[Jules]

#1058735

Hello It’s been awhile. Long story short. Graves 7/1/10 RAI 20MCI 11/5/10 Eye issues started 11/8/10 I have been seeing a neuro opth for months now. The MRI’s and CT Scans are showing major progression of the muscle swelling of the muscles. I have been through 1 round of iv steroids which gave little relief. I am having pressure on the optical nerve. The past few weeks I have woken up with wither reduced vision or color blindness that last for about 10 Min t o1 hour. The CT scan is showing issues.

Your thoughts on the Radiation or surgery? I just told the surgeon that I wanted to keep my skull in tact LOL and said go with the radiation however 1 hour later I am having second thoughts Radiation was what got me here quicker than if I was to go with out the RAI IMO

So there you have it. Oh and I am still trying to regulate my hormone pills. currently on 1.5 grains armour.

[snelsen]

#1169694

Hi, well, I suggest you ask the doc to amplify the information you have about RAI for your eye issue. It is very serious to have optic neuropathy, and the goal is to reduce the pressure on the optic nerve as soon as possible, for permanent blindness can occur if this is not relieved. I think of this as an emergent, right now or pretty darn soon intervention.

I had the same experience, and had an OD for this reason. But I am scratching my head, and puzzled that radiation is even a choice for you. My understanding is that radiation takes a while to have the desired effect, and my thinking is that it is not possible to determine the amount of time it would take with radiation; and what I learned from my own experience, is that you need to have an intervention in a near timely manner, an the sooner there is more room in the space to accomodate your eye, the swollen fibrosed muscles of your eye, the better, to relieve the pressure on your optic nerve pronto, with and OD.

What were you told about radiation as an option?
shirley

[Kimberly]

#1169695

Hello – Just a quick comment to add to Shirley’s post. We had a doctor present at our annual conference last month who stated that patients who haven’t responded to steroid therapy generally don’t do as well with radiotherapy. Not trying to talk you out of it, but this might be an issue to discuss with your doctor, especially since it sounds like you are already experiencing compression of the optic nerve.

[Jules]

#1169696

The only reason he even offered radiation therapy was because of me not wanting to thave surgery. As I have tod him for months I want to keep my skull in tact . Just me not wanting surgery. However I’m now considering surgery. Knowing that I will have to have it sooner or later way hold out? I really don’t have time for surgery right now be ause of end of year close out and reading the biz for taxes will take up my next 8 weeks.

[Jules]

#1169697

OD surgery scheduled for feb 21st. Neuro states that I will be in the hospital for one night. He said that he is not doing the route from the nose but cutting under the eye lashes/lids. Ephemoid sinuses will be routed out as well as the top and bottom of the eye socket. Does this sound correct? Protrusion is at 25 the other eye right now is at 20.

Did anyone decide to by and ergo bed where the head raises up? I have tried raising the head of the bed with the bricks but that through my back out of sack never allowing the pressure to be relieved. I have always had back issues.

[Ski]

#1169698

Hi Jules,

I’m jumping in here kind of late — been away from the BB for a while, but I’m trying to catch up. Having the head of your bed raised with bricks can really relieve your eye pressure — if it resulted in back issues for you, that may be a result of using pillows to further raise your head. If your mattress is flat, but angled, it shouldn’t have any effect on your back. As a matter of fact, a bed that only raises the head creates a pressure point at the “bend” that is more likely to cause issues with your back.

You’ve got good information so far, and it appears you’re on the right track. I wish you luck with your surgery — there are certainly many ways to accomplish the OD surgery, and it is important that you find some way to relieve the pressure surgically at this point in order to save your sight. You may want to make sure your surgeon is associated with ASOPRS (http://www.asoprs.org), as those doctors have specific training on TED-related issues.

(I hope I put the URL in correctly — I haven’t used this new BB much…)

[Author]

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