Scared to death!

I recently had LASIK done and now I I have low vision in my right eye and it continues to get worse as time passes. I have really bad glare in contrast problems. I have a little trouble seeing out of my left eye also. It has been really difficult to cope with and I'm scared that I'm going to go completely blind. The doctor say that I have an irregular stigmatism and when I look at the scans of my eye it shows ectsia of my cornea. I have three young children and am newly married. I don't deal with change very well I am driving all of my family crazy because I'm doing nothing but crying. The opthamologist said that he doesn't think that my vision is going to get much better. I just graduated with honors with my RN and was working to obtain my BSN but I have had to quit school now because my vision is too bad in my anxiety is horrible. I can barely care for my children and I feel terrible to my husband. I don't know how to deal with the loss and I'm really scared I'm scared of going completely blind in and scared of losing my family. I had to cut back hours at work and I'm really struggling. My husband thinks that I should just be able to get back up and deal with it but I'm not finding it that easy. I have even gotten to the point where I feel suicidal. Are you scared I don't know what to do! I cried my eyes out to my family and feel like I have no where to turn. I am losing everything I have worked so hard for and I am scared of losing my husband!

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Re: Scared to death!



Hi! I can see that everyone in this forum is giving you the best advice possible. You need to talk to people around you, open up so that you feel better. I too had LASIK done on myself a few years ago. At that time, we were living in Washington, so had the surgery done at this place that my husband knew. Although there was quite an adjustment period immediately after the surgery, I was alright after a while. I understand that you have a lot of questions and doubts that you'd like answered. In the end, you have to trust your doctor when it comes to all this and maybe even take a second opinion if you don't feel convinced. All the best to you. Please don't hesitate to email me at thelmaeharmon@outlook.com if you have anything to ask me personally.


Re: Scared to death!



Hello Lillady:

This is Maureen Duffy, who writes about eye and vision research for VisionAware. I've been watching the excellent comments and encouragement you have received from our online community.

Because I write about the eyes, I have some technical information to add to the mix.

As I understand it, you had the LASIK procedure for vision correction. Perhaps you wanted to no longer be dependent on your glasses. The procedure is very common in the US, but there are some serious potential complications that can result, including what you described: corneal ectasia.

This is an acknowledged potential complication from the LASIK procedure and I am sorry to hear that it happened to you. What I do hope is that your doctor clearly explained these potential complications to you before the LASIK procedure and that s/he tested your corneas to determine that they could withstand the procedure.

Here is an explanation of corneal ectasia from the literature:

"There is pressure inside the eye called intraocular pressure (IOP), which pushes on the back surface of the cornea. A normal healthy cornea easily withstands this force. But after LASIK, the thinner, weaker cornea may begin to give way to this pressure, leading to steepening or bulging of the front surface of the cornea with associated increase in myopia [i.e., nearsightedness] and irregular astigmatism [curvature of the cornea, which is normally dome-shaped]."

There are a number of treatments for ectasia, all of which attempt to control or repair the bulging cornea. I would urge you to discuss these options with your eye doctor, or seek out a second opinion. I cannot say that any of these are right for you, because only your doctor can know the condition of your corneas and other relevant factors.

These are some of the current treatments:

hard contact lenses
intraocular [i.e., within the eye] pressure-lowering drugs
intracorneal ring segments (ICRS)
corneal transplant
corneal collagen cross-linking

I hope this is helpful and please feel free to respond if you require additional information.

Maureen


Re: Don't be. Scared to death!



I'm on fairly intimate terms with depression and suicide. But probably not in the way you'd think. I had 20/20 vision when I attempted suicide. I woke up alive and blind. And blindness gave me my life back. The process of blind rehab literally gave me my life back. There's nothing more important than staying alive. Staying alive was hard, adjusting to being blind wasn't. If you need help call 800.273.2855 or write to me, sue@outofthewhirlpool.com. Life is beautiful, so worth living. Stay alive and ask for help. Sue Martin


Re: Scared to death!



Hi Lilady,

I think the comments you already received are excellent. I was first diagnosed with myopic retinal degeneration at age 42. The onset was sudden. I had a prior failed surgery on my left eye. My doctor was able to prescribe a contact that enabled me to function fairly well somehow with the remaining sight in my dominant right eye and that eye. I had young children at the time too. As much as I tried I felt my stature in the family had changed. While I could still do most things. The kids turned to my wife because it was not a struggle. It took a toll on all of us. I work in the behavioral health field and looking back I wish we had begun family counseling at that point. I think it would have helped everyone adjust better.

It is now after a botched cateract surgery on the left eye and a damaged epithelium that I am left peering through an irregular cornea with haze and what is left in the right eye. I transitioned to a scleral lens. Lately I am having more and more difficulty functioning. They say I am legal to drive, but, I am often frightened while driving. I live in a rural area. That is a blessing. I hate to give up the privelage of driving but would rather be proactive. The thing I am mourning the loss of the most is the fading distance vision. I love athletics. I am wondering how long or if I should continue cross X skiing, kayaking, and biking. In short, I am growing depressed and feeling more isolated. Hence, I would welcome talking with you or anyone who can relate to vision loss. Also, I know many would likely trade their vision for what I still have, but, somehow I can not help mourning my personal loss. If interested reply to sr.symans@yahoo.com.


Re: Scared to death!



Hi Lillady,
Thank you so much for reaching out to us, you have our total support!
I am also a peer advisor who is visually-impaired and can sense your distress, please know you can get through this difficult time of uncertainty.
The fact that you say, you fear you are losing everything is true and not true. You might have to change the way in which you do things which feels like losing everything you have worked so hard to gain but Lillady, please let me reassure you, change is the detour in life we wer not expecting to have to take.
I understand you don’t cope with change very well, most of us find change difficult and no wonder you are crying – the diagnosis of pending loss of sight is a major life-challenge…but we can help give you some signposts along your unexpected detour to keep you moving forward to a life with purpose!
Please take time to read Audrey’s suggested links and reach out in person if you need more support.
Looking after your needs right now is paramount.
If your husband is not able to offer emotional support, it may be because he may have his own feelings of vulnerability to deal with as well. It is not your fault this change is happening to your family. As Moms, we tend to be the centre of everyone’s wellbeing and if this shifts out of shape, we can feel the added responsibility that we are making the lives of our family worse.
Lillady, our children need a mom who loves them, hugs and cuddles but right now, you are the one in need of big hugs and cuddles. I give you these across Cyberspace to help you find ways to cope with your new challenge and seek support to rebuild your world.
Not from loss but from a detour that CAN show you the way forward!
Stay in touch, take one day at a time and sit with the fear but try not to panic, I know you will smile again to do life anyway! Go gently,
Maribel


Re: Scared to death!



Dear Lillady-I can certain sense your fear and anxiety and I am glad you have reached out for support. I am a Peer Advisor for Visionaware and I am a nurse who is legally blind. I have a genetic eye disease called retinitis pigmentosa which has caused me to lose vision gradually. So...I can relate to your fears...

There are many different conditions that cause vision loss and many different levels of vision loss. It sounds like you may still have a lot of useful vision that you can learn to live with. In the beginning stages, we all go through shock, depression and anxiety...it is normal...but guess what? It will pass...and you will soon want to turn your emotional energy to learning to accept the changes and move forward with your life. And the good news is...you CAN still live a full and active life!! I became legally blind at age 30 and was working as an RN, had three babies at home and could no longer drive. Yes it was a real game changer and my husband and I had to work things out to manage our household. In many ways, my vision loss brought us closer together as a family. There are MANY completely blind people who live very independently,work careers, have families and love life....blindness is not the end of life by any means!

If your vision changes are impacting your everyday life such as trouble reading regular print, driving, moving around safely, writing and using the computer, I would advise that you seek out an agency that serves your state for some help and support. There are Vision Rehabilitation therapist and Low Vision Specialists that can help you learn to make the most of your remaining vision. VisionAware.org has a directory of services where you can find these agencies. Here is the link: http://www.visionaware.org/directory.aspx?action=b... You can enter your state to "Narrow Your Search"

You also may benefit from attending a support group for the visually impaired and can ask these same agencies if there are any available in your area. I recommend you attend with your husband and/or other family members. They need support and need to learn about vision loss too. Your vision changes affect the whole family.

If your anxiety, despair and thoughts of suicide continue and are more than you can manage- I urge you to seek the help of a mental health professional. Many of us in the process of adjusting to our vision loss have needed the help of counselors...it is okay to ask for this help! You are in a grief process right now and seem overwhelmed by it...you must take good care of yourself so you can take care of your family. One thing that has helped me over the years is to not allow myself to always "think the worst" or jump to the 'what ifs" You are getting ahead of yourself and worrying about things that haven't happened yet...and may never happen! So take a breath... reach out for the help you need...talk openly and realistically with your husband. By the way, I worked as a legally blind nurse for 30 yrs! My husband and I are still married-just had our 30th anniversary and we have 3 wonderful, well-adjusted adult kids!! It will work out for you too...stay positive and I wish you all the best. If you would like to contact me personally to talk further please email me at amdemmitt@gmail.com Also you can check out my personal blog at seeingpossibilities.com to read more about navigating life with vision loss. I hope this is helpful to you and your family...Audrey




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