[snelsen]

#1018196

I am shuffling toward the kind of, sort of, end of two years of TED. Sure interested in hearing from anyone who has had eyelid surgery, especially from folks who have had a skin graft applied to their lower lids. Thanks, Shirley

[grandma]

#1063198

i just joined this group and i have had both decompression surgery and scheduled to have muscle surgery next then the eye lid surgery have u had it yet if so any comment thank you saria

[shadowrider]

#1063199

Hello, I had eyelid surgery in Dec. 2010. I have had TED for 2 + years- and underwent external beam radiation Sept of 2009 to help subdue the effects of the disease. Waited over a year to make sure things settled down as much as they were going to. I had been experiencing double vision, eye dryness, swelling ( of course) and migration of the orbital fat surrounding my eyes.
I always had a thought that when the TED slowed down, I would at least get and eye correction out of the ordeal.
I went to a specialized eye clinic- the Massachusetts Eye and ear infirmary located in Cambridge, MA just outside of Boston. It is part of Harvard Medical school and I can recommend them very much. My Doctor is a God, he did such good work. He operated on one eye at a time, a week apart, under local anesthesia. It never really hurt more than extra strength tylenol could handle. It is now 6 weeks later, and there is barely any remaining discoloration to my eyelids, and minimal swelling- if any. The results are amazing- like brand new eyes- I’m so glad I did it. If I can answer any questions for you please feel free to ask. Good Luck , and good health, Susan P. (Graves in remission for 2 yrs, no medication for 1 year.)

[snelsen]

#1063200

HI Susan, I am 10 days post op upper eyelid procedures. Much different than your experience, for he did both eyes at once. Of course local anesthesia to the operative area, but I was in a "twilight sleep" with propofol, fentanyl and midazolam (Versed) He woke me up several times during the surgery, asked me to blink, etc. I do not remember any of that. My left eyelid was very swollen for a few days, now better. Purpose was to lower my upper lids. Guess I will see final result after muscles heal, about 6-8 weeks.

Did you have lower lids done? The oculofacial eye doc is proposing a SKIN GRAFT from my hard palate!! Not THAT sounds like it would hurt for at least two weeks. Apparently this is "done," and part of the process is to get a retainer to wear while eating and it is healing.

I did talk with one woman here in Seattle who had both lids done, same doc and procedures, and her before/after photos are impressive. My lower lids sag way down, leaving a lot of eye exposed.

I am going to Boston for the Graves’ conference in October of this year. I went to San Diego last year (first time) and just loved it! I think I would like to arrange a 2nd opinion appointment with your doc at Mass. Eye/Ear. My insurance will let me do this, and I would really value a second pair of eyes belonging to a skilled surgeon, looking at my eyes!
Would you provide his contact info?
Thanks, Shirley

[singersue]

#1063201

Hi Susan, I’m so happy I found your post! I’m in MA too and am looking for an eyelid surgeon. I’ve had one consultation but would like to get another opinion. I believe I will just need my right eye lid lowered as of right now (I’ve had Graves since 2007 and the TED seems to be stuck in the "active" phase, so I think I’m just going to go ahead with the surgery.) I would love to get the info of your surgeon. I googled Mass Eye and Ear Infirmary Cambridge hoping to figure it out on my own, but I couldn’t find a MEEI office in Cambridge. Thank you in advance. ” title=”Smile” /> Susan

[Jake_George]

#1063202

Sorry I did not get a chance to answer this earlier.
I have had the hard pallet graft that you are asking about. It is done with a twilight drug. You need to be awake enough to be able to move your eyes, blink, etc. You will also need to be awake enough to use your tongue to put pressure on the dressing they will put on the roof of your mouth to stop bleeding.
Ask your doctor to make an appointment with a dentist to have a stint put in. The stint is like a partial plate that will protect the graft site and give you a ton of relief. I did not ask for the stint and in hindsight it was one of the greatest errors I have ever made.
The graft site will be VERY tender for months. I could not eat any food that was hotter than room temp for almost 4 months. It was almost a year before I could eat spicy. Without a stint you will not be able to use a straw, due to the sucking pulling on the graft location, for months.
With a stint you do not have the hot food, spicy food or straw problem. Well worth asking for the stint. Did I say the stint was the way to go? Just do it.
As for the recovery time for the eyes? It was quick and the results were amazing. I would do it all over again. With a stint this time… Gee I mentioned a stint again.
Also another side thing that the doc did not tell me until later. The graft will produce plaque. I will appear as pink and fuzzy when you pull your lower lid down to look at it. Plaque is good because it shows the graft is healthy. Every few months the plaque will sough off and it feels like I have something in my eye for a day or two. But it is a good thing because the graft is healthy. Feel free to drop me a message here and I will answer any other questions. By the way. Ask for the stint.

[snelsen]

#1063203

Jake, YOU ARE GREAT!!!! THANK you so much for answering. I am running out the door (to play scrabble for the first time in my life.) Incidentally, have you heard of anyone having a stint to protect their hard palate??????????? ” title=”Very Happy” /> ” title=”Very Happy” /> ” title=”Very Happy” /> ” title=”Very Happy” /> ” title=”Very Happy” />
This is the first time I have used one of those funny faces.
I will later. I am still feeling very apprehensive about the graft site! I love Thai 4 star!
Shirley

[RobinMarie]

#1063204

Hi Susan
I heard about your having a eye surgery. Same one I have to have, however my doctor says taking the material out of your mouth is barbarack. They have an implant for this surgery. So you wont have to have upper mouth surgery too. They are talking about four surgeries for me. Lifting my lower eye lids, waiting to see if the muscles hold it, second surgery remove the implants, third surgery fix the muscles, fourth surgery implants back in. I am scared out of my wits. But please dont let them cut your mouth. My Specialist says it is horrible and painful and not needed. I hope I helped. Sincerly RobinMarie

[snelsen]

#1063205

To RobinMarie, then to Jake,
Hi RobinMarie,
I have thought long and hard about whether to do a graft from the mouth (separate grafts and surgery for each eye) or do the implants. i cannot disagree that the graft from the hard palate sounds terrible! From what I can learn, the chance of an artificial material being rejected by the body, is higher. Also, my understanding is that they frequently fail, with the eyelid ending up being retracted again. But I am very scared of the graft surgery, and although it is scheduled, I am really worried about having it, and the pain associated with the graft site. That is why I am hoping to hear from people who are actually glad they did it.
To Jake, more questions
1. How long did you wait between your surgeries? Did you have both eyes done? I am supposed to wait 3 months, but spoke with someone who had her 2nd eye done in one week with a graft from the other side of her palate. My inclination is to have all the pain close together, and get the six months behind me. I love to cook and eat good food.
2. Are you glad you made this choice?
3. Are you happy about the outcome?
4. How long did you eat liquids and soft food?
5. Did you consider artificial implants?
I did get a retainer, which I guess might be the same as a stint. But the only other person I spoke with who had the surgery, said the food got stuck under the retainer, and hurt even more. So she ended up not using it.
Shirley

[Author]

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