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in reply to: orbital decompression #1169716
Checking back in after a long time away. Four years with Graves and it does get much better-just not perfect.
I chose the user name “hope” when I first started posting several years ago. I want to impart the message of hope to each of you as you shared with me. I have had nine surgeries at this point. My eyes were affected by the disease to the extent my left eye “fell out”-spontaneous globe prolapse. There is another medical term for the condition as well. I remember that moment and the others-I was cleansing my face when the eye “popped” out. I laughed for a half hour (and it does hurt). I thought “what else?-bring it on”. Calmly pushed the eye back in . I can handle this. Humor carried me more than once. My work at a non for profit also helped move me toward recovery. Tackling this disease requires finding those tools, relationships, to help you move forward. Different for different people.
I was stared at, remarks were made, people turned their glance away from me and could not make eye contact. I work in an political environment-contact with legislators, large health care systems etc. I had to “reach deep” and I stumbled more than once. I worked with patches on the eyes for months. Worked longer hours to read than I should have as I could not see worth a darn. Fatigue was rough. Husband loved me but the compliments re my appearance came to a halt. I was no joy to live with.
Some of the nine surgeries (for me) were simple like removal of the thyroid. The facial reconstruction and eye surgeries (some) were tougher. One of my surgeries was about 7 hours with a fair amount of pain.
I owe a debt of gratitude to the entire team at Kellogg Eye Center in Ann Arbor. They gave me my life back and my vision. Dr. Douglas, Dr. Archer, and all the staff on the team at Kellogg are the best of the best. My confidence in this team is unquivocal. By the time I got to Ann Arbor-much of the damage was done. I feel I have the best possible outcomes-and then some-that could have been achieved. I count them as my friends.
One eye still does not close completely and my thyroids levels like to move around. My primary care doc feels another autoimmune disease is beginning to present-I don’t know about this. I do know more now to make the right medical decisions for my future and have a great medical team. (This took a heartbreakingly long time to find.) The information many of you have provided was great help.
There is not an “end” in sight. Rather-I chunk it out and take it one issue at a time. My quality of life is all the sweeter for the adversity. I wish all of you a safe journey as you tackle this disease. Bless and Hope (the name of my Golden Retriever who hopes for a Milk Bone each day but has a bit of a weight issue).
in reply to: Two issues-flying and eyelid surgery #1170367Thanks, Kimberly. I appreciated the advice. I thought I might need additional surgery beyond the eyelid repair. I aged a good ten plus years with Graves. Right now, looking forward to eye muscle surgery and no double vision. So-I should not get ahead of myself. Just need some hope that I will look half way normal after all of this surgery.
You do a great job for all of us.
Yes, Mayos in Minnesota. I noticed that they have a dental surgical specialty that does deal with palate issues. I recommend you call for an appointment at the main number and seek advice re what docs to see if you plan to go to Mayos. They will probably have you see mutiple docs in several specialities. There is an opthalmic reconstructive doc there at Mayos as well. He is well regarded. I also know that they have opthalmologists that specialize in Graves.
I thought their endo department was very good-highly rated. But you may not need to see them. I recommend Dr. Marius Stan. Great doc.
Be prepared to stay for awhile. The Mayos system tries to address all issues in one visit-so it could be a stay of several days or longer. Rochester is a great town to spend a few days.
Many of the hotels connect to Mayos by tunnel-a nice feature-especially in the winter.
I think you need to give another large medical center a chance. There are several excellent ones for Graves and corresponding surgical procedures.
I will be checking in on you. Bless.
in reply to: orbital decompression #1169715You have been through alot. I had my decompressions done at Michigan. The eye that was the worse, is still uncomfortable. I have a feeling of pressure on the side of the nose. I am only 27 days out from the first procedure so I had hoped this might resolve. It has become a little better over time.
I asked you so many questions, because I am scheduled to go back to the Kellogg Eye Center in March for the eye muscle surgery. At this point, I don’t know if I need another decompression-I would proceed with it if necessary. I don’t however, want to get out of order with the surgeries and have to redo procedures. I am up to five surgeries with still more to go- want to be careful.
The doc who did my decompressions is out of town when I have the eye muscle surgery so no chance for a consult. Based on your experience, I might ask to see another doc there for an evaluation. I have a tendency to always want to move forward- perhaps too quickly- and am pretty eager for resolution of the double vision.
in reply to: Graves and abdominal pain #1170240While I am much older than your daughter, I have had issues with adominal pain. I do know that there are a numerous autoimmune disorders that can present with Graves. Some cause adominal pain, cramping etc. One is Celiac disease. A simple bood test can detect whether an individual has the disease. Your primary care doc would want to take a thorough history as well.
I developed a pancreatic disorder -spincter of oddi dysfunction- that caused cramping in my side and bouts of pancreatitis. I had scarring of my ducts, so they inserted stents and removed three days later. No discomfort since that time. I had this disease process immediately prior to the onset of the Graves. While they have treated teenagers for this disease, I think it is generally pertains to older individuals. I honestly never spent a great deal of time learning about it as it was finally totally resolved. I am also aware that there is a pancreatic autoimmune disorder which seemed similiar to what I had.
I do agree with others, I think the medications can be tough and can aggravate the stomach lining and cause perhaps some gastritis. My primary care doc recommended something as simple as TUMS to some of the over the counter antacids. I did not have great luck with them. I have found controlling caffeine, and some other foods to help. I do think you want to rule out Celiac disease as I believe that individuals with thyroid disease are at risk.
Best of luck. Perhaps a visit to a gastro. specialist would also help.
Along with all the rest of us, I wish you the best. The docs at the Kellogg Eye Center have given me some hope. I thought I would simply “hurt” the rest of my life. If you have the opportunity for a consult-I would recommend it.
I also would recommend Mayos for good, comprehensive care to deal with the healing issues with the palate and your other problems. You have been through alot but I sense you still have much strength left. You give to all of us on a constant basis. Bless.
The eye googles that Kim refers to in her note are the same as the ones I tried-tranquil eyes. My left eye protusion was so bad that I could not get a good fit. The band around my head finally snapped. If your eyes are pretty even re degree of protusion-these may work for you.
I did like the reduced pressure with the moisture chambers.
The moisture chambers I mentioned in a previous post are manufactured by Medtronic. Web site is http://www.medtronicENT.com. Mayos is great about sending these in the mail as well. I wish I could recall which shop I purchased them from-they have numerous pharmacies, supply stores etc. If you hit a roadblock-I will call Mayos and track down a contact there for you.
They use these for Graves patients and also for people with chronic dry eyes.
Re reusing them, if the adhesive works again-I see no reason you cannot reuse. I found you could get more than one night out of each chamber-you do have to be careful not to have the gel touch the adhesive-lessens the adherence.
Longer term, I am concerned you do not have a better fix than what you have right now. I do hope you could obtain another consult.
I always appreciate the experiences and advice you share. It has helped me in many ways.
I have experienced much of the same issues as you have, Shirley. It often means being fatigued throughout the day because of the constant discomfort. I tried all the gels, drops etc. No need to reiterate that to you-you have been there.
I had immediate eyelid surgery-had some relief. Now I have new pain with recent orbital decompressions-I hope not lasting. While I was initially treated at Mayo’s, I tried some googles they suggested-they sell them in their optical shop. Some have great luck with them. Because my protrusion was so pronounced on one side, I could not tolerate the pressure. They might work for you.
I did stumble upon something that worked really well for me. I purchased them at a shop at Mayos. They are manufactured by NITEYE and are called dry eye comforter eye bandages. They are a clear plastic bubble that seals in the eye’s moisture. I have sensitive skin and appreciated that they have a hypoallergenic adhesive. I would liberally apply the eye gel, then use an eye comforter (moisture chamber) each night. The plastic bubble does fog up-which is a good thing-but you can still see if you wake up in the middle of the night.
The cost was pretty high. I bought a large supply at one time. I swore by them and may need to use again in the future. They really make the eye night time gel work harder. I would wake up with my eyes actually pretty comfortable for the first time in quite a while.
I would try them if you have not used these yet. They are much easier to apply than all the bandaging. Just peel off the protective backing and apply.
Let me know if you need more information.
in reply to: orbital decompression #1169712Can you share some of your experience there? Why did you need four? Did they not do enough on the first two?
How about eye muscle surgery and eyelid surgery at Michigan? I have the next round the first week in March and eyelid surgery the end of April. I am hoping to come out of this with some vision and improved appearance.
in reply to: orbital decompression #1169711I am over 10 hours away from Michigan and Kellogg Eye Center. I stay for several days after each surgery. I had one orbital decompression on the 4th-so I had the pre op on the 3rd and stayed through the 6th for a post op. Then I drove home and returned on the 10th for the next pre op, surgery on the 11th. I either drive or fly to Detroit. My daughter shops for the tickets well in advance so I purchase them as inexpensively as possible.
I also did the same with Mayos. You have to be prepared to stay several days. It does add to the cost, but worth it to me. I want a high volume provider-doing alot of the procedures, with a team concept ( endo, opthalmic reconstructive surgeon, etc.) Aftercare has not been a major problem. I either return for a quick visit or they arrange a visit that coincides with the next surgery. The clinic at Kellogg is on a Friday so it helps that I can drive back on a Sat.
They give clear instructions about when to call if anything becomes problematic and the staff is great about responding to you.
This has worked well for me, it may not be an approach for everyone. Some may not be comfortable not having someone close by to confer with. I tried to access care in my home state but had limited luck. Never did get diagnosed until I went to Mayos-that was well over a year later and the damage was done.
in reply to: time frames for surgeries #1169657I will have a different doc for the eye muscle surgery. I will have this procedure done at the same medical center where I did the orbital decompressions. I have two months before I can have the surgery and I count the days.
I have given up driving, am working for home. Pretty much housebound and I have led an active, active life. I never experienced the major, major downs with this disease despite the fact I lost alot of my appearance (normalcy). The skin aged so much with the eyes stretched out, the orbital decompressions almost made it look worse. However, the double vision is the worse of all. I have tried to always be positive, but this stage is a challenge.
The hope is to give me vision to see straight ahead. Honestly, I don’t even think about what I will do if it is not correctable. My vision now is like looking in distorted mirrors. I run into things, bump into people at social gatherings. I do wear a patch at all times, but it becomes uncomfortable after the recent surgeries.
Surgery in March. I am going into it assuming success. It is the way I am wired and I am convinced staying positive helps with the process. Bless to all of you.
in reply to: Using skin laser proceedures #1170196I would refer you to the University of Michigan, Kellogg Eye Center for information re cosmetic procedures. You can do a search under thyroid eye disease or Graves. If you cannot find it, please let me know.
I had two orbital decompressions in the last month and was pretty heartbroken to see how much I had aged. Prior to the disease, I often heard I looked 10 years younger than my age. Never did a cosmetic procedure or would have considered one, just relied on good products for skin care. I did not mind the natural aging process.
Now, the results are pretty shocking. I have alot of loose skin that is wrinkled. I had signficant protusion, so I guess the tissue gets stretched pretty far. I am like you, and will look for some cosmetic improvements, based upon the advice of my docs. Michigan does mention laser resurfacing, mid face lifts and other procedures. Of course, the recommended course of action needs to be jointly decided with your physician.
I have some ways to go prior to do anything cosmetic-I have double vision now all the time after the decompressions. So the next surgery will be to correct the diplopia. it does seem to make sense to me that any cosmetic procedure should be with a team well experienced with Graves disease.
I found their website information helpful re cosmetic procedures-it was an unbiased source. Different from some of the plastic surgeons advertisement. I hope it is helpful for you as you make decisions. I think it is fair to consider what will make you feel good about yourself and regain your life. Best of luck. Bless.
in reply to: orbital decompression #1169707I understand how you feel and always identify with your comments, Shirley. I have learned from your experiences, mine have been fairly close to yours. I have tried not to let the disease define my life-but it does impose limitations despite the best of attitudes.
My initial eyelid surgeries-pretty much sucked to be honest. The eye felt better but the appearance was less than good. It was frustrating to have the surgeon tell me that the results were good and my local docs thought they were less than desirable. One eye open, one mostly closed. I was told they would get better over time-to be honest-they never did. I was so optimistic initially.
Michigan will redo the eyelids-they did a great job with the orbital decompressions. I had spontaneous globe prolapse with my eye falling behind the lid on random occasions. I had to laugh at this point-how horrific for others to see this. So, I would guess I will need a fair amount of work to have a normal appearance.
Have you thought about trying another medical center for the surgery? I am believer in moving on when you are not satisfied with the results. Seems like your experience has been difficult with the eyelids surgeries.
in reply to: orbital decompression #1169705Had two orbital decompressions-right and left eye in the last two weeks. As others mention, the pain is manageable. I do find that my eyes are sore moving side to side. The left eye required alot of surgery so more discomfort with this surgery. The results were pretty impressive-but my eyes are asymetrical in appearance and I have a long way to go yet.
I do now have diplopia on a constant basis. I was able to focus for a few hours each dayprior to the surgeries. I wear a patch each day-the assessment was that I would not benefit from prisms. I had tried them twice before and had two docs separately provide an assessment-so no surprise they don’t work for me. My advice to all is to realize each of us is unique and sometimes you do not get the magical one time fix. But there is more that can be done- the disease takes alot of patience.
My eye muscle surgery is scheduled for March. Then eyelid surgeries several months later. I may need multiple eye lid surgeries. I am counting the days until the eye muscle surgery-I feel a bit trapped in the house. I am reluctant to do much driving, go to the office etc. Perhaps my confidence will grow re this.
For all my gratitude, I miss the way I used to look. Two and half years with the disease and five surgeries so far.
I would appreciate any comments/advice re the eye muscle surgeries and eye lid surgeries. Has anyone done further cosmetic repair work?
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