Aortic Valve Replacement & Visual Disturbance

[Braveheart]

Dear Friends

I have posted a few messages here before about ‘visual disturbances’ (TIAs etc) following aortic valve replacement with mechanical prosthesis and I apologise if I appear to be going on again about the same thing. However, I’m really desperate to hear from anyone, who, like me is still getting them.

This morning whilst driving to work I had yet another episode! This is the first in a while. They are totally unpredictable. The symptoms this morning was a grey curtain covering my entire left eye, so that I was blinded in that eye. The whole thing cleared within 3 mins, but left me scared and tired. As I was close to my local hospital I decided to drive straight there. When I arrived at the ER they saw me pretty quickly as it was quite. However, I was less than impressed with the doctor who attended me. She had the biggest grin on her face when I explained my heart history and having congenital heart disease. I told her quite firmly that it was no laughing matter and that she should try walking in my shoes for a day. She did take bloods to check my INR and advised me to contact my Cardiologist, which I have now done. He is going to discuss me with my Neurologist.

I’ve had so many tests for this now and no one has clear-cut answers. I thought being put on Dypridmole Retard in addition to my Warfarin would prevent this occurring. Some doctors say the visual disturbance sound like migraine phenomena – this is a load of garbage in my opinion!!! I know what a migraine is and this is NOT a migraine attack.

I’m honestly sick and tired of this and the lack of answers. From what I recall quite a few people with mechanical heart valves have experienced these. I would have thought that with all the technology etc we have these days, answers and solutions could be found to this problem. I feel like everyone is clutching at straws over this and I’m sick of it. It’s also made worse by the fact that so many people are intolerant of this. After leaving hospital I continued to work and my colleagues are less than understanding. Because I look well, no one understands. I think they think I’m trying to shirk my work responsibilities, which I am not.

Can anyone out there relate or offer advice, help with this?? I’d love to hear from others who have or still do experience these. Perhaps if enough people talked about it, I/we could convince someone to do some research and find some answers. There has to be answers out there.

Thank you for listening to me and sorry for going on.

Yours - Jonathan
:(

[LUVMyBirman]

Hi Johnathan

Sorry to hear you are having a tough time of it. Have been in those shoes before. My doctors, like yours bushed it off as migraines. Had a CT scan that showed no evidence of previous TIA's. This made them feel good....but still scares the heck out of me. Could be micro emboli? Not sure.

If I recall, your tests have concluded TIA's?? If this is the case and you are not being addressed properly...please seek medical attention elsewhere.

Keep us posted.
Take care

[Nancy]

Hi Jonathan-

Well, I'll just have to answer this one! Husband Joe, if you recall has a 24 year old Bjork-Shiley aortic valve, a 2 year old St. Jude mitral valve, both mechanical, just had a repair on his mitral, also has a Guidant pacemaker.

Prior to the implantation of his mitral valve, he had many, many TIAs, about 15 or 16 if I recall correctly. Many of them involved his eyes, mostly in one of the eyes, but on occasion in both or the other. He has also had ones where he spoke "garbage", one when he panicked because he couldn't wind up the garden hose, he forgot how, one which produced a stabbing pain in his head and he was unable to continue reading a scripture in my daughters wedding ceremony and walked off the altar, some where he lost balance.

I am thankful to say that with the implantation of the pacemaker and the implantation of the mitral valve, these have all stopped. Thank God.

None of them left any lasting symptoms, and did clear within minutes to a couple of hours. But I do think that there is some thinking that they can affect little parts of the brain bit by bit, so are a good thing to get under control.

We also experienced not much action in the ER because by the time we arrived the symptoms went away and like you, we were urged to consult the cardiologist or Primary, who sent Joe to a neurologist. Nothing showed up in his neurological workups either. He was put on another anti-coagulant for a time which acts on a different part of the blood than Coumadin, this was in addition to Coumadin, but Joe is now off that and has been for a long while.

I can't say that your heart condition and Joe's are the same. He had rheumatic fever with aortic and mitral stenosis. I would pursue it as far as you can diagnosis wise. They are scary and I think dangerous. Joe was unable to drive for a while until they cleared up. He had no prior warnings for any of these. And for the most part felt fine afterward.

Hope this helps. You are not alone. Insist on as many tests as you can, there must be an answer for you.

Good luck, let me know how you make out.

If you want to email me, feel free at Boggs614@aol.com

[Sherry Houck]

Jonathon,
I too have had those "grey curtains" you speak of. I had several right after my surgery and about one every six months or so. It's completely unnerving because I think I'm having a stroke. Anyway, I've never really broached it with my doctor other than when I had the original mitral valve surgery in '97 and they chalked it up to mini strokes. Ironically though, today I was reading an article in a women's magazine and read about a woman with multiple sclerosis who experienced those kinds of visual disturbances, so of course, my mind is now shooting off in other directions wondering if I have m.s. Wish I could offer some advice, but I can't. Just wanted to let you know that I experience the same thing. Oh, by the way, I also have blurry vision quite frequently as well. Take care and let me know if you hear anything. Sherry

[Bob Gleason]

Jonathan........I sure can relate to your problems. I firmly believe that I regularly have TIAs as all the symptoms you describe (and more) happen to me.

I have run the gamut of testing from all sorts of bloodwork to doppler echos, MRIs, MRAs and on and on. It frustrates me, sometimes embarasses me and impacts my relationships at work, home or wherever.

I believe, like Gina suggested, micro emboli, is the cause, although one test revealed a narrowing in one of my carotid arteries.

My symptoms include lightheadedness, numbness in my face and lips, loss of balance, sometimes my thought-process gets all mixed-up, pain and numbness on my entire leftside and shoulders, visual disturbances.

I have fallen down several times as I lose my balance and my head feels so light.

I am once again going today to my cardio and next week I will see the cardio who attended to me at Columbia Pres, where I had my surgery.

Emotionally, I am distraught with fear that these "MIAs" or whatever will eventually lead to "THE BIG ONE"........It consumes me at times.

I know how you feel and hope you are able to resolve this......and I hope I can too as well. Life doesn't feel as good as it should, for me, right now, and I hope for better times ahead for us both......and all of us.

[Tammy]

Good Morning.
I have had these visual disturbances you mention since my early teens. Partial to total vision loss for usually only minutes at a time, but it feels a lot longer when it is happening. My diagnosis was also optical migraines (there is a technical term, I can't recall). I don't have any of the other symptoms some have spoken of but I did have one Doctor that mentioned tiny particles from the valve could be causing this. I am also on dypiridamole (sp). It is very scary when it happens and you definately need to seek answers until you feel satisfied. Mine occur about every six months, sometimes more, sometimes less. It is just another thing I figure I have to live with.
Keep me posted of any information you gather in your search for answers.
Take Care,
Tammy

[Gillian (in UK)]

Hi Jonathan,

A lot of us seem to have symptoms but no answers. Since my AVR I have been having occasional loss of vision (definitely not a migraine) which lasts only about a minute. I also feel I am going to pass out. It happened a few days ago and I took my BP which was very high at the time. I wondered if there was a connection.

When I mentioned it to my surgeon he put me on two aspirin instead of one. I need to mention it again to the cardiologist.

All the best to you.

[Nancy]

Hi Jonathan-

All of Joe's doctors were convinced that it was small emboli coming off the aortic valve, I believe he had his first episode a couple of weeks post-op from the aortic valve implantation 24 years ago. That's why the neurologist put him on additional anti-coagulation for a while. It helped to make the platelets a little more slipperly. It gave Joe some headaches though and he didn't like it.

The amazing thing is that when his mitral was replaced recently, they stopped. May it stay that way.

[Bob Gleason]

I'm not buying the visual migraines.........not one bit. But, like Gina, I feel it could be micro emboli.

I will be seeing another neurologist and will suggest he go the route of determining if my problems are caused by micro-emboli.

Just my two-cents worth............but Jonathan, your symptoms continue, like mine do and it is frustrating.

[Braveheart]

Hi Friends,

Thanks is far too small a word for the kindness and concern you all show on this forum. I feel a bit guilty as I am not a regular visitor to the room. Life just seems so busy with my job etc. However, I do want you all to know that I appreciate your replies very much.

I would especially like to thank Bob. You seem to be experiencing alot of things I am with this weird episodes and we have had similar surgery. I have had aortic valve and root replacement and my upper descending aorta (the section after the arch) replaced with Dacron/Gortex conduits. The actual arch itself is still my tissue. Like you I have had many, many investigations including scans of my Carotids. According to the MRI I had a small kink in one of them!! Then a Ultrasound scan showed it was OK ! I do not know what to believe anymore. All I can tell you is that all day at work today I was very quite and down and feeling more and more angry inside (like I was going to explode). I am sure people around me mean well, but they give the impression that I am making a fuss over nothing. One of my colleagues said "oh maybe you had some fluff in your eye!!! yeh right!!!" God I was mad I tell you!!! I shouldn't be I know.

Ahh well I was seriously wondering whether to ask my Cardiologist if he could do another TEE to rule out clot on my valve...after all I do have private medical insurance, it's not like I'm using tax payers money. Please understand...I have absolutely no desire to swallow a camera, however I am so desperate to find out what is going on. I just know IT IS NOT A MIGRAINE !! These are so different as Bob well knows from his epsiodes. The migraines I get are swirling, coloured patterns that spread over the eye and last about 30mins and then leave me with a nasty, nasty headache. These episodes, which are completely different, come on very rapidlly like a grey curtain dropping over my eye with no colour or patterns - just a mist, a fog a cannot see through. They usually leave me within 1-4mins, gradually they clear. Most times they affect my left eye. They do not leave me with a headache however. But they do leave me feeling frightened and spaced out for the rest of the day. I have some problems with memory when they occur. Last year, prior to commencing the Diprydimole Retard I had much severe symptoms with numbness of my tongue, lips, jaw and neck. I'm so scared of having a stroke!!

The thing that upsets me alot is that as soon as I use the words: scared, upset, frightened etc etc, the doctors are very quick to label me as being 'overly anxious, neurotic or suffering panic attacks'. When they start doing that I really do get upset, because it's like no one understands or is trying to. I'm getting tired of trying to explain what is going on with my body, but I know one day I shall suffer a stroke or something worse and then they will know IT WAS NOT A MIGRAINE PHENOMANA, that Jonathan was right !!

Also, Gillian I am sorry you too are experiecing difficulties. Please know that you and indeed all of you here are in my prayers. I pray that God is watching over us as he has in the past through of heart surgeries and other procedures.

Yours - Jonathan (UK)

[Mara]

After reading the sage words of Guru Bob. I think you are right. It's not a migraine. so disregard my ramblings about that.

TIA's are pretty scary. My Gram had them, and she had some permanent blindness. Not that I want to frighten you.

Get yourself into see a good consultant. David, my Scottish husband, always tells me it doesn't work that way on the NHS. Well, tough, you go in there and tell them what you want. After all it's your life. I can't believe tha ER doc laughed at you. In the US you'd have on heck of a good lawsuit!
If not, go private and get to the bottom of it.
There must be something to help.


Good Luck to you Jonathon. i'll be sending good thoughts your way. As I will to all the others who have suffered thru these things.
-Mara

[Nancy]

Hi Jonathan-

The name of the other drug the neurologist put Joe on is Plavix, it's an antiplatelet medication. It took me a little while to remember the name. I don't know all the ins and outs of the drug, or even if it would help. But there are some things that can be done, I'm sure.

Here's the Plavix Home on the web.

http://www.plavix.com/

http://www.plavix.com/pi.html

[Mb]

Bob:

This sounds a wee bit scary. My husband (you will recall having double valve/aorta graft on 10/4, has had two TIA's that showed up on an MRI. He also has a narrowing in one of his carotids, they do not seem to be worried about. The only reason it went as far as having an MRA to start with, is that he admitted to me about ten days later that he had had a visual problem for about three minutes. I wonder....could the problems both of you are expereincing be side affects of the aortic repairs?
As an additional comment, I have found over the past years, that discussing any problem, health or otherwise, with folks that have never been through the problem and know the complexities, often discount the situation. Even now, our friends, who are just GREAT are constantly saying how good he will feel after the surgery. Well, I certainly hope so, but I don't expect him to be a 25 year old again. AND, this is very serious surgery, complicated by having to have three repairs done all at the same time. People are always telling me of the elders in Florida, all with "zippers" in the front, having a grand old time. Well, I want to tell them all....those are the ones who made it. Ugh....sorry. I don't mean to be downbeat. So, the folks around you who are saying that maybe you had "cloudy"vision for a minute, or even something in your eye, obviously haven't had a serious health problem in the past. Trust yourself....you know your body the best. And, trust your intuition.....if something just doesn't seem right to you, it probably isn't. Thats it for me! Marybeth

[Nancy]

Hi Marybeth-

After living with Joe all these years, I have concluded that there are no clearcut issues with heart/valve problems. His cardiologist once said that the human body is so finely tuned, that when we enter it to do a repair, we are extremely clumsy by comparison. I really believe what he said. But this would be true for even the most skilled surgeon. What other choice is there?

We (Joe and I) keep his medical problems within a very narrow margin of safety. If he deviates from this margin even slightly, it's on the phone ASAP. I think that has saved him from several disasters. Admittedly, he has some difficult issues, but we've been very lucky to have such concerned doctors. I guess we're quite selective also, plus it doesn't hurt that I'm a big B and Joe doesn't mind complaining when it's warranted.

Hopefully what we have all discussed in this thread hasn't scared everyone too much, but these things do happen and have to be dealt with.

To everyone who has had episodes like described, please do not let anyone fluff you off or tell you that's it's something less serious than you think it is. Hearts can be fixed, strokes, well that's another matter.

Please, please be your own best advocate. Maybe research needs to be done on these problems, or maybe they should be covered better in medical school.

[arlice]

When I was taking coumadin for afib, I developed purple toes syndrome which is characterized by dark red or purple spots on the toes. But it does also affect other organs and tissues of the body. The cause is microembolii of cholesterol caused by taking coumadin. It seems to affect mainly the capillaries. Could these small embolii of cholesterol be the cause of these visual disturbances? I haven't heard of it doing this but it does make one wonder.

Also here is a bit of a warning about Plavix. Here is a copy of a news article about a condition that develops in some people shortly after starting Plavix: "Today’s article describes 11 patients who, shortly after starting Plavix, developed thrombotic thrombocytopenic purpura, or TTP, a disease in which blood platelets are
destroyed. Ten to 20 percent of people who get TTP die from it, even when they are treated promptly."
You can read the entire article at: http://abcnews.go.com/sections/living/DailyNews/heartdrug000420.html

I hope that those of you who are having the visual disturbances find out something soon. The favorite expression of some of the doctors (and nurses) I have been to is, "I've never heard of that being the cause of. . ." followed by whatever else finishes the sentence. And yet, those of us who have that condition we are talking about often say "yes that happened to me too."

Keep digging and hopefully you'll find out something. Doctors never want to admit that a medication they prescribed or a procedure they did could be the culprit.

Arlice

[srwieland]

The episodic visual problems I've had all my life sound similar to some of the descriptions here, but they have never been severe or enduring enough for me to seek help with them. TIA (or transient ischemic attack) sounds like a plausible explanation, though.

Mine have not been affected either way by surgery, however. But, now my curiosity is piqued and so I will stay tuned to this discussion and, even though I don't think I have much to contribute, I may have more to gain from it than I realized before this.

Thanks.

[Nancy]

I did a rather extensive search on TIAs.

Here's a good link:

http://www.emedicine.com/EMERG/topic604.htm

Also in all the reading I found out that the eye thing has a name

Amaurosis Fugax

described as blindness in one eye like a shade coming down, caused by emboli. Google had a lot of info. on the subject, if you search for valve within the results it narrows the field slightly.

[Bob Gleason]

Thanks so much for that article..........

[hensylee]

Jonathan and Bob:

Jonathan, are you on or were you on amiodarone, by chance. My brother was for 1 1/2 yrs w/o proper follow-up and lab work. One of the by-prod of the long consumption for him is that his vision is failing (don't think the amiodarone is all out of his system yet). He can no longer read the telephone book info.

Bob, have you been checked for dysautonomia? Please go into www.ndrf.org and check this one out. It has been around many moons and was called other things, i.e. Soldier's Heart, neurasthenia. My brother has it and some of the symptoms you mention are his, as well. Passing out, dizziness, drunken feeling, but he doesn't drink, extreme weakness, memory problems - no numbness, tho. It makes for interesting reading if nothing else, and adds to our education. God bless

[LUVMyBirman]

Bob and Jonathan.....

Let me put another spin on this for you. When you mentioned kinks or concerns with your carotids......when they did my head CT and ultrasoud of my caroids.... they found some scar tissue or maybe a small cyst inside the carotid. Not digging any further until my husbands health concerns are under control.

Think back to your initial surgery. That artery is where they placed one of your IV's after surgery. Maybe this caused damage to the carotid? Some sort of blockage?

Just a thought. Still tying to figure out what is going on.

[Gisele]

I am stunned by the number of patients with visual disturbances. My first episode of double vision was in the hosp. while recovering from my mitral valve replacement. I told the nurse who casually mentioned "if it happens again-let me know"! That was it! I have had over the past nineteen years several episodes of double vision which also are unpredictable. In fact I just had one this morning at the gym! I was able to wait it out (usually just a few minutes), and then I am back to normal. I have seen a neurologist many times due to my migraines. This differs from my aura which precedes my migraines. The neurologist told my cardiologist that this was a form of migraine. I don't buy that at all, but I don't have a clue what could be causing this. I guess some mysteries will never be solved.
Gisele

[Marty]

Gisele, I had a mitral valve replacement three years ago,
St. Jude mechanical. I also had double vision that was sporadic and transient. It scared me at first as I thought something worse was coming. The episodes have gradually become less frequent and now three years postop I havn't had an episode in weeks.
I found that my cardiologist and my opthamologist had no clue. I finally was referred to a neuro-opthamologist . He said the episodes were most likely from small emboli(clots) coming off the valve. He said he would do CT, MRI, etc. if I wished, but they wouldn't show anything. I decided not to test and am OK at least for now.

[ticktock]

Wow, all the frustration on this thread is tangible. The more I read, the more I could relate. Some of this stuff, I have never even mentioned to the Docs. Im funny about that. I have had 2 what I call "gray outs", where it appears like Im seeing through fog or maybe smoke. They didnt last long, but it scared the bee jeebers outta me.

I too have read about MS and its causing these types of visual disturbances. That frightened me also, as my Neuro has suggested that I have some symptoms of it. I cannot have an MRI they tell me because of all the metal in my heart. I know I have had TIA's, the symptoms were to the T. Didnt last long.

I finally got sick and tired of being told I was "anxious" or "depressed". Darn straight I am, BOTH on some days. And I dare say anyone with my anatomy would be. Unless they were NUTS. I guess thats when I quit telling the Docs. I know what Im having most of the time. It wont change anything, and Im on all the meds I can be. Coumadin, Dipyridamole and aspirin. I keep my INR within range (most of the time). I figure this is just part of the program. Chin up, I say to myself. And go on.

[Gisele]

Ticktock, I couldn't help but notice you said you can't have an MRI. I assume that is because of your valve. I too have a Bjork Shiley (MVR) and had always been told I could never have an MRI. Guess what? I had one two years ago. I needed one due to a subdural hematoma (guess I had too many rumrunners on vacation in FL which brought my INR up a bit). The docs researched it, and it was possible after all. Just thought this might interest you. Gisele

[Nancy]

The surgeon wanted to do an MRI on Joe before his last operation, the only reason they couldn't was because he has a pacemaker.

He has a Bjork-Shiley and a St. Jude both mechanical.

[LUVMyBirman]

When I received my patient card from Medtronic the manufacturer of my prosthetic valve....it states that it is MRI compatible. Could be that some of the older models are not?

Gisele...... Sorry to hear about what happened to you after 'too many'. This is the second story I have heard on the forum. Any words of wisdom? First being anything in moderation:p.
What were your symotoms and how high was the INR?

When I returned from Hawaii my INR was 6.5. Not embarassed to say that I averaged 2-3 drinks per day. Heck I was on vacation! Honestly do not think it was the alcohol because I have never had a problem with it. The fruit juices they put in some of these tropical concoctions have been known to raise an INR. Grapefruit and Pineapple to be specific. That was the culprit for me I believe!

[Gisele]

Gina,

Regarding my INR with my subdural. By the time my subdural was diagnosed my INR was in the 7.something range. I don't remember the specific number. I came home from vacation with a headache thinking it was another migraine. (My migraines last for anywhere from 2 to 5 weeks). Then I thought it was a sinus infection because I couldn't even tilt my head forward, pressure over my eyes, and the pain would wake me up in the middle of the night. I was miserable, but I still showed up for work every day. I was working for a group of 8 cardiologists-one of them is mine, and I was doing clinical care which meant I was on my feet running around all day. When I complained to my doc regarding symtoms telling him I thought it was sinus infection he gave me Rx for anitbiotic and decongestant and told me if that didn't start to work in 3 days to let him know. When it didn't work I was sent for a CAT scan where my diagnosis was made and I was admitted. Now, everytime I have a headache that lasts, I end up going for a CAT scan. As far as the MRI is concerned, my valve is an old model. In fact Bjork Shiley is no longer in business. They had a recall on their valves and went out of business. My model fortunately was not recalled. It's still ticking after 19 years which is good because I will never go through that surgery again. At least I hope I never have to face that decision. Every patient is different but the more information we all have the better we can understand what is going on. Hope this helps.