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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” />Hi, you may have already read some of my posts re TED. I am not clear if you are seeing an endo tomorrow, or an eye doctor or neuro opthamologist. I can tell you my experience, for I did have to have OD in the hot or active phase of TED because of optic neuropathy. Which means pressure on the optic nerve. I was not at all aware that I had a big blind spot (left visual field cut) but it was clearly demonstrated by visual fields test (the machine kind.) I had a dose of steroids, which resulted in almost a full visual field, for all of 4 or 5 days. So, this is a medical emergency, regarding that the pressure needs to be relieved before there os permanent damage to the optic nerve. But not the kind of emergency (in my case) that it needed be done tomorrow.
I did not want an OD, especially in the active phase, where eyes are changing all the time. But I did go back on steroids, and had an OD within a month, after I found an oculofacial surgeon (this one works with an oto surgeon, too, the each took a side of the orbit.) If your eye went suddenly BLIND as in no vision, I would go to the ER. But as you know, the ER docs won’t be able to do amything, hopefully you are in a big enough area that they would consult fast. BUT your appointment is tomorrow, and if you are stable where you are, I know you plan to go tomorow. Do call the office 1st thing tomorrow and report your new symptoms. Maybe you can get some testing done before the appointment, or the same day, so there is something to discuss.
My vision improved right after the OD to full visual fields.
Write with more ? Go to the ER if you feel that you should…
ShirleyThanks, 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.
Ya, I think that makes sense. Sat-Sun ER’s are the last resort.
With TED, I had an occasional stabbing eye pain, too. Fleeting, not frequent. Really relieved to hear of your plans tomorrow. You will get much better care and attention tomorrow, and you are hooked up with the right specialties, and have sort of a PLAN!! All good news. Do write after your appt. tomorrow.
sI don’t expect to get emergency advice here but was searching for posts about orbital decompression surgery in emergencies because I’m having new symptoms and haven’t had much luck. I’m trying to decide whether iI’ve got an emergency or not. Being Sunday, I’d rather wait until my appointment tomorrow! Anyhow, if anyone has had emergency OD surgery and cares to share what symptoms led to that, I’m all ears. There is not much about this on the internet (so far)…
These symptoms are fleeting. Last night I had an orange streak across the bottom half vision in one eye. This I had some dark spots in both eyes and a few minutes ago I had long shimmery strands in the other eye. But all lasted a few minutes and so far they have all disappeared. (knocks on wood)
Hello – You probably have already had your visit by now, but one thing to watch for in terms of vision loss is if you look at something that you *know* is red, but it comes across looking more brown or orange. Definitely keep us posted on how you are doing!
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.
HI S,
I hate hate prednisone! you have my total sympathy and empathy.
I just arrived in Sun Valley from Seattle visiting kids, and we are going out RIGHT NOW!~!!! SO GOTTA GO. That’s what they say. Following orders. Will write later tonight about eyes, ted, and all your very goof concerns. Yes, what the neuro-opth doc told you is absolutely correct.I am not sure my experience helps in the long run, but maybe it will at least make you feel slightly better about yesterday’s experiences and frustrations! I, too, had conflicting recommendations from my endo and ophthamologist. There were also conflicting interpretations of radiology reports between the two physicians. The endo seemed relieved by the reports, and the ophthamologist was alarmed by the same reports! At the end of the day, all of these physicians are humans. They have different opinions, different experiences and make mistakes — just like each of us. I know it is frustrating because we are paying them not to make mistakes, and entrusting them with our lives and vision. It still happens, though. Each of us, no doubt, have our own stories to tell.
Exactly one year ago, I was told that I would probably lose all or most of my vision within a few months. It had already taken almost 2 months to obtain an appointment with the ophthamologist. My husband and I were in complete shock. My thyroid had been surgically removed a year earlier. My eyes had ached a little and were dry, but had never bulged or shown other common TED symptoms. It was the aching and headaches that caused my endo to order the MRI and CT scans to rule out any other neurological problems.
Looking back, I wish that I had taken the time to get a second opinion. I wish I had sought treatment at an inclusive facility — one with all disciplines under one roof — instead of running all over a large city trying to get records and test results transferred and shared, and get physicians to communicate and cooperate. In the end, I survived — and that is the most important thing. After undergoing OD on both eyes, and strabismus surgery a few months later, I am now leading a fairly normal life again. I am grateful for each and every day that I open my eyes and can see. I will never take it for granted again. However, I do think it might have helped if I had taken the time to receive a second opinon and gather more information from various medical sources, before making my decision. I sometimes still have questions and doubts as to whether or not I did the right or best thing for me. The past year was very difficult. There were complications with my OD surgery. My husband and I both own businesses, and they suffered during the process. We probably had more time than we realized, and could have made better choices for everyone and everything involved.
So, if the endo and opthamologist indicated your situation is not an acute emergency, I would take a little more time to research and obtain a second opinon. I believe one of the most important things is to feel completely confident with your physician. It makes a world of difference. Just remember to take deep breaths along the way, and don’t forget to enjoy all the good things that life still has to offer.It is disconcerting to hear the varying opinions. In my experience (you can see a list of my experiences at the end of this post)the endocrinologist should not have much opinion, and certainly not much knowledge, about TED. In my world, they are the docs who manage Graves’, the dose of replacement, ATD’s and meds given at the beginning of Graves’, etc. etc, and the docs who are in your life for the rest of your life, managing the thyroid hormone replacement, or whatever you have chosen to do. But NOT TED. Of course, when they finish their internal medicine residency, and take (usually a year, can be more) of endocrinology, they certainly study the thyroid gland, and all that is associated with it. There is nothing in their training in endocrinology, which teaches them to address the treatment of the eye for TED. They might prescribe steroids, but i would expect the eye docs to do that.
It seems to me that you have the right doc for your eyes, by seeing a neuro-ophthamologist for your eyes. The do the color recognition/visual fields testing, with the background of an ophthamology residency, then a neuro residency. So their fund of knowledge in this area is the right mix for TED. Then they would refer to oculofacial surgeons, for OD if they belileve the optic nerve is treated. And if double vision is a problem, you’d be referred to a (usually it is) a pediatric surgeon who operates on adults who have this problem, They move the muscles of the eye, to decrease or eliminate the double vision. It’s called strabismus surgery.
I had the same experience as jansm, regarding the need to do an OD to save my vision. But now you know that is not your immediate problem, so as jansm say, you have time to take your time, get a 2nd opinion if needed.
I suggest you ask whoever ordered the CT scans (I presume they are orbital CT’s) how he plans to use the information. They will probably show that some of the muscles of your eyes are fibrosed, which IS TED. Another big quesiton I would like you to get as good as answer as you can to, is are you in the ACTIVE (or hot) phase of TED, or has anyone concluded you are in the INACTIVE (or cold) phase of TED. If you have not read about the course of TED, it is a good idea for you to empower yourself with this knowledge. I found one of the most frustrating parts of having TED, is when to KNOW when I was through with the active phase. The variables for this are kind of soft, based on if YOU feel your eyes are still changing all the time, plus the objective measurements of the neuro/opth doc, plus the period of time since the beginning of TEF. THat is hard to know, for most of us had TED before it was officially diagnosed.
Sorry for such a long post. If you are not doing this, sign the appropriate medical release of information papers so you can have all repoerts and dicdtated records for YOUR file.
Do you have double vision? Maybe you mentioned it and I missed it.
Shirleyjansm 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.
I never experienced the steroid treatment. I was evidently past that point. I never saw a neuro ophthamologist, either. I cannot speak on those points. However, I do know my endocrinologist told me that if I had received the steroids, they would have been administered by the opthamologist. She would have helped in monitoring me, but the primary load would have been carried by the ophthamologist. Perhaps I am just fortunate, but my endo does seem to have a very good understanding of TED and always checked my eyes — even before the problems began. She did rely upon the radiologist’s interpretation of my MRI and CT scans. He was the one who was not alarmed at what he saw, and evidently had very little knowledge of TED.
I was referred directly to the oculo-facial surgeon. He, also, seemed to do mostly cosmetic surgery. While other patients in the waiting room were concerned about wrinkles and drooping eyelids, I would have gladly taken wrinkles and droopy skin. I was not pleased with some aspects of this surgeon’s practice or mannerisms, but he did seem very well versed in Graves disease and TED. Many of the tests and screenings that have been discussed here, were performed right in his office.
It did take 1-2 months to receive my appointment at Mayo. However, that was for treatment of worsened strabismus resulting from the OD surgeries. Receiving a second opinion for your situation, would be with a different physician and could be different timing. It is my understanding they normally require all of your records for review, before scheduling an appointment. That is why it is important for us to request and receive copies of our records. We then have them quickly at hand to forward wherever and whenever needed. It took probably 2 weeks just for my oculo-surgeon to forward the records they needed for review. My endo’s records were faxed within 24 hours.
As for being treated at a distance, I do not foresee that as a problem. Many of those clinics treat patients from all over the country and abroad. They are willing and able to correspond with local physicians and coordinate local follow-up when necessary. Or, that has been my experience. Having gone through OD surgery locally, and strabismus surgery 900 miles away, I cannot say that one was any different from the other. I remained in the hospital overnight for the OD surgery, and rested at home for several days before returning to the surgeon’s office. My surgeon even left the country on vacation approximately one week after my surgery. Following strabismus surgery, I remained in Rochester at a hotel for approximately 4 days before returning home. A follow-up was scheduled approximately 2 months later, and I will return for another later this year. I realize not everyone may have the time, resources or a willing husband like I do.
I do not know where you live, but there are other clinics, medical schools/teaching hospitals and institutions offering all-inclusive care. It just takes time and patience to sort through everything. I never even knew about this forum until I was very far in the process. Hopefully, you will find helpful information here, as well as other places. When it is happening to us, it seems that we may be the only ones with this disease. In reality, there are many and there are physicians who can help. We just have to be willing to do a little research and search for them.
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