[mdrn1]

#1074404

Dolores….sounds like you have already started a prayer chain! Your family, friends and you have started it. If you belong to a church, ask others to pray for you and your son. If you have e-mail friends, e-mail them and ask them for prayer. Work friends, etc., etc. Before you know it, you have a prayer chain going. You will also have many people asking how your son is doing. They will be thinking of him and wondering if their prayers are being answered. Make sure you periodically let people know how he is. They need to know that God is hearing their prayers and they need to hear how God is moving in your son’s life as well as yours. This is such an encouragement for everyone involved. You will also begin to see the effect prayer is having in your lives and it will enable you to have such a sense of peace about your situation and to know and trust that God is taking care of you.
The one thing that I have seen with my son and Grave’s disease, is the way he has changed emotionally with this disease. He is not the "laid back" Pat I use to know. I hope one day, he will not be so stressed out by all of this, but it is he who is dealing with this disease every day and not me. I’m so proud of him for being able to cope as well as he has been.

[dsarmien]

#1074405

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

Dianne

Hi, Dianne — Steven’s opthamologist has given us a name of an eye, nose and ear doctor, to determine if making more room in the sinus area will help Steven, as this was not done when Steven had the decompression surgery early January. The pressure in the eye has gone down, but there is still quite a bit of swelling, so his doctor also suggested radiation in the back of the eye. Did you have radiation done in your eye(s), Dianne, or has anyone? Could you please tell me if it helped and do you have any data related to future cancer risks?

Thank you, Dianne, and to all of you for any information you are able to provide. Take care & God Bless.

Regards,
Dolores

[DianneW]

#1074406

Hi Dolores,

I must have missed a lot of these posts, as I’ve been dealing with something this last week, but am so glad to know Steven has some options now.

I haven’t had the orbital radiation, but my husband’s brother had it, and it helped him tremendously. However, I understand it only helps during the active phase. Is Steven’s disease still active?

As for risks of cancer, that’s something I’ve never heard mentioned, but will do some research on the issue. It does cause early cataracts, which my brother-in-law has, but those are easily dealt with compared to other problems we can have. On the whole, for my bil (who was a smoker and a severe case, even blinded for awhile), the radiation reversed the disease completely and kept him from needing anything but strabismus surgery. Now, he looks almost like he did before TED. He does have dry eyes, but they aren’t severe like mine are. He was able to quit smoking, and that’s helped.

I’ve also known people who had success using an Otolaryngologist to aid in making room in the sinus area during a decompression. I’m sorry Steven has to go through this again, but am glad he has a chance to get more relief.

[dsarmien]

#1074407

Hi, Dianne — I hope all is well with you. I’m always so glad to hear from you. We feel so blessed to find people like you, with your wealth of knowledge and compassion.

Yes, Steven is at the "hot phase" of TED. He has an apppointment with an Otolaryngologist on March 6. My understanding is that unlike the decompression surgery, this procedure will not be as invasive, as they are only going through the nose. I also understand that recovery is not as long.

I’m glad that your bil is doing well after having had the radiation done. Anything you can provide regarding cancer related risks would be truly appreciated. I need to learn as much as I can to help Steven make the right choices. Thank you so much for all your help and kindness.

Regards,
Dolores

[tbuttery5]

#1074408

Delores and All,
I’ve read all of the recent posts . . . the are both informative and comforting . . . am still scared about the pain, length of recovery as both eyes are being scheduled separately, possibility of severe double vision, possibility of follow-up surgery! All of this is making me wonder if this surgery is worth it if I am so worried. What made any of you take the final step to say DO IT?
Thanks!
Tamara

[judy]

#1074409

Hi Tamara,
I am having surgery March 24th . I know exactly how you feel
I am having the decompression in one eye and also the bags under and on top
of my eyes removed after I heal they will adjust my eyelids. I am worried
I see my reflection in the mirror and cry I hate the way I look.

But doing this surgery could make me smile again…

Judy

[dsarmien]

#1074410

Hi, Tamara –I realize the whole thing is very difficult, because my family is going through the same thing, but do all you can to stay positive. As for my son, Steven, he keeps really busy with school & tries his best to stay tough. The eye problem needs to fixed, and it’s not on option for Steven to not do anything. So what Steven, my husband and I are doing is asking a lot of questions and trying to find the right answers from his doctors. I’ve also been doing a lot of research on the web. The GDF website has been of tremendous help. I’m also very grateful that there are several treatment options, and our job is to examine them all, then make the decision that you feel is best. I’m grateful that Steven has very caring doctors who would very much like to see him get better soon. I know they are doing their best. Steven has an appointment with the surgeon that will more than likely be the one to do the surgery to create more room for his eye through the nasal area. It’s in two weeks, and I’m hoping that he will say that the surgery will help Steven, because we all know that Steven needs more help to improve his vision and the portrusion in his right eye. We pray that God will help us with each step we take. This is how we keep going. Trusting the doctors’ opinions and most especially God.

I wish you all the best and will incude you in my prayers.

Regards,
Dolores

[judy]

#1074411

Hi Dolores,
Just wanted to say I watch this post constantly You seem like a terrific person. I did see pics of your son after the procedure believe me it scared me at first.
But after following your story I made the decision to go for it..
Did he stay in the hospital over night?
I’m having a outpatient surgery so I go home after, thats the part I’m worried about ” title=”Confused” />

Judy

[dsarmien]

#1074412

Hi, Tamara — My son, Steven, does not have any pictures posted on the web. Perhaps you’re referring to Patrick’s web site?

Anyway, I wish you the best on your surgery. I don’t know if your doctor has mentioned it, but there needs to be someone to drive you home and stay with you for at least 24 hours after the surgery. Steven did not stay at the hospital overnight. He went home a few hours after the surgery, but I stayed with him for a couple of days, because you are not supposed to do any heavy lifting, etc. Please find someone to stay with you if you are not going to stay at the hospital. If you don’t have anyone who can stay with you, I would explain this to the doctor, so they can arrange for you to stay at the hospital overnight.

Good luck. I will include you in my prayers.

Regards,
Dolores

[mdrn1]

#1074413

Hi Tamara,
I’m Michelle, Pat’s mom and you may have seen his Blog as well as his U-tube sites. He had both eyes done on the same day (doctor’s had only planned on doing one, Pat originally heard two- long story) plus, the sinus doc did his part- so because of that, his surgery lasted almost 8 hours. The doctor said the surgery usually lasts 4 hours per eye. Because of the long surgery, he stayed all night at the hospital and went home the next day. Because they did both eyes, he stayed with me for almost 2 weeks. The Dr. made a bottom lid for the right eye, but because of the swelling, he didn’t do his left bottom eye lid, so he did that in November when he did the muscle surgery. We took him home the same day from his muscle surgery. Both of those surgeries were in the hospital, but his next one in a couple of weeks, will be at the Dr’s office. They will be removing the excess skin above his eyes.
This surgery has come such a long way over the years. Even though it’s not an everyday surgery like your gallbladder or something done more often, they do have Dr’s that now specialize in this surgery. We are so grateful for that!
Learn all you can about it. That’s what my son did as well as asking a ton of questions. The more informed you are, the better. I went with him to all his appointments (he is not married) and that way we both heard the same thing. Sometimes with the Grave’s disease, he was not remembering all what the doctor was saying about things- like one eye instead of two! ” title=”Wink” />
Take care,

Michelle

[Ebonyeyz28]

#1074414

Hi Everybody!

First, I am so GRATEFUL to God for allowing me to stumble upon this thread! Secondly, I’m grateful for all of you and the knowledge and encouragement that you’ve shared/offered!

I am scheduled for Orbital Decompression on March 20th (right eye) and March 27th (left eye) and, although I feel like my prayers for being able to look somewhat "normal" have been answered, I’m scared out of my mind!I’m sure this is par for the course but I worry about the pain and, more than anything, I fear that I won’t get the results that I’m hoping for! I keep telling myself that ANY relief from the constant pressure in and around my eyes and having at least some of the swelling and bulging go away will be worth it but, in my heart, I’m hoping for a drastic change and I’m not sure how I will feel if that doesn’t happen.

More than anything, I know that God is watching over me and his desire over my life is all that matters but I can’t help but be a little bit selfish and want back the days of being able to wear pretty eye makeup and actually draw attention to my eyes versus hiding behind sunglasses or trying to wear clothing and accessories that take the focus away from my face!

Sorry for the "downer" post but, for the first time, I feel that I have come across a group of people who actually understand what I’m feeling so the flood gates kinda just opened up! LOL I will remember all of you in my prayers and I’ll keep you posted on my progress, pre and post-op!

{{HUGS}}

Shelby

[elf]

#1074415

Hi Shelby (Ebonyeyz28)

All these years that passed since the start of GD have had some aging effect on us, so even if we do get our eyes back in place, we are going have to be 5 years older (or however long it’s been for a person since TED started) than what we used to look like on the pictures 5 years ago.

But having your eyes looking normal (not bug-looking) is worth it, don’t you think?

I do understand your longing for all the things feminine – makeup, earrings, anything that attracts attention to your face – we have missed it for all these years.

Good luck with your surgeries in March! I’m still waiting to hear when my surgeries are scheduled.

[Ski]

#1074416

Hi Shelby,

That wasn’t a downer post at all, we understand!! It sounds as if you are going into this completely informed, so that’s wonderful. It’s true, you might not ADORE the new look immediately, but something tells me there’s going to be a lot more relief than sadness. I’m sure you know that further steps can be taken afterward, to "tweak" the look back into what you remember. Does your doctor have a good "before" picture of you? That really can help. You’ll get there, and you’re right, the relief from the constant pressure [i:3073o8w2]will[/i:3073o8w2] be worth it. Let us know how it goes!

[DianneW]

#1074417

Shelby,

Let me caution you that you won’t walk out of those decompression surgeries with the results you want, but you’ll have a beginning. If you are interested in seeing some realistic before/after photos just send me your email address by private message and I’ll send you some photos of what I looked like a few hours after the decompression and then what I look like now, so you’ll have an idea what time does. And I WAS thrilled with my results at the time.

Good luck with your surgies. I believe you’re going to be happy!

Best wishes,

[Maria]

#1074418

Judy my surgeries were the best thing i ever did. I had an excellent doctor (are we allowed to post hospitals here?) The surgeries restored my eyes to better than normal. The cosmetic one took 10 years off me.

[Author]

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