems from my nld-sfn with autonomic dysfunction. In my situation finding a medical professional to treat my condition long term is the hurdle I have to cross. I am fairly certain in my case that my autonomic dysfunction is the root cause but getting specific testing becomes a hurdle when you can't find anyone to help with care after. I would suggest reading some of the latest NIH papers published. They have done some on small fiber neuropathy and eye disorders. Since covid, more studies have been done on small fiber neuropathy. Just a suggestion.
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1 Reaction@fluegelb
Thank you for your reply but I did finally get help. I was diagnosed with Small Nerve Fiber Neuropathy non length dependent in 2021. I woke up two days after I retired and I had pin pricks from head to toe and in my eyes going off 24/7. It took three months to see a neurologist and I finally got diagnosed. I live in the panhandle of Florida but I spent 6 months here looking for help with the head pressure that I had daily and got absolutely no where. I finally advocated for myself. This is what I did. I had family that lived in Houston and I have been there many times to visit. My sister told me about the Hospitals and the Doctors that they had. So I started looking at Doctors in Houston. I went to my neurologist that diagnosed me with Small Nerve Fiber Neuropathy and he didn't help me at all. I looked at Neurologists in Houston and I was surprised to see a Neuro-Opthalmologist. I had never heard of that. I was having head pressure every day not a headache. And I also had intermittent head pains. Then I noticed a weird feeling come near my right eye and It took me a bit to come up with a term for it. I called it a subtle feeling. Then a bit later it came near my left eye. Then it was surrounding my eyes. I gave up looking here where I lived and when I looked at Houston I found two Doctors. I saw a Neurologist who specialized in headaches so I got an appt with him. I next found the Neuro-Opthalmologist and I actually told the office person how much I needed to see this Dr. ASAP. I went to Houston and I was out shopping with my brother and I got a call and I saw the Neurologist in the am and the Neuro-Opthalmologist in the afternoon. Boy was she great. She diagnosed me with Occipital Neuralgia and I have dry eyes. I looked it up and the Small Nerve Fiber can cause Occipital Neuralgia. @fluegelb I will make a suggestion to you. I don't know where you live but I would suggest trying a Neuro-Opthalmologist. You can always tell them your diagnosis and see if they can help you. I know they have one in Mobile Alabama and I got an appt. with her December 1st. I did drive 1100 miles round trip to Houston but I have done it many times to visit with my siblings. So it was no big deal and it was so worth every mile. I will tell you that what I had did a number on me when I couldn't get help. It took me awhile to come back from the months I spent trying to find out what was wrong with me. I sincerely hope you find someone to help you. If you get help I would sure love to hear how you made out. @rnlorena
@rnlorena I am glad you were able to get the answers you needed. I thought that was the case given what I was reading about on the NIH website. I live in Missouri and have unknowingly had nld-sfn since childhood. The science has come a long way since long covid has increased the number of individuals diagnosed with sfn. Your story is so beneficial to so many and I appreciate it. I just wanted to add my situation to it do to the length of time I have been dealing with it along with the possibility it could be linked to sfn. I would like to add that in my situation it is the visual acuity that is the problem. When in an eye exam, I am tested and it shows that my eyes utilize a certain power of contact.... but when I get home and wear them, I have trouble seeing. I have also had dry eye along with dry mouth and I can only wear daily contacts, so this removes the possibility of protein buildup on them. I have been my own advocate as well and understand the difficulty finding medical professionals that have knowledge of this. I was doing research when I came across your post and again, I am grateful to you for posting your dilemma and conclusion. I just want anyone going through something similar to understand that it may not be a life-threatening situation since I have been dealing with it for a very long time and it could be due to sfn. The NIH does have articles published as recently as 2020 that talk about the link between sfn and eye problems so anyone who is in need of proven scientific data can start there. Thank you for sharing.