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in reply to: TED surgery complications #1066251

Thanks you for your replies. Keep’em coming, especially from anyone who had this problem and it was later corrected.
The docs don’t say much except to lubricate. I am still in the active phase, and presume, if I am EVER in the fibrotic stage, I can have correction with eyelid surgery, after my predicted numerous strabismus surgeries. That seems like a LONG TIME from now, it is hard to consider it. I will ask again for an rx for drops and lubricant. His nurse mentioned it yesterday, but when I asked him, he said he was "reluctant to do that." I do hope the procedure for tear ducts help, it is an office thing, and they can be removed.
Right now I am in the stage of discouragement, thinking that this will never ever end….
shirley

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in reply to: TED surgery complications #1066248

sorry, my post is all over the map, cause I am so discouraged about not being able to shut my operative eye after OD one month ago.
I was so grateful to see lylesmom subject title this morning. It fits my situation perfectly, and this morning i am super discouraged. OD surgery 2/210 cause of compression on the optic nerve. Result is that my visual fields have improved a LOT, and my eye is definitely back in the orbit. BUT I cannot shut my upper lid now. That is a BIG problem, and the logic is not there, for it was never an issue before the surgery when my eye was really bulging out a lot! Of course I have the usual dry eyes, much tearing, using eye drops like a crazy person, and trying to find a lubricant that does not sting my eyes so badly. I saw both two docs yesterday-the neuro-opth and the eye surgeon, who did the lateral side of the OD. They just said to keep up with the drops.
The test for dry said that my left eye was VERY dry. I see the ENT doc today who did the medial side of the OD endoscopically guided by a CT. I am still in the active phase, maybe! Who knows?
My big concern. I don’t want to end up with a corneal abrasion, or a corneal transplant because my cornea is so damaged.
Do you think one of the cranial nerves that controls the upper eyelid was damaged by the surgery? Why can’t I close it now, when I could before. What can I do about this? Has anyone else found that eye lubricant and eye drops are terribly expensive? Does anyone order them online?
I really need some help and encouragement this morning. Shirley

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in reply to: Endoscopic Thyroidectomy #1066319

I agree re the endoscopic approach through the armpit. There is very little evidence based information about this, and all I could find were a couple ENT practices, whose websites were very heavy on claims and drama. Perhaps it would be helpful to you to try to find someone who has had this procedure. I have had it, and the incision is almost invisible. Different people are different relating to "scars." Some people are keloid formers, some are not. If you have ever scratched yourself and it has healed, take a look at it. If you can barely find it, that is probably what your incision would look like.
I would consider that this is not a good reason to find someone who does this procedure. Consider following the website suggested by one of the facilitators, I do not recall which one, I think Bobbi or Ski, but it is in this topic.

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in reply to: thyroid injections? #1066354

Hello, I am sorry that your sister has so many issues at the same time. Is she seeing an endorcrinologist for her thyroid status?
If she is not, I highly recommend that she find one, and get a fresh look at her situation. It has been my experience that getting second opinions is always a good idea, and most doctors recommend it, feel comfortable with it, will help send records to the person she chooses. It is my thought that if a doctor is defensive about it, that is not a good thing, but that is my opinion and my experience.

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in reply to: strabismus surgery #1066400

I would like to weigh in on strabismus surgery. This is little different that what Bobbi said.
Stabismus usually occurs in infants and kids. Not double vision, but "lazy eye." One eye becomes stronger, and the brain tells the other eye, or the lazy eye, not to try to align for vision. Amblyopia is the term usually associated with this disorder. You usually see a child with one eye wandering in another direction.

Pediatric surgeons do the strabismus surgery. We have to wait until we are in the cold phase for this surgery so the measurements are consistent over a long period of time. That is why, when we have our fibrosed eye muscle, and continue with double vision, we are referred to pediatric surgeons, for they are the ones who do strabismus surgery. It is common to patch the strong eye, to make the weak eye "work" to strengthen the muscles and direct the brain differently.

It is my experience that only pediatric surgeons do strabismus surgery. Many do only kids. Out of that group, some of them see adults, usually TED patients.

As surgeries go, it is an "easy" surgery, and done for TED patients to detach and re attache the insertion of the affected eye muscles. Kids have a general anesthesia, TED patients can have a local with sedation. The whole purpose is the wonderful goal of getting rid of double vision. I CAN HARDLY WAIT TO HAVE THIS DONE!!!

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in reply to: Embarrased but recognizing that I need some help. #1066514

I definitely am not the person to address diet and supplements, for other than calcium and vitamin D, that is the extent of my supplements. Pretty much the same with food. I eat well, eat anything I want, and portion control is easy for me. I think you are doing a great and wonderful thing for yourself by eliminating aspartatane.(SP) I don’t a lot about it but, it is my impression that there is some compelling evidence that it is not a good choice for anyone.

There are numerous posts on this site about TED. I am in the middle of TED. I am sure the facilitators will comment on this subject, also. It is not clear to me if you re seeing a neuro-ophthamologist, or an eye doc specializing or familiar with TED.
That is a must. The course of TED has two phases, inflammatory called the hot phase, and fibrotic, called the cold phase. It can last as much as three years. After the cold phase is stable, depending on your needs, OD and/or strabismus surgery, followed by eyelid surgery is frequently done. Scratchy eyes, dry eyes, double vision, bulging eyes (proptosis or exopthalmus) are all part of Ted. Not everyone has all the symptoms. I however, do have all of them.

I am an RN, too, and an information freak! I love copies of everything, and think it is wise for everyone to do this. I just had and OD three weeks ago, it was a good experience. When I leave the house, I need my billfold, car keys, eye drops and eye ointment!

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in reply to: HypEr vs. HypO #1066418

I would like to comment about heart rates. No, it is not really the same to have a fast heart rate or a slow heart rate.
A fast heart rate, called tachycardia, of 130, is too fast! It is like driving your car at 60mph in first gear. It is not efficient, the heart is racing, and that is not good. A slow rate, or bradycardia, is very efficient, and better for the heart. Having said that, there is a range of normal heart rate, usually below 90, above 60. Athletes, or people who exercise, usually have a slower heart rate. Of course, it is possible to have such a slow heart rate that you are not having enough O2 circulating, and a person may feel dizzy or faint. Generally, this is related to drugs for hypertention or other cardiac meds that need to be adjusted.
I am sure you will hear from others on this subject. Hyperthyroidism has a very fast heart rate, sometimes dangerously so.
130 is to fast, 160 and above is cause for concern, requiring a cardiologist or an endocrinologist who is familiar with thyroid disease.
I had a thyroidectomy, because meds simply did not control my hyperthyoidism. Then you can be kept in a normal and healthy euthyroid state with thyroid replacement. Today I certainly would consider RAI, which was not offered at the time, for I was 24, and it was a long time ago before RAI.
I think have a conversation with your docs about your questions would be helpful, of course. But the wonderful thing about this site is that you can hear the experiences of others who have been there.

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in reply to: My Story. #1066757

H Laura, I am not sure how old you are now. But the surgical procedure called orbital decompression could help you with your bulging eye/eyes. An eye doctor specializing in this procedure is the right person to talk to, perhaps a couple of them.
This darn thyroid eye disease is very, very frustrating. This procedure is not cosmetic, but medically indicated.
There are LOTS of posts on this subject. I just had and OD, and my very bulging eye now looks normal.
Best wishes with browsing for more information and support.
Shirley

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in reply to: Scared and Frustrated #1066631

You did a great job making your decision. I had the surgery, was extremely happy that I did it. I was 24 at that time, got pregnant just when we planned, a few months later. All good.

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in reply to: New on here, considering OD after graves from 2006 #1066461

I just had an OD (Feb 2) The recovery was easy. I raised the head of my bed, used a lot of ice. My eye is not bulging at all.
I do have double vision and I still have it. I had the OD because there was pressure on my optic nerve. Unfortunately, I am still probably in the inflammatory phase, but optic nerve issues are an indicator to for an OD to preserve vision, even it it is preferable to do it in the fibrotic phase.

as you surgeon will tell you, there are several different approaches that are used. a lot of those differences are based on where they trained and what they learned. Of course you want the surgeon to do the approach that he/she have chosen to do. It is fine to want to look as nice as you can, and it is clear that you are not happy with the appearance of your eyes.
Of course any surgical procedure has risks, but I would have an OD again in a heartbeat. I think there has been some great pioneering work done in the UK on TED. I am not sure what the NIH system says, but I suggest you get a second opinion if that is possible. But that is very common here. In my case, I saw several surgeons, and it increased my confidence in having OD done. Hope this helps a bit.

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in reply to: RAI with eye involvement #1066497

My experience has been that the endo referred me to a neuro-ophthamologist to evaluate my eyes. I had a lot of tearing, double vision in some gazes, and my eyes began to protrude a bit. Perhaps you might ask your endo about this. It is very good to have a baseline, and continued monitering of your eyes by an ophthamologist who is very familiar with Graves.
There are several posts by the facilitators that provide excellent explanations. They can probably find then and post them faster than i can find them. If you do have eye involvement, there is a path of stages that the eyes tend to proceed through, the inflammatory and then the fibrotic stage. Have a discussion with your endo about your eyes. I wish you the best of all things, and I am sure you will receive many other helpful comments.

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in reply to: Scared and Frustrated #1066623

Hi, I am so glad you had a good experience with the surgeon. I sure can relate to your dilemma and concerns about either RAI or surgery. Knowledge is power for me, so the more I know and understand, the more confident and secure I feel. You are in a good place right now, have a nice weekend to mull it over, (but there is NO deadline!) and you know that both options are good ones! You’ll make a good decision, and it will be the right on.Yea!
I love this site, it has been a great help to me. I was so afraid of having and orbital decompression(OD) and this site helped me so much. I hope I can provide the same help to others! I am ten days out now.

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in reply to: Question When to consider eye surgery for graves #1066526

I am not sure where you live. I had double vision that really got my attention of April of last year. Bulging eyes, dry eyes, eyes that tear all the time I am seeing a neuroophthamologist, plus an orbital surgeon, plus a stabismus eye surgeon (eye muscle.) This is a hellish disease, for I want ACTION, and I am in that phase where it is difficult to determine when/if I have progressed through the "hot" or inflammatory stage, where the antibodies are still attacking they eye muscles, and when they have done all the damage they are going to do, then you/we/I are in the "fibrotic" or cold phasel When our eyes are changing all the time, by our own observations and by their measurements, surgery should not be done, for they need accurate measurements and information before they proceed. (I had a subtotal thyroidectomy for hyperthyroidism several decades ago, and just developed thyroid eye disease in the past year or so. The prisms did not work for me, either. My inferior, and to a lesser exent, my lateral and medial muscles are affected. So I can look down with no double vision, but have it when looking ahead. So I have been impatiently waiting for this dumb disease to run it’s course. Plus decreasing thryoid, which makes me cold, and tired, as I try to move away from taking too much thyroid.

I just had an orbital decompression, for the only medical indication to have one, at my stage, and that is optic neuropathy, which means that the optic nerve has too much pressure on it and is being damaged, and something must be done. Both eyes are bulging out a lot, but especially the one I had surgery one. I mention this, cause the neuro-ophthamologist is the guy who is "the keeper of the optic nerve." When I got blurred vision, had more troubles recognizing colors (red not as sharp) and when I had visual fields with the machine with the little white light, it showed that I was losing peripheral vision especially looking laterally.
So, this is a start, and I used myself as an example, for I was scared to death to HAVE to have an OD, but I had to because of the threat to my optic nerve. I am now 6 days post-op, and the whole thing has been a breeze compared to what I thought it would be.
I am glad you found this site, there are really good people here. You have gotten some good responses. The facilitators are great. If there is anything I can do to help you, just ask. Hope this helps a little bit. I sure understand about the double vision. This whole thing is life changing, but it WILL have an end. Shirley in Seattld

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in reply to: ORBITAL DECOMPRESSION-questions @ post-op #1066857

Re OD. Did anyone have much nausea? I am trying to get someone to write an RX for soluble ondansetron (Zofran) but there are soooo many gate keepers, I cannot seem to make it happen. It makes so much sense. My OR time is over 3 hours, for there are two surgeons, and from my experience as a post-op recovery nurse, the longer the general, the more likely that nausea and vomiting is a problem. Of course, I don’t want to do that with a new OD where there is a real problem of bleeding postop if there is strain and pressure on the eye. As a last resort, I am calling my son who is an MD, to call the dumb thing in for me so I know I have it if needed. When I talked to the hospital recovery nurses who called, I mentioned it, but was told, "they never do that."

Thanks for your response. Tomorrow is the big day, I am trying to get ready. But the biggest issue now is a clogged toilet, just what i need! Put a new Toto toilet in the basement (finished) to replace the water guzzler. The result is that the first person (a guest) feels terrible, for now the thing is clogged completely. We have used a plunger and a snake, no luck, so I am leaving a key for a drain guy I have never met to come to check it out tomorrow while I am in surgery.

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in reply to: Dear Thyroid #1066841

Hi Marpo, thank you for all your initial support when I first joined this site. I am looking forward to being in the cold phase, and having this eye situation as resolved as it can get.

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