[snelsen]

#1062915

Susan, read my note first, then, in direct answer to your question if increased eye pressure related to TED, yes, it can be due to crowding in the orbit, (Glaucoma is associated with increased eye pressure, but not related to TED at all.) IF the eye drops your doc gave you were prednisone eye drops, they were given to reduce swelling in your eye, that is good. I do hope that you have more opportunity to explore anything having to do with laser treatment ,a nd get a second opinion on that subject. At this moment, that worries me, without you having a good explanation, and perhaps a second opinion. Second opinions are good things.

Susan, sorry I did not get back to you sooner. My server was down. A lot of what I have to say is dependent on what you mean when you say "eyesight not very good." see the questions below at end of email.
Here is my experience,and here are my thoughts. Of course it is good that you are going to an eye doctor. But would you consider asking for a referral to a NEURO-OPHTHAMOLOGIST? Please do this. I would love to have you see this doc as soon as possible. Maybe even the same day. During my TED experience, I was seen by a neuro-op doc very frequently. He has sophisticated machines and other aids to check vision in more precise methods than a regular eye doc. ANd it is critical to do so. As we progress with TED, it gets crowded in the orbit (opening in the skull) where your eye is. With TED, the muscles fibrose, enlarge, and increased orbital fat develops, and it gets CROWDED! This creates pressure, that can make our eyes bulge out, but ALSO press on the optic nerve. This is very serious, for if the pressure is not relieved on the optic nerve, it is possible to lose sight permanently. This was my experience, and I had to have (and was happy to have) an OD orbital decomression to relieve the pressure on my optic nerve, which is called orbital neuropathy.

I want to emphasize that this is an entirely different subject than glaucoma, which does have increased IOP (intra-ocular pressure) and the treatment is vastly different. (I tried to make the last sentence in BOLD and it does not work.)
Remember that I am just someone who has had TED. NOt a medical profession in TED.
So all I say is from my very own recent experience with TED. Plus a fair degree of knowledge which I have learned along the way. I WAS followed carefully by a neuro-eye doc.

Testing was complex and technical. Visual fields were always tested by a machine, not a wiggly finger. There were tests I took to identify colors, especially. My visual fields showed that I had decreased vision which was getting worse (in other words, not full vision, I had "blind spots at the top of my vision and to the extreme left. WAs I aware of this? Not really. Another sign that there is compression of the optic nerve is if the color red is less sharp. Also, if you look at tree branches and leaves, and they are less distinct, that is concerning.

If you would like to take this post with you to your doc for your next appointment, I think that might be a good idea. At least, for a reference for you, if not to show to him. If my concern is unwarranted, all the better!
Shirley

[snelsen]

#1062916

I want to be very clear that because of the color red being less distinct, the decreased visual fields by machine testing, and other testing in the neuro-op docs office, I had prednisone (oral) to reduce the swelling, was check a couple times a week (meaning optic nerve was checked.( I then had an emergent orbital decompression, to save my vision. It made more room in the orbit, relieved the pressure on the optic nerve,and saved my decreasing vision. If pressure on the optic nerve increases, and remains for too long, vision is lost forever. Again, this is MY situation, but certainly an experience for you to be aware of.
Shirley

[susandemarco]

#1018144

Hi,
Has anyone out there have TED, and then developed high eye pressure. I went to my eye doc last week,
and while checking my eyes realized that the pressure in my eyes were very high. He told me that this
was totally unrelated to TED. He had to lower the pressure immediately, and first tried drops, and after two
application, it lowered it by half. He told me that this was only temporary and wanted to do a laser procedure, which
he did. I now have to go back for a followup on Friday. My eyesight has not been very good, and now I am not
sure if is becdause of TED or the high eye pressure.

I would appreciate it if anyone has experienced this same problem, and if so, how it turned out.
Thanks,
Susan

[susandemarco]

#1062917

Hi Shirley,
He has done two visual field tests with a machine. They both came back fine. He doees the color test with a book that
looks like little squares with numbers in different colores. I am going back to him tomorrow morning, and I will ask
him questions. He told me the eye pressure that he tested me for was totally unrelated to TED. I have looked for
a neuro-ophthamologist in my area, but so far I cannot find one.

This whole ordeal is really making me very nervous. I will let you know how I make out tomorrow.

Thanks again,
Susan

[snelsen]

#1062918

Susan, I am feeling a lot better and less concerned, knowing your doc has been doing these exams. I was super worried @ your optic nerve, if none of these baselines or tests had been done. He sounds like a good eye doc. When you see him on Friday, ask him to write down his diagnosis of the cause of the increased eye pressure if it is not TED. The laser concept is something I do not know anything about. In any event, I would ask a lot of questions about laser treatment and TED, if they are compatible.
I hope that you IOP is WAY down on Friday and this can be a non-problem. Ask him what he is considering when he has made his diagnosis. And do ask him to look at your optic nerves in his exam, tell you all that he can.
Incidentally I think we discussed this before, but do sign a medical release of information form, have all dictated note,s labs and test results, including copies of your visual fields, sent to your home. It is your right to have your own records, and immensely helpful to look at them at home. It is terribly hard to absorb verbal information in a short visit.

Sure do look forward to hearing from you after your visit on Friday!
Shirley

[bodidiang]

#1062919

I have had TED for 2 years now and have been seeing a neuro-opthalmologist for this. I am a suspect for Glaucoma because of the high pressure and the fact I had a grandmother who did have Glaucoma. My high pressure readings have been mostly 25 – 29 . I saw the dr on Thursday and my pressure in my right eye dropped to 15 and the left 24 which is the worse of the 2 eyes. He was so glad to see the pressure drop and said it means my TED is beginning a milder form now.
Hope this info. helps and your pressure readings drop.
Diane

[susandemarco]

#1062920

Hi Diane,
Did your doctor put you on drops to lower your eye pressure. My doctor did laser procedure and now put me on
two different drops. It was 30 in each eye last week and then after being on the drops for one week and after the
laser it went down to 27 in each eye. He said that I have gloucoma. He also told me that it was not related to the
TED. Does your doctor have you on any medication? And did he say the high pressure was due to TED.
Thanks for any information you could give me.
Susan

[snelsen]

#1062921

Hi Susan, now that you have a diagnosis of glaucoma, the treatment your eye doctor is prescribing makes perfect sense.
YOu can check with him again, but GLAUCOMA incidence is unrelated to TED.
However, transient, or short term IOP (increased intraocular pressure,) can be related to TED, and that is why they check for it.
So, glaucoma IS increased pressure in your eyes, but it does not follow that having increased pressure in your eyes means you have glaucoma. So it sounds like your eye doc is telling you that it is a coincidence, and that you do have glaucoma.
There is a familial tendency in families. People who have glaucoma generally take eye drops to keep the pressure down, and that is a long term thing. Again, it sounds like you learned a lot last Friday about what you have. Ask your eye doc to explain the two differences the next time you see him, or call him. It is important that the pressure is relieved, and the eye drops will help do that.
Shirley

[susandemarco]

#1062922

Hi Shirley,
He did say that it was glaucoma, and that is why he gave me the drops. However, I did wonder how he new it
was not related to the TED. I have to go back in two weeks and I am going to ask him how he determined that the
pressure was high due to glaucoma, and not the TED.
Thank you again for all of your insightful information. It is such a pleasure talking to people who understand what
we are going through.

And thank you Diane for your story. It helps us all to get through this ordeal. It will only be one year in June since I
started with this. I guess I still have a ways to go before I get out of this hot phase. Please keep me informed of
your progress with your high eye pressure and coming to and end with TED.
Susan

[bodidiang]

#1062923

Hi Susan,
I was put on Restasis for dry eyes and Lotemax a steroid type med when I needed it. I am now on just Optive moisturizing drops. I couldn’t stand the pain in my eyes when I woke every day especially my left eye until I got drops in. I have had numerous field vision tests and other eye tests done. I was told I do not have Glaucoma. I always had higher than normal pressure in my eyes but not as high as it has been since getting TED. I still suffer daily from TED but it is just not as bad as it was. My eyes do not look like they used to before TED and I don’t think they ever will. My eye lids still swell and guess my eyes do also. It was the best thing I ever did was to see the neuro opthalmologist for treatment. Before I saw him I was told that I had conjunctivitus or pink eye and was given steroid drops. This went on for about 6 months or more. So a good Neuro-opthalmologist is critical with TED I think. Hope this helps you and if you have any questions please let me know.
Good luck to you.
Diane

[susandemarco]

#1062924

Hi Diane, the doctor I am going to deals with graves disease patients who have TED. He is located in NYC at the
Harkness Eye Institute in Columbian Presbyterian Hosp. He really seems to know his stuff, however, I do not
think he is neuro-ophthamologist. He does do the visual field tests and all the other tests that go along with
this disease. I do have confidendce in him.

My eyes are also very swollen on the lids and underneath. It makes me sad to hear that you do not think that your
eyes will ever look the same. Did your doctor say that, or that there are procedures that can fix the cosmetic
problem. One of the ladies on this board will be having the procedure to fix the upper lid in about one week.
I am very excited to hear how it turns out. Hopefully, with the Grace of God we will all get back to some normalcy in
our lives. I am a little behind you, so I will follow your progress.

Thank you for all your input. All of the people on this board are very informative. At least you do not feel as though
you are going through this thing alone. Please keep me informed.
Susan

[snelsen]

#1062925

Hi Diane, to echo Susan’s question, has your neuro-op doc discussed with you getting referrals for correction of your double vision, and for having eyelid surgery? These procedures are for when you are out of the active phase of TED. I have seen VAST improvements in eye appearance and comfort after eyelid surgery. Pretty soon you’ll be about to read about mine.

Hi Susan, yes, my upper lid surgery is 2/1. I will post to the board very frequently, so you and others can hear how it goes.
I already know that with any eye surgery, it has made a huge positive difference to have the head of the bed elevated at least 45 degrees of not more. I have followed this each time, and almost no bruising evidence of the procedures. Even the OD!
I elevate the head of bed on blocks, then put pillows between the mattress and box springs. After there is complete healing,(3 months or so) I will have the lower lid surgery. I have "lid lag" on my lower lids, and you can see the inside of my lower lids.
I’ve seen the results on other folks with great improvement.

I already have a post going that is titled EYELID SURGERY ( think that is the title) and from now on I will post under that title for this surgery.
Shirley

[Kimberly]

#1062926

Shirley – I hope that all goes fabulous for you on 2/1! I know that this has been a long journey and it will be a HUGE relief to get this surgery behind you. Definitely keep us posted!

[Author]

Posts