Not many people know that I have a rare disease nor do they know much about the disease itself.
I have been living with Graves Eye Disease since (I believe Dec.2004, Diagnosed not long after that ) I also have Graves disease. The Graves disease is not what is so rare, it's the Graves Eye Disease also known as ( TED- Thyroid Eye Disease/Graves Opthamolopathy/Thyroid-associated orbitopathy/Graves Orbitopathy ). Only 10% of patients with a thyroid condition will develope TED.
TED is an autoimmune eye condition that, while separate from thyroid disease, is often seen in partnership with Graves disease. It is far more common in women then men. Smoking, which is associated with many autoimmune diseases, raises the odds 7.7-fold (which I was a smoker for a few years after having developed the disease, But quit Feb.09/2007).
The nasty symptoms of this disease are the :Graves Eye Stare (the inflammation behind the eyes causes a wide eyed stare look), Eyelid retraction, Lid Lag, Unable to close the lids ( which makes it difficult for the eye to stay lubricated ), irritation, grittiness, tearing, blurred vision, pressure behind the eye, double vision, and in severe cases the optic nerve can be damaged and result in blindness.
I HATE that I don't look the way I use to. People who see me on a regular basis say its not that bad, but they aren't the ones living with it.
My left eye has been affected more then my right, causing it to protrude a bit more then the other.
The eyes are the one thing that isn't suppose to change no matter how old we get, how fat we get, regardless of wether our hair is getting silver highlights.......Our eyes are not suppose to change.
I have spent hours upon hours infront of a mirror pushing up my bottom left lid in attempts to make my eyes appear to be the same size. I have perfected how to tilt my head for photo's as to not have it so visable.
My rare disease could be worse.......My eye sight hasn't been affected and it appears its in a cold phase ( not progressing ).
I went to a specialist in Ottawa in March after years of dealing with a local eye specialist who is less then charismatic. I was so nervous thinking again I would be told OOOO it's not bad enough to do anything about at this time, but to my surprise .................. He SEEN what I SEE.
I had brought him pics of myself from 10 years ago & 15 years ago, long before this ugly disfiguring illness entered my life, he was amazed at how much my eyes have changed. When I told him about what most people around me say ( that it doesn't appear that it's that bad ) he replied unless they're blind tell them to look at a picture. He scheduled another appointment for June of this year and said if my eyes are still cold we can proceed from there as to wether or not I want to move ahead with decompression surgery to put my eyes back where they belong.
For once since this came into my life "I WAS HEARD". I left my appointment and headed out to the car where my husband was waiting. My husband told me later that he thought it hadn't went well, since my lips were quivering as I walked to the car. I got in, looked at my husband and started to cry..... tears of relief/joy/empowerment. I could possibly have an end to this, I may be able to look like everyone else again.
However now I sit here with so many questions going through my mind about surgery. This is NOT a surgery to be taken lightly, with its own list of risks & possible complications.
He well informed me I would look like someone took a baseball bat to each eye. You are put to sleep for 2.5 hours, I would have to stay in Ottawa for a full week, and that recovery would take a good month or more.
I have been living with Graves Eye Disease since (I believe Dec.2004, Diagnosed not long after that ) I also have Graves disease. The Graves disease is not what is so rare, it's the Graves Eye Disease also known as ( TED- Thyroid Eye Disease/Graves Opthamolopathy/Thyroid-associated orbitopathy/Graves Orbitopathy ). Only 10% of patients with a thyroid condition will develope TED.
TED is an autoimmune eye condition that, while separate from thyroid disease, is often seen in partnership with Graves disease. It is far more common in women then men. Smoking, which is associated with many autoimmune diseases, raises the odds 7.7-fold (which I was a smoker for a few years after having developed the disease, But quit Feb.09/2007).
The nasty symptoms of this disease are the :Graves Eye Stare (the inflammation behind the eyes causes a wide eyed stare look), Eyelid retraction, Lid Lag, Unable to close the lids ( which makes it difficult for the eye to stay lubricated ), irritation, grittiness, tearing, blurred vision, pressure behind the eye, double vision, and in severe cases the optic nerve can be damaged and result in blindness.
I HATE that I don't look the way I use to. People who see me on a regular basis say its not that bad, but they aren't the ones living with it.
My left eye has been affected more then my right, causing it to protrude a bit more then the other.
The eyes are the one thing that isn't suppose to change no matter how old we get, how fat we get, regardless of wether our hair is getting silver highlights.......Our eyes are not suppose to change.
I have spent hours upon hours infront of a mirror pushing up my bottom left lid in attempts to make my eyes appear to be the same size. I have perfected how to tilt my head for photo's as to not have it so visable.
My rare disease could be worse.......My eye sight hasn't been affected and it appears its in a cold phase ( not progressing ).
I went to a specialist in Ottawa in March after years of dealing with a local eye specialist who is less then charismatic. I was so nervous thinking again I would be told OOOO it's not bad enough to do anything about at this time, but to my surprise .................. He SEEN what I SEE.
I had brought him pics of myself from 10 years ago & 15 years ago, long before this ugly disfiguring illness entered my life, he was amazed at how much my eyes have changed. When I told him about what most people around me say ( that it doesn't appear that it's that bad ) he replied unless they're blind tell them to look at a picture. He scheduled another appointment for June of this year and said if my eyes are still cold we can proceed from there as to wether or not I want to move ahead with decompression surgery to put my eyes back where they belong.
For once since this came into my life "I WAS HEARD". I left my appointment and headed out to the car where my husband was waiting. My husband told me later that he thought it hadn't went well, since my lips were quivering as I walked to the car. I got in, looked at my husband and started to cry..... tears of relief/joy/empowerment. I could possibly have an end to this, I may be able to look like everyone else again.
However now I sit here with so many questions going through my mind about surgery. This is NOT a surgery to be taken lightly, with its own list of risks & possible complications.
He well informed me I would look like someone took a baseball bat to each eye. You are put to sleep for 2.5 hours, I would have to stay in Ottawa for a full week, and that recovery would take a good month or more.
It's SCARY people.......Do I stay the way I am????Dealing with all the daily issues of TED???Or do I take a leap towards regaining some self confidence????
I'm anxious for June to come and find out the verdict on what my eyes are up to.
So I ask ........................What Would You DO????
I'm anxious for June to come and find out the verdict on what my eyes are up to.
So I ask ........................What Would You DO????
My husband is scheduled for this surgery in June and Aug. His eyes bulge at 32mm and 30mm. His surgeon is very conservative about doing this, and says this is a 4 hour surgery, per eye. She allows 6 weeks before she does the second eye. She sews the lower lid to the upper for a week, because lower lid lag is a big risk and difficult to repair. This is her own procedure, she's done about 4000. She said the decompression will only give him 6mm tops regression, bringing him to 26mm. Normal is in the low teens, so he's still going to have bulging eyes. His surgery is to save his optic nerves. Recovery is a full 6 months. The risk of the surgery is blindness, but for him that may happen if he doesn't have it. It doesn't cure the dryness, tearing, etc. The eye muscles can still swell, they'll just have room to do so now. How confident are you with the surgeon? How many decompressions has he done? Is 6mm or less going to be enough to make a real difference? Are your eyes keeping you from doing things like going out to eat? Seeing friends? Are you at risk of blindness? As a total stranger, I wouldn't walk down the street and say you had Graves eyes from your posted photo, but if its affecting your quality of life... best of luck.
ReplyDeleteMy left eye is @ 26 and my right eye is at 24 & a tiny bit.
ReplyDeleteMy surgeon is one of the best in my Province so I am confident with him, But @ this time it isn't affecting my sight......So I am for sure thinking hard about it. Suppose I should post a pic that shows the disease more.
thanks for the input.....& Best of Luck to your husband.
Looking at your picture and reading your blob, I see what you mean. I have known you since you were about four years old. It has always been the inner you that I noticed, not your appears.
ReplyDeleteI understand the living with something that makes you abnormal. In my case it is dyslexia. Suffer dyslexia that interfere' with writing, reading, sight, hearing, and speak. I was dignosed at age 10, however, I did not believe the doctor and tried to prove him wrong. In 2004, a work place accident resulting my return to school through WSIB, and kicked out of school, by WSIB. In Jan. 2010, I was tested and dignosed with suffer dyslexia, and labelled disabled. I had fought it and endured the frustration and struggles of the "birth defect" as many call it, for forthy years. I was very angry about the dignosed. But, I think the most angry stems from not accepting who I am, and from hiding the real me from people. Now, when people say "Are you retarded, or crazy?" I answer "Yes and I have the paperwork to prove it, do you?" We are all unique, just like everyone else. Both my physical and mental disabities can not be seen by others, and therefore, people assume that I am normal. That is until they know me better, and by then they either become a friend or not.
I am not giving an opinion on what you should do. Nor, do I have the right answer. I do know you are a very good person with or without blogging eyes, and people who care, care about you, not your look. May advice is to listen to what everyone saids, and then make the dicission that is best for you. Enpower your decission, knowing that once you have made your decission, you are doing what is best for you and your loved one. It is your choice and your decission. I feel your frustrations and struggles, and I pray that you find the strong to get through all of this. To me you are still the pretty young lady that lived acrossed the street from me. Helen Ames
Penny, if it makes you happy and good about yourself then do it! I am going to have corrective laser surg. as soon as I can. Just for me because it will make me a happier better Michelle. I love you much, keep posting!
ReplyDeletePenny,
ReplyDeleteWhen something like this comes along u need to way the consequences. If it is not affecting your eye sight at the moment and won't...per the doctor in June...really way the options. You have a beautiful child, obviously a hubby who loves you..just the way u are. If when u wake up every day, it bothers u it might be a solution..personally I think you grew up to be a beautiful woman..I hope all works out in the end, whatever you decide..so sorry to hear of your struggles:(. To me you'll always be a little sis...courage is all I can say..you'll make the choice that is right for u and your family..hugz..beatrice
Penny...
ReplyDeleteI am not effected by this diease, nor have i ever heard much about it until now. Thank you for sharing it with everyone.
Do what your heart tells you, Penny..what you want to do, and what will make you happy. You deserve to be happy, and to feel great and confident about yourself. You are a great person, wife and mother who owes it to herself to be as happy as this world can make you. Good luck in whatever choices you make..and if you need someone to chat with, you know where to find me :)
~Cass
Hey Pen..
ReplyDeleteI think you really need to look into the surgery before deciding anything. What are the risks? Side effects? Recovery process? Does it actually make your eyes look like they used to? Will the surgery prevent you from possibly becoming blind in the future or would that still be a possibility? Will it require more surgery in the years to come?
I'm sure you have already thought of alot of these things. It scares ME, and it's YOU going through it! lol If it were me, I honestly don't know if I would do it or not. It would depend ALOT on the risks, and how much pain would be involved lol.
Whatever you decide, I hope it works out for you and you get the results you want :) If you need anything, you know I'm here.
xo
Penny-do it! I have lived with TED for about a year and a half now. I certainly can relate to those terrible feelings emotionally and physically. My world was crashing around me! My sight was slowly declining, my eye pressure was sky high, my eyes were a puffy mess. I looked like hell and felt even worse. I was at the point of being blind and my doctor scheduled the orbital decompression surgery right away. Two weeks later I had surgery and am so glad that I did. Ultimatley I was told that even if I had waited and went blind, that I would still have had to have the surgery done. There was instant relief! No more irritation, no more feeling like my eyes were going to pop out of my head. I looked like I had been hit with a bat and there was swelling, but after a few weeks it was much better. I went to work after 3 weeks. The one thing that they dont mention enough about though is the way that the muscles react after being stretched out for such a long time. They eventually retract back to normal and sometimes not in the right way. My right eye is turned inward and I have a second surgery to fix that in June. For now, I wear an eye patch on my right eye most of the time I would highly recommend getting the surgery, it may be the best thing that you have ever done. Good Luck! Keep us posted please and God Bless- Kristy
ReplyDeleteHi Penny,
ReplyDeleteI just had orbital decompression a month ago. It was so worth it. TED really messes with my self-confidence and the surgery is well worth it. Of course there are risks but we also put ourselves at risk everyday when we get in the car. I had only my right eye decompressed since it was far worse. The surgery was not nearly as bad as I thought it would be and recovery took about two weeks. I am considering a couple more surgeries to add additional improvements and to decompress my left eye. Being reminded daily that we have a disfiguring disease is not worth the emotional distress and you should absolutely have the surgery. You won't regret it...even if it takes more then one to bring you closer to your "normal" appearance. The emotional healing and the self-confidence restoration is an extremely important part of the healing. We don't deserve to settle and just deal with a disease like this. I fully encourage you to go for it! It truly is worth it physically and emotionally. -Liz
Hi Penny, thank you so much for you're post... have had TED for close to four years now and to tell you the true there aint nothing worse as that!!!! well everybody will keep telling you you dont look so bad, but its different when u actually suufer frm this horrible disease...if naything, i reeallllllllyyyy miss my eyes, but being in Uganda i have no ope of having the surgery(havent heard them do it here) plus the doctor's never mention it! infact they keep telling me that they're become normal after the goitre operation(im hyper) and we all know what a lie that is.......its been terrible on my part, its the worst thing that could happen to a teen(now 21 got it when i was only 17) and its affeceted my social life so much, i nevber go out with friends!!thats how hard it is, and for people to understand that is a struggle....plus i get these funny comments from so many people telling me how big my eyes are...to be honest with you, from your pics, i would say they arent that bad,,,maybe like u say, u've learnt to tilt your head a bit ;) but my advice,,if u really think u need it, go for it, but make sure the doc is a good one....the eyes are what the people see first, u dont want to lose them forever,,,,,,,,,,plus dont forget God, He'll always be there for you take care and keep us poted!:) xxx Joy
ReplyDeleteHi Penny,
ReplyDeleteI have GD and TED also. I am waiting for insurance approval for the OD surgery. I too am scared on one hand and anxiety filled on the other. Even as I wait for approval, I go back and forth with my options about with the surgeries involved. Do you suffer from light sensitivity? That seems to be my biggest issue along with a loss of dept perception and slight blurriness. My family and friends didn't understand (or notice) until I pulled out pics from the last 2 years and then everyone is amazed at how different I look. I will remember you in my prayers.