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  • ocular surface neuropathy is being confused with dry eye problems

    according to doctors at the boston foundation for sight, patients who's eye pain has not improved after treating dry eye problems may have a nerve disorder that is causing the pain. They diagnosed me with this after taking microscopic images of the nerves in my eyes, and several other tests. The doctors told me my tear film is not at top level but it is not bad enough to cause all this pain I'm having. I had suspected this beforehand.

    Ive been treated for bleph, ocular rosacea, MGD, and etc and the secretions and eyelids got better but the pain didnt correlate. My eyelid health/ lipid production keeps deteriorating after I get them in better shape. The cause of this may be from the nerve damage in the eye surface. The eyelid secretion systems seem to shut down after nerve damage on the eye. This may mean that MGD, BLEPHARITIS, DRY EYE may be a SYMPTOM of neuropathy not a cause in some people. This would also explain post-lasik dry eye/ bleph mgd. The problem on the surface of the eye causing symptoms of MGD, bleph etc.

    I was given electric current therapy at boston foundation for sight, and it completely erased the pain during the procedure and it reduced the amount of pain after for a certain amount of time. Was given the task of finding a neurologist that specialized in pain in my home state to continue treatment that includes neurological pain management drugs and electric current therapy.

    (Electric current therapy or Transcutaneous electrical nerve stimulation relieves pain by placing electrodes over major source nerves that are carrying the pain signals. As I have experienced, personally, this therapy works for a time even after the electrodes are taken off. Some people have reported long term relief for up to a year. here is a wikipedia article on the subject http://en.wikipedia.org/wiki/Transcu...ve_stimulation

    Dr. Rosenthal, the founder of the Boston Foundation for Sight and voted as 2011-2012. Best Doctors in America, is currently making progress in making doctors around the country more aware and more knowledgeable in treating patients who come in with eye pain. He is, in my opinion, the most sympathetic doctor in opthomology and perhaps one of the most educated and accomplished. Dr. Rosenthal and doctors in his foundation treat and do research studies on patients with severe eye pain in Boston, Ma. They are a nonprofit organization and thus are not there to make money from drug companies or getting patients in and out quickly. I was treated, studied, and participated in experimental therapy daily for two weeks for no charge.

    My advice for those who have no improvement after trying everything for dry eye is to go to #1 boston foundation for sight (total free care) get a better diagnosis, try thier pain therapy, try thier scleral lenses. and #2 a pain specialist neurologist to treat your chronic pain with medicines- make sure its a neurologist.
    Keep in touch with boston foundation for sight. They are one of the top organizations that are researching and developing new ideas and making new ground on eye pain and diseases.

    Everyone is welcome to contact me just to chat, for emotional support, or advice. I've been to some of the top doctors all over the country and have tried all the typical things plus IPL in houston texas with Dr yee, and in memphis tenesee with Dr toyos, sclerals and electric nerve stimulation in Boston Massechusetts I'm going to stop by New York soon and talk with the top doctors there.
    Last edited by socratese; 10-Apr-2011, 19:54. Reason: better title

  • #2
    Neurosurgery for trigeminal neuralgia as part of my dry eye pain, and symptoms

    Hi Socratese,
    I was really interested by your new information. I have had so many complications as a result of a "gone-bad" neurosurgery for trigeminal neuralgia, that I'm not sure what to do at this point. My symptoms include severe DES, EBMD bilaterally (not result of surgery), RCEs, MGD, insufficient tear production secondary to damage to nerves innervating lacrimal glands, a partially anesthetized eyeball, constant feeling of foreign body in eye...I did initially have a punctal plug put in my lower left tear duct of my left eye, which is the more symptomatic one. It irritated the sclera from the beginning, and after 5 mos. I could no longer tolerate it - was causing actual pain by then. My eye has been much drier since the plug was removed. I am considering cautery of the lower left tear duct. I also get excruciating pain in the cold, and in any wind, hot or cold, in the eye (as well as the left half of my face, which has extensive nerve damage from the neurosurgery). I use Muro 128 drops x4/day, Muro ointment at nite. Have now subbed Sochlor for Muro w/permission from my corneal specialist. In between I use Genteal gel drops. I also must wear 7 eye air shield glasses whenever I'm awake: at computer, at work, at home, outside. I continue to suffer from severe dry eye and discomfort.

    Anyhow, I am seriously considering making another appt w/my corneal specialist to decide re: cautery for some of these problems vs. ligation of tear ducts, etc. Any thoughts re: this?

    Maria

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    • #3
      Id probably do cautery to help bathe/protect eye or try diff plugs that may be more comfortable. Then i'd go see a neuro pain doc if you haven't already. I figured you would have since you had trigeminal neuralgia. Actually, though, I think the main thing would be to associate yourself, meet, get rooted in with the top doctors in the country neurologists, opthomologists or whatever else.

      You are a very very special case. If you are not in the care, study, hands of leading specialists thats where you need to go. I would email/consult correspond with the top 5 leading doctors in the continent. The real pros who do research, make developments, make inventions should be interested in taking you in under their wing.

      Ive been to quite a few opthomology care facilities and doctors but I can only reccomend two right now that would be worth going to.

      #1 boston foundation for sight. They offer the free pain treatment therapy But, also here you will find very highly motivated doctors/ researchers who are under dr.Rosenthal. private message me Ill give you his personal email i cant post here.

      #2 dr latkany in New york. I don't know anything about him other than he is at the forefront of eye issues on this website at least. I may go see him in a couple weeks just for another opinion.

      thats all I know of thats worth the trouble for now. Also you can try IPL which will decrease MGD, decrease general eyelid inflammation and help secretions some. dr toyos in memphis or dr yee in houston is all i know who does this well. there are other places that do this now. It's only to help some, but who knows it could help you more than some. if you have the money/ insurance that covers it and you're close enough to a place that does it.

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      • #4
        Thats very interesting, I had sclerals fitted at BFS a few years ago but couldn't tolerate the lenses sitting on my eyes. Great facility and doctors there.

        Can you describe how the electric current therapy is done? How often do you need or plan to have it done going forward?

        Also what type of neurological drugs do you need to take, any side effects?

        thanks

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        • #5
          wires are attached to your face around the eyes. slight stinging is felt.
          drugs are not necessary. you would do it for a week or two every day. some people report relief for several months afterward. I only felt relief for a week after.

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          • #6
            I think you are on the right track with this.....

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            • #7
              for more information on neuropathy, neuropathic pain here are some things to read.

              Neuropathy and neuropathic pain usually occurs from diabetes or from other diseases that causes injury to nerves.

              From some polls and threads that I have created and viewed on this website and from what I have gathered from other sources, possible causes of neuropathy and neuropathic pain of the eye surface is as follows: rosacea(just a theory of mine that this complex disease could spread to eye surface capularies?)
              , corneal/scleral exposure to elements or chemicals, LASIK SURGERY, and other scleral/corneal surgeries and or injuries.

              from Wikipedia: "Neuropathic pain may arise as a consequence of a lesion or disease affecting the somatosensory system." "Aside from diabetes (see diabetic neuropathy) and other metabolic conditions, the common causes of painful peripheral neuropathies are herpes zoster infection, HIV-related neuropathies, nutritional deficiencies, toxins, remote manifestations of malignancies, genetic, and immune mediated disorders or physical trauma to a nerve trunk.
              THIS PART IS IMPORTANT!!!!!!!!!!!!!!!!!!
              "Under normal circumstances, pain sensations are carried by unmyelinated and thinly myelinated nerve fibers, designated C-fibers and A-delta fibers, respectively. After a peripheral nerve lesion, aberrant regeneration may occur. Neurons become unusually sensitive and develop spontaneous pathological activity, abnormal excitability, and heightened sensitivity to chemical, thermal and mechanical stimuli. This phenomenon is called "peripheral sensitization".

              http://en.wikipedia.org/wiki/Neuropathic_pain
              Last edited by socratese; 30-Apr-2011, 10:08.

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              • #8
                so a pain specialist neurologist could diagnose you as to wether you have this or not? I think i might have this... my biggest problem along with the dry eye is pain, which i get whenever I have to focus my eyes for anythng(reading, watching tv/movie, even looking at a person during a conversation for too long hurts.) They aslo hurt alot where its very cold windy (inside with A/C or outside climate.)
                could thyroid disease (like hypo/hyperthyroidism) cause it?
                miserable in Miami...

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                • #9
                  Your symptoms sound very simular to mine and other people who have been diagnosed with neuropathy. Basically your eyes are 5x more sensitive than normal persons eyes, and may be suffering a decrease in eye secretions and gland health due to the malfunctioning nerves. And yes, I have read in multiple places in the past that thyroid problems can cause eye pain.

                  There are not many doctors who are aware or educated of the possibility of neuropathy on the eye surface nerves. Dr. Rosenthal in Boston is able to diagnose this with trials and with a machine that takes images of the nerves on your cornea. I will talk with him soon and maybe find out other doctors that he has educated about this in other parts of the country.

                  basically, 99% of doctors in the world really don't know whats wrong with us for sure and only a handful are able to identify, research and discover ALL of the many different causes of chronic eye pain. This is because medical science is in the dark ages when it comes to this.

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                  • #10
                    Hypothyroid eye disease (and swelling/oedema) isn't normally associated with any pain; the inflammation/swelling associated with Graves disease can be. Both types of thyroid eye disease should be easily diagnosed with thyroid antibody tests. Ocular lupus can also cause pain in different parts of the the eye, but is harder to detect (see my post on lupus). Inflammation caused by non-autoimmune dry eye can also be very painful, and isn't necessarily indicative of underlying condition of course, but sustained or increasing ocular discomfort, unrelieved after trying all of the usual interventions should be investigated seriously.

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                    • #11
                      Dr. Rosenthal in Boston is able to diagnose this with trials and with a machine that takes images of the nerves on your cornea. I will talk with him soon and maybe find out other doctors that he has educated about this in other parts of the country.
                      if you do talk to him again please let me know what you find out especially the other doctors who may be knowledgable about this. Im still treating with the usual procedures for now but its been a year & Ive seen no improvement.


                      I know thyroid & autoimmune diseases can contribute to dry eye but what worries me is if once your thyroid condition causes the dry eye has the damage been done? so that even after you have your thyroid /autoimmune disease under control will you still have to deal with dry eye due to the damage to the nerves the disease has caused?
                      miserable in Miami...

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                      • #12
                        I do receive a newsletter from BFS but it's all about the sclera lenses. Dr. Rosenthal did diagnose me with corneal neuralgia but I was afraid to try 'the scrambler' (he had just gotten it the week before). I recently joined another group with eye pain that sounds like ours 'living with TN', Atypical neuralgia/eye pain group. It certainly does sound like our pain could very well be related to the trigeminal nerve. Do you know if Dr. Rosenthal is considering this? I am in contact with 1 other woman who saw Dr. Rosenthal and we are both unhappy that he doesn't seem to share any information with patients in regards to what's working, what's not in regards to corneal neuralgia. Since you're still in contact is there any new information? Thank you

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                        • #13
                          Ocular surface neuropathy and sclerals

                          Has anyone who was diagnosed with ocular surface neuropathy tried sclerals? I was thinking initially they'd help, since my DES is severe. But given that I have the neuropathy, I'm wondering if that would just make my eye pain worse, that I probably couldn't tolerate anything sitting on the cornea.

                          Maria

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                          • #14
                            I tried the sclera lenses but the edges felt like tiny razor blades in my eyes. I just couldn't tolerate them.

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                            • #15
                              I was diagnosed with rosacea about 10 years ago and it got very bad. My face constantly felt like pins stabbing it. I had to sleep with the windows open and a fan blowing on my face. Then in Nov 04 thru Feb 05 I had Intense Pulsed Light therapy on my face. It's almost like the ILP curing my face forced the rosacea into my eyes because on March 1, 2005 my neuralgia started suddenly. I had no dry eye, MGD or anything wrong with my eyes 1 year earlier at my eye exam. Of course, when the neuralgia started I rushed to my eye doctor and she told me I had severe dry eye, and MGD caused by ocular rosacea. The meds, warm compresses didn't do a thing to improve my pain. It took 3 months before the pain forced my hospitalization where a neuroligist suggested some form of nerve related pain and put me on gabapentin. I saw 13 eye doctors in all who simply told me I had severe dry eye and MGD and a quite a few told me the pain was all in my head. Then I finally saw Dr. Rosenthal who diagnosed me with corneal neuralgia. I do find it interesting that my severe dry eye started when the neuralgia began.

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