Degenerative Myopia

[beckrn]

Hi, I am a 37 year old female who has been nearsighted since age 5... now  currently a - 13 in both eyes. Thankfully I've always had good vision with wearing hard contact lenses during the day and glasses at night. I have been going to the same optometrist my whole life and all through the years he has basically just told me I'm at high risk for retinal detachments. That's about the most information he tells me. So last year  I saw an opthamologist  for a warped contact lens basically because he took my insurance at the time and during the course of my appointment he says, no joke, " Oh My, did anyone ever tell you that you have degenerative myopia ? "  UM NO !!!  I swear my heart skipped several beats and I  was asking him if it meant I would go blind etc. He was then just very vague with me, said I do have scarring in the eyes and the eyes of an 80 year old !!!! I'm 37 not 80 !!!   Someone in his office had broken a piece of his equipment so he darted out of the room and I really didn't see him again other for him to tell me to take a centrum silver daily.  an odd request I thought but I do take it.
So basically, I did go back to my usual optometrist and told him about this bizarre situation. He again, didn't say much other than the usual I'm at high risk for detachments.  My question to someone out there  is Degenerative Myopia a common thing that people have and should I be doing something proactive about it ???  I have a 4 year old whom I'm the primary caregiver for and  I want to watch her grow up. I never ever thought much about this until this doctor dropped this bomb on me. I swear I've worried about it every day since then, and that was 8 months ago!  Just recently has it been weighing on my mind so much that I thought I'd seek out advice here.   Can people like me with Degenerative Myopia go their whole life without issue or vision loss?   To my knowledge, no one else in my family has this.  Should I try to establish with an opthamologist  ahead of time just in case issues come up or is sticking with my lifelong optometrist ok ?  Please Help !!!

[achillea]

I understand about problems with the phone receptionists:  they are often not well enough educated in their doctors' specialty, so they won't recognize an unusual medical term.

However, degenerative myopathy also goes by a couple of other names.  Next time you phone, try either "malignant myopia" or "pathological myopia."  That ought to get their attention.

Be sure to emphasize that the Big Deal is that another ophthalmologist actually did give you this diagnosis, then dropped you like a hot potato, but you need to know if you really have it, and if so, how to treat it.  

[beckrn]

Thank you, I did contact my insurance carrier today and did find out it is covered by medical insurance. Next hurdle is to find a respected retina specialist who will actually see me !  The first place I called actually argued with me over what I have ! I think one of the problems is that people just do not know what this even is and when they hear the myopic part just want to assume I need an eye chart  exam or something. I tried to explain and was then told they will need to send the clinic a message to verify that they are allowed to schedule an appointment !!!  If I don't hear back on Monday I will be calling somewhere else.  Trying to stay local but may need to start looking in the Pittsburgh PA  area.  Thank you so much for your post, it is nice to be able to contact people who understand!  Rebecca

[achillea]

The ophthalmologist you saw was thoughtless, but more than that, it was extremely unprofessionally of him to give you that diagnosis and NOT follow up on it!

My understanding of degenerative myopia is that people who are at risk of this condition should be seen at frequent AND very regular intervals to watch for changes, which are not the kind of thing that usually show up in visits to optometrists.

Optometrists are not sufficiently trained to recognize or treat rare medical conditions, and degenerative myopia is not a problem of refractive correction.  It is a medical condition.  You have been given the diagnosis by an incompetent doc who failed to follow up on something potentially serious, so your insurance willl almost certainly cover a second opinion.  This is not just for your 'peace of mind.' This is to determine if you have something medically significant that needs watching or treatment.

Go ahead and make an appointment with a specialist or get a referral to one.  Ignorance is not your friend here.  For your future and for the sake of your kid, you simply have to know what's going on, and at 37, it is actually time to get on it.

[Seeingfuzzy]

My opthamologist in my tiny town says it is a rare condition. I am 66 and have been in his care for two years. I see him every six months for serial photographs. Once a year for corrective lenses if needed. I have lacquer cracks in both eyes too. He told me the worry is if blood vessels creep into the cracks.He told me that my eyes are shaped like ovals and are bulging at the back of them. He said that I must check each eye daily for clarity. If I note a difference I am to get into see him immediately. He said I would need an injection into the eye... and I only have days to get it. It is very important to seek immediate help. Other than that he said not to worry. I would have to drive 5 hours to Anchorage for that kind of treatment. I am not worried, just aware daily.

[JohnHaganMD]

Yes the problem would be called myopic neovascular macular degeneration and the injections would be anti-VEGF medicine (Avastin, Lucentis, Eyelea)

[CBCT]

Given the remarks of the insensitive opthamologist, you are entirely justified in seeking a second opinion.  My retina appointments are covered by medical, not vision, insurance.   Call your medical insurance carrier to see if you need preapproval for another opinion.  You are understandably worried and that alone is bad for your health. Hopefully, all is well and the retina exam will serve as a valuable baseline should things get worse.  

[beckrn]

Thank you again for your response and for sharing your personal experiences. I think I am just intimidated by this whole process and it is true what they say about what one doesn't know doesn't hurt the person, because honestly I did not know any of this til last year and  since that random doctor rudely blurted this out to me, I have worried about it every single day, especially since I have a young child to care for.   I do not routinely make doctor appointments unless there is an immediate need, and the idea of a retina specialist is for some reason intimidating for me...my experience with opthamologists so far, is not positive, I have mostly dealt with optometrists.    So are retina specialists ok with someone like me making an appointment, just for the sake of easing my worry ??  I had an exam by my usual optometrist in Oct 2014 and he says things are stable as of now but again the high risks.  Also I do not have vision insurance for that type of thing.  Rebecca

[CBCT]

When Medhelp was sold last year, the doctors stopped replying to questions.  They do sometimes post articles and reply to comments regarding their articles.  
Your best bet is to develop a relationship with a retina specialist who you trust.  He/she will likely monitor your condition on a regular basis.  I don't have degenerative myopia, but I do have retinal problems.  Last summer, I had a retinal tear on a Saturday morning and needed surgery that day.  Fortunately, I was already under the care of a local retina specialist and who did cryopexy, retinopexy, and eventually laser photocoagulation.  He was able to seal off the tear and prevent further damage.  I returned to him every other day for a week, then once a month, and now every six months.  
Best wishes.

[beckrn]

Thank you for your response.. I will check the list you suggested. I am near WVU n I believe they have an eye institute that might b a good start. I have noticed a few posts on here regarding Degenerative Myopia from a Dr. John Hagan, is there any way to refer my previous post to him?

[CBCT]

First off, ditch that opthamologist.  He should have referred you to a retina specialist.  I suggest you seek a top flight retina specialist.    Here is a list of top eye hospitals in the U.S.  
http://health.usnews.com/best-hospitals/rankings/ophthalmology

You might also contact an opthamology school in your area.  

Best wishes.