[elf]

#1074390

Thank you for posting! The surgery greatly improved Patrick’s looks. YouTube would be a great tool for Thyroid Eye Disease patients. So far, I’ve seen several "before-after" picture stories on the GravesOphthalmopathyTEDsupport – in Yahoo groups, but videos are much more effective.

Thanks again!

[mdrn1]

#1019834

I am the mom of a young man, he’s 27 now, who has been dealing with Graves’ Disease for the past few years. I came to this site looking for answers to many questions. He not only had the thyroid problem, but the thyroid eye disease as well. I want to thank many of you for posting and helping us deal with what has proved to be a long process. He started with RAI a couple of years ago and he had his first eye surgery last February and the second one in November. Next month, he is suppose to have the reconstruction surgery to both eyes. While looking for info on this surgery, what we found was not much information. We especially wanted to see pictures of people before and after the surgeries. We only found a few. My son has allowed us to take pictures of this process and my daughter started a blog site which she has been updating and has also put 2 videos on U-tube. It’s amazing to see how far he has come. If any of you are interested, the blog site is battlewithgravesdisease.blogspot.com, and to find the U-tube video’s look up Pat’s Orbital Decompression Surgery. There will be 2 different ones you can view. I think the 2nd one has Part 2 on it.
Please let us know what you think and if this is helpful to you. I find knowledge makes us more powerful and gives us the ability to make better decisions about how to deal with things in our lives. May God bless each and every one of you and your families, who are dealing with this disease. It has made our family so much closer. If anything, we have learned to have a lot more patience and understanding when dealing with this disease.

[DianneW]

#1074391

Thank you so much for sharing this! I’m in tears after watching this, because I know so many brave people on this board who have been through what Patrick has, and it’s difficult to see someone so young have to deal with this too. At the same time, it makes me feel good to see him being helped with surgery. I’m sure your efforts in making this available will give hope to those who are still in the early stages of ophthalmopathy and fearful of the future. Please welcome Patrick to post on the board as well.

[dsarmien]

#1074392

Hello, I would like to thank you & your family for all that you are sharing regarding TED. My son, who is 25 years old, had decompression surgery on his right eye on 1/5/09. It’s been a month almost & it does not seem that the eye has sunk in as much as we would like it to be. He’s from San Diego, but going to school in Arizona, so I don’t see him everyday. He says he wears a patch on his right eye when he goes to school, because the eyelid seems to want to open on its own & the eyeball feels like it’s going to pop out, so the eye patch helps. He’s coming home on 2/13 to meet with his opthalmologist, so we’ll see what is going on. We also saw a radiologist a week 1/2 ago, but she did not recommend eye radiation for the swelling at this time. Perhaps his opthalmologist will prescribe some anti-swelling drug instead to help with the swelling. Did your son have similar problems or sensations after decompression surgery? Perhaps we just need to be more patient…

Again, thank you & God bless you & your family.

[judy]

#1074393

Hello – I am so nervous about having this surgery
I am having surgery March 24th is there really a big change?
I just want to look like I did before…. I have a bad case of graves opthamology. Both protrude I have bags under my eyes my eyelids are puffy like someone punched me.. I cry just about everyday when I see myself in the mirror. I look really tired… or insane.. or on crack.. I hate when people look at me
Is this surgery really going to fix all of that??

Judy

[DianneW]

#1074394

Hi Judy,

This eye disease is miserable in many ways. I’ve been dealing with it for many years myself, and have had 8 surgeries so far, including orbital decompressions on both eyes. The decompressions were the best surgeries I ever had.

When I woke up from the decompression surgery I felt an amazing relief from the pressure, and I reached up and felt through the bandages and could tell that my eyes weren’t sticking out as far. I was SO HAPPY! I looked like something out of a horror movie for the first week, but I didn’t care, and by the second week the bruising and swelling had improved enough that I could tell quite a bit what the results would be (although generally full improvement takes 6 months to a year).

The decompression surgery won’t repair all the damage that this disease does. Depending on your particular needs, your surgeon will remove varying amounts of orbital fat from around your eyes and eye muscles, and probably also burr holes into orbital bone that connects with the sinuses to allow the expanded eye muscles to fall back in that space instead of protruding. The bags under your eyes may be a result of some of the orbital fat that has been pushed out into the skin around your eyes, and that will have to be removed in a separate procedure that is considered cosmetic and is generally not covered by insurance.

After the decompression surgery, many patients have some degree of double vision, and that might need surgical correction. Sometimes the double vision is temporary and will correct in a few weeks or months. Your ophthalmic surgeon should talk to you about that as a risk of surgery. I had some temporary double vision following my decompression that cleared up after a couple of months. (I would do the surgery again even if it caused double vision requiring surgery to repair.)

Another problem that might need surgical attention after the decompression is eyelid position. Once your eyes are back in a more normal position, your eyelids might not be in the right position on your eyes. If not, they can be surgically repositioned so they’re not either retracted or droopy. I don’t know if you’ve had a problem with eyelid retraction as some TED patients do, but if so, this would be the ideal time to correct it.

If your eye disease is extremely severe, you might not get all the results you want in one decompression. I know several severe cases who have had multiple decompressions in order to get their eyes back anywhere close to where they were.

This probably isn’t exactly what you were hoping to hear. I understand that we all want to look exactly the way we did before this disease ravaged our eyes. I can tell you now that if you’re a very severe case, that’s probably not a realistic hope, but the reconstructions can make you much more comfortable and make you look pretty close to the way you used to look. It may not be as fast as you’d like. I’ve been going through surgeries for 11 years. It won’t be that long for you, I pray. (I’ve had some unusual complications.)

I understand what you are saying about how you feel about the way you look. I’ve cried many angry tears myself. I wish you could get together with the rest of us who know what it’s like, at one of the conferences.

But the decompression will do more for restoring your normal appearance than you can imagine, so BRAVO to you for having it done! The procedure itself sounds really scary, but I didn’t find it as painful as some of my eyelid surgeries. Make sure to follow your doctor’s instructions about putting lots of ice on the first 24 hours to keep down the swelling, because that will help with the swelling and bruising, and help you heal faster. When you get home, use frozen baby peas in zip-lock bags for ice packs. They conform to the eye area, keep the cold fairly well, can be re-used quite a few times, and you can exchange one pack for another as soon as they begin to thaw. If you buy a very large package before your surgery and have it already broken up into soft quart-sized zip lock bags, they’ll be ready for you when you arrive home.

If you have other questions before you talk to your ophthalmologist again, or want ideas for questions for your ophthalmologist/surgeon, let me know. Other than that, I wish I could give you a big hug. I think you’ll be really glad you had the surgery.

Best wishes,

[dsarmien]

#1074395

Diane, thank you for your reply to Judy. I sent your response to my son so he can read it. My son, Steven, had the decompression surgery done almost a month ago on his right eye. I think his eyelid is retracted, & he tells me it’s still blurry. He’s wearing a patch right now to get through school, & he says his eye feels like it’s going to pop out at times, so the patch helps. He is coming home from AZ to San Diego next week for his check up with his opthalmologist. It looks sounds like more surgery is needed to get the eyelid positioned properly.

Best wishes to all who have this disease & God Bless. Thanks again, Diane.

Dolores

[DianneW]

#1074396

Hi Delores,

That must be really rough for your son. I realize you can’t tell so early after his surgery if his results were disappointing or if he still has a lot of swelling from the surgery, but this early it could easily be surgical swelling still. DO ask his ophthalmologist during the checkup!

I suggest you ask if the surgeon thinks the decompression that was done will be sufficient to bring the right eye back where it belongs; and if not, whether another decompression can be done. Ask when you can expect to see maximum improvement. His surgeon should have a good idea based on the particular type of decompression that was done and how he’s progressing to this point. (There are many different methods for orbital decompression.) If there isn’t a complete plan for a sequence of surgeries to reconstruct Steven’s eyes to pre-Graves’ state, both functionally and cosmetically, you might want to discuss that with the surgeon too, as well as whether the insurance would pay for all of the procedures.

In my case, for example, a blepheroplasty was done in conjunction with lid retraction surgery, and the surgeon charged a flat $2,000 out-of-pocket because the insurance didn’t cover that (this was over 10 years ago). The blepheroplasty was removal of the fat bags that had been pushed out around my eyes under the skin, both upper and lower. These fatty areas hold a lot of fluid, just like the fat behind the eyes, and are part of the disfiguration many people with Graves’ Disease get to some degree even when the eyes are only slightly involved. I’m so familiar with the look now that it’s pretty easy for me to spot someone with TED.

I should have clarified that it’s common to wait 6-12 months following a decompression before doing lid surgery, so that the lid position will be finished changing. So if Steven does have lid retraction in his right eye, surgical correction may have to wait. Ask his surgeon when he would recommend doing further lid surgery. (It might be a good idea to write down the questions you want to ask.)

Radiation to the eyes will help when the disease is in the active stage, but by the time it’s settled down to the point that corrective surgeries are being done, it’s beyond the point where it would be effective.

Tell Steven that he’s not alone in wearing an eye patch and/or shades during this process. This would be particularly hard for a young person. I have so much empathy for you mothers out there who have to see your children go through this! They’re so fortunate to have your love and support.

Best wishes

[dsarmien]

#1074397

Hi, Dianne — Your response truly helps a lot & will help me & my family know what questions to ask when we visit Steven’s eye doctor next week. I can’t express in words how grateful I am for your kindness & generosity. I can see you spend a lot of time helping so many people with graves disease, including their families. Thank you so much & God Bless.

Regards,
Dolores

[DianneW]

#1074398

Dolores, let us know how the appointment goes and how Steven is doing, and send my best wishes to him.

Dianne

[mdrn1]

#1074399

Pat’s next surgery will be on March 9th. He will have reconstruction done on both eyes. Getting rid of the excess skin on the top of the eyes. The doctor said he wants to wait about another year or so before he does the bottom of his eyes. For those of you who viewed his videos on U-tube and saw his blogsite, I know the first few days after the surgery look pretty bad- like he got beat up or something, but he is so happy with the results. Before the decompression surgery, he couldn’t even close his eyes. He had one of the most severe cases we had seen. He was seeing double at times, usually when he was tired or when he first woke up and tried to focus his eyes, but after his last surgery to correct the muscle in his left eye, he now sees one. We will update his pictures after his next surgery. For those of you who would like to ask him more questions, he said you may e-mail him at docrates1@aol.com and he will get back to you. The surgery may not get you back to the way you once were before the disease hit, but it can make you feel better about your appearance and you can see! That’s what Pat wanted more than anything. His doctor is amazing. We have been truly blessed!

[dsarmien]

#1074400

Hi, Dianne — Steven had his check-up last Friday. Although the decompression surgery helped lower the pressure in his eye, Steven’s doctor would like him to see an ear, eye & nose specialist to determine if another surgery, removing a portion of the nasal cavity bone structure will help Steven’s case, which according to his doctor & the radioliogist is the worst case they have ever seen. He also recommended radiation therapy, which could have potential cancer risks, so I’m really afraid of this option.

If anyone has had one or both procedures done, I would appreciate your comments, which would help me & my husband help our son. Thank you all.

Regards,
Dolores

[dsarmien]

#1074401

Pat’s Mom — I’m so glad your son is doing so well. I’m hoping that my son, Steven, in time will also get better. I don’t know if you’ve read my previous messages, but basically my husband & I are going through the same thing wih our son. Steven, who is 25 years of age, had RAI treatment for his graves disease & later got TED. He had decompression surgery about a month or so ago. Although the decompression surgery helped reduce the pressure, his opthalmologist last Friday said that more needs to be done. We need to schedule an appointment with an eye, nose & ear specialist to determine if creating more space in the sinus area will further help his case or if radiation treatment will be the way to go. My husband & I are trying to help him obtain the best treatment possible. This forum has been very helpful. May I ask how you stayed positive & strong for your son? I will e-mail your son like you suggested to ask him about his treatment. Thank you so much for your help.

Regards,
Dolores

[mdrn1]

#1074402

Hi Delores….
When Pat had his Orbital Decompression surgery done, there was also another surgeon in on the case. He was board certified in otolaryngology- head and neck surgery. He was fellowship trained in rhinology and endoscopic sinus surgery (I just read that from his card). He did his part of the surgery first (creating more space like you described in the sinus area), then the other surgeon did his part. He followed up with both surgeons after the surgery. It was the best case scenerio to have both of them doing the surgery from what I have heard. They are both amazing surgeons. We are very pleased with the outcomes so far. The surgeon who did the surgery for the sinus area actually used Pat’s surgery in a talk in Greece last year. What part of the U.S. do you all live in? We are in OH and Pat’s doctors are both here as well.
How did I stay positive and strong during all of this, I have a strong faith and trust in God and I had to let go and let the Lord take care of my son and me. My son has been on prayer chains not only in this country, but Europe as well. That is how I stayed positive and strong for my son- though the power and strength of others and God. It has been such an amazing journey. My son lives almost 3 hours away and the day he came home and I saw those eyes for the first time, I cried the whole weekend. I felt his fear and pain. I feel yours now. You all stick together and love him. Love him and give him to God. He is the Great Physician. And pray. Ask other to pray for you, your son, and his doctors. I will keep you all in my prayers. I have such a peace about all of this now, mainly because I am letting go and letting God. Take care, Michelle

[dsarmien]

#1074403

Hi, Michelle — I can’t thank you & Patrick enough for all that you are doing for everyone who has graves disease. Steven’s doctor has given us a name of the doctor who will determine if it would help to also make room in the sinus area. I will find out what his credentials are to see if they are close to what you had described. We live in San Diego, CA. I hope that we are also able to find surgeons who are as talented as the ones who did Patrick’s surgery.

My husband and I are also people of faith. We have been praying a lot, as well as family and friends for Steven. Thank you for keeping my son in your thoughts and prayers. I hope in time, I will learn to stop worrying too much & also just believe that God, my Lord Jesus & Mother Mary will heal Steven.

Michelle, how does one start a prayer chain? It does not matter what religion to me, as I respect all religions so long as they believe in God. Thanks again & God bless you, Patrick and you family.

Regards,
Dolores Sarmiento

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