[MsVazz]

#1060709

Hi New to the GDATF forum — I’m writing in hopes someone has had similar experience and can offer suggestions. I’m really in a state of confusion as to my next plan of action. Below is a timeline of events leading up to diagnoses and treatment. Sorry I don’t have exact numbers at the moment, but I’m a 33yr old female, non-smoker, fairly active(used to be), no children, and no family history. Whirlwind falls short of describing the last 8 months of my life, but my current issue is whether to have orbital decompression and eyelid surgery. Occuloplastic surgeon is willing to begin the process this March so I can be semi-healed for my wedding this June. My options are:

• Skip Orbital decompression and just do the retraction surgery
• Begin with the orbital decompression surgery, but cosmetically look the same by my wedding in June. Have the retraction surgery short time after.
• Lower the lid temporarily with botox
• Do nothing, until after I have children since the risk of graves reoccurrence is significant, making one or both surgeries useless.

I’m unsure what to do next, this disease has taken so much from me already and all I want is to get back to normal and hopefully start a family soon. Any suggestions or thoughts are welcomed.

Time Line
5/15 – Symptoms of hyperthyroidism (possible was happening for some time)

6/15 – “woke-up” with eyelid retracted, went to ophthalmologist, send to see endo in emergency.

• First endo was not helpful didn’t see the urgency.
• Hospitalized for thyroid storm, put on beta blockers and methimazole
• New Endo – diagnosed with Hyperthyroid and Graves disease; plan of action was bring levels stable and remove thyroid
• Week later taken off of methimazole due to allergic reaction, only option to do RAI
• Immediately given RAI treatment

7&8/15 – No change

9/15 – Diagnosed severely Hypo, put on Levothyronxine
– Lathargic, weight gain with no appetite, puffy eyes in addition to 50% of hair loss
– Eyes extremely painful and dry. Face and head pain unbearable at times

2/16

• Levels mainly stable
• Eyes no longer as painful or dry

[Kimberly]

#1184263

Hello and welcome – I have mild/moderate TED, but so far (knock on wood), nothing that is requiring surgery. Hopefully, those who have been through surgery will chime in.

Has your current ophthalmologist offered his/her opinion as to the best option? A second opinion might also give you a higher level of comfort.

I do know that the usual procedure is to do the decompression surgery prior to eyelid surgery.

In terms of pregnancy, yes, there is a risk that the Graves’ will relapse. However, the thyroid issues and eye issues don’t always occur together. My understanding is that it’s much more rare for the eye issues to recur, and when it does stress or smoking is often the culprit.

I know this is a tough decision, especially with such an important milestone coming up! Hopefully, others on this forum will be able to chime in with their experiences.

[snelsen]

#1184264

One thought for you to consider. See a neuro-opthalmologist, they are hard to get appointments with, but if you mention decreased vision and diminished (reason for an OD) they will scoot you in pretty fast. To do the eyelid procedure first, is not very logical, for your eye will be receded from where it is now, after the OD. It has to heal, then they eyelid procedure is done on a stable eye. The bigger procedure is the OD. My strabismus surgery was a piece of cake. And wonderful to not have double vision, which i did have.
Docs can help you with this, but if you are a candidate for OD, I think the do nothing option is a poor one for you Better to be in control of this, and then it will be “done.” If you wanted to wait until after the wedding, to have the strabismus (eyelid ) surgery, that is an option to discuss also. The big surgery is the OD, the small one is the eyelid.

I wanted to check in with you, I have a VERY early flight in the morning, so have to pack, (being sure to take sunglasses!) and get to bed.

Welcome, you will like everyone here,and it is a reliable place for you.
Shirley

[Liz1967]

#1184265

I had severe thyroid eye disease. I thought I could avoid orbital decompression as I had very little proptosis. I had some optic neuritis but that was corrected with steroid infusions. Glad I had it done on both eyes. For me, it helped the dryness a lot. I need muscle surgery and they needed to make room to move the muscles and so my eyes could move better. It can recur years later, so if you skip the decompressions and have just lids or muscles, it can ruin the effect of those surgeries if it recurs. Your orbital surgeon is the best to advise you. If he thinks you need it, you need it. I had lids done in September and the one really retracted lid is now a bit droopy! I had it done at a center specializing in Graves eye, so this surgery can require some fine tuning. If it doesn’t go up, I will need it fixed again so none of these surgeries always go perfectly! The lid surgery helped the dryness. They do like your thyroid levels stable and your disease burned out before doing lids. The orbital decompressions help the inflammation a lot, which may hasten burn out of the disease as it does stop optic nerve issues too. Good luck!

[MsVazz]

#1184266

Thank you for taking time before your travel to answer my concerns. I will look into seeing a neuro-opthalmologist. At the moment we are thinking to do the left retracted lid, to help with the dryness, and revisit the possibility for more surgery at a later time. I have very little proptosis and she would only doing minimal fat removal. Making the decision by the end of the month, so I will keep doing research before then.

[Author]

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