Connect
Not sure what I'm writing
Hello “ connect” members. I wasn't sure if I should start a new discussion or try to continue with previous submissions by me.
Since conditions continue to get worse I decided to start a new discussion.
I recall one interesting commonality that seems to arise in almost every forum subject I've read when I could see what I'm reading. That ability is virtually gone now. I wonder if devising methods and ways to peck out letter is a form of exercise helping to maintain a degree of “ seeing” or am I making things worse by over dressing my eyes.
In any event I want to finish the thought about that commonality that I've noticed in most threads and I'm wondering if this “ comminality” is not in fact the reason that “ connect” exists?
It's seems that no matter what the condition that one is writing about the bottom line is that a person seeks help from a doctor; often a specialist and they either find themselves in a worse situation than they started with and the come here to find others with similar situations and or experiences in hopes of finding/hearing that there us a solution.
I’ll own that for myself and I certainly do not want to upset anyone who may disagree with my though/opinion/observation. This is what I'm looking for and have indeed found to be very helpful.
Perhaps the only downside for me is my antisioation that something I read all too often leads to “ hope” and as often is the case for me; the other side of “ hope” is disappointment.
I thought that whenever it was that I was writing about that “ floaters and humor problem “ that helped “ Susan”? I thought that I could discuss it with my doctors and soon id get my vision back.
I'm not even sure if the doctors considered that condition as what was causing my vision impairment because I also started noticing that none of the various doctors I was seeing directly addressed that condition by name.
I all too often feel like the replies from doctors seem a lot like a deer that politicians give. That speak words but after all is said and done it seems that they haven't discussed any part of my question, observation, thoughts or God help me “ theiries “
On March 11th I went to Duke Eye Clinic. It took forever to get an appointment. I was there for 4.5 hours. Lots of testing. One test took 3 weeks exactly to get results back from MAYO.” paraneoplastic “ test. Was told good news bad news that suggested it was a false negative but not really explained except to say another exotic test that took 10 days for results with “ good news bad news “ which seems to me to mean they're really reaching speculating that my vision impairment has something to do with prostate cancer.
I'm not a doctor and I'm reminded of that however I'm presenting some simple logic based on KNOWING THE EXACT DAY my vision went blurry for a week and when it “ returned” the right eye didn't catch up with the left. The other problem is I think it has to do with 10 to 13 “Dialations” from May to August with each one taking longer to recover somewhat normal vision. But it seems that my theory is not liked.
Has anyone had similar problems?
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Since you mentioned prostate cancer, I’m sure our situations are different! Except I wasn’t convinced of my diagnosis until I saw a Mayo neurologist opthamologist. So my eye condition and ability to see fluctuates constantly too. I understand.
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2 ReactionsThanks for respinding MGM
I'm not sure if there's more here to read? I see a few days somewhere near the end of your post but my ability to hit those dots with my finger has been greatly affected so I'm not sure if I'm missing the mark or perhaps there's nothing more to read?
Everyday my limitation expand and my ability to remain calm demolished and becomes less and less.
I can't free my mind from thinking I'm going to die from stress.
Not sure what else to say.
Over,
Blind Melon
First, I have not had your symptoms with vision, but my husband, who is diabetic, has had periods of wildly fluctuating vision, often associated with poorly controlled (either high or low) blood sugar.
There is also the syndrome that you referred to called Paraneoplastic syndrome. Apparently it CAN occur as a response to cancer elsewhere in your body, with the hormones released by a tumor sending parts of the nervous system into overdrive. Fluctuation in those chemicals may account for the fluctuations in your vision.
Please do not give up, the best doctor to deal with this may be the oncologist or urologist who is treating your prostate cancer, and can make an appropriate, detailed referral or treat you.
Sue
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1 ReactionThank you. Sometimes I have enough gadgets to read/see something I’m thinking I know who wrote this by the color of your avatar and you kindly reply often to me but my vision impairment is affecting many other things mostly my brain and mind which I’m losing
I’m told I complain a lot and I’m not sure how to explain the details of what’s going on
Most of my providers mock me make jokes and laugh at me with references to flashback from the 60’s
The VA has turned their back on me asking why I need them when I have Medicare.
I had an extra Disney memory but now I don’t know what day of the week it is or the date.
I couldn’t find a volunteer to drive me to an appointment.
I do this thing that I call DRIVE BY BRAILE I use it to go to the store realizing that I can see lights and whir and yello lines so I drive where I’m familiar where things are .
But when I had an important appointment I rigged up my GPS AND MY BRAILE TECHIQUE AND DROVE TO MY APPOINTMENT.
I was told I was a day early and asked when did they start having Saturday appointments. It was Thursday and when I found out I started choking.
They fit me in and I got bad news my left eye went from 20/60 to 20/200 in ten days. The doctor said she was very worried and would try to find me a doctor who could see me right away But the scheduler didn’t understand that I had two appointments and presented it as a choice so I was marked as a no show and things continue to decline and go down hill.
I think it’s because I have no doctors who has their finger. Mom the pulse.
I’m adrift in space
I’m not sure what I wrote about anything Did I write about the surgery squeezing me in as the last patient on surgery day because things were getting worse very fast I saw the surgeon on June 28 he scheduled for surgery on June 29th.
It was going to be cataract surgery which puzzled me because for 10 years or so I was told I had a very small cortical cataract sometimes not even mentioned by eye doctors and was often told “ surgery is always risky and it should only be done when the cataract are so bad you can’t see.
I read online by an eye doctor group a list of eye conditions that most people never hear about including a great discription of many of the ones discovered and talked about here after most patients spent months or years trying new doctors until they find one who helps them I recall reading that one here that I responded to in my typical long winded reply because that’s what I do. I think I should apologize to everyone that I offend or bore with this extra long replies.
I have found it VERY INTERESTING not only how many people are not diagnosed or misdiagnosed and in several cases the same thi MGUS happened after cataract surgery: something else is discovered that was not seen or none until after cataract surgery. One “ FRIEND “ who I was introduced to by SENIOR RESOURSES TO help me with my mail told me she had a very bad case of “ wet Mac degeneration “ which was only DX’d AFTER the cataract surgery. If that could be me then take that “ baby cataract out “
It is startling and amazing how attached some doctors on to their beliefs.
The doctor group who has all of these eye malfunctions written about on the website didn’t think it was a good idea to take it out the neuro-opthomologist that I was referred to and was speculating that my vision problem was do to my prostate cancer absolutely Anf strongly was against the cataract surgery. We had a four way conversation with my world renowned prostate cancer doctor who put the referral in for neuro-opthomology based on the opinion from the group who had all of fed articles posted on line but I don’t know how to explain how convoluted everything was becoming and like the VA the doctors who I thought of as allies seemed to be turning on me, just what I needed.
The surgeon strongly suggested general anesthesia. The anesthesiologists thought a local cocktail was better that the general. The surgeon said he didn’t care as long as I didn’t move.
They peeped me and I asked the surgeon is I could have a piece of the cataract so I could study it.
Not know for his “ bedside manner he started yelling at me saying things like YOUR NOT A DOCTOR WHATS WRONG WITH. YOU TO ASK FIR SUCH THING AND THAT THE DURGERY PULVERIZES THE CATARACT and it’s vacuumed out so not of. What I wanted could happen and “ it’s time to shut up” so he could begin and he already set aside extra time past his normal quitting time so he wanted to get this done so he could go home. At the 30 minute mark he announced that it was done because I was so still he did the operation I n half the time he had allotted.
He didn’t know I was totally awake, SAW, heard, smelled and FELT every part of the operation. Had it not been for meditation techniques that I learned I would have been SCREAMING. After the operation I had no voice, couldn’t swallow or drink anything for at least 30 minutes and after his last test he beat it out of there. I’ve been messed up and traumatized ever since.
As kind as this post is I haven’t told you half of what resulted especially the apology from the Neuro doc who admitted her speculation was wrong.
I’m really messed up from all of this
Stuck….just STUCK
Hi Stuck, I'm so sorry to hear that your eye issues are not getting better and about the lack of patient-doctor partnership with your providers. I'm very worried about your "driving by braille." That sounds dangerous for you and for others. Have you looked into Area Agencies on Aging? Here is a directory https://www.agingcare.com/local/area-agency-on-aging
I can imagine you feel traumatized. Do you have people (family and friends) who are supporting you during your recovery?
Hi Voleen No, no family and all of my friends who would travel all died with in two years of each other two other friend suddenly go hit with getting old and they have their own songs Mama Mia zFigaro,
The phone rings. It's Duke eye clinic. They want to “ try to make good for a rear or more of screwups. It's “ the holidays “ I don't need a sheepskin to know what that means. I've received two apologies since August ( from Duke ) zero apologies from UNC zero Apologies from the VA I do have two doctors that laugh at my “ vision impairment saying it's flashback from the 60’s or “ it's JUST ALL IN YOUR HEAD”
Has anyone had the Yag Laser procedure?
Maybe I should post that seperately