[laura1701]

in reply to: Risks of Strabismus Surgery #1184612

I had strabismus surgery in January and am scheduled for a second strabismus surgery in September. Good result from the January surgery in that it made it possible for me to actually fuse images. I just cannot keep the images fused long enough for single vision to be reliable. I have significant enough eye muscle deviations remaining that my brain cannot overcome. So hopefully this second surgery will improve matters! Had an orbital decompression a year ago to save my vision. I believe the risks to vision with TED are mostly associated with possible optic nerve damage from the eye tissue and muscle swelling that comes with this disease. That can catch you off guard especially if you are dealing with this disease one eye at a time. Of course, with any surgical proceedure there are risks involved. Great advice from Liz and I echo it-find a surgeon who sees Graves patients regularly and does strabismus surgeries weekly.

[laura1701]

in reply to: Newly diagnosed and confused #1184477

Evelyn wrote:

I am thankful to have found this forum! I have recently been diagnosed with Graves’ Dz. My endo’s medical assistant called me to tell me the results of my thyroid uptake and wanted me to tell her on the phone which treatment option I wanted. I insisted on meeting with him to discuss my concerns; I see him on Monday.

I have read volumes of information from credible sources; none have made me feel any better about the idea of treatment. I feel great, 65 y/o marketer, work full time, exercise daily, good energy level but not hyper. Have had few symptoms of hyperthyroidism: palpitations and racing heart on occasion-controlled by beta blocker; no weight loss, etc. Why would I want to have treatment that will make me feel sick, gain weight, go bald, or have agranulocytosis, hepatitis and many others distressing side effects?

The hyperthyroidism was discovered by chance when I changed internists (my old one retired). My TSH was 0.005. While waiting for the endo appointment weeks later, my cardiologist ran T3 and T4. T3 is 217 and T4 is 17.8. The Thyroid uptake scan findings are: ” The 24 hour uptake value was 34.7%, which is at the upper range of normal for 24 hour uptake. No hot or cold nodules identified”.
I will appreciate hearing from others’ experiences with diagnosis and treatment.
Looking forward to hearing from you, Evelyn

I am very curious if any of your docs have thought to run any of the thyroid antibody tests for you? For instance TSI-thyroid stimulating immunoglobulin? This one is a marker for Graves disease. There are other antibody tests that relate to diagnosing autoimmune thyoid disease and this info could help determine the direction of your treatment plan. Hard to make any sense of lab results with out the corresponding ranges.

[laura1701]

in reply to: can’t decide- IV steroids or oral #1184430

High dose IV Pulsed steroids worked perfectly for me with severe TED in my left eye in 2012. 12 week course of 500 mg for 6 weeks and stepped down to 250 mg for last 6 weeks. My vision was saved and my double vision drastically improved. I did not require any surgery and thought my bout with TED was over. It was a huge success to me. I had minimal side effects from the IV steroids and believe me I was scared of the steroids. I took a 4 week course of oral steroids right before the IV steroid treatments. The oral steroids had a minimal impact on my TED and I had more side effects from them. I went for 2 years with very manageable DV corrected with ground in prism glasses and thought it was all over. Started another course of IV steroids in 2015 after my right eye started to act up. This time the IV steroids where not effective enough, although they bought me some time to figure out surgical options. After 6 weeks of treatment, I ended up having an orbital decompression on my right eye to save my vision. I could not see the big E on the eye chart and had started losing color vison with my right eye. I found the IV steroids much easier to tolerate than the oral. I do find I am more sensitive to steroid meds now. Ask for a sleep aid for the first couple of nights after the infusions-if you go that route. It is frightening to have all of this thrown at you and to have to make quick decisions when your sight is threatened. I chose the IV steroids because of the studies that show that they seem to have a better side effect profile and can be highly effective-as in my first course with my left eye. I feel for you having to go down the TED road. Good luck!

[laura1701]

in reply to: Anyone using Restasis for dry eye? #1184316

I have used Restasis for the last several years. I also have never been sure whether it was really helping or not. After my January 20 strabismus surgery, I had to stop using it. I realized it was causing my poor surgically irritated eyes to burn like crazy. Eyes already were very uncomfortable and Restasis just intensified it to a new level. I have not noticed much difference yet in dryness-although I have been using loads of artificial tears and ointments because of sutures. I did not know Restasis was not meant for long term use?? I only noticed very sporadic burning from Restasis prior to the recent surgery. So it was not a problem for me then.

[laura1701]

in reply to: Strabismus surgery…. #1184105

Oh Liz-I will be thinking about you. Is your surgery the last week in Feb or the first week in March? Are you having the eye measurement appointment on a Tuesday and surgery on Wednesday? I will be back up there for my post op appointment the first week in March. We may cross paths? I had 2 muscles in the right eye and 1 in the left eye repositioned. It is funny-I had torsion-sight picture tilting to the left- in my right eye and after surgery it appears to tilt to the right. No torsion in the left eye. My right eye is still pretty red. Fortunately I am not scaring people quite so much when they see my eyes now!! I don’t know if I will need lower and upper lids repaired or not. My upper right lid has been retracted for the last year. I guess I have slight retraction of the upper left as well. The new problem is my lower right lid droops, so the white shows below the iris and eye drys out quickly. I would so prefer no more surgeries, but will wait and see how things turn out as my eyes continue to heal. Would you consider more lid correction surgery after your strabismus surgery?

I had ordered these little round ice gel packs before surgery and they were wonderful. It was too painful to have actual ice packs or any weight on my eyes and the sutures. These round gels are pliable, small and I held them one at a time on my poor eyes-so I could control the weight. In the last week or so I have been using warm compresses on my eyes. Also, audio books were lifesaver. I think I even listened some in recovery. I could not really read easily until a few days ago. Kudos to those of you who go back to work right away.

[laura1701]

in reply to: T4-Only Versus T3/T4 Combination Therapy – Please Share Your Experiences #1184237

I never felt right on T4/Synthroid only, after my thyroidectomy in 2010. It was a struggle. I took every strength from 88mcg to 125mcg trying to find some semblance of normalcy. I always had high or over range FT4 levels, low FT3 levels and a nonexistent TSH. I got educated and asked to add T3 to my T4 meds. I started out with a HALF of a 1/4 grain Naturethroid tablet which amounts to 1.125mcg of T3 and 4.75mcg of T4. A very small amount of T3 because I just knew I would be sensitive to T3 at first. Cutting those little tablets was tricky, but well worth it! I also switched to Tirosint instead of Synthroid.

Over the past 2 years, I lowered my T4 replacement to 75 mcg of Tirosint and slowly upped my Naturethroid to 3 – 1/4 grain tablets per day. Remember the Naturethroid has T4 too. So my total daily T4 is actually a bit over 100mcg. My total daily T3 dose is 6.75mcg. I split the Naturethroid dose and take it 2 times a day. Now-I have a low to mid range FT4 level, a mid range FT3 level and a more normal TSH that falls within the low part of the range. The optimal place for me. I feel almost like my old self for the first time since I was diagnosed 6 years ago and had the thyroidectomy. If it weren’t for the TED problems I would be able to forget that I have Graves’ disease. I will never go back to Synthroid or T4 only replacement!

[laura1701]

in reply to: Strabismus surgery…. #1184103

I am 3 weeks out from my bilateral strabismus surgery. The docs said everything went fine. I am starting to have wonderful periods of single vision (in certain fields of gaze)without even thinking about it! I did not expect to have to work this hard to see after the strabismus surgery, but remain hopeful and am trying to be patient! No prism glasses right now-so it is just my poor eyes and brain working so hard! This has been a very uncomfortable recovery. I cannot call this a piece of cake. Burning, stinging, watering, nauseating, painful to move my eyes or try to focus-you name it. My eyes looked like something out of a horror movie until a couple of days ago! I should have done this right before Halloween for the best costume ever. I think I am finally over the worst of it and can start to really relish the amazing periods of single vision. I may need some upper and lower eyelid adjustments? My right eye is even less able to close properly now. Something with the surgery affected my lower eyelid. What is eyelid surgery like? I was REALLY hoping this would be the last surgery. Do I need to start a new thread about eyelid surgery? Thanks again to those who have gone through this before me and shared their stories.

[laura1701]

in reply to: Strabismus surgery…. #1184100

Liz-My strabismus surgery is also at Kellogg Eye Center next week! The weather is supposed to be really cold while I am up there. I live in the Deep South, so will be a big change for us! I am down to using one eye at a time now-so a pirate patch or my glasses with one lens occluded with 2 layers of clear contact paper. Too much strain on my neck and eyes to keep trying to use both eyes together this last week or 2. I am actually looking forward to this surgery or really to the outcome of this surgery. I too dread the discomfort to get to the outcome. It is hard to willingly rock the boat isn’t it? Maybe this one will be easy for both of us-like it was for Shirley! How long between your ODs and the strabismus surgery for you? I am doing the Saran Wrap over the eyes at night for lid retraction. My lid retraction is not too bad now, but still causes dry eye problems. They will evaluate for lid retraction surgery after I heal from the strabismus surgery or maybe I will just continue to Saran Wrap my eyes for the rest of my life!!

Jeff-I have been wearing a combo of varying strength fresnel temp prisms for horizontal correction and the vertical correction is ground into my lenses. Fresnel is only on one lens. I asked my local optometrist to order the fresnel prisms for me. I live in a small town so they are not normal offerings from the eye docs here. I got my first fresnel from an orthoptist in a larger city eye clinic.

Thanks again to everyone for sharing their experiences!

[laura1701]

in reply to: Strabismus surgery…. #1184096

Thanks again to you both for all the info you have so generously shared! “Hellish” is such an apt way to describe the double vision. I am really struggling with the unknown aspect of the recovery from eye muscle surgery. I just DREAD possibly having any lengthy stretch of time with uncorrectable double vision while the eye muscles heal. I have found it such a challenge, when I have not been able to function outside of my home. Either because my vision was so impaired at different times over the last five years and for awhile after the OD. I was overjoyed when I finally got some new glasses that worked after about 6 weeks of healing from OD! It was like being let out of a cage! Even recently I went around with headaches and such bad double vision I just had to cover one eye. I find the lens occlusion very uncomfortable-so not my favorite. It took me acouple of weeks to realize that my ground in prisms and temp prisms had slowly become over corrective!! At least my eye muscles seem to be moving in the right direction. I got new prescription with a little less vertical and a less strong Fresnel and I am mostly OK with the glasses on. As you have both experienced – I am struggling with the less functional version of myself, all the limitations DV imposes and the prospect of a few more backwards steps to move forward. Thanks to you two- I am now reminding myself that my eyeballs do see (thanks to steroids and OD) -just not together AND a few more weeks or months of pain and suffering with this will hopefully evolve into a single vision outcome!!

[laura1701]

in reply to: Strabismus surgery…. #1184093

Scanders-Thank you so very much for your detailed response! I am hoping a few more people will chime in, but you have given me a clear picture of what I might expect. I am mentally planning for a easy recovery, but will also be prepared for one that is less so! I cannot believe you went back to work so quickly. I have used glasses with an occluded lens as well and yes, I understand the pain with eye movement thing. At times, it just hurts to use my eyes! I am thinking that none of my present glasses or temp prisms will be of use, because hopefully they will be way too much correction-I am thinking about the transient period after the surgery? Could you see single vision shortly after surgery? Did that fluctuate a lot during the healing period?

[laura1701]

in reply to: Strabismus surgery…. #1184091

Thank you for your responses. Any specific advice for dealing with the possible scratchy sutures and the pain? Did you ice, take pain meds, use eye drops? Did you have swelling like with an OD? Could you watch TV or read or is it uncomfortable to use your eyes for awhile? I totally understand what you mean when you described the eye pain from surface irritation and the deep pain from trying to see-that sounds like my experience after the OD. Seeing well and comfortably used to just happen without effort or thinking and with TED it is a constant effort.

[laura1701]

in reply to: Infusion steroid treatment for TED – suggestions? #1184050

I have reluctantly done the steroid infusions 2 times for optic nerve compression and loss of vision and survived! Once for the full 12 week cycle in 2012 and recently in the spring for 6 weeks. In 2012, for my left eye, it was a slow and steady success! Saved my vision and mostly resolved the double vision issues. I was left with a very manageable degree of double vision and wore prism glasses. I was thankful to have avoided needing surgeries and got on with my mostly back to normal life. The more recent infusions were for my right eye and I ended up needing an orbital decompression this past summer. The steroids were not helping enough with the optic nerve compression and vision loss. The OD saved the vision in my right eye, thankfully. I now have severe double vision -not unexpected after OD- and plan to have eye muscle surgery in January. Who knows why the steroids did not work as well the 2nd time?
I was diagnosed with Graves in 2010 because of my eye problems. Had my thyroid out that same year. I found the infusions tolerable, but it definitely made it difficult to sleep well and stay calm. I got smarter and asked for a sleep aid to be prescribed for the 2nd round of steroids. I would take take it the first 2 or 3 nights after the infusion and then tried to manage with out until the next round. I did find the IV infusions easier to tolerate than taking oral steroids. I did gain some weight both times. It took me about a year to get back to normal after the 2012 infusions. I am only a few months out from the recent steroids so I am still working on shedding the pounds. This is a frustrating and trying disease. I am soooo sorry that you are dealing with this seemingly out of the blue. I was really caught off guard when my right eye started me on my 2nd bout with TED. I wish you all good luck with the treatments and pray that it resolves your TED.

[laura1701]

in reply to: Anyone out there who has had IV steroids more than once? Left eye for vision loss 2012. 2015 all over again in my right eye. #1183886

Thank you both so much for your responses. I have ended up scheduled for OD of my right eye in about 10 days. I really wanted to avoid it, because of success with the steroids on my left eye. Just the idea of more surgery and since it is ONE eye it seems likely my eyes wil not match, but they will see well -but with another version of double vision??!! I am kinda used to that-eyes that are not the same and varying double vision. The IV steroids are not helping improve my vision loss quickly enough. My doc said that many times the second flare with one eye is worse. Liz1967 how long do you have to wait for muscle surgery after you ODs? How are you getting around/along in the meantime? I did get some tempory prisms added to my glasses that have made my life much better for now! Much easier to navigate stairs and drive. My depth perception was so off. I traveled to an excellent eye center in Michigan and it makes a world of difference to see people who deal with Graves Eyes everyday-I live in a very small southern town. Shirley, I will go back and read your posts. Thank you again for sharing your experiences with TED.

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