Orbital Floor Depomedrone Injection

[BlueSkiesAbove]

Hi All

Has anyone had any experience of the above for TED? Been offered this or intravenous Methyldprednisolone.

Thyroid Eye specialist has given me a week to make my mind up as to which way I would like to go.

There are 3 options, the 2 I’ve just stated or do nothing and risk permanent bulging eyes. I’ve not got bulging eyes atm but he says because of the TED activity I have, which is double vision on and off, dry, gritty eyes, changes to my eyes, slight redness, and slight swelling to one eyelid, this means there is inflammation behind my eyes and once the activity has finished, it can leave scarring behind the eyes which propels the eyes forward thus rendering them bulging, and once this happens it is potentially permanent.

I’m terrified as the only options seem to be put poison in my body or do nothing “and don’t come crying back to me if your eyes bulge if you do nothing” (my sarcastic analogy of what he said, not his words). I feel like I’m between the devil and the deep blue sea.

Any questions you think I should be asking, words of wisdom, positive experiences of the orbital floor treatment (this is the one I was leaning towards if I chose an option).

Thanks for reading, and ever grateful for input.

[PurpleNails Administrator]

Have you contacted TED charitable trust? You can join (for free I believe) & they have a Facebook page & Informative site about TED

They also have a helpline for advice & email.

I would give them a call.

tedct.org.uk (site)

tedct.org.uk/support-advice... (helpline)

It is very difficult when you are not given clear guidance, but having options is better than not having any or having a single option impressed upon you.

Are you optimally replaced? Many report that TED is worsened when thyroid levels are low / high or fluctuating, so stable thyroid levels will help your eyes.

Taking a selenium supplement is said the help protect eye.  200mcg for up to 6 months.  Then reduce to 100mcg.  Can be brought over the counter.  Bear in mind additional selenium rich foods (eg Brazil nuts) can take you to toxic levels.

For dry eyes I recommend warming eye mask & *preservative free* eye wipes / drops / gels. Some like to use drops in day & gel at night, but I use carbomer gel eg Ocufresh gel which is a lighter gel which melts quickly into eye. Rotating different brands seem to help.  

Very gentle massage toward lash line, you can use fingertips or carefully with roller ball tool or gua sha facial stones.  Warmth & message “unclogs” the blocked Meibomian Gland (tiny glands along lash line) and allows lipid oil layer to flow.  This protects eye and helps retains water.  

If eyes more swollen, inflamed or painful, I switch to cold compresses.

If you like to moisturise near your eye area use water based clear gels not oil / cream, this will lessen any clogging. I stopped using rich creams as developed milia white spots round eye.

It can also help to keep a photo record of eyes eg take a photo every 2 or 3 weeks. I put in an album on phone & hide behind a cute kitty picture. (buddy195 tip)

[BlueSkiesAbove in reply to PurpleNails]

Thank you that’s helpful, I’ll take a look at the sites mentioned. Taking photos is a good idea although I do have comparisons from 2021 and now which the hospital took and which the TED consultant used as part of his assessment. I am on a timer to make a decision so being better informed will help with my decision. Thanks once again

[Buddy195 Administrator in reply to BlueSkiesAbove]

I would 100% contact TEDct, as suggested by  PurpleNails

I spoke at length with them in the phone and found their service/ support amazing. They sent me information packs, found a specialist TED ophthalmologist in my area and phoned me back with further info that I had requested. I’ve joined their zoom meetings/ webinars.

[BlueSkiesAbove in reply to Buddy195]

Thank you. I have a phoned them today and they were really helpful!

[PurpleNails Administrator in reply to BlueSkiesAbove]

Good to hear they helped you. Did it help you come to a decision?

[BlueSkiesAbove in reply to PurpleNails]

Thanks for checking in. I’m still in a state of confusion TBH but they did suggest getting a second opinion which is good advice, but they had never heard of an Orbital Floor injection and said they get many calls a day which makes me a little nervous.

In the first instance I have arranged for the Orbital Clinical Nurse to call me in the presence of my OH so that he can hear the options from a clinical person, rather than just me. Then if I’m still in a quandary I may get a second opinion. The consultant said that time is of the essence and needs a decision by Wed, so it’s not leaving me much time.