It's been awhile since I've posted. While in the process of being evaluated in November 2005 for a possible second bypass (EDAS) due to occlusion of my left STA-MCA, I quickly deteriorated.  I had a cerebral angiogram as part of that workup. When they injected the dye into the right side it felt like a bullet went through my head and I saw stars, etc. At first I just thought it was an extremely unpleasant experience, but then the following weeks I noticed my vision would get blurry and the computer screen was harder to focus on. Then the last week of December I woke up with double vision which still persists. I was admitted to the hospital and received IV dexamethasone in huge doses to try to control the inflammation from my lymphocytic hypophysitis which I have in addition to moya moya. When I was discharged I noticed the vision in my right eye was different. Everything appeared darker, smaller, distorted, and there is a constant "shadow" in the central portion of my vision. This WAS my good eye. I have seen an ophthalmolgist, a retinal specialist who said I have a retinal pigment epithelial detachment and central serous retinopathy. There is also a probable optic nerve component to this and I fear I have permanent damage as I have noticed no improvement since being discharged the first week of January. I know there are several components going on here, both vascular and inflammatory, so difficult to pinpoint exactly what caused this and I sincerely hope no one here has experienced this, but if anyone has I would really like to hear of your experience.

Sorry to hear about your troubles with your vision. Were you able to findout the cause of the severe pain during the injection of the dye?

Tyler has had so many things changing with him these last few years. But so much of it can be linked back to genetics, including his vision and hearing loss.

Sorry I can't be of any help, but wanted you to know you are in my prayers. Rena

hi heide

i have only had one angiogram, october last year and i too felt pain and incredible discomfort - and saw stars! - when the dye was injected...

i didn't have any ongoing vision problems from this, however for the past 5-6 years i have had problems with blurred vision, temporary vision loss etc... (never any problems found by optometrists - i had a light prescription which never really solved much) which my surgeon thinks is resulting from occlusions of my arteries in the basilar region.

after my next direct bypass, my surgeon is hoping that the increased bloodflow from both sides (i had one side done in november) might "open" up the MM affected arteries in the basilar region.. but we have no idea if this may work. otherwise we are speaking of surgery in the vertebrobasilar arteries later this year.
i wonder if you could have had a small stroke in the basilar region during your angiogram?
do you know whether or not your angiogram showed occlusions/stenoses in the basilar region? it's a very rare occurance but i'd be asking questions!!

best of luck.

Hi Rena and Emily and thanks for responding. I haven't asked the doctors why it was so painful on that side only when I had the angiogram because I'm afraid they will think I'm going to sue or something. Silly huh? Of course I would not go that route, I just want some answers! I have had 2 prior cerebral angiograms, the first was painful also, but the 2nd wasn't. I do hope you have success with your bypass Emily. When I had my original STA-MCA in August 2002 I can honestly say that was the first time I felt "normal." Wish it had lasted. This most recent angiogram actually showed new vessels were "sprouting" from my right side and growing over to the left side? No mention was made of a stroke at that time and I'm not too keen on undergoing another angiogram at this point to find out.  Probably wouldn't do any good anyway. I did have several MRIs with and without contrast since the angiogram, and the only good news is after undergoing 12 radiation treatments to control the lymphocytic hypophysitis my MRI from last week shows "great improvement." So at least that wasn't in vain.  

Rena, I haven't been on this board in quite a long time and am not familiar with Tyler's history. I am sorry to hear your son, Tyler, has MM. Has he had bypass surgery yet or are there any plans to do this?  

Emily, I'm sorry you had a not so pleasant experience with your angiogram, but oddly it was a little reassuring to know others have had a similar experience and it wasn't just me.  

I wish everyone well and will post again when and if I get some answers.  

Hey Heide,
So sorry to hear of your problems with your vision.
I can't help you with that but I can tell you that the pain from your angiogram comes from lack of blood flow. I had the same excruciating pain with the first angio I ever had, to diagnose MM and when I was told to have a follow up angio after my first STA-MCA bypass I was dreading it, but there was no pain whatsoever, as my blood flow was vastly improved to before. As far as I know, the pain you experienced on only one side comes from the lack of blood flow on that side, so your blood flow must be sufficient on the other side. Hope this helps
Moira

geez heide, sorry to hear about your troubles in general, i always wonder how/why they think doing a bypass will stop more moyamoya vessels from sprouting... hmmmm
and what's lymphocytic hypophysitis?

yeah my first angiogram was incredibly disturbing... i can deal with the pain, but i guess just cause it took so long... and the weirdness of when the dye was injected, and having about 12 people in the rool, all injecting or taking something out of my veins (admittedly they were all female which i thought was pretty cool) - was just a bit over-whelming!
i thought i'd never be able to deal with havng one again, but then i ended up suggesting it to my surgeon as it'd be damn interesting to see... he thought it wasn't worth the risk at this stage though so we're waiting until after this next op.

anyway heide don't be afraid to ask questions!!!

My son Michael (11-years old) has MoyaMoya.  He recently began complaining about blurred vision.  I'm not sure why his vision is occasionally blurry, but I'll discuss it with his neurologist when he sees her again.  Thanks.