Janice's Journal

Marie Myers  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!

Janice Smith  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.

Rose Madura  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.

Tim Saint   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?

Sommer Russell  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!

Catie B  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.

Janice Smith  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.

Sommer Russell  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.

Janice Smith  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.

Catie B  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.

Susan Lynn  Welcome back, Janice. I'm sorry to hear about your complications. I hope you experience continued improvement. Merry Christmas to you! ❤🎄

Jim Harvey   Hi Janice,
Sorry to hear about this. I'm having MV repair done in April this year. Curious about what the cause of the leak is? I've read about leaks but nothing about what causes them.
thanks, Jim

Janice Smith  My surgeon at Cleveland Clinic could give no reason for the leak, just that it happens sometimes. I am continuing to do well, and looking forward to my grandson's wedding in Florida this May. Know all will go well for you.

Jeanette Davidson   I had AVR in 7/2015 . Moderate to severe leak as well. Had my first surgery in FL. Sent all of my new info to Cleveland Clinic awaiting reply. Many mixed opinions here from the surgeons in Florida. They can't establish if my leak is internal or X ternal. In a holding pattern. I understand your disappointment that it didn't last longer. I feel the same. The shock initially was very challenging for me I'm doing much better now. Hope you are hanging in there ❤️

Janice Smith  I understand your frustration also. I pray that you hear from CC soon, as the waiting is so hard. Glad you are doing better now. Will keep you updated on my progress. I, too, don't feel bad, but will see what they find out. Do you have a tissue valve?

Jill Krajnovich  Hi Janice,
I am scheduled to have AVR and aneurysm repair with the same surgeon at CC on July 25. My valve is leaking moderately but will have it repaired or replaced when I have surgery to repair the aneurysm. Your story concerns me as I am expecting much longer than 3 years out of my new valve. Please post an update after you have met with Dr Svensson. Best wishes and prayers for a good outcome!

Janice Smith  I most certainly will post and update. I pray that your AVR and aneurysm goes as well as mine did in September, 2014. I had a biscupid bovine replacement, and did great after the surgery. I, too, was expecting much longer than 3 years, so I am very anxious to have further testing done at CC and meet with Dr. Svennson. Will be thinking of you Jill. I hope you can read Jeanette Davidson's post above, as she had her AVR done in FL, 2015, and has a moderate to severe leak as well.

Jill Krajnovich  Thank you, Janice. I will watch for your update. I did read Jeanette's story. Hope you both get some answers!

Janice Smith  Met with Dr. Svensson on Tuesday afternoon. My valve leak is 2-3, and for now it will be watched till it gets worse and I experience more symptoms. I have some breathlessness when climbing steps carrying something heavy, little dizziness, but basically doing okay. I will have more frequent echo's done with my cardiologist to keep a watch on the leak. One of the things he did have me do was to stop my calcium with vitamin D, as to have a valve leak this soon is unusual, but there is a study going on related to calcium supplements and this problem. Nothing concrete, just looking into it as a possible. I trust Dr. Svensson and feel so much better after talking with him, so now I wait. When it is time, I will have the TAVR procedure, so thankfully will not crack the chest again. I had read up on it through our newsletters we get from Adam, and am so thankful for his insight into all of this for us. Prayers for your upcoming surgery, and know you will be in good hands with Dr. S and CC. Keep us updated, and I will do the same.

Jill Krajnovich  Good to hear your update, Janice. Glad that at least for now you do not have to undergo another procedure and do not face OHS again! I do not take calcium supplements and based on this, do not think that I will start. Thank you for your prayers. I need all I can get! I will continue to post any new developments and will watch for yours. Best wishes to you!

Cathleen DeWitt  Was your surgery in 2014 a replacement or a repair? You stated you still have a bicuspid valve? So I'm guessing a repair. This definitely can happen.

Adam Pick  Hey Janice... Yep, I had a BAV. 11 years after surgery, I'm doing great. Here's some more info about bicuspid aortic valves - https://www.heart-valve-surgery.com/bicuspid-aortic-valve-symptoms.php

Catie B  Janice, I'm sorry your replaced valve is leaking so soon. That's tough news. Wishing you the best as you meet with your cardio.

Janice Smith  Thank you. I just saw my cardiologist and am scheduled for a TEE after we return from a graduation for our grandson out of state. He said that this is not an emergency, but will get it done the day after we return. There is a definite problem, so the TEE will explain what that problem is.

Liz Burroughs  Yes, so true, we all have been through a lot! I'm so grateful to be alive & to have this community to help me through the difficult times. I hope 2016 will be a great year for all. Happy New Year!!

Virginia (Ginger) French  Janice, I had a history of a traumatic brain injury with some permanent damage that occurred decades before my valve replacement. I woke in the ICU and there were "stars" everywhere. They lasted for a few hours. I also had problems with dizziness that persisted after dismissal. And what I learned from recording my blood pressure and heart rate and weight at the same time each day was that my blood pressure was too low. My cardiologist told me it would only be for three months (Ugh!), but when I went to see my Family Physician, she took one look at the log I had taken in with me and instantly was concerned with the BP's. We discussed it and agreed to cut the dose in half and three days later the extreme vertigo with accompanying nausea were gone.

It is great to hear that more testing has been done. You are probably aware that the two most common adverse events after valve replacement are atrial fibrillation and stroke. The "usually one sided" may indicate that you had a small stroke in the course of the surgery and immediate post-op period.

Thankfully, the medical world is now so sophisticated that their tools to help diagnose and treat are excellent. I will be praying that the news is good. If what occurred was a small stroke-like event, the effects you are having are likely to be temporary and resolve in time.

No matter what the news, having patience and doing things that reduce your stress will probably help you and in addition lift your spirits up.
Blessings, Ginger

Janice Smith  Thank you Ginger for your response. These symptoms didn't start right away, but several weeks after the surgery. I don't feel bad, just gets so frustrating with these things happening. I sure hope my test results give me some answers. Thanks again.

Janice Smith  Yes. Have seen my regular eye doctor and a specialist. Saw family doctor and cardiologist last week. Had some tests done, and should hear from them tomorrow. Thank you.