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in reply to: swelling above the eyebrows #1183685
I never tried anything to make it go down. I tried things for the other swelling around my eyes and nothing ever worked, so I guess I just didn’t bother. Let me know of you find anything that works!
in reply to: swelling above the eyebrows #1183683I had swelling above the eyebrows during my TED relapse. It still hasn’t gone down. My skin is slightly wrinkled above it as well. It also made my forehead wrinkles that were already there, but barely noticeable, much more noticeable. The never ending fun of TED;)
in reply to: Insomnia post prednisone use #1183258Hi ppataram,
I was on oral prednisone for around a year the first time and about 6 months the second time, both for TED. I also had 3 infusions of the IV steroids in that first year, but couldn’t tolerate the side effects. Both times while tapering off the steroids and then for about a month or two after I had pretty extreme hair loss. I probably lost about half my hair the first time and had to cut it short. It took a while for it to recover and start growing back and when it did, it had a bit of a different texture. This was really hard for me because I had always had long full hair. The second time around wasn’t quite as bad because I used a product my hair stylist recommended (Bosley shampoo, conditioner, and leave in treatment).
The insomnia was horrible while I was on prednisone. I would have to take Benadryl every night in order to sleep. It took a while after completely tapering off the prednisone for my sleep to return to normal. My understanding is that it takes a while for prednisone to completely get out of your system. I also experienced some strange muscle aches and tenderness especially in my ankles for the first few months off prednisone as well. It’s a very powerful drug. Sorry you had take it for so long. Glad you are stable now.
-Holly
in reply to: My Graves / Eye Story in Germany and USA #1183524Hi auger,
Thanks for sharing your story! I’m sure it will help a lot of people. I can relate to so much of what you went through with the eye disease. After I was stable and had all of my surgeries, I definitely always worried about a relapse as well. And then I had a relapse. This was after a period of extreme stress, which is what I believe triggered it. Mine lasted about 6 months. Thanks to prednisone there didn’t seem to be any further permanent damage done. I truly didn’t know how I was going to get through it again, but somehow I did.
You look great by the way! Your surgeons did an amazing job. Orbital Decompression is a serious, scary surgery. But it’s also a total game changer, as are all of the reconstructive surgeries.
And to anyone that is going through the TED journey from hell right now, you can get through it!
Take care,
Holly
in reply to: Orbital Decompression advice? #1181363Hi Barb,
I had bilateral 3 wall OD surgery in May of last year. I spent about a week in bed once I got home from the hospital and needed help with everything. Luckily I don’t remember too much from that first week because of medications. My sister came in from out of town for that first week to help out. I would definitely recommend having someone help you out for that first week. For me personally, it was a slow recovery process. It took a while to regain my strength and energy-probably 5 or 6 weeks. I would say it took a full 6 months for all of the swelling to go down although the majority of it went down in the first couple of months.This is a major surgery, so remember not to do too much too soon. Use ice packs frequently in those first few days and make sure they send you home with strong pain medications.
Everyone recovers at different rates, so I’m not sure if you will be up to doing your presentation on Nov. 4th. I was very nervous before my surgery as well. I don’t think I slept at all the night before! I’m so glad I did it though. It made a dramatic difference in my appearance. Each of my eyes went back 6mm. It also relieved the pain and pressure I had been experiencing.
I hope everything goes well!
Holly
in reply to: First symptoms of TED #1181349Hi Diane,
My very first symptom of TED was swelling under both eyes. Next came redness and irritation in one eye only that came and went over the course of about 2 months. Shortly after that I had lid retraction in both eyes. And very soon after I started experiencing pain and pressure, swelling in the tissues above the eye, and proptosis.
You may want to see an ophthalmologist, if you haven’t already, to address your concerns. I would definitely try to see one that has a lot of experience with TED if possible.
-Holly
in reply to: what is happening to me??? #1180308Hi and Welcome. I’m so sorry you are dealing with all of this. It’s hard enough to be dealing with all of the hyperthyroid symptoms-I’m sorry that you are dealing with eye issues as well. I’m also sorry that your husband is not more supportive.
I’m about 6 weeks into a relapse of the eye disease. I was stable for about a year. It’s supposed to be very rare to have a relapse, but I guess I’m just lucky that way. My doctor thought I was having problems due to a sinus infection, but after no improvement, I had a CT scan and got confirmation that the eye disease is back. And boy is it angry. I’m back on high doses of oral steroids which I very much have a love/hate relationship with. Anyway, my first round with Thyroid Eye Disease was pretty severe. Was on high doses of oral steroids for a very long period, did 3 IV infusions of steroids, tried the steroid injection directly under the eye and then eventually had orbital decompression surgery and bilateral retraction repair. I actually even had a case of globe subluxation (that’s when the eye comes right out of the socket-that’s a rarity as well!) I also went for an orbital radiation consult at about 6 months into the disease but decided against it. My personal experience with the steroid injection directly under the eye was not a pleasant one. It was done only in one eye to see if it actually made a difference. First of all, the injection itself was painful. It increased the feeling of pressure in my eye for the first few days and I got little bubbles of liquid on the surface of my eye. And then, no improvement from it at all. Didn’t help with swelling, pain or pressure.
This forum is a great place for support and information. I think one of the most important things you can do when dealing with the eye disease is educate yourself. It has definitely helped me feel more empowered. The videos on thyroid eye disease on the you tube channel that Kimberly provided the link for are really great. There is a lot of valuable information there. I think knowing that you are not alone helps as well. Because who has ever heard of this eye disease before it happens to them?
Hang in there.
in reply to: Eyelid surgery a breeze #1180191This is great news! I’m so glad to hear the surgery went well and recovery is going well!
in reply to: Eyelid surgery scheduled #1180040Hi! Congratulations on your new job!
In my experience, eyelid retraction repair recovery was a piece of cake compared to OD recovery. I only had light sedation and local anesthetic during the procedure because they needed me to be able to sit up and open my eyes to help them gauge the correct height of the lids. 30 minutes after the procedure I was completely coherent and able to walk out of the hospital. I had some mild pain that day, but by the next day was completely pain free and able to pretty much go about my normal routine-Of course with big dark glasses on when I left the house! If I remember correctly there was no bending below the waist or lifting anything heavy for the first week. I was using ice packs frequently and the majority of the swelling and bruising went away in 4 or 5 days. I would say it took a full 10 days for all of the bruising to diminish. I think you will still be able to throw your friend a fabulous shower, you may just need a little extra make up and to wear glasses depending on the level of bruising you still have.
I’m so glad you will be able to put TED behind you soon! I’m sure everything will go great with your surgery! Let us know.
Ok, so good news! I saw my regular oculoplast today (last week I saw his associate because he was on vacation) and he thinks it’s very unlikely that my eye disease has reactivated. He thinks I have a sinus infection that has affected my orbits. I get to start tapering off the prednisone immediately:) If it gets worse I will do a round of antibiotics and if needed will do a scan to see exactly what is going on with my sinuses. This is such a relief! Thanks for all of the support and kind words:)
in reply to: theory for one sided TED #1179976I have TED affecting both eyes as well and one has always been worse-greater proptosis, more swelling, more pain. It even pushed right out of the socket (globe subluxation) once. And now that I’m thinking about it, that is the side that I tend to sleep on more. Maybe just a coincidence, but I’m interested to see what others say as well!
Thanks Raspberry. The steroids can slow things down by suppressing the immune system and calming the inflammatory response. I have even heard stories of steroids bringing flare ups to a halt. The problem for me is that I was on steroids for a very long time for TED and every time I would try to wean off of them my eyes would get worse. I also experienced terrible side effects. So I am definitely only willing to take a short course of steroids this time. I see my doctor again next week and will definitely ask about other options including experimental drugs. Good idea!
I am always happy to share my story if it can help someone going through the same thing. I am grateful for this forum so we don’t have to feel like we are the only ones going through this experience.
It is so important to find the right surgeon. Mine was amazing. Not only was she an excellent surgeon, but she was also empathetic and campassionate-which are not always easy characteristics to find in a surgeon! I did have both eyes done at the same time. My surgeon preferred to do it that way. My surgery took about 5 hours and one eye needed more extensive work than the other. My proptosis measurements were 24.5/25mm before surgery, so I’m not sure why they wouldn’t be able to give you more improvement than 3 or 4mm, although I know each invidual case of TED can be very different.
Good luck with finding the right surgeon!
I had a 3 wall decompression that inlcuded the lateral wall. They remove bone from the inside of your eye orbit as gatorgirly said. I can’t tell anything was removed. It feels completely normal.
I had a 3 wall bilateral orbital decompression in May of last year. I had TED for about 14 months at the time of the surgery. Yes, it was definitely worth it. I had constant pain and pressure behind and around my eyes and once some of the swelling went down from surgery this was completely relieved. I did not have double vision before or after the surgery. I was able to close my eyes completely after surgery-something I couldn’t do before surgery. I did experience numbness on one side of my face after surgery and it went away at after about two months.
It made a dramatic difference in my appearance-each of my eyes moved back 6mm. I had bilateral upper eyelid retraction repair in November and I’m pretty close to looking like I did pre-TED. I’m having one more surgery in April to even up the lids. I have close friends that have told me that I look like I did before TED. I can still see subtle differences, but I think we are our own worst critics. It’s so nice to be able to go out in public and not feel like people are staring. It’s also great to want to participate in social events again.
It is a major surgery. For me, it was a pretty tough recovery. I was in the hospital for 3 nights because they had a difficult time getting the right combination of pain medications figured out. Once I got home, I was in bed for about a week. My sister came in from out of town to help out for that whole first week. I needed assistance pretty much with everything. The good news is I don’t remember much because of medications. Once I got past the first week I slowly got my strength and energy back. It takes a long time for the swelling to go down from surgery as well-took about 6 months for me.
Would I do it all again? Yes, definitely.
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