Where to have decomp surgery?

Hello to all sufferers of TED,

I am happy to have found a forum where I can read about other's experiances with both the disease and operations.
My diagnosis dates back 2-3 years and after ruling out tumours by performing 2 biopsies on the inflammed tissues the doctors here in Sweden claim that it's with very little doubt TED as I was treated for thyroid disorders 13 years back.However there is a lack of specific antibodies to support the diagnosis fully.The symptoms are identical to one sided TED.Orbital decomression has been discussed after several different dosages of cortisones were tried (only stabilizing)including high dose cortisone drop.3 mm protrusion is where it seems to have landed due to muscular swelling and scar tissue .Decomp may be the only solution.My first biopsy was in an operating theater and the nerves on the right side seem to have been damaged causing numbness in the forhead and head.I experiance slight relief of symptoms by means of intake of ambien  which after 2 years consumption obviously has problems of it's own.The doctors can't understand why ambien helps (temporarily) and seem otherwise at a loss with regards to treatment of TED even at the main eye hospital here.I am wondering which nation and team has the best reputation for performing such surgery (decomp).I understand that many of you have had complications from surgery and I fear this.I also wish to commend you on your courage and steadiness.This is a tough and lonely illness.Hard to cure and misunderstood by society.It's debilitating.I hope we all make our way out of this mess and hope to hear from some of you. Thank you for taking the time and energy to read this.


This discussion is related to Orbital Decompression Surgery.

[John C Hagan III, MD, FACS, FAAO]

TED=thyroid eye disease   No reason ambien should help other than an 'idiosyncratic' reaction (strange reaction to your chemistry).  Suggest you see another center that has an oculoplastic orbital surgery team for another opinion.

JCH MD

[mythyroideye]

I had deompression surgery 6 months ago at the University of Colorado Rocky Mountain Eye Clinic. Dr. Durairaj and Dr. Kingdom do more surgeries from the midwest to Califormia and are just wonderful. They do a few of these a week because people come from all over to have them do the surgery. I highly, hilghy recommend. They both have additional training just in this area.

[John C Hagan III, MD, FACS, FAAO]

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[keldoll]

I have Graves Disease that has affected both eyes. I was learning to live with the bulge however tonight my 4 year old daughter told me it bothers her that her friends mention her mothers "big" eyes. I am considering consulting on having the orbital decompression. I already had the eyelid surgery almost 2 years ago, will that affect the orbital decompression surgery? Also I am in So Ga. Do you have a recommendation of a orbital surgeon in this area?

[John C Hagan III, MD, FACS, FAAO]

I trained at Emory and would suggest you consider going there. World class ophthalmology department.

JCH MD