[dsarmien]

in reply to: RAI #1072235

Hi, there — I had RAI at 35 years of age & was able to attain the normal thyroid level right away. I’ve never had ups & downs, health wise, during the last 16 years. I’ve hiked the Grand Canyon, Napali Coast, traveled all over Europe several times & just made sure I had my little purples thryoid hormone replacement pills with me at all times. There was no internet 16 years ago, but from the literature that I was given, I read that the medication back then could cause liver damage. I did not read anything about side effects of RAI, so I chose this route over medication. It sounds like thyroid medication has changed since so if I were newly diagnosed, I would explore all options carefully. We all should be thankful for the choices available to treat this awful disease.

Regards,
Dolores

[dsarmien]

in reply to: Surgery on April 9th #1072470

Hi, all — My son, Steven, is having his TED surgery on April 20th. I’ve been praying for the success of his surgery and for all who suffer from Graves. I will keep you all in my prayers.

Regards,
Dolores

[dsarmien]

in reply to: Orbital Decompression Surgery #1074425

Thank you, Cynjeep89.

Dianne W., Elf, Ski — You all have a wealth of knowledge. As I mentioned, my son Steven had decompression surgery, but will need more surgery to create more room in the sinus area (they did not touch this area with the first surgery). I hope this will finally help his blurry vision and severe proptosis. Did any of you have blurry vision, anybody reading this??? Steven can only see if he put small prints really close to his right eye… The doctors said there’s no optic nerve damage caused by severe pressure in his right eye, so it’s just really bizarre. I’m praying & hoping the next surgery will help with the vision problem.

Thank you all.

[dsarmien]

in reply to: Orbital Decompression Surgery #1074423

Hi, Cindy — My son had decompression surgery in January this year and still has really blurry vision on his right eye. He will have another surgery to make more room for his right eye, so this time they will take some bone out from the sinus area. I hope this will finally help Steven’s proptosis and blurry vision.

God Bless & take care.

Regards,
Dolores

[dsarmien]

in reply to: Eye Problem Post RAI? #1073237

SJefferys — I hope all goes well with your surgery. I will pray for you.

Regards,
Dolores

[dsarmien]

in reply to: sinusitis #1073086

Hi, Dianne — My son, Steven, had decompression a couple of months ago. He has an appointment tomorrow with an ENT to determine if making room in the sinus area will help, as the decompression helped with the pressure, but the portrusion still needs to be fixed. Radiation has also been mentioned. Should we get a second opinion if either or both procedures are recommended? Did you have these procedures done?

Thanks for all your help.

Regards,
Dolores

[dsarmien]

in reply to: Eye Problem Post RAI? #1073232

Hi, Amy — Steven had RAI treatment when he was diagnosed with GD at age 21. He was doing okay with his thyroid meds. Unfortunately, Steven was a smoker, which I believe might have contributed to the thyroid eye disease. It also did not help that he was not consistent in taking his medication. Steven had to learn his lesson the hard way. He has stopped smoking and is now taking his medication consistently. He is paying the price for not making the right choices as his TED is pretty severe. His left eye, although not great, is okay. He only had surgery on the right eye, & it looks like further surgery is needed, perhaps even radiation.

It has not been easy for us, especially Steven of course, as he is the one that has to deal with TED. I, too, have GD since I was 35 years old and had RAI treatment at the same age. My treatment worked right away and have not had problems at all. I take my little purple pill everyday and go on with my life. My dosage has been the same for as long as I can remember. I guess I’ve been lucky, and I do feel terrible that my son’s GD is so much worse compared to mine. My son always reminds me that it’s not my fault, but nevertheless, I feel bad as he inherited it from me. What I do try to remember is that this disease will not kill us if we get the right treatment. I’m also grateful that there are different types of treatment for both GD & TED available to my son. I also thank all the wonderful doctors treating him. Thank God for such kind, smart and knowledgeable people! I guess being grateful, hopeful and positive is what helps me help my son.

Steven has also been keeping to himself as he does not like to have to deal with the stares, etc. He keeps busy with school and has friends online that he plays video games with. He also rents dvds as he likes to watch movies. I’m sure in time, when his eye looks more presentable that things will change.

Lastly, you don’t need to think that you are being a hypocrite. If you need to act a certain way to be strong and positive for him, although you’re hurting inside, so be it! There is no room to fall apart when you have kids. I also have a daughter who has a six year old child. I tell my daughter all the time that once you become a parent, you need to always be strong for your kids, as they need to be able to count on you at all times. It’s not easy to do. I personally don’t find it easy, but I just strive to do my best. So stay strong & positive, Amy, & I will too. You and your son will be in my prayers.

Regards,
Dolores

[dsarmien]

in reply to: Eye Problem Post RAI? #1073227

Hi, Amy — My son Steven, 26 years old, has GD &TED and is undergoing treatment. He has had eye decompression, but will probably need more surgery to help the proptosis and his vision. He has a good opthalmologist who really cares. Steven’s next appointment is this Friday with an Eye, Nose and Throat surgeon. They will probably need to make room in the sinus cavity area for his eye to make more room and help with the portrusion. Keep on working to find the right help for your son. It takes a lot of work and patience, but this is what we must do. Steven is managing at school. It’s not easy, but he is toughing it out.

Keep on telling your son that you are there for him and you both will fight this all the way and that you won’t give up! I’ve met great people on this site, especially Patrick and his mother. Patrick said that we are Graves Disease Warriors. I do my best to stay positive for my son. It’s hard, I know, but we need to be strong for them. I also pray a lot and have asked friends and family to pray for Steven. I know the day will come when things will be better for our sons. Hang in there. I will pray for our sons and all who are suffering from this disease.

Regards,
Dolores

[dsarmien]

in reply to: Orbital Decompression Surgery #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

[dsarmien]

in reply to: Orbital Decompression Surgery #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

[dsarmien]

in reply to: Orbital Decompression Surgery #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

[dsarmien]

in reply to: Orbital Decompression Surgery #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

[dsarmien]

in reply to: Orbital Decompression Surgery #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

[dsarmien]

in reply to: Orbital Decompression Surgery #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

[dsarmien]

in reply to: Orbital Decompression Surgery #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

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