[Robboford]

#1060516

Hi all,
Apologies for the infrequent posting. Life, Graves’ and TED moving along at light speed. I am still a bit of a puzzle to the medical fraternity. Went to Opthalmologist on Monday and my antibodies are still raging and have increased. Had updated CT Scans 4 weeks ago and although not as active as previous, the TED is still active and affecting my eye muscles. The radiation treatments I had in February have stopped the activity in my right eye muscles, but TED is still active in my left. The Double Vision has gotten worse and night time driving and driving in the rain has become impossible which limits me somewhat. I have also been severely affected my muscle cramping mainly in my forearms and legs and with extreme sensitivity to the cold. I started taking Magnesium and Selenium 6 weeks ago in the hope that it would ease some of the symptoms. The cramps and aches have eased slightly, but I have been feeling lethargic most afternoons and I am leaning towards stopping the Selenium, but will discuss with the Endo in 6 weeks at my next appointment. I am about to arrange my OD surgery starting with the right eye. This is only protruding by 29mm at the moment and then I need to wait 6 months for OD surgery on the left eye. This one is the the more problematic with the protrusion currently at 39mm. I have been assessed as having “severe” TED. After both OD surgeries, I will then wait 6 months to have the muscle surgery, hopefully only the left eye will need it, but as we all know, there are no guarantees with not needing it in the right eye. My Opthalmologist is adamant about the 6 month wait in between the Surgeries so still a way to go on this journey. Last week was 3 years since my initial hospitiisation and diagnosis of Graves’ and without the amazing support and information from this Forum and it’s members I never would have got through. Thank you – you all ROCK!
Take care all and keep fighting!
Cheers, hugs and kisses
Debbie
(A.K.A. Robboford)

[Kimberly]

#1183066

Thanks for the update! I’ve definitely heard of waiting 6 months between OD and strabismus, but not sure I’ve heard of others waiting that long in between the OD on each eye. Hopefully, others will jump in here and share their experiences.

This reminds me of one of the docs at Shiley Eye Center who told us that TED gives whole new meaning to the words “Patients” and “Patience”! Wishing you all the best!

[snelsen]

#1183067

I remember that it was very important for the muscles, swelling, etc, to heal completely from OD, BEFORE HAVING STRABISMUS surgery,and as I recall, I waited 4 months. That combined with post op measurements not changing, too. But I had only one OD for optic nerve issues, and I decided to wait for the other eye. Ended up not doing it, but saw them today, they would like to do the OD even now, but I think I cannot bear risking double vision again,and they cannot guarantee that i could close my eye in sleep…too messed up from failed graft to lower lid.
I’d just ask AGAIN, ask if he would do at 4 months, or even 5? Get some good reasons for that adamantly spoken time line!
Shirley

[scanders]

#1183068

Robboford, your positive attitude is an inspiration! Best of luck to you! I hope some wiggle-room on the timeline can be found, but at least you’re moving into the planning stage.

[Lddugger]

#1183069

Robboford, Best of luck on your surgery. I had two surgeries for orbital decompression on both eyes as my first doctor jumped in too early making my disease worse. Your doc may want to wait on the eye that is still showing symptoms of not being in complete remission or inactive. This is a long process but the second set of surgeries was the best thing I ever did. I was out 26 in each eye. I was glad with the second go around that doc did them separately too just FYI. The pain was much more tolerable and I could at least watch tv. Be sure to speak up if pain control is not to your liking. I also stayed a night in the hospital on the second set of surgeries each and it was much better with nursing care, and IV medications for pain. The absolute best of luck to you, keep strong. The double vision can be a problem until all the swelling goes down, and I have it permanently to the sides, but is is a minor issue I barely notice. My eyes feel amazingly better without all that pressure and are much less light sensitive and only tear in wind.

[Robboford]

#1183070

Hi all,
Thank you for your replies and comments. I spoke too soon on the muscle cramps! Back with a vengeance last night. It is the weirdest sensation, woke me up from sleep. My calf muscle contracted to the point of my leg looking like a chicken leg! My husband freaked out and couldn’t believe how it sucked in and stayed like that for about 25 minutes. This morning my muscle is still rock hard although my leg is almost back to normal size. Hopefully they will be few and far apart, before I started taking the magnesium the muscle would stay hard for about about 2 – 3 weeks with intermittent contracting. I will discuss the time frame again with my Opthalmologist and maybe he is erring on the side of caution and giving me a worst case scenario. Nothing on my journey has followed the “normal” pattern though, so will take it day by day. I am lucky that my Opthalmologist will be my Surgeon and he has a great relationship with my Endocrinologist so he will be up to date with all my labs and status. Friday here in my part of the world, so have a great weekend all.
Cheers
Debbie
(A.K.A. Robboford)

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