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

 

[Nancy]

Hi Jonathan-

You posted twice to this, so I answered the other post under Coumadin.

 

[maxximom]

Hi Jonathan
I don't know if this is any help to you or not.
Anumber of years ago I had what appered to me as golden quetionmarked glittery flashes in my eye and went to my Opthomoligist..after describing what had happened he told me that he thought they were "visual Migrane" attacks. I had neber heard of such a thing and had never had Migrane headaches. He told me that that some people have such tings before migrane attacks but that they have nothing to do with the headaches. As a precaution I did have a Carotid Echo study done to rule out any blockages or TIA's. All was negative. I have had this happen again 3 or 4 times in the past 6 years. They only last for seconds and I haaven't had one happen for almost 2 years. (the last one was 25 minutes after a Flu shot..the doctor said that there was no relationship..but I wonder about that)
I have not had my AVR yet so I can't telyou about your problem..but I did want to let you know that there is such a thing as a visual migrane. Hopw that this somehow helps
Joan

 

[Mara]

H Jonathon

H Jonathon

I am with Maxximom-
This sounds like the precursor to a migraine. I have had them for years. They come on instantly with no warning and start with a visual disturbance, blindness in one eye. Sometimes accompanied by smelling a strange smell or ringing in the ears.
Have you asked the docs about that. Men who get migraines get them in ways different from women..often men get cluster headaches, or different after effects besides debilitating pain.
Unfortunaltely, I have found no cure for them, and have decided that in this area neurology is quackery, they are as lost as anyone. Try taking a magnesium supplement. I have had some relief from this. A lot of people swear by feverfew, but stay away since you are on coumadin.

I am sure you are frustrated by the docs on the NHS. As for that I can offer no advice, except go private! Or come over to the US on your next holiday, and spend it in the hospital having a work up, but pick some place nice like Miami beach. ( my husbad is from Scotland and his aunt has heart troubles and can get no relief from the NHS. Ahhh socialized medicine)

 

[Braveheart]

-Thank You-

-Thank You-

Thank you all for your replies. I can't tell you how much appreciate them. It helps to know I'm not alone.

In reply to Mara, I am fortunate in that all my heart surgeries, investigations etc etc have been done privately. I have the top Cardiac Surgeon and Cardiologist in the UK. I am under a top private hospital in the Harley Street area of London. At the end of the day even if you have lots of money and can pay for the best medical care - they still do not always have the answers.

Your comments on migraine and interesting and I shall discuss this with my Neurologist. However, I'm sure they are not migraine. I've suffered migraine since my teens and know the difference. These episodes have only ever occured since my aortic valve replacement and aortic aneurysm repair. I shall try to keep an open mind anyhow.

Again, thank you and everyone for your support. You're a great group, you really are!

Jonathan

 

[maxximom]

Jonathan
Its interesting to note that you have had Migranes is the past. I on the other hand have NEVER had a Migrane (thank God) in my life.I understand that these visual Migranes are NOT the sameand may or may not be related to the real migrane. It is also interesting that you never had this before your surgery. Perhaps your body is in some way adjusting to its new blood flow..just a thought. I would keep persisting infinding out what is happening..I always feel that each person knows there own bodies the best..and if they feel something is night right..to keep on checking!!
Good Luck
Joan

 

[Andrew Harriss]

Visual Disturbances

Visual Disturbances

Hi Jonathon
About 10 days after AVR surgery..St Jude Mechanical.. I had a similar incident as you described. My left eye telescoped down to almost no sight. Very scary. My Cardiologist did a TEE to check everything out. Nothing looked wrong. This has not recurred again in the 3 1/2 years since my surgery thank goodness. I have always been on Warfarin, Dipyridamole, and aspirin. By the way there is a relatively new form of Dipyridamole that is time-released, eliminating having to remember to take the stuff 3 times a day! Name is Aggrenox. Been out about a year. My Cardio didn't know about it but my GP did.

Good luck,

Andy Harriss