New to BAF

General
1

Hello,

I am 41 years old, a wife, and a mother of two children 6 and 3 years old. In August I noticed a drastic change in vision in my left eye which prompted a visit to my optometrist. I was just there 2 months earlier for a routine eye exam and left with 20/20 correctable vision. After a very thorough exam he told me there was nothing wrong with my eye that he could see, I should stop using my eye drops for allergies, gave me sample eye drops, informed me he was retiring that week and to come back in 4 weeks if the symptoms still persist and I would see someone fresh out of college who was current with all the eye diseases.

So I left hopeful, called my cousin, an optometrist in a different state, 2 weeks later when the symptoms didn't go away, and he recommended I go get a second opinion right away. And I did the very next day (monday). The second optometrist, told me the same, nothing he could see, however, my vision had clearly changed and this could be something his technology could not detect and set up an appt. with a specialist that week.

After a two hour appt. that friday the Ophthalmologist, concerned I had MS, sent me across the street for a STAT MRI. The radiologist did not let me leave, showing me the results right away. He called my husband and off we were to pick up our 2 little children and then to the hospital emergency room.

Less than 48 hours later I had brain surgery for a Giant Size, Wide Mouth, Brain Aneurism. Due to the location and size of the aneurism, an embolization technique was used using a Pipeline device.

I am still recovering and my brain getting back to normal after having to be on a heavy dose of steroids, as well as a lot of other meds, for 3 months. My optic nerve has been damaged and my sight 80/20. My balance and vision have been impacted the most as far as I can tell so far. I will know more about the prognosis of my eye after an angiogram with a retina specialist next week.

I am here because I need help getting through this. I am going through the worst depression I've ever experienced. I'm not sure how to handle it. I know I should be happy I am alive but find I am so sad since I've been tapering off the meds which makes me think it's related to the medicine but doesn't make it any easier to get through. Accepting the loss of vision is difficult and wondering when I will feel normal again frustrating.

Do any of you have suggestions for coping?

2

Hi there!

I haven't done much posting on this site myself, and my own story is very different from yours, AND I know that when dealing with depression and anxiety, although encouraging words from others can help, everyone is on their own journey...but that said...

I think that your story is heart-wrenching but beautiful all at once.

You were in the right places at the right times. (And I say that not being a believer, really in fate or spirituality or whatever. Just seems like a fact to be thankful for). And while it will be a long road ahead, it seems, you have many things going for you.

When my dad's aneurysm suddenly ruptured when I was 22 ish (and my brother was only 13), he died within hours. The only warning he had was a headache the night before which made him say "If I didn't know any better I'd think I was having an aneurysm."

As a result, he never got to see us "grow up" and become what we are today. At the time when we were talking about it as a family, my brother said that he'd rather have a dad that couldn't do a few things here and there than none at all. (We had talked about what it might be like if he had made it through).

So while I can't claim to know what it feels like to have worse balance and vision than ever - that must be devastating in a way that only you can truly understand - maybe it would help to think that you still have much, much, much more than you may have lost.

I know that your kids (who I assume are beautiful) will ultimately and always feel that way, even if they can't completely comprehend it right now.

Your family seems very lucky to have someone who is so in tune with their body and well-being to go and seek help when necessary. You knew something wasn't right and kept seeking help until you had an answer. I'm sure that that strength will help you "get through"...whatever in the world that might mean.

I've never met you, but I very much admire you as a person. Your family (and I bet the wider world around your household) is lucky to have you still here.

3

Again Welcome...Oh sweetie...you are feeling what many of us have felt...and couldn't understand...it has something to do with the brain and being touched...we really don't know enough about the brain...and many of us are even diagnosed with "PTSD" after our procedure...First, don't be so hard on YOU...it is a normal emotion after everything you have been thorough...Second, don't suffer alone, if this continues (the depression) talk to your Doctor...Lastly, take "baby steps" and try to take care of YOU...but enjoying the moment...maybe watching a good girl's movie, or comedy, taking a walk everyday...etc., find something that helps that depression even if it is a moment a day...

You will get through this..."one step at a time"...Prayers and positive thoughts out to you ~ Colleen

4

bless your heart. i so feel you. i wish i could offer more but know you aren't alone.

that's why i'm back here now - i need support from my fellow survivors.

please tell me you at least have supportive friends and family. that makes a world of difference.

5

I had clipping surgery 8weeks ago so I’m also new but this site has been very helpful. I describe myself as a roller coaster of emotions. I try to be thankful for making it thru surgery with little side effects but there are days the emotions get the best of me. Baby steps are the only way but if you’re like me it’s really hard & I’m not very patient! Neither is my 10tr old. It’s hard on him trying to figure out which mom he’s getting each day! Sometimes I can keep up with his HW & sports & sometimes I just have to let it all go & know it’ll be

6

Oops, I meant know it’ll be ok, hang in there, it gets easier, just give yourself time

7

Hello welcome to BAF. Sorry to read you are having a tough time. The high dose steroids they use in this situation can have dramatic affects on mood in some people either making them high or low, so some of your mood problems may well be due to medication. (Also if you've been on steroids 3 months there is a possibility you may not have enough of your own around once you come off tablets and that can make you tired and unwell too) Though of course the impact of what you have been through and what the future might hold can also affect mood. Hang in there, it is early days in your recovery. You may want to chat to your primary care physician who may check you are making enough steroids of your own or have other help to offer to get you through the depression. Counselling or antidepressants perhaps. I think when we lose something that was important, in your case vision, we have to go through a kind of bereavement process, so its normal to get low at some point.

You are welcome to have a moan on here at any time. There will always be someone here who understands and/or has gone through something similar (and got through it!)

Judith

8

Thank you for the encouraging words. My father passed when I was 9 years old so I can relate with wanting a father no matter what the condition as long as he was alive. I have always been a fighter but this really has me down to a daily struggle. I strive to be as positive as I can and know things have to get better.

9

Thank you Kathy. I have support but both our families live out of state. They were here right after the surgery which was wonderful. It seems like things have gotten harder since the surgery in August. My eyesight continued to worsen which added to the depression and then tapering off each medication has put me through a whirlwind of emotion. Not having my full vision is something I haven't fully accepted and I'm not sure how I'm going to handle to. I've lived without my family close by for 14 years but now I can't seem to handle it and feel extremely alone.

10

Hugs to you….while it's terrible that you had this ordeal - I am grateful you had a physician who was willing to make sure you received the care you needed.

I wish I had the magic words to help you cope with this better, but I hope that talking about it with folks who have an idea of what you are going through (my story is MUCH smaller and less dramatic, but I sympathize) and a loving family will help.

They say a problem shared is a problem halved. Share you problem, tell you story and hopefully that will help. If not, I would talk to your physician honestly about the depression and perhaps medication for a time and counseling will help.

You are in my heart and prayers...