[Kells1]

in reply to: Eyes burn, sting,tear all the time- update eyelid surgery #1174557

Hi,

I just wanted to say that you’ve been so strong and a rock for so many of us here with TED and have always been so open and ready to support us all as well as keep up to date detailed information through your posts. I hope things will improve for you soon and dont give up and keep fighting!

Kells x

[Kells1]

in reply to: My eyes have turned pink. #1174553

Best get your eyes checked by an opthamologist as it could be anything from an eye infection, allergies to TED and we wouldnt like to second guess. Good luck.

[Kells1]

in reply to: Quick Orbital Decompression Post-Op Update #1174530

Hi G,

Glad you are through the worst and hope you have a good speedy recovery. Kimberly is correct, many surgeons tell people that procedures will only have a few weeks or months of down time when the reality is that some can be a year or longer. I had to have nasal surgery for breathing difficulties and even past a year i could feel i was still healing and the pain and irritation and swelling can fluctuate. Give yourself plenty of healing time and we are all thinking of you.

You’re still beautiful!

*Hugs*

Kells x

[Kells1]

in reply to: Difficulty breathing and loosing voice #1174294

I would see your doctor asap and get a thorough examination.

[Kells1]

in reply to: Constant glare in sight #1174260

Hi Jaqe,

I find my eyes get quite blurry at times, not to the extent yours do. I think blurriness its partly due to eye dryness and also TED. I also have my room curtains closed if the light is too strong for my eyes and carry my sunglasses in my purse everywhere.

Ive been getting this strange sensation lately in one eye, like the middle bit of my eye… cornea i think is inflamed, its like i have a contact lens in but dont, is that normal with TED? I see an opth regularly and TED specialist who i will see at the end of the month.

Anyone also have swollen upper lids near the lash line only, or red veins on their upper eyelids that are visible?

[Kells1]

in reply to: seasonal allergies and TED #1172845

Do the normal lubricating drops not help? You could try a nasal steroid since i hear it can help with eye allergies too without needing to take tablets?

[Kells1]

in reply to: Eye problems #1172658

SIS wrote:

My vision is blurry and letters are doubled. Was hoping it would get better. I just saw my ophthalmologist about a month ago and my vision was ok then.

Thanks

Hi Sis,

I have TED too and i get the blurry cloudy vision so its normal with the condition. Keep up with your appointments and hopefully you will be fine and will be ok with time and patience.

[Kells1]

in reply to: thyroid and eye disease #1172289

gatorgirly wrote:

Shirley,

When living in Fort Myers, Florida, a neuro-opthamologist did all of the testing, including the visual field test about every 12 weeks. Now that I live in western Massachusetts, there are no neuro-opthamologists around here. My oculofacial surgeon actually does the visual field test in his office (well, he doesn’t do it – the machine does) as well as taking all sorts of measurements that my neuro-opthamologist in Florida did. I think this is common in areas without a trained neuro-opthamologist. My surgeon is renowned in OD surgery and all the local endocrinologists refer their patients with TED to him.

I agree with Gg, as far as I am aware, here in the UK the occuloplastic surgeon will do the relevant tests and even my local eye hospital told my doctor to send me to the surgeon as he also specialises in TED. Maybe its also part of a cost saving initiative here. And yes, my surgeon is also deemed the best in his field of work.

[Kells1]

in reply to: thyroid and eye disease #1172284

Apparently the excess skin shrinks to fit in time so there isnt usually a need to remove it. I am so glad you stood your ground with your doctor, you have double vision and thats something that needs careful monitoring along with the TED. I dont have double vision, mainly blurry and now some cloudy vision and i was given an appointment in july. I hope all goes well for you and that your questions are answered fully so you are reassured with this specialist.

[Kells1]

in reply to: weird eye sensations should I worry? #1172019

Bobbi wrote:

To Kells1: I would suggest you edit your great list about how to cope with TED. You put on it that folks need a couple of pillows to elevate the head. While we do often need our head elevated to reduce overnight swelling, using pillows can throw off some folks’ spines. Our heads can often be more safely elevated by putting wood blocks or something similar under the head of the bed. If your bed sits on one of those metal frames for instance, it is not too hard to put a touch of height at the head end of things. That way your spine is fully supported and not “bent” (folded, mutilated or spindled….)

@Bobbi – Done.

[Kells1]

in reply to: weird eye sensations should I worry? #1172017

Has anyone tried the selenium supplements as I hear they help with the TED and dryness as well as omega fish oils and flax oil?

[Kells1]

in reply to: weird eye sensations should I worry? #1172015

@Cat – Your reaction and fears are perfectly normal, despite what the specialists, docs and others may say. Its not easy for others to understand the psychological and physical and emotional stress and worry any eye issues can have on our lives and general health. TED is not just about the physical changes, but also visual and dry eyes can be a nightmare to deal with if not managed correctly. Then theres also the headaches and pain and fatigue and irritation and floaters and bloodshot eyes and lid retraction/bulge/protrusion, which makes it hard to sleep or even look in the mirror or even want to go out and face the world or go to work.

All you needed from that eye specialist was REASSURANCE, and he/she should have given you that and not some sarcastic remark about seeing a therapist. Medical professionals are not just there to dish out meds or do surgeries, they are also there to support a patients well being by providing empathy and support, listen, respect as well as give patients information about what they want or need and to help make sure that they are satisfied and understand what is happening to them and how to get through each stage of their illness and treatment in one piece.

And as Bobbi mentions again and again, please do keep your eyes well lubricated. The key is to keep the eyes wet as much as needed before any feeling of irritation or discomfort develops. Each of us are different and the severity of TED will also vary considerably.

I do agree though that such resources as this site are invaluable to any sufferer. Its a shame doctors dont give out a list of helpful sites or numbers or organisations to patients for support networks so they arent left isolated with their condition.

Symptoms of TED:

Swelling of upper or lower lids or both
Redness
Keratoconjunctivitis
Eye Protrusion – either bilateral or unilateral
Red eye veins
Double vision
Watery eyes
Burning sensation
Stinging sensation
Headaches
Photophobia (light sensitivity)
Orbital Pain/Pressure around the eye socket or behind the eyes
Itchy eyes etc…

*Not all may be present, but always get the right diagnosis from a medical prof.

Also, maybe a TED checklist may help others:

Preservative free drops
Daytime eye protection wear with UV filters
Night time protection goggles/mask for eye dryness
Head elevation at night – for eye swelling
Night time eye gel
Humidifier
Painkillers – only if needed and DO NOT EXCEED THE STATED DOSES
Cold eye packs to reduce swelling etc…

*Not all may be required

[Kells1]

in reply to: weird eye sensations should I worry? #1172010

Hi Cat,

I have TED and get burning and stinging sensations and dryness and irritation and headaches, blurry vision etc.. but even then they just give you drops for the dryness and say wait. Keep monitoring your eyes for any changes.

[Kells1]

in reply to: I’m home #1171888

Get well soon! x

[Kells1]

in reply to: Is This Normal? #1171828

gatorgirly wrote:

Hi Kells,

I never had double vision, but I was diagnosed with moderate TED in July 2011. You mentioned opticians. I hope you are not going to them for these symptoms…? At the very least, you want to get in to see an ophthalmologist but ideally a neuro-ophthalmologist. My lids were also swollen, and obviously I had protrusion, but they were also extremely red and glazed. My eyeballs actually swelled out the sides in addition to the protrusion. Steroids helped immensely, but you should call and explain that you feel this is the onset of TED. I was able to get in that very same day by “freaking out the receptionist.” Hey, it worked…

Haha, I like your style! :0P

Yes I have managed to get an appointment with a TED specialist soon and am using drops until I do. I think a sibling may have the same problem, so I will be dragging them along with me too.

Btw, who are the three hot guys on the cover?

[Author]

Posts