[shop_momma]

in reply to: Recurrence of TED after orbital decompression surgery?? #1071528

Well its been a long time since I posted but update as follows: I had two minor in office lid correction surgeries (one in November 2010 – the eye that had the orbital decompression and one in April 2011-to correct the ptsosis on the other eye) and all went well with no complications or side effects. I was treated preoperatively with a steroid dose pack as a precaution. Then on July 27 after a long exercise I looked in the mirror and the original eye that presented with TED the lid was completely retracted beyond the iris!! It was shocking…I was out of town and took a few minutes to relax and then called the doctors office. They had me email a photo. I had just seen the doctor the week before for the final post op on the other eye lid correction and both eyes looked great….Within an hour or so the retraction was gone but the eye tissue was definitely puffy and swollen but the eye itself wasn’t red or irritated. Over the next few days the swelling receeded. Doctor wants to see me in a month….but this is very strange. My thyroid still tests normal and I feel fine. Eye is back to normal now…I really don’t know what’s going one. Has anyone else had recurrences like this?? It’s been many years with no active eye changes…I really don’t understand and would welcome hearing anyone elses experience with flare ups…

[shop_momma]

in reply to: GED #1071372

Hi All, Just wanted to post that my eye doctor did mention the steroid injection in the eye region as a treatment, but not for me as he says my current eye situation is not severe enough and ALL treatments come with some uncontrollable side effects (and he said he is a control freak so he doesn’t like to use them unless really necessary). I wrote about my recurrence/flare up of my TED one week after orbital decompression surgery!!! Ugh!!! Search for that post if you are interested in the details. What I have learned for ANYONE with an autoimmune disease you should always be treated with steroids following ANY surgery…in my case I was treated with steroids but I am one of the rare cases that still had a flare up….For the next eye I will be treated prior to surgery also…. But take note everyone that you should bring that up to your doctor as a question before you have the surgery (or any surgery for that matter).

Additionally, the second dose of prednisone did help to lesson the symptoms and he now wants me to take Ibuprofen 2x day for a while….said I should be seeing gradual improvement every few days….lets hope so.

I too am going to see my "holistic" doctor….she is a licensed M.D. who practices a combo or Eastern/Western and Holistic medicine and she said I should be on anti-inflamatories so I will see her next week and I will post her recommendations after I get them…Are you guys really seeing improvement in the eye inflamation using the natural supplements?? I am definitely going to ask her about the Flavay and I will post her response….I hope she knows something about it.

Hang in there guys….we can get through this (I hope!!)

Lisa

[shop_momma]

in reply to: Recurrence of TED after orbital decompression surgery?? #1071527

Follow up after seeing my doctor again on Thursday….I am responding to the low dose steroid dose packk but I will take the last one tomorrow so I am wondering what will happen after that. My doctor says this is my bodies response to the surgery (even though I took a dose pkg immediately following surgery) and he says he doesn’t think this is a full blow recurrence of the active phase….but I guess I will have to wait and see. I definitely still have swelling and pressure but the eye redness and extreme dryness have lessened with the meds….I am still using lubricating gel, especially at night and less frequently during the day but it is not nearly as bad as it was at the beginning of the week.

For anyone else that might be interested here is what I have learned:
Out of 4000 surgeries he has only seen this about 20 times….I am quite special and unique~!!! Wish I weren’t…. He has seen recurrence after active in cases of severe trauma..one patient had a severe car wreck and he frequently sees patients after they have been operated on by others but before they were completely "cold". Mine was DEFINITELY cold and it was over 4 years since I first had symptoms and two years since I have had no changes..

I will have wait at least 6 months before doing the second eye (instead of doing it next week!!!) and I will need to take steroids prior to the surgery. My neighbor who has lupus and myestenia gravis (sp?) said that someone with an auto immune disease should ALWAY be under cover of a steroid when having surgery (something to note for others, might want to research this more).

He says since I have responded well to this low dose he is hopefully that this is just inflamation and will not become active enough to begin laying down the scar tissue and muscle englargement….thus undoing my OD surgery.

This is definitely not the outcome I had hoped for, nor expected….but I do have complete confidence in Dr. Soparkar and know that I am in qualified hands. Other than this my surgery and subsequent recovery were a walk in the park…all healed, no pain, etc….

In case anyone is interested I will keep this post up to date as I get more info and if there is any change in my symptoms.

Have a great weekend…..

[Author]

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