[Anonymous]

#1039106

Morning Marty!
Glad to hear your surgery was successful! The facial numbness is actually a “blessing”, so to speak. The numbness is caused by the surgeon going through a nerve, which in turn allows for you to be pain free. When Jake had this, he too was concerned about the numbness. His surgeon explained to him that he should be grateful for the numbness, otherwise, there would have been pain. Jake learned to live with the numbness and WAS grateful for no pain! As for how long it lasted, I will have to get him to answer you on that one. I know it was an irritating feeling for him for about 6 months and he MAY still have a slight numbness in his front teeth. Will have Jake get back to you on that, okay?

Happy to hear you are on the mend!

Best Wishes,
Jan
Online Facilitator, NGDF

[Anonymous]

#1126927

I had the orbital decompression on both eyes in Nov.98.I still have a lot of numbness on the entire right side of my face and lip.I wonder if it will ever go away. My dr.says yes.It’s mild compared to rest of the problems built into Graves.

[Anonymous]

#1126928

Oh, where to begin. My 15 year old daughter Kelly has Graves’ and has to have this surgery. Jan and Jake have been wonderful answering our questions. Now we can’t have the first surgery til July 18 because of scheduling difficulties with both surgeons (summer vacations ). I just hope she can have the second before school begins. She already told me to cancel our vacation plans (which were Aug. 5 because she is NOT going anywhere with one eye bulged and one not. Hopefully I can get her to start school in September. What a nightmare this disease is. She’s so good about it but sometimes she just freaks out and my husband gets mad but I have to tell him that she is scared, and mad, and sad, and she is just venting. I cry for her every day. Anyway, thanks for listening. Any suggestions of what to do during the waiting between surgeries will be welcome. You guys and this board are the best. You are all in my prayers.

[Anonymous]

#1126929

In this circumstance, I feel that it is imperative that you keep a positive outloook, both for your sake and your daughter’s. Sometimes it is easy to focus on what is wrong in a situation when it is more important to focus on what is right. About 10 years ago i was severely burned and was told by 3 different doctors that I would never walk again. My grandfather decided to get involved and helped me focus on what I was able to do, not what I couldn’t. If one is surrounded with the negative, it is easy to become enthralled in it. Yes, I will never ride a bicycle again, or run again, but I get out of bed each day and am able to walk, without a cane even. It wasn’t easy, for me or my family, but that is what family is for. Your daughter is aware of the upcoming surgury, don’t try to keep her focused on that, she is a child and her remaining to be that should be your #1 goal.

[Anonymous]

#1126930

Hello Karen–I’m a mom too, and my heart aches for you having to watch your daughter go through the emotional effects of Graves’ and the disfigurement from TED. It’s been hard enough for me to deal with in my forties, and I can imagine how difficult that must be for a 15-year old in today’s world with the pressure to be beautiful and perfect so strong. It’s tough enough to be 15 even when health is good.

Before any of my eye surgeries I relied on a good pair of sunglasses, even indoors. Of course, that doesn’t hide the eyes perfectly. If your daughter is extremely self-conscious about the eye that hasn’t been operated on, she may (or may not) feel more comfortable wearing a patch over that eye when in public.

I’ve just had my third eye surgery (the second on my retracted upper eyelids), and also learned from my doctor that presently there is no procedure available that will raise my retracted lower lids (I’ve already had cheekbone implants and hard palate graft with no success.) They are working with rabbits on graft materials that will work for lower lids such as mine, and he hopes to have a procedure available in several years. In the meantime, I’m going to have to learn to live with the “sleepy” look.

I was really disappointed to learn this and it’s taken some time to deal with it emotionally. I’m trying to be happy that at least my upper lids are “fixed” at last.

Probably what’s helped me the most is talking to others who have been through it. Invite your daughter to email me, or post on this board.

One suggestion is that if your daughter’s surgeries aren’t complete by the time school starts and she is still so upset she doesn’t want to go like that, talk to the school about arranging for her to do work at home until after the surgery.

Best wishes, and please let us know how it goes.

Dianne W
NGDF Asst. Online Facilitator

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