[snelsen]

#1062300

Hi John,
From my experience with TED. Graves’ and labs, the TSI lab simply says that you’ve got autoimmune issues. The eye docs do not rely on labs at all in the treatment of TED. My docs did not make any treatment decisions based on TSI.

As you probably know, TED progressions involves and active or hot phase,and a cold phase. Surgical interventions are usually not done in the hot phase, ’cause the eyes are always changing-with the exception of when the optic nerve is being compressed,and vision is threatened (optic neuropathy.) THen and OD (orbital decompression) is done to relieve pressure on the optic nerve.

So the progression of surgeries are:
OD (if needed) strabismus surgery (moving the eye muscles to improve or eliminated double vision and resume near normal euye movements) and eyelid surgery (if needed or desired.) All my TED decisions were made by objective exams, including visual fields,and my my own subjective statements about my eyes and how they were doing (changing or not changing.)

Having said all that, I think you are referring to strabismus surgery. I was so happy to have that surgery, and I think you will be very pleased! It will probably correct your permanent downward stare. It takes 2-3 months for the muscle to heal, so like everything else with TED and graves’, instant gratification is not happening. Mine result was great the first time. It is an easy surgery and recovery. I think you will be extremely happy with the results of this surgery.

Shirley

[hoochie]

#1062301

Thanks Shirley for the info.
I am looking forward to seeing the Dr tomorrow and seeing what the next step is. Will post a followup.
Thanks
John

[hoochie]

#1018029

Hi
Haven’t been on this board in a few months. I was diagnosed with Graves around Feb of 2010. Had my thyroid completely removed in 2007. My Endo doctor has called for labs of TSH and TSI the last few visits. My TSI remains high…around 391.
But the doctor yesterday was very pleased with my TSH, saying it was perfect and has been that way for well over a year.
Now tomorrow, I have a followup appointment with my Opthamologist. The last time he discussed the possibility of surgery this fall. I feel like the inflamation or active phase of this disease burned out last summer. I no longer have any inflamation in my right eye and can move the eyes much better. However, the damage has been done as the right eye is in a permanent downward stare. So my question is: is TSI always an indicator of where you are in this process, or as my Endo doctor said, the TSI being stable was the most important. Thanks John

[Kimberly]

#1062302

Hello – I just wanted to add that some docs do believe that there is a correlation between TSI and the progression of TED; however, not all doctors agree. This is one of those many, many grey areas that tend to come with Graves’!

Keep us posted on what the doc says!

[snelsen]

#1062303

Yes, perhaps, but to me, it seems pretty academic,and the real parameters for TED in active phase and passive phase are pretty much when the eyes stop changing, and/or getting worse, and seem to be stable. i guess if these factors are present,and it is clear I was in the cold phase, I would not care if my TSI was in the sky. I would not let it be a reason for my surgeries, especially the strabismus surgery. It was so wonderful to have that procedure.
Good to point out, though.
Shirley

[hoochie]

#1062304

Saw my eye doc today. He did a lot of measuring and looking in the eyes. He felt that the eyes are stable, even though the TSI is on the high side. So if all goes well and stays the way it is now, I am looking at my first surgery around October. Of course there are three surgeries, the first being the orbital decompression. So, am looking forward to the time when I have my single vision back. Have a great day. John

[snelsen]

#1062305

Hi, that is great news! A sign of real progress. I was so happy when i was through with the active phase, ’cause it meant surgical corrections could begin.
Shirley

[Author]

Posts