[katherinesc]

#1058923

I was dx with Graves Oct. 2008 and decided to start nursing school in October 2010. Initially with the eye disease I had the steroid and radiation treatments and so, here I am in 2012 considering orbital decompression and have some questions to ask anyone that can help me to answer a few questions. Before I ask, I just want to say THANK YOU to the facilitators of this site. We are so very LUCKY to have this network of people that suffer from this horrific disease from all over the world with compassion, understanding and knowledge to share.

First of all in nursing school I have been doing A LOT of reading the past 12+ months. I’ve been able to manage my vision and can usually get 12 hrs. of vision (before the muscles get tired and I have DOUBLE VISION) and have been “working around” this with my studies. Unfortunately I’ve been patching my bad eye (affected by the disease) and reading with my good eye. What I have been experiencing is periods of “blindness” in the good eye now and horrible pain in both eye sockets. What I would like to know from those that have had a similar experience is, after orbital decompression surgery, will I feel pain relief? Right now I take “at least” 3 (800 mg.) of motrin daily to control pain.

Another question I have is with the “blindness”. I’ve been to my dr. and he has conducted the field vision test and the optic nerve doesn’t seem to be compromised according to that “button” test. If this is correct, then can anyone on this site tell me WHY my good eye, after reading 16+ hrs., it goes completely black? It is freaking me out terribly and emotionally draining me. My Graves eye dr. is so understanding and wants me to see a “neuro ophthalmologist” for a second opinion. My only “thought” to this happening is that I’m overworking my good eye to the point that it too is tired and causing this blindness. At first it was just “greying” over and now it is just blackened, but the field vision tests conducted show nothing. I believe the field vision test is not showing anything because once I rest the good eye, my vision comes back to normal, if this makes any sense. The reason for the second opinion on the good eye is because my dr. is considering orbital decompression for both eyes now, not just the one.
I’m struggling to have any surgery at all, but if I can get pain relief 4 yrs. into the remission of this disease, I’m willing to go forward.

If anyone on this site has ever been in nursing school or any intensity of college studying, you know the stress and amount of reading / studying required, especially at the ripe old age of “over 50”, living the Graves.

[Kimberly]

#1170967

Hello – I’m not familiar with the blackness issue, but if it was me, I would accept my doctor’s offer to get a second opinion from a neuro-ophthalmologist. That has to be really scary and frustrating!

Regarding the pain issue, hopefully, others here will chime in who have been through OD. You might use the “search posts” feature in the top right-hand corner of the screen and review posts from Shirley (snelsen) has been great about documenting her experience with multiple surgeries.

Wishing you all the best with your nursing studies…your personal experience, compassion, and understanding will make you a great asset to the medical profession!

[katherinesc]

#1170968

Thanks so much for responding Kimberly…it’s beyond scary to have these spells when they haven’t been explained. I know I’ve heard people on the site talk about the “greying over” as possible optic nerve issues, but when the dr. runs my field vision tests and they come out normal, it’s very concerning to me. This site is so grateful to have you as a facilitator!! Thanks again!!

[snelsen]

#1170969

Hi Katherine, I went to a neuro-opthalmologist the entire time I had active TED.
Did this doc you went to to-was the visual fields test you had the one with the rather sophisticated machine, where you have one eye covered, and then look at the blinking lights? It is called the Humphrey visual fields machine.
That is what you need, I think to really evaluate your eyes. I strongly encourage you to go to a neuro-opthalmologist. I think that the exams they do are far reaching, compared to what you receive from a regular opthalmologist. TED is a whole different deal.

I also went to the pediatric surgeon who eventually did my strabismus surgery,(My diplopia was severe)and had more tests that were entirely different. They prescribed prisms, which helped many others on this site immensely with their double vision. It did not help me,but now, over 2 years later, after all the procedures you see that I had at the bottom of my post, I do have prisms built in my glasses, plus they are shaded a bit. I am still very photophobic.

I totally understand the extent of studying you are doing in your RN program. Ihave been an RN, (BSN and MSN also) for many years. It is a demanding life,t hat is for sure, to try to study and deal with tED at the same time. I also taught on the clinical side. I’m over 50…and 60 and 70! I retired in 2008 from my last (and easiest job) working per diem in an ACS, as a preop and post op nurse. Had to stop because of the diplopia, and looking at the moniters. Not compatible!

Hmm. Re the eye you use all the time, if I were you i certainly would be concerned, and I hope you can pursue this. It certainly could be overuse, but that is scary. One part of the answer might be to use prisms, be evaluated for that. They have ones that you can stick on your regular glasses for a trial.
The office who prescribed that, was the peds eye doc.

Do keep writing. this site is absolutely marvelous, i could not agree more. So glad you have a compassionate eye doc for TED. having said that, I spent my life with two docs with specialties i mentioned above. And I did have optic neuropathy. I did have greying of vision, decreased recognition of the color red, AND occasional blindness in one eye, but it was transitory, not as consistent as yours. My heart goes out to you, and I feel confident that you are going to end up on the bright side of this darn TEd. But plant in your mind that you will be having surgical procedures to help you. REad some of my posts about my OD, plus other stuff.
Shirley

[katherinesc]

#1170970

Thank you Shirley for ALL THE INFO!! What I am experiencing is transient to a point, it’s blindness AFTER all the reading so I’m wondering if it’s not optic nerve atrophy? It upsets me terribly and so I just go to bed, knowing when I wake up, I will be able to see again because it’s happened over and over the past 4 months…I just wonder now though, for “how long” this temporary or transient state will continue with the same path. I plan on seeing a neuro op dr. very soon, per my graves TED dr. locally. I feel really comfortable with my dr. because he wants me to have a second opinion with a neuro dr. too. I will definitely keep you updated, but thank you so much for being so resourceful and sharing your experience with me. Although we all walk a different path at times with this disease, we all have a common thread, it’s called Graves!! I APPRECIATE those so much that takes an interest in helping each other on this site!!

[frefluterb]

#1170971

So much good info. I can only tell you my experience….. My TED came out of no where…so I thought. At first I thought I had a brain tumor or stroke. Nope!!!
TED for sure. Wait and ‘see’ was the treatment… 6 months later, shooting pain in my right eye brought me to the ER. MRI showed optic nerve compression. 4 months later emergency bilateral OrbitalDecompression…too late…..Legally Blind. OK so the surgery gave me immediate relief of the pain in my sockets…less headaches . So even though I have permanat damage, for me it was a success. The vision I have left is still affected by the disease, diplopia, cross eyed ( from the muscle aspect), color issues, tunnel vision. Not to mention all the emotional stuff that goes with this stupid stupid disease.
On a good note, 2.5 years later, I was just granted Social Security, so I can now have my additional surgeries and get on with life.

good luck!!!

[katherinesc]

#1170972

THANK YOU THANK YOU for sharing your story with me. You are so brave and I appreciate all the information!! I am going to pursue whatever needs to be done to salvage my vision, you’re absolutely RIGHT!! Through this horrible disease, I will be the one that you have SAVED HER VISION with your testimony!! I appreciate the information more than you know. I’ve been emotionally DRAINED since this has been happening to me and to know someone else has walked my walk is so comforting. THANK YOU AGAIN FOR SHARING!!

[frefluterb]

#1170973

Thank you, I am glad it helped…… I saw your post and it was so familar to me. You know all the feelings that i have experienced, this is a great place to dump them…. and keep dumping them, they serve us no purpose to hold them in…in fact it can be detrimental

[katherinesc]

#1170974

You have no idea how this has helped me to “feel better”. Although I DO NOT want surgery, if this saves my vision, I’m willing to whatever it takes. It does FEEL GOOD to DUMP it all here!! Thanks again!!

[snelsen]

#1170975

Hi Katherine, I don’t think I had the button test, or if I did, I don’t recognize it from the description you gave.

So glad you will see the neuro/eye doc. But in the meantime, be sure to be aware of visual changes, especially decrease in clarity, or the color red very changed. Having said this, sometimes these changes are so gradual, that you don’t really notice them yourself until you get a big wake up call. In my own case, I had seen the neuro/eye doc, had Humphrey visual fields. At the visit, he said for me to let me now if I felt that my visual fields were not full, that the testing indicated to him that there was a possibility of pressure on the optic nerve. Also told me that I should see the oculofacial surgeon. He scheduled another visit in 2 weeks.

Sooooo-I really though I was seeing fine-until my car accident. I was on my way to that 2nd appointment for Humphrey visual fields when I had the accident. Got to the doc, had the visual fields, and the test showed that my vision was very decreased on the left. Then I realized that although I had looked to my left, I had a left field cut (decreased peripheral vision) on that side. And I really did not realize myself that my visual fields were not full.
The point of my story, is that I began to lose my vision and was really NOT aware of it. Very strange.
What a nice post from freflutrb. Sounds like she has been through a lot of hell.
I hope she reads this post, I think she is familiar with the fact that her double vision can be corrected by strabismus surgery. Glad she got Social Security, that is quite an accomplishment.

Having and OD is not bad at all. You do need someone to help you for a few days, and you need to keep your HOB up. (head of bed) When you get ready, read my posts about my OD, I documented it day by day for a while.
Shirley

[frefluterb]

#1170976

thanks Shirley….. I am laying in wait for my Stabismus surgery!!!!!

[katherinesc]

#1170977

THANKS Shirley…we appreciate your quick responses!!

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