What should I expect?

[LonelyinLangley]

In Feb/Mar of this year I had 2 retinal procedures and 1 full retinal surgery.  Weeks after the surgery the retinal surgeon said I was ready to go back to work.  However, long story short, I had developed trigeminal neuralgia from the cryopexy tool being rested on my foreheard, just above the left eye, where the brow and nose meet.  The TN diagnosis has been confirmed.  

My left eye has required a lot care, not from the retinologist.  My pupil in that eye is locked in an "open" position, making me very photosensitive.  I wear sunglasses even indoors.  My tear ducts stopped working on their own and after several months of hot compresses 3 times a day, The lids now droop enough to obstruct my field of vision, so I have to have lid surgery soon.  My ocular pressure has been bouncing around from 16 to 39 and back down.  My ophthalmologist doesn't know what is causing that.  I have been fully compliant with any course of care they have proposed.

Is all this fallout common after retinal surgery?  No one else I've talked to believes it should be this tough.  

What happened to me?  Is my situation rare or common?

[LonelyinLangley]

I found a copy of the letter the surgeon sent to my GP.  It reads like a very simple procedure to repair the horseshoe tears that were right beside each other.  The only thing I can think of that could activate TN was the cryo tool on my forehead.  He does not mention my request to move the tool off my forehead during the surgery. ....  I have requested a referral to another retinologist.

Proceedure:
The patient was given a piegulubar anesthetic injection made of of Marcaine 0.75% and xylocaine 2% plain without preservative.  

A 23 guage transconjunctival infusion line was inserted inferotemporarily 3 mm posterior to the limbus. In the superior quadrants, 23 guage transconjunctival cannular were inserted 3mm posterior to the limbus.  The BIOM panoramic viewing system was maneuvered into position.

The vitrectomy instruments were inserted.  The gas bubble was removed. A completed posterior vitrectomy was performed.  The retina was, at this stage, completely attached. Cryo was applied to the horseshoe retinal tears superiorly. Endolaser was then applied to the peripheral retina through 360 degrees with a total of 1307 burns being placed.  An air fluid exchange was carried out.  The eye was filled with 10% C3F8 gas.

The 23 guage cannulare were removed.  No sutures were required, A subconjunctival injection dexamethasone and cefazolin was given.  The eye was patched over, atropine and Alphagan drops, as well as Maxitrol ointment.  An eye shield was applied."

[Ray T Oyakawa, MD]

Did you have a scleral buckle?  You may have anterior segment ischemia causing the pain and dilated pupil.

Dr. O.

[LonelyinLangley]

Thank you for replying Dr. Oyakawa!  

The neurologist and neuro-ophthalmologist believe that resting the extremely cold cryopexy tool on my forehead as he did, (and I did tell him during the surgery that it really, really hurt), and the fact that he was not quick in moving it - could have an adverse affect on the nerve bundle just under the bone somewhat like frostbite.  I am on 300mg Gabapentin 4 tid and the pain is barely controlled.  I am waiting for an MRI.

The pupil is dilated because the muscles controlling dilation have ceased to work in the surgical eye, so it won't move on its own.  The only drops I have are Combigan AM/PM and have had Azopt added this morning.  My pressure was 19 last Friday, and 30 today.  

I'm at my wit's end.  And I used to be pretty darn witty, but its been 8 1/2 months now, and its just not funny anymore.

[Ray T Oyakawa, MD]

I have never seen or heard of trigeminal neuralgia after a retinal procedure.  I have done thousands of retinal procedures.  Is your dilated pupils from drops or a complication of surgery??   I would recommend a second opinion.

Dr. O.