[msmanatee]

in reply to: SURGERY TOMORROW-palatal graft to lower eyelid #1169141

I haven’t been on the site lately but remembered you were facing some tough choices, Shirley. I’m very happy for you and look forward to you posting again soon.

[msmanatee]

in reply to: Will eye problems (diplopia) continue to escalate? #1169518

Hi runbarb. I’ve been in the throes of moderately yukky TED, diagnosed in June. I have some double vision (up and sideways). Driving is an issue. I do a couple of things to (hopefully!) lower my chance of an accident. First and second, drive with extreme caution and as rarely as possible. I have not driven on a highway (above 50 mph) since I got TED. I hope you will experiment with night driving a little bit now, if you can stay safe. I’ve learned that certain situations call for extra caution. For instance, when I want to switch from the left to the right lane, I can’t throw my head back to glance to make sure no car is sneaking into my blind spot. When I do that, my eyes wobble and it’s very disorienting. Instead I plan that lane shift way out in advance and do not look back (only use the mirrors). I also find having someone in the car with me very helpful (he’d drive but is only 14 ).

You might consider talking to your doctor again about Prednisone. I hate the side effects but it’s worked for me somewhat. I have less pain, less redness, less grittiness, and especially less photosensitivity than I did before taking it. I have been on it since June 15 and am tapering down now since I have been on it more than the "normal" amount of time. It’s not a magic bullet but might stall your symptoms. One eye doc said I’d need orbital decompression "very soon" two months ago. Knock on wood, he may be right but so far so good. I’m also eating a couple of brazil nuts each day (selenium) for swelling and think it helps a little. I’m sorry you are dealing with this but you are definitely not alone.

I hope you will feel better soon.

[msmanatee]

in reply to: Recurrence of TED after orbital decompression surgery?? #1071529

I wish I had something definitive to offer but I am new to TED so my story is just beginning. Like you I do not have elevated T3 or 4 but unlike you, I have suppressed TSH and elevated TSI so they are calling it Graves. I just want to thank you for telling your story. It wasn’t until I found stories like this that I realized how much misinformation is out there. We have a member who got TED decades after her thyroid was removed (talk about an eye opener)!

I hope your eyes calm down soon and thanks again for sharing.

[msmanatee]

in reply to: Why avoid radiation treatment/thyroid removal? #1061087

Bobbi wrote:And, BTW, msmanatee, oculoplastic surgeons are not "just" cosmetic surgeons. I think you may be misreading the "label."

I am aware that oculoplastic surgeons are not only cosmetic surgeons. My point was that in my area, cosmetic surgery is their main business. There are very few TED patients in this small city but plenty of cosmetic surgery customers as it’s a wealthy elderly population (Florida retirement mecca).

@Kimberly, thanks for that link! I went to see a new endo, who also confirmed what that article said. Quite a relief after being dismissed as misinformed for the past two months.

[msmanatee]

in reply to: Why avoid radiation treatment/thyroid removal? #1061083

I am avoiding radiation treatment and thyroid removal because I’m not even hyper yet. Isn’t going by symptoms as reasonable as any other decision pathway? It’s not like you do one or the other and bang you are cured.

Only my TSH is low (antibodies high). My doctors disapprove and want me to choose one or the other "ASAP" because I have moderate TED (eye disease). They think getting rid of the thyroid will "stop the antibodies faster" and prevent worse eye damage. When I confronted them with info suggesting that disabling the thyroid does not necessarily stop TED, they rolled their eyes and said, "Well there are no guarantees…"

I’m also being told I must prepare for imminent orbital decompression surgery, that it’s the most difficult kind (no fat to remove so only very precise bone removal). Who in their right mind takes on an elective procedure while facing mandatory emergency surgery? I’m looking for a true TED specialist, have received some suggestions, welcome any more. The so-called TED docs here are ALL cosmetic surgeons, even the ASOPRS members. Have just heard good things about Johns Hopkins’ eye hospital.

[msmanatee]

in reply to: 22 Weeks Post-RAI, Finally Hypo and TED Onset #1061111

Hi gatorgrly,
I haven’t been hypo but if your RAI-related prednisone treatment was well-tolerated, perhaps the new ophthalmologist might prescribe that again for this new swelling? Unfortunately I haven’t discovered the protocol for length of time to stay on pred for TED. I’ve been on it for a month and was just instructed to begin tapering… not because anything has changed, simply because that’s what we’re *supposed* to do.

Sorry to hear you are going through this!

[msmanatee]

in reply to: TED symptom relief? Hot phase #1061381

I just love the irony of these little tiny tubes and bottles with their little tiny lettering for TEDs!

[msmanatee]

in reply to: Insomia relief? #1061189

Mike,I have a few of the same symptoms but am sub-clinical hyperthyroid (my hormones are still normal) and have had no treatment yet, either. I can sleep, usually three hours at a time but my ophthal specifically recommended benedryl for insomnia, so do ask your doc. Maybe a smaller dose would be more tolerable. I’m saving my xanax for emergencies. ” title=”Very Happy” />

[msmanatee]

in reply to: Remission vs. Cured #1061231

I thought remission just means you are a-symptomatic.

[msmanatee]

in reply to: TED symptom relief? Hot phase #1061379

No, thank YOU, Melsima! I am going to ask about your ointment this week!! I’m on oral pred and drops, swelling to beat the band, nothing ever changes.

I think you’re probably right about the ophthal… I had a similar experience in a fair-sized city, diagnosed alleric (for the first time ever) and treated for that for two months prior to finally getting TED diagnosis.

Hope you continue to feel better.

[msmanatee]

in reply to: Vision emergency symptoms? #1061293

jansm and Shirley,
Thank you for your insights. I appreciate the various distinctions you are making. jansm, I have been thinking about going to Mayo for a second opinion. My regular ophthalmologist said he didn’t think it was necessary because there is nothing unusual about my case and most treatment would need to take place close to home. He thought it would add an unnecessary layer of complication/confusion and that these various options are controversial. I am still very anxious about all the crossed wires between these physicians, enough that even a single, unified second opinion may be worth the price. Because right now, while everything is still up to me, I feel the quality of my choices boil down to "garbage in, garbage out."

My endo prescribed prednisone but she wanted the reguarl ophthal to do it. He thought she should do it because she’s an endo. My neuro-ophthal IS an oculo-facial surgeon. He advertises face and neck lifts as well as various medical eye surgeries. I am told he knows more about TED than anyone around here but he does not seem as competent as your neuro-ophthal, Shirley. He does no testing, no pressure monitoring. Well, he did a color test but it was clearly to placate me because I complained that it had not been done. He just ordered the other ophthal to do a new visual field test that the former has never heard of. Now we wait for a reply to a formal letter requesting an explanation/description of the test ("visual field test with fovea on"). It is scary when a perfectly competent ophthalmologist has no idea what a test is. I stress, he seems like the more competent of the two ophthals, though he is not the neuro. I probably think that more because of his style than substance. He is the type of doctor who is glad when a patient does their homework. He will take time to talk to me about what I read here. Meanwhile the neuro-ophthal/surgeon dismissed radiation therapy as dangerous without a real explanation. In fact he said it doesn’t matter because I will need OD surgery soon. He is clearly all about the surgery. I asked about IV steroids and he said yes, he’d consider that. I was just left wondering why he didn’t suggest it in the first place. The last thing he said to me is that he feels my emotional problems will become severe soon. Then he walked out the door. I object to that on so many levels… He has barely spoken to me and I’ve been calm and logical the entire time, both times, even though he kept me waiting for an hour.

To clarify, I am deep into hot stage TED, very swollen, even I could see the double-sized muscles on the "wrong" CT scan. The nerves are being stretched, I have double vision above and to the sides and the non-double vision field is decreasing slowly. There is no clinical ocular nerve damage at this point. But I may not have time for that second opinion. My TED, Graves, subclinical-hyper were all diagnosed last month. I had the uptake scan, CT scan and two sets of labs so far.

Just an aside, it is not clear to me if prednisone is doing any good. Docs all say they think so but when I ask why, by what measure they are judging, they change the subject. I don’t think they know so they are keeping me on prednisone hoping they are staving worse off (a valid point) while buying time for me to make a decision about my thyroid, which is cranking T3/T4 just like any normal thyroid (whereas TSH,TSI, antibodies, all another story of course). As far as I can tell, the main thing prednisone is doing is confusing me.

[msmanatee]

in reply to: Vision emergency symptoms? #1061289

Made it through the weekend unscathed and thanks for the input; it was greatly appreciated.

After I explained all that to the neuro-opthal/surgeon, he said that he did not think sudden eye symptoms were anything to worry about, short of something truly dramatic like total blindness. He said pressure on the optic nerve tends to be gradual and while those symptoms might indicate the pressure is increasing, it would not constitute a literal emergency.

The CT scan results were problematic. Apparently the lab did not return the specific images he needed. I seem to run into this issue a lot (missing labs/docs). They were to send the correct images today. He also mumbled that he didn’t agree with the radiology report, shoved it into a file and sent it off with his nurse. I plan to request that but got distracted by….

He recommends RAI immediately. The endo prefers surgery due to concern over the eyes. I won’t lie; it put me off slightly that the eye doctor is making an endocrinology call while the endo is making an eye call. They both say I am running out of time yet no definitive reason is given except my eyes are just bad and possibly deteriorating slowly.

The prednisone effect is very bad today. I am extremely tense and will write more when I calm down.

[msmanatee]

in reply to: Vision emergency symptoms? #1061286

Thanks, Shirley! I was hoping you might spot my post.

I am on 40 mg prednisone and am to see the surgeon/neuro-ophthal tomorrow am to go over my CT scan, so you can no doubt understand why I’d prefer to WAIT. How likely is the ER to drag him off his golf course or power boat right now. Sigh.

Right now my vision is fine. Murphy’s law that it would start acting up on Sat/Sun. What made me pause besides the rapidly shifting symptoms is that I’ve had a couple of stabbing eye pains but they, too, go away (I have had them a couple of times over the past month, too). I think if a visual symtom doesn’t go away within a half hour I will just mosey into town.

[msmanatee]

in reply to: Vision emergency symptoms? #1061284

update: I did locate some helpful posts about emergency OD surgery. Still welcome any replies, though. This is gonna be a long day, I think! ” title=”Confused” />

[msmanatee]

in reply to: another newbie (subclinical hyper TED) #1061358

Hi Jansm, yes you are definitely tapping into my fears regarding records and communication! So far the only significant lapse was the optometrist treating me for allergic conjunctivitis for two months with zero benefit. But two of the docs argued over which of them should prescribe oral prednisone and the endo made a few mistakes in her notes. Perhaps not significant errors but still worrisome, like my aunt had three autoimmune diseases but just one is noted. But I am getting very picky along w/ my cranky so not sure I can even evaluate my own judgment! I am just glad I’m not yelling at anyone anymore. ” title=”Smile” />

I don’t live near Mayo but can get there for a consultation. My dad has had multiple surgeries at MD Anderson Cancer Center in Houston but coordinated local care otherwise and he’s still going strong at 82. There is a medication clinical trial at U Michigan also being run through Mayo and I’d like to know more about that.

If anyone has had radiation therapy to the eye sockets, I’d really appreciate a Chime In. I can’t see that the predisone is making any difference and might rather try that than sitting around waiting for orbital decompression to become necessary.

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