[Jeramac]

#1018193

What a great site! My mother had OD surgery on both eyes this fall. The Right eye did great and is problem free. The left eye she is two months post surgery and along with the double vision that is not clearing up she has a HUGE water pocket under her eye. It gets up to 3 inches across and 3 inches down. It has gotten so tight that she fears it will rupture.
Her surgeon has put her on steroids to reduce the swelling and that has helped but the swelling is continuing to return every morning. He tells her this is a result of her graves disease and there is no cure for it but he can manage it.
Is this normal? How long will this occur and is there anything else she can do to help this?

Any information would be greatly appreciated! Thanks!

[Kimberly]

#1063177

Hello and welcome to the boards! Thanks for your efforts to be an advocate for your mom…as a Graves’ patient myself, I know that it is truly appreciated! Patients with severe TED may have to deal with three different types of surgeries, with the OD being the first. The other two are strabismus surgery to correct double vision issues and eyelid surgery to restore the appearance and function of the lid area. The eyelid surgery can also help "clean up" swelling issues.

The good news is that many patients do see an improvement in their eye symptoms once the eye disease has run its full course. (Which can sometimes take 2-3 years). This is one of the reasons surgery is usually postponed until patients are in the “stable” phase, where symptoms are not getting better OR worse — unless there is compression of the optic nerve, and the patient’s vision is in danger.

Hopefully, you will get some additional feedback, as we have posters here who have been through all the various stages of the eye disease.

[snelsen]

#1063178

Hi, I had had OD surgery. The one thing that made ALL the difference in the swelling after the surgery, was to elevate the head of my bed. It made a big difference in a good way in my recovery, and diminishing the swelling. I think this will be very helpful, especially because it is worse in the morning. It is very discouraging to have this situation a couple months after the procedure, I sure am sorry. I know you are more stuck than usual with the doctor, because he is the one who did the surgery (I assume.) So it is more difficult to go to another doc for a second look. Re elevating the bed-First, I bought very cheap blocks at Bed Bath and Beyond, and it worked pretty well, but I wanted the head of the bed higher. So I got every old blanket and bedspread I could find, folded them in approx. 1/3rds,
and had OTHER people lift my heavy mattress and place the pile under my mattress. I sure do understand that your mom does not want to sleep with her head elevated the rest of her life, and also does not want that huge accumulation of fluid under her eye. How long has your mom been on the prednisone?

Kimberly’s post pretty much described the course of TED, and it reflects my experience. I had double vision before and after the OD. It was life altering. Almost a year later, I had strabismus surgery (eye muscle adjustment) on both eyes.
My double vision was looking straight ahead and up, and my inferior muscles were the most affected, although the obliques in both eyes were also affected. The strabismus surgery was a couple months ago. It helped a LOT with looking straight ahead. I don’t have to tip my head waaaay back to see only one of something. I still have double vision when I look up, but it is a bit better. The eyelid doc wants to wait about four months after the muscle surgery, and then I will have eyelid surgery on upper (first) and lower lids. That will put my corneas at less risk, and I hope it might help my extreme photophobia (sensitivity to light) and having my eyes tear CONSTANTLY!
This is very tough thing to have. Tell your mom to write, or send a PM (private message) and I will respond, she is also welcome to call me anytime. It really helps a lot to talk to someone going through the same thing, especially if it is pretty severe, as mine seems to be.
Shirley

[Jeramac]

#1063179

Thanks for the quick replies.
I know mom is elevating her head but maybe needs to do more so. She had said she was thinking of sleeping in the lazy boy chair to see if that helped. She is very afraid of taking prednisone and the side effects of long term use from that. She has only been on it for a week or two now for this swelling. It does seem to help a bit but the water pocket remains.

She had her surgeries a little backwards from what I’m reading. They did the upper eye lids a year ago as she was hoping to avoid the OD surgery. (she needed OD done but was afraid of it and so put it off as long as possible). I’m pretty sure she was in a ‘stabile’ position with her eyes as they were not getting any worse in the last couple of years but the symptomatology from them did get worse i.e. itching, dryness, aggravating and touching her glasses to the point she opted for OD.

The thing is, the right eye done just two weeks prior to the left…..is perfectly fine, healed great, double vision went away and it looks awesome! But the left eye is the opposite with the double vision and swelling.

I went to every appointment with her and we were never told about this pocket of water issue that could happen and I find that disturbing that she could have this for years?

Thank you for your offer to talk with her, I’m going to tell her about this website and board. She’s having difficulty with the computer screen glare right now so isn’t able to sit at the computer for long but she will find this helpful!

[marit]

#1063180

Jeramac’s MOM…marit….
I am so very pleased to find this sight, and to be able to know others with this same problem..
As my daughter explained, my right eye is giving me problems with the swelling//The double vision I can tolerate..
the only time the double vision is a problem is when I go into a department store with lots of colors and everything jumbles all together..
I tried sleeping with my shoulders and head lifted last night thinking that would help, but it did not work..
Will I have to give this several days to see a difference????
When I came home from the hospital i slept propped up in the bed and slept sitting straight up for two weeks for both eyes..
This was not difficult as I was medicated from the surgery and slept very well.
I will continue to get things organized to sleep elevated…
I have been on the predizone ( low dose) for five days and two more to go…
Two weeks ago I took a steriod packet for a week and got very good results, so far the low dose is not working well.
I apppreciate any info., and hope I am on the right post for Shirley and Kimberly…Thanks a bunch…Marit :

[Kimberly]

#1063181

marit wrote:I tried sleeping with my shoulders and head lifted last night thinking that would help, but it did not work..
Will I have to give this several days to see a difference????

Hi marit – Welcome! Yep, you found the right thread. You might try actually elevating the head of your bed, using the procedure that Shirley suggested above. Just propping up the head and neck doesn’t really give the fluid a chance to drain…not to mention that you can wake up with all sorts of aches and pains! ” title=”Wink” />

Please check back and let us know how you are doing!

[marit]

#1063182

Thanks a bunch for the info about raising the head of the bed.
I will certainly do that and soon.Raising my head has helped somewhat, but as you said the
neck then hurts…
what about the foam block, do you think that would work as well as raising the whole bed???
I used one during the surgery healing time…

[Kimberly]

#1063183

Hi marit – I’ve used a foam block and I don’t think it’s as helpful as raising the head of the bed…but it’s probably better than just trying to elevate your head/neck. Hope you can get some relief soon.

[snelsen]

#1063184

Hi Marit,
I was much happier raising the mattress the entire width of the bed. I tend to move all over the bed, so my head was always elevated. I would guess about 30 degrees or so. If you can get a good sleep sitting in a recliner, that is another idea.
Is the fluid accumulation under your eye getting any smaller, or better?
Shirley

[marit]

#1063185

I am on small doses of steriods at this time ..for 2 weeks to have the swelling lessen.
I cannot raise the complete head board as my husband sleeps there also..
I thought the foam head rest would maybe be ok…
The eye fills up with fluid at night, closer to morning, then leaks all day,
by evening it is fairly good.the whole thing starts over again at bedtime…
I also have double vision, and will have a tempory prism in my glasses
after Christmas.I am in no pain with anything…
I loved the surgery, had no problems. no pain. and two wonderful surgeons.
they went up through the sinus’ and did the surgery.

[snelsen]

#1063186

Hi Marit,
I see your point about not being able to raise the head of the bed, unless you can convince your husband that he would love it that way! Otherwise, using a foam pillow/wedge or anything that will elevate your head at night WILL help the fluid accumulation, as you have seen by the fact that it is worse in the morning, much better at night. The only other solution I can think of is to sleep in a recliner if you have one. At least you know that this will resolve over time! really!
The prisms work very well for many people with double vision. They did not work for me. I hope they make big difference in a wonderful way when you get them. It sounds like you had the same approach to your OD’S that I had. I had an eye surgery and an ENT surgeon. The ENT surgeon did the medial side, and the eye surgeon did the lateral side.
It sounds to me like you are beginning to see some progress with the swelling, even if slow. At least is not getting worse,a nd that is a sign that it is getting better!
Shirley

[Ski]

#1063187

Raising the head of our bed cured my husband’s middle-of-the-night heartburn, so now he loves it too. ” title=”Very Happy” />

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