I started having vision problems in my right eye nearly two years ago. I didn’t have insurance at the time so I pretty much just ignored it. In May of 2012 I became eligible for insurance at my husband’s job so I scheduled an eye exam with an optometrist. He checked my vision and ran a couple of tests on my right eye and thought I could possibly have macular edema so he referred me to a retina specialist. The following week I went to see the retina specialist and explained to him the problem I was having with my vision. Imagine a donut in front of your eye, any open space is where I could see. The donut is where I could not see. So it’s like a very fine point in the middle I have okay vision and I have decent peripheral vision, everything else was just a huge blur. Also all light in my right eye is much dimmer than in my left. The retina specialist seemed to think I was crazy when I explained it to him. He ran some tests as well and said I did not have macular edema as the optometrist had speculated but said that it appeared I may have some thinning or damage to my optic nerve and that it could be the beginning stages of glaucoma. He referred me to a neuro ophthalmologist. I go to see him and once again, I explain the vision issue and answer all the questions “no I haven’t had any head/eye injuries”. He then orders an MRI to get a better look at my optic nerve because like everyone else, he has no clue what the problem is. On July 11th, I went in for the MRI. On Saturday July 14th, I received a phone call from the doctor saying that he received my MRI results and there was an anuerysm putting pressure on my optic nerve. He said he’d be referring me to a neurosurgeon. I thought wow, for him to be calling on a Saturday it must be REALLY bad. Over the next 3 weeks it was a fight with my insurance company to get the angiogram approved. I hadn’t seen the neuro surgeon yet because he wanted me to have the angio first. He said something about the annie being questionable which gave me some hope. So I have the angio and am told that there are 2 aneurysm, a 1cm one on the right, and a much smaller one on the left. When I see the neuro surgeon he tells me that due to the size, shape, and location of the annie he does not want to clip it which is all he does so he brought in another surgeon that does the coiling. We discussed my vision problem and he asked me if the other doctors I’d seen confirmed that I did in fact have a problem with my viosion because rhis type of aneurysm didn’t generally cause vision problems. I told him yes, they all confirmed there’s a problem outside of just needing glasses but had no clue as to what it was. He said regardless the aneurysm needed to be taken care of and spoke with me about coiling and informed me of the PED. We discussed the benefits and risks of each procedure and I opted for the PED. We scheduled it for the following week. Friday August 17th I went in for my surgery. I was terrified. All I could think about was that I was too young to die (I’m only 30) and I didn’t want to leave my 5 children with no Mother. I remember being in the freezing operating room and watching the anesthesiologist put something in my IV. The next thing I remembered was being wheeled down the hall on a stretcher and everything being fuzzy and hearing someone ask me what year it was and if I knew where I was. Then I realized, the surgery was over, I’d made it. The rest of the day was a huge blur. My groin area hurt so bad and I was given morphine as often as I could get it. The next morning I was much more lucid and was feeling great although I hadn’t been out of the hospital bed at all. The neurosurgeon came in to see me and said the surgery had gone great. He then asked if I’d remembered how he’d been skeptical about my vision problem and I said yes. He then told me that there had been another aneurysm right next to the larger one that would cause vision problems but that the PED was able to cover both annies. He said I may or may not recover my vision over time which I was aware of that possibility but honestly didn’t care either way as long as I’m alive. He then proceeds to tell me that I have mirror aneurysms. I have the same two aneurysms on my left side in the same spot. He said after I come back for my 6 month angio if all is well we can schedule surgery for the other two. So I’m now at home still recovering. My groin area is still quite sore and my head has been killing me. I’m trying my best to take it easy but with 5 kids and school just starting today its been a little difficult. I had to go get a few groceries and rode in the electric cart at the store so I wouldn’t be walking as much and had to deal with people looking at me like I had no business riding in it, totally unaware that I had brain surgery just 3 days ago. I’m nervous about these next 6 months, hoping the PED does it’s job and praying that the 2 untreated annies don’t get larger or decide to rupture. I’ve been through a lot in my life but none of it comes close to the feelings and fear I’ve endured these last few weeks. I pray that a little over a year from now I’ll have gone on my 6 month angio from my second surgery and be on here saying I’ve survived my aneurysms.
Hello Kenya. Welcome to the BAF community. Thanks for sharing your story. Many of us have similar experiences with doctors unable to work out what our symptoms are due to.
Having the procedure is quite a big thing for the brain, so to start with you need to rest as much as possible. Rest may ease the headaches too. Are there friends or relatives you can call on to help out with the children? If they are old enough I'd suggest telling them that although there is no scar you have had brain surgery and your brain needs time and rest to recover, so they need to do more to look after themselves and give you peace.
Judith
Hi Kenya and Again Welcome to BAF ~
I am glad you shared your story...in amazes me how many times Doctor's look at us like we are crazy and then when something is truly found ... and fixed they take things back...I do hope this makes them learn things to help the next patient...
Rest ... for the brain to heal...~ Gotcha in my Thoughts and Healing Vibes your way ~ Colleen
Thanks Colleen. I hope this experience does make them open their eyes and realize that not every patient is a darn hypochondriac.
You and me both...Gotcha in my Thoughts...Colleen