[snelsen]

#1018165

Good morning, this is a response to Susan, from under the "I chose I-131"thread," and probably many others, about "the elephant in the room." I have learned for myself, and from others, that the doctors seem to avoid the topic of driving with TED patients whose vision is constantly changing.
Hi Susan,
I think your doc is doing a good job with your care. And, unless you have double vision that is really impacting your life, there is no reason to be seen by the eye surgeon who does the strabismus surgery. I hope you never need it!
I felt very uncomfortable driving. Because of the decreased peripheral vision, which I was unaware of, I did have one accident which was my fault. First in my life. With my whole experience with TED, the relationship between driving and vision was never mentioned by a a doctor. I think it should be addressed. At the very least, certainly mentioned to be aware that vision is changing, and have very heightened awareness of it, as it relates to driving. In my case, if I had any idea how compromised my vision was, I would not have driven until after the strabismus surgery.
I find that I am much more reluctant to drive on freeways when they are dark and wet. Or to place I don’t know at all in the nighttime, for all through TED, my eyes have changed so rapidly. Compounding this issue, that I (and many of us who wear glasses, TED or not,) don’t have the appropriate prescription glasses. Now that I am in the cold phase, I look forward to having an appropriate prescription.

It will be interesting to hear from others on this topic.
Shirley

[FindingMe]

#1063048

I have periodic double vision and can’t look up, down or side to side. On top of that I have very dry eyes and I am extremely sensitive to sunlight, street lights and some overhead lights. At night, it’s difficult to see past the head lights of on-coming vehicles, I hate the emergency vehicle/tow truck lights, I’m basically blinded every time I approach a street signal light until a few seconds after I pass it and you don’t even want to get me started on detours! I absolutely do not drive when it rains and will only drive at night if it’s an emergency. So basically, unless it is a sunny day with my dark shades on – I can’t drive and, even then, only a few miles going preferably under 40mph – good thing I never bought a sports car! Oh, and did I mention…. my husband and kids would very much like to gag and blind me when they drive me places! lol

I have seen several different doctors and I am over it! I had one doctor state I should not drive. One doctor said to only drive when I felt comfortable and to judge for myself. Another doctor suggested I was exaggerating my condition and didn’t see any reason why I couldn’t drive – she told me to just close one eye when I see double!!! Can you believe all these doctors stated they were a specialist of Graves’ related TED!

The last specialist I went to stated I would need 3 different surgeries by 3 different specialists. Personally, I just can’t go through another surgery – no guarantee and I don’t think I could handle another disappointment. After years of college and work experience, I had to quit my profession. It’s been rough trying to figure out what to do with my life when I’m limited to what I can do versus what I want to do!

[snelsen]

#1063049

Hello, FindingMe, welcome to the boards. I think you will find them very helpful.
I see your experience with a very different view. Clearly, you are doing a good job in trying to find help for your life changing vision issues, known as TED. Regarding what the doctors said, in all cases, I think they said reasonable and professional comments. Really! With the multiple deficits you have regarding vision, it does make a lot of sense to tell you not to drive, and this is based on your own comments about the problems you have seeing. The second doctor told you basically what you have been doing. Because TED can change from day to day, there may be days when you DO feel more comfortable driving.
A cloudy day, in the daytime, when your double vision demons might be a little less. And, though it may surprise you, the third doctor, who suggested driving with one eye, well, that makes a lot of sense, too, given at this time, you ARE driving some.
I think closing one eye is not the regular routine you should use, BUT it is a fact that when one eye is covered, you do NOT have double vision. There are people who do drive with a patch or a contact that block vision in one eye to avoid the double vision.
So, yes, they are specialists in Graves’, and none of them have done any disservice to you at all. I am not sure what you expect, or wanted them to say??

Doctor #4. This physician is most likely correct. I am not sure how much you know about TED, and again, there are wonderful posts on this board about the progression of TED, and probably one of the facilitators will chime in on this topic.
Briefly, the sequence goes like this, in chronological order. Diagnosis, active phase, (or hot phase,) where eyes are changing all the time.
Seeing eye doctor familiar with Graves’, usually a neuro-eye doc, and in your case (and mine) an eye surgeon who will follow you until the the cold phase. The neuro-eye doc checks vision carefully, to be sure your optic nerve is ok. The eye surgeon doc moniters double vision, and for some people, prism glasses are prescribed, which decrease,and in some instances, eliminate the double vision.
THEN it is time for surgery. Unlike you, I counted the days and minutes for the past 1 1/2 years until I could HAVE SURGERY!
It is wonderful! Nothing else will help. check at the end of my post to see what I have already had, and what I am planning to have! My next surgery is Feb 1, on my upper eyelids, and I am SO SO HAPPY that i have gotten to this stage.
The surgery that helped get rid of almost ALL my double vision is strabismus, or eye muscle surgery. It is a piece of cake to have.
Regarding guarantees. I see that differently than you do. The guarantee you have if you do nothing, is the life you are having now. It doesn’t have to be that way! I regarded it as a living hell, and I am so grateful that I was able to have surgeries to help me get back in the almost normal vision world. I also have extreme light sensitivity, and much tearing.
Well, I will be interested in what you think about my post.
Shirley

[frefluterb]

#1063050

Hi,

I also have TED and have given up driving completly. I have not regretted this decision because of the danger I pose to others. I have a bicycle, I am not likely to kill anyone with it, but don’t ride it much. I also have not worked in the last year, nor have read a book. I have had OD surgery and am making a good recovery, the surgery did exactly what it was designed to do, save what vision I have left. I suffered some permenant damage to my optic nerve. So I encourage you to trust yourself AND be your own advocate. It is a awful disease and changes ones outlook…..

[FindingMe]

#1063051

Shirley, I just now saw your reply post to me.

I appreciate your thoughts but I think you might have misunderstood my post. My reply was in response to doctor’s advice on the topic of TED and Driving. Susan commented that doctors seem to avoid the topic of driving with TED because of the constant vision changes and in your comment; you had noted that doctors should discuss the relationship between driving and vision. I completely agreed!

In my reply, the point I was trying to make was that each doctor told me something different and I would walk away more confused than before. Please keep in mind, at the time I didn’t quite understand TED and none of the doctors fully explained to me how the vision changes from time to time. The relationship between driving and my vision was never fully discussed and it’s hard to ask questions you don’t know to ask. My father was with me on each visit and he was just as confused. In my opinion, doctors should give detailed information and provide much better advise when it comes to TED and driving.

In regards to covering one eye or using an eye patch – I do NOT agree that my doctor provided me with reasonable and professional advise. I probably should had explained further in my post. She stated that there was no reason for me to limit my driving and to close one eye when I had double vision – simple as that. The doctor was completely aware of the blurry vision, limited peripheral vision and double vision. I do not feel the doctor fully explained TED. I would caution anyone using the technique of closing one eye while driving and only do so as a last resort.

Unfortunately, I had to learn the hard way that the technique does not work too well with blurry and limited peripheral vision. I was not prepared when when I closed the one eyelid to find things blurry and had limited vision. When I open the one eyelid, I couldn’t immediately adjust to the double vision and was scared to death. I was traveling on a highway going 55mph and came close to a head on collision. Granted, one could say that I should had tested the technique of closing one eye on a back road but keep in mind that my knowledge of TED was limited and I trusted the doctor’s advise. The point is, the doctor made it sound so simple and in my experience, it’s not always so simple to close one eye and drive.

I am very excited to hear your success with the surgeries. I may still consider surgery. But, I am very scared of loosing what vision I do have. And, what happens if the surgery is successful then later on my vision changes and I start having problems again? My understanding is that the surgeries are only a treatment, not a cure.

[Ski]

#1063052

Once you’ve fully reached the cold phase of TED, surgery can be done safely without risk of further "hot phase" worsening. Cold phase diagnosis is important, and is typically made in hindsight ~ in other words, if six months have passed and your eyes have remained exactly the same, you can say at that point that six months ago, you reached the cold phase.

You’re right, it’s risky to have surgery when you’re in the "hot phase" and experiencing rapid and frequent changes in the conditions of your eyes, it can trigger further activity ~ and yet, if your optic nerve is threatened by the pressure, they will do the surgery in the hot phase in order to save your sight. So as long as you do surgery at the right point, it can be corrective.

During the hot phase only, it’s possible to keep the overall changes to a minimum with oral steroids and directed radiation, but of course you’d want to have a frank conversation with the doctor over the risks of those.

Some of the eye surgeons who have spoken at our conferences recently say that these can provide such an improved experience overall (they limit the worst of the changes, and so preserve your appearance afterward), that using them during the hot phase can be a very good thing. Using both together can mean you have to use less of each in order to gain the same improvement, lessening the risks.

There’s usually a period of improvement after the hot phase ends and before the cold phase begins, and during that time it’s just a "wait and see" approach ~ the oral steroids/directed radiation have not shown themselves to be particularly effective at this point, and surgery would not be recommended ~ so it’s another one of those tough times.

But again, at the right time (full, cold phase confirmed), surgery provides amazing results that last.

[snelsen]

#1063053

Hi, I just read YOUR post. Already sent a PM. I think I may have gotten the doctors out of order in my response. Sorry. I was so anxious to give you some hope, and let you know that I have gone the same hellish path with TEd, and that I understand.

It was the one doc who said that surgeries would/will/can help you, and I was hoping to give YOU hope by sharing my experience. I totally understand agree with you about the confusion. conflicting information, and the increasing amount of doubt and stress when you hear this mess of information and misinformation from different docs. Especially the one who said,
"just shut one eye." That is downright cruel.

Hope our communication lines are up. If they aren’t, let me know…. We’ll fix it.
Shirley

[sutan351]

#1063054

So Glad this topic hit the boards right as I was ready to post my frustrations/questions…..I’ll get to the driving issues….

FindingMe hit it right on with the conflicting advise I have received for years. I finally found a surgeon at one of the best facilities in the country that gave us hope years back. (This after going to 3 different surgeons locally – all with different opinions. Some said NOT to do OD or Eye Muscle Surgery). This surgeon suggested to "treat my thyroid" (finally had RAI in Apr of 2009) and then consider OD before determining if Muscle Surgery was necessary.

Had bi lateral OD in May of 2010 and developed complications which included 2 additional surgeries. I started to develop bumps under my R. Eye that would come and go after the OD. Finally discovered, I had Maxillary Sinusitis that caused an abscess under my eye that had to be removed and then needed Sinus Surgery (before this surgeon would do Muscle Surgery)…My Advice to anyone getting OD – Press your Dr. to have an ENT Present (if possible). This Surgeon completely missed the fact that 2 rounds of antibiotics didn’t help clear my sinus issues. Which likely caused the infection and the abscess.

Anyway….after the OD – my Double Vision got worse and the alignment of my eyes were even more off. Because now my R. Lid was even lower (because of the surprise abscess removal surgery). It was agreed that I needed Eye Muscle Surgery to correct this alignment and my DV. Otherwise doing lid surgery on misaligned eyes would look even more weird!

Unlike Shirley (So glad you had success)…..I have Even WORSE Double Vision and up close DV – which was my biggest fear. I finally started to drive the back roads – after TWO Weeks. And have ventured out a little more this week. Before the surgery I could tilt my head up and see single, but that spot is now gone. Feel like I look a little sideways and need to blink and stare to get any Single. It’s a CONSTANT thing and now starting to give me neck pain from the constant head maneuvering!

Hopefully, my eyes are still correcting – but feel like a REALLY need a 2nd eye muscle surgery…and all this to get to the Eye Lid Surgery, which I desperately want for the cosmetic reasons. Post Op (1 week after) – this surgeon felt "the surgery was a success and my eyes were aligned"….BUT I am still seeing DV and close-up DV….what a nightmare!

So tired of it all and tired of my family/friends asking how things are going! Blah Blah Blah…I feel better than two weeks ago, but dealing with VERY Stressed eyeballs. I’m lubricating (often) and trying to remain optimistic. Gratefully – I’m not working. Would not have been able to work – Because I CAN"T SAFELY DRIVE or look at a computer/read for long.

Drs. DO totally avoid this issue and make it seem like no big deal to cover one eye. And if you do cover one eye…you can’t uncover while driving or you will experience the blurriness and enhanced DV that you experienced on the Hwy.

I’m 3 weeks post Eye Muscle Surgery this Thursday – Really need to start driving (very fearful of this)…I go to a local Optometrist on Friday for an exam and may get measurements for prisms. Feeling like I’ve taken 2 Giant Steps back on this very long journey!!! More fatigue and overall diminished health from Fall 2006 when I was dx – with Graves/TED

Sorry for the RANT – my husband has been patient…but many of you on this site can relate much better!

2 Questions – Has Vision Therapy or Eye Exercises worked for anyone. My Neuro- Opthamologist of course dismissed this!
What about acupuncture?

Ugh…..starting these surgeries can be a ‘slippery slope’ as I’ve experienced. But hope to get to the top of the slope soon!

Sandy

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