Has anyone gone to Mayo Clinic re: dry eye or eye pain?

[Lucy]

I have severe eye pain in one eye. I have dry eyes in both with zero schirmers. My pain is nerve related and I believe, trigeminal neuralgia. My longtime ophthalmologist who did lasik and cataract surgery on me (I know) and has treated me in the 9 year timeframe since cannot come to any conclusions. (NO, it didn't take me all this time to figure it out.) I have been to U of M just recently and am doing autologous serum eye drops, which I think will not end with any concrete results.

I saw my doc today and we talked about me going to another ophth-neurologist. One who may be more versed than the other one or two I've seen. This would be in a larger city, my state capital. We also talked about Mayo Clinic and we both were unsure of their status in treating nerve pain in the eye.

I know many people on here have been to some pretty top docs...Foulkes...Latkany....etc. My problem goes beyond the dry eye problem and we're looking at neurological stuff. I'm having an MRI and will compare with two others I've had earlier in the 9 year stretch. If anyone knows if Mayo has good ophth-neuro treatment, or any other place, please let me know. Lucy

[lasiksurvivor]

Seeing Dr Kaufman

I'm seeing Dr. Kaufman at the U of M and am very happy with him. Mayo does a great job with cancer but I have not heard of anyone who has gone there for dry eye.

[Lucy]

I'm thinking you mean U of Minnesota? I've been to U of M(ichigan) several times. What are you seeing the Dr. K for? Mostly dry eyes, or painful eyes. Maybe you can PM me if you think you have info that will help. I notice you live in Minn. and I live in Mich. Therefore, the confusion over U of M. Lucy

[NYer]

I don't know what they can do for dry eyes but Mayo is far from just a cancer center. You should check out their web site.

[lasiksurvivor]

es you are right Nyer

Sorry if my previous post caused confusion and thank NYer for setting everything straight. I mainly think of Mayo for Cancer because that't where my dad went for throat surgery to remove his cancer. It was a traumatic experience for him and us as he lost his voicebox and got a hole in his neck to breath through. Can't think of much else when Mayo is mentioned or when I drive through the town on business trips. They did a fantastic job on the surgery and follow-up. If they do eyes and you need specialist help, I'd go there!

[lasiksurvivor]

Mass confusion!

I'm thinking you mean U of Minnesota? I've been to U of M(ichigan) several times. What are you seeing the Dr. K for? Mostly dry eyes, or painful eyes. Maybe you can PM me if you think you have info that will help. I notice you live in Minn. and I live in Mich. Therefore, the confusion over U of M. Lucy

Sorry we got our U of Ms mixed up! I mainly have dry eye with no pain which I think may explain why I have dry eye because I have very little feeling in them. Restasis has helped. Dr. Janice Jurkus is at the Illinois Eye Institute in Chicago closer to MI and is a fantastic dry eye specialist. She also is a tremendously caring person.

[Silverlady]

Did go to Mayo

Lucy,
I did go to Mayo for diagnosis of all over nerve pain. I was told that I had small fiber sensory neuropathy caused by Sjogren's Syndrome. Sjogren's can attack the nervous system. It has profoundly affected my eyes. But mine is more of a tingling, prickly pain than the description you have described (that I remember). When the Salagen wears off I sometimes get pronounced nerve pain in my eyes. Salagen does help me. But I still suffer the symptoms that a lot of you describe. Mayo's eye doctor's did look at and examine my eyes. But at the time it was more of a dryness issue and I was told that there was no silver bullet.

I'm worried that you have a combination of issues and perhaps being looked at by Mayo's doctors would be of help to you. Have you contacted Mike (sjogren's forum). There is an address there and perhaps he could advise of doctor's at Mayo.

Good luck,
Billye

[YGB]

My problem goes beyond the dry eye problem and we're looking at neurological stuff. I'm having an MRI and will compare with two others I've had earlier in the 9 year stretch. If anyone knows if Mayo has good ophth-neuro treatment, or any other place, please let me know.

Hi Lucy - sorry to hear that your eye pain has not settled down. Here's been my experience in the neuro. area ...

I went to see a neuro-oph. at UNC-Chapel Hill and was disappointed. I was somewhat disappointed with the physician but also by the limitation of what a neuro-oph. does. I then went to see a neurologist and have had better success with him. In the end, it is likely that regardless of what type of neuro. physician you see, the treatment for the pain will likely be medication used for face pain.

In my case, I've been on neurontin, lyrica, and tegretol. The neurontin and lyrica relieved the pain to some degree but then the efficacy of the drug wore off (i.e. the pain came back in full force). The tegretol calms the pain on some days to a level wear it is like background pain and not as intense. Some days are better than others. Of course, this is all based on my experience.

Perhaps rather than going to just the neuro-oph., you might be better off going to a place like the Mayo pain clinic and then also seeing the neuro-oph. if this is an option.

[Lucy]

I do have a combination of problems. Billye, my rheumatologist said I do have small fibre neuropathy. From Sjogrens, I have these pins and needles all over my body. This is annoying, but not enough to put me to bed for days. The pain in the eye is. It's somehow a combination of the lasiked eye being damaged during surgery and then Sjogrens moving in at a later time and things just keep getting worse. It's the trigeminal nerve that's been damaged or irritated.

I've been on Tegretol and Neurontin a few years back. The Neurontin made my eyes terribly dry and the Tegretol just was a bad med for me. I'm on Lyrica now on a trial basis--too soon to know. I know I'm able to take it, but not sure of what help I will get. I think it takes time to work these things out.

I am having a MRI of my brain and orbital (eye) area next week. This will compare with two I had earlier in the past 9 years. I'm going to pursue the neuro-ophth whether here or in a larger venue. YGB, I'm disappointed at your experience with the neuro-ophth's. If someone has not known the pain of trigeminal neuralgia, they just can't understand. Even specialized docs don't understand a lot of this. Lucy

[gz9gjg]

Hello Phyllis,

Don't forget that Mayo has a clinic in Scottsdale, AZ also - I would bet they see more dry eye issues out here!

Regards,

Lynne
Phoenix, AZ