What was your experience with vitrectomy eye surgery?

@ferd64 Thanks so much for your reply. I like the idea of speaking with a few patients who previously had the same surgery by the doctor in question. How many former patients were you able to contact? What did you think of their comments? Thanks again, this is very helpful.

He gave me 2 names. I spoke with one who had had the surgery a year or 2 prior. He had no side effects, the recovery was uneventful with no pain (I had a similar experience). My retina doc recommended having a clear lense exchange prior to the vitrectomy because vitrectomy can sometimes accelerate cataracts. Since I'm in my early 60s and was very myopic (strong glasses!), I did get the lense exchange (done by a cornea specialist also at Mass Eye & Ear in Boston), which brought me to 20/30 vision, which is amazing. I don't know if that's relavant for you, but definitely ask whoever you go to about whether that applies to you. Dr. Demetrios Vavvas at Mass Eye & Ear was the retina doc who did my vitrectomy. Look him up online to get a sense of the level of expertise you should expect in a surgeon.

I had two macular hole repairs in my left eye and two more surgeries to remove the interocular lens that fell out of the capsule. I have a permanently damaged optic nerve.Ask questions, get the best doctor you can find.Don't take anything for granted.I have immacular hole in my right eye now.Do not know what to do myself.Good luck

@dianarobinson

You’ve really been through a lot, and I can understand your hesitation with another surgery. The good news is that macular hole repair has come a long way in the past few years — gentler tools and better visualization have made outcomes much more reliable.
When you see a retina specialist (not just a general ophthalmologist), you might ask a few key questions to gauge their approach. Here’s what you’d want to hear:
• “It’s a small-to-medium hole — success rate is around 90–95%.”
• “Yes, I do internal limiting membrane (ILM) peeling with dye.”
• “We use fine 25- or 27-gauge instruments — it’s minimally invasive.”
• “You’ll need to stay face-down only 3–5 days with a short-acting gas bubble.”
• “We’ll monitor your eye pressure closely to protect the optic nerve.”
If you hear answers like that, you’re probably in very good hands. And if anything feels uncertain, it’s worth getting a second opinion before deciding.
Wishing you courage and the best possible outcome — you’ve already shown such strength.
Remember:
When choosing a retina specialist, go to a top hospital and look for surgeon who uses :
• 25–27-gauge vitrectomy instruments
• ILM peeling with dye
• Automated pressure control
• Close post-op follow-up
Macular hole surgery has really changed and results are much better today. Please look online for a better understanding of the new surgical techniques used today.
.

Thank you. I have was just diagnosed with Con Rod Dystrophy and loose zonules. This caused the failure of the first surgeries. My new retina specialist would like DNA testing before surgery.I cannot get it.I've offered to pay for it.How do I get the DNA testing, so my new retina specialist fills comfortable.

@dianarobinson
• Ask for referral to a retina genetics or inherited eye disease clinic (often found at teaching hospitals or large academic centers).
• My Retina Tracker Genetic Testing Program – offers no-cost DNA testing for inherited retinal diseases (run by the Foundation Fighting Blindness). https://www.fightingblindness.org/open-access-genetic-testing-program
• Labs like Blueprint Genetics, Invitae, and PreventionGenetics also accept self-pay or physician-ordered panels for cone-rod dystrophy.
It appears to be medically necessary to get DNA testing to -
Confirm the diagnosis — inherited retinal dystrophies (like cone-rod) involve dozens of genes; identifying which one affects the retina may explain why your prior macular-hole surgeries failed.
2. Assess surgical risk — certain mutations affect the zonular fibers (the “springs” holding the lens capsule). A genetic basis could mean the fibers are inherently weak in both eyes, so the surgeon must plan differently.
3. Predict long-term prognosis — genetic findings help the surgeon know if further procedures will help or if vision loss will progress from the underlying dystrophy rather than mechanical damage.
4. Qualify for genetic therapy or clinical trials — inherited retinal diseases increasingly have gene-specific treatments, and identifying the mutation can open access to those programs.
Good luck - You are making progress - I see you found retina specialist and it's smart to ask for DNA test to analyze how to best treat your eyes. ( I read and research a lot on eye problems because I have macular degeneration and a macular hole which hasn't had surgery.) Check with your insurance to see if you get physician order for testing then it will be paid for by insurance. If you just order the test yourself then insurance won't pay. Not sure what it costs.

Thank you Had an ERG 6/18/24 at OSHU (CEI) compiled by a Dr. P. Yang diagnosed by a Dr. Evertt and Dr. Aristomenis Thanos at Devers. My insurance will pay. Also Dr. Thanos will share the DNA testing he started and his funding ran out. I will contact the foundation fighting blindness.I am a contributor thank you for the advice

@dianarobinson
Good you have found help-
OHSU / Devers Eye Institute → top-tier inherited-retina team on the West Coast
• Dr. Aristomenis Thanos → retinal-genetics specialist
• Insurance approval for ERG and likely for DNA testing
• Plan to contact Foundation Fighting Blindness for follow-through

So you are exactly where you need to be!

@dianarobinson
Forgot to give you this website. My retina doctor and yours is on the list .
Just put in a location and you find a retina specialist in your area.

Thank you.
My retina sp. at CEI is excellent. I understand his concerns about the loose zonules and the need for d n a testing. He's also concerned about the orbit reconstruction.I had 2000. I have money so I am willing to do what I can to help him get information that will help.Thank you so much. Please excuse the misspellings and punctuations.I have been legally blind since2019 and cannot see to read this.Thank you again