Janice's Posts

I am so sorry you are continuing to have problems. I myself had dozens and dozens of optical migraines (auras) in the weeks and months following my AVR surgery. They gradually decreased with time to where they are now a rare event. Just curious if one of the neurologists specialized in neuro-ophthalmology? This specialist may have more insight into your issues. (Pardon the pun) Hope you find relief soon!

Thanks for your advice Marie, as I did see a neuro-ophthalmology specialist referred to me by an Clinical Asst Professor at Ohio State University in Ophthalmology who gave me a great exam, but said he was not the one to help me, but referred me on. This doctor was amazing, and answered many questions, so I felt like I had finally reached the right track. I just saw the Dr I was referred to December 30th. I took my MRI disc and report and all other reports, hoping for answers. He was very nice, listened, and checked me over good. I will discuss his recommendation over with my family doctor, as he follows me very closely (I am blessed with him), and go from there. He did say some open heart patients do have these problems, and I happen to be one of them. The double vision, blind spot on half the eye or whole at times (always the same eye, right), numbness on the left side of my mouth, lip, teeth, tongue, left hand, and most of the time with no headache to follow, some feel they come from particles left in the heart/lung machine, even though are cleaned extremely well. Really no verification has been proved that this is a problem, but many feel that it is. Anyway, he suggested that I stop my Topamax, and try Magnesium Oxide 250 mg twice a day in its place. This is OTC. See my family doc 01/06. He thought it may be a try, plus I am to stay on the Emgality (monthly) Injection. I can feel them when one is going to start, and they have decreased in the amount per day I am having, so that is a blessing. All in all, it is something I will learn to live with, but hope and pray they one day will just stop.

Hi Janice. From time to time, I get those aura which give me a bad headache. But fortunately, they are not very often. I'm glad you are staying positive. It definitely helps. I've not experienced any numbing. I hope you feel better soon. I know it can be frustrating when we don't feel our best.

G'day Janice, I too have a leak which is severe. A couple of weeks ago I had a CT, TEE & angiogram and it was determined that my aortic regurgitation was due to a paravalular leak and not through my st jude medical heart valve. Because I am considered high risk as it would be a 4th ohs & technology has improved, my interventional cardiologist wants to have a crack at plugging the leak via a catheter through my groin. Paravalular leaks apparently happen in 5-17% of valve replacements. Often it is a failure in stitching of replacement valve and native tissue which is often calcified particularly in bicuspid valves. Reoperation was best practice back in 2007 but hopefully a transcatheter plug may do the trick. Do you know if your leak is through the valve or around?

Hi Janice. I'm a long time sufferer of ocular migraines. This was exacerbated after OHS 6 months ago. I have all different types of migraines now- aura, numbness of my mouth and finger tips, sometimes messes with my verbal abilities(that one is rare) and vertigo migraines. I have some type of those everyday since surgery. I'm following to hear what others say. I can't take a preventative for migraines now because my heart hated that medicine!

I hope that your symptoms ease, Janice! I was thoroughly checked out early on because of the first, strange & alarming ocular event I had while still at Cleveland Clinic. They thought I might be having a stroke at the time. These persisted frequently and still occasionally occur. Also, lifelong migraines had stopped five years before my surgery, but they returned with greater regularity after OHS. Sometimes just the aura comes. My current eye dr. believes the ocular events are related to migraines. Sommer, my heart goes out to you, too! If you see this, I experienced at least two of the migraines that interfered with my ability to communicate--there was never anything like that before and it scared the heck out of me, till I realized the connection. I had forgotten all about that, till I read your post.

Tim: no one has ever mentioned whether my leak is through the valve or around, but is one question I will ask at my appointment on June 6th. I have so alone with this problem, so it does ease my mind somewhat knowing I am not the only one having these problems. They are so frustrating and scary. I really don't like the double vision, especially when I am out doing something. I take deep breaths and try to relax, but now it is making me very upset as I thought they would cease by now. Thank goodness for my family doctor, as my surgeon at CC and my cardiologist here have been no help. All of i together is more than I can take sometimes, and I hate to complain to anyone, as no one likes a complainer, so I just pray a lot. I know that God is watching over me or I would have never gotten this far. Just knowing I am not alone in all this is so comforting to me. Thank you all so much. Rose, I had an aura today, my first for such a long time. Usually the numbing, double vision and black spots are my usual. I used to get auras a lot before OHS. Again, thank you all so much.

Janice- you are not alone. I have read and read about this, and there are so many people like us that experience the visual stuff after OHS. Good news, many reported that it slowly went away. Really slowly- like taking years slow. Most report that cardio and neuro did not believe that these 2 things (visual disturbance/migraines) could be related. However, all of us that experienced it and can pin point the exact time the increase of these symptoms would like to differ!!! I remember praying a lot too. I remember breaking and crying when a horrible vertigo migraine woke me up in the middle of the night. I was 7 days out from OHS. It hit hard and I thought this is it- I am having a big stroke. Then the mean spin stopped after 5 seconds. I continued to have slow spins the rest of the day. I broke and started praying at that moment and haven't stopped. I pray daily for a calm heart, easy breathing, a strong soul, and a peaceful mind. Things have improved and I found that I could handle so much more than I ever knew. My body has learned how to stand up to migraine pain and get by with 1 fiorcet for 24 hours if I have a migraine. Before surgery I would take 2 fiorcet and naproxen as needed. I can't have Nsaids now so that is out of the equation. The fiorcet has caffeine and because of that I have to limit to just one. Catie B- you helped give a little peace of mind to me today. I'm glad that you shared your experience. It was terrifying not being able to talk. You should google Reporter Serene Branson migraine on air. This was exactly what I experienced at about 5 days post-op.

What a help this has been to me. The strangest part is that my migraines are all ocular, and as one who used to have the worst migraine headaches ever, I rarely get a bad headache after the ocular/visual/numbness/aura/spots I get now. Some days I have so many it is awful. The dizziness I get is every day also, but the visual problems upset me more. If I do get a headache, I take 2 Tylenol with iced tea, as the caffeine does help. I thought I was the only one who was dealing with this, as no one ever posted about it. I did get a call yesterday from my new surgeon at Riverside Hospital in Columbus, Ohio, and he wants to assess me again for my valve leak. It has been almost 2 years since I have seen him. My cardiologist here in Springfield, Ohio, forwarded my TEE onto him. I am glad he is following up, as that does give me some peace of mind. Thank again for all your posts, as I am sure that there are more of us out there having these specific problems.

Janice, I'm so sorry you're having to deal with so many of these episodes and the symptoms they bring--and so frequently! It must be very disconcerting. I dearly hope these start to decrease in number and that your symptoms will ease up. I also hope you'll have a good report when you see your surgeon. Apparently, there are many different manifestations of ocular migraines or things of that ilk. I still sometimes get the squiggly and more typical auras. Sometimes pain follows, sometimes not. Like you, I usually take Tylenol, in case. The new thing that was so startling first occurred about a week after surgery. Most of the field of vision in my right eye suddenly disappeared. I've had various amounts of my field of vision in that eye gray out or white out. Thankfully, only for a few minutes. But it was terrifying at first! Sommer, I'm so sorry you and Janice have had to cope with migraine-induced vertigo. That sounds awful! I did indeed consult Dr. Google to learn what was going on with briefly losing my command of language those times. It's a number of months ago now, but I did see the Serene video and just watched it again after reading your post. If I remember my incidents correctly, I botched one phone call, but found it especially disturbing when I tried to write something down and wrote different words than intended--completely unassociated words. I was so relieved to learn this could happen with migraines.