coumadin

[BECKY]

Hi Dave,

I am a new member but I can tell you I have had alot of problems with coumadin. Weeks after my aortic & mitral valve replacement I was experiencing numbness on my left side. I was so uninformed I didn't know at the time it was stroke related. I was 34 years old at the time. I mentioned it to my cardiologist when I was in for a follow up visit and he never even responded when I told him about the numbness. I thought it wasn't anything to worry about based on his lack of response. Luckily nothing bad happened to me. Years later even on coumadin I experienced blindness in my left eye...numbness on left side and pain in chest. There were blood cots on my valves a TEE showed and at that point they can only increase your dose and wait for them to dissolve. You are at a great risk of a stroke. I have had many symptoms when my INR is low. They now keep me between 3.5 and 4 to eliminate the problems.

I guess everyone is different but that was my experience and I strongly believe it is nothing to fool with as a result.

I hope they get your INR up fast.

BECKY

 

[Christina]

Hi Becky,

I know first hand that Coumadin can be a problem when it is too low. My AVR surgery needed to be redone eleven days after my first AVR because a blood clot had lodged itself underneath the new valve.
I had a terrible time getting stabilized, but I finally did after 10 months.
I also bought a Protime machine after 6 months to do my own INR testing and test often to be safe. After that, I had to fire my doctor who had no clue how to regulate Coumadin. I was a nervous wreck every week because of him.
I feel fine now! Found another doctor last year who knows his stuff but I still do my own testing and haven't gone to a lab in a year. I am the only patient who does her own testing. Isn't this kewl! I call the results in to the doctor, but I know the results and don't have to wait until they finally take the time to call me back. (That was at times 2-3 days after the lab test when I had the other doctor)
This doctor is okay with me having a higher INR and I feel safe between 3.5 and 4.5. Easier to deal with a bleed than a clot or stroke.
Look into getting your own Protime machine. It is wonderful and such peace of mind. I never go on vacation without my Protime!
There is a Protime link on this site. QAS will help you to get this paid for by your insurance.
More people will come along after me and tell you their experiences about the Protime machine.

In the mean time, please stay safe!


Christina
AVR's 8/7/00 & 8/18/00
TMC, Tucson. AZ.
Dr. Gulshan Sethi

 

[ALCapshaw]

A few weeks after my AVR, I experienced a number of unusual visual effects including a round gray cloud that seemed to move from upper right quadrant of my left down towards the center. I also experienced something similar to 'floaters', like a fluorescent hair moving across my field of vision, and difficulty making my two eyes converge. At the time, I attributed this to a side effect from Levaquin, an antibiotic I was taking for 7 days for a potential lung infection.

I recently experienced another episode of loss of convergence that lasted a few minutes. The only medications I am currently taking on a daily basis are Coumadin, Toprol, Glucophage, and Zocor. My INR levels have fluctuated between 2.6 and 3.8 in the previous few weeks.

'AL'

 

[Ross]

I'll add my 2.

I have the convergence problem about twice a month and currently, I'm not on the coumadin. It may be the BP meds, but I don't think it's that either.

Looks like another identifier for us.

 

[Lisa in Katy]

I get the eye convergence problem too, although I didn't know what to call it until just now! My eyes seem to cross and get real watery. I'm on Coumadin. I was on Atenolol, but now I'm on Accupril, and I still get it occasionally, so guess it's not Atenolol. It doesn't last long, and if I close one eye, I can see okay. It seems to happen when I'm tired, and most often when I'm driving - GREAT COMBO! I have a feeling right before it happens that it's about to happen, kind of a lightheadedness - kind of like the aura that seizure patients have I guess.

Anyway, no solutions here, but at least you're not alone.

 

[LUVMyBirman]

Hi all and Greg,

Almost immediately after surgery I started with the floaters. Have lost vision, 'gray curtain' 2-3 times in one eye. These episodes were spaced out months apart.

Then.....the little squiggly lines appeared. Still get them to this day. My neurologist is calling them optical migraines. At times these are accompanied by severe migraines. Numbness in my left cheak. Squeezing pressure in my upper arm. Even had my scalp go numb. Needles to say I was convinced I was having strokes so we did the CT. Negative.


I do feel this is related to valve surgery. It has not been medically documented as of yet. So, unfortunately we have to live with it.

Like you Greg, my INR is usually well within range during these 'episodes. They put me on a beta blocker specifically to help with the symptoms and classified them as migraines. Helps 60% of the time. Better than not. I know it's scary. It took me a long time to get over my ordeal. it's just something to deal with. Worth it to live and have the opportunity to watch my child grow.

Take care

 

[LUVMyBirman]

Hi Greg,

I am sorry you are having similar symptoms. If it's any consultation, you are not alone. I would recommend a complete neurological work up along with an echo. My bet is they will not find a thing. Airing on the side of caution, at least you can say you did what you could.

It's a matter of getting MD's to recognize the repercussions of valve surgery for some. Until it is documented, we are usually looked at like we have grown a third eye of sorts. Been there. I understand there are others here that have similar symptoms. Maybe, somehow through our group we could get the attention of a large facility, CCF preferably and become part of a study.

See if you can make it to the meeting in Vegas. It helps to talk to people who truly understand what you are going through. This is a great family to be a part of! Hope to meet you in the fall.

 

[michellep]

bringing back an old thread...

bringing back an old thread...

I was doing a search based on some of the symptoms I have been experiencing since my surgery and came across this thread from 2002. I was wondering how many of our current members are experiencing them.
Since my surgery, I have had 3 episodes where a grey curtain goes over one eye. I also have times where my eyes feel crossed, blur and water but it only lasts a few seconds. I have short periods (less that 10 min) where I have heart pains and have had short periods of numbness in an arm.
I have had a MRA of the neck, echo and TEE but nothing shows up on film. I've been sent the the opthemologist but he says its vascular. I only take aspirin daily.
Anyone else?

 

[Susan BAV]

I had the crossed-eye sensation begin about 10 years before my valve replacement and it became more and more frequent before my valve replacement but I've only had it happen once since AVR--and it was on a day when I was exhausted and overheated and extremely fatigued and ill in a foreign country.

Recently I've had a bit of brief facial numbness but I think it's a combination of a bit too much caffeine and not enough water (hydration).

I hope this experience might be helpful to you and I hope you figure out what's going on. It's nice to see you posting again. Take care.

 

[LUVMyBirman]

My effects have lessened as the years have past. No stroke, no tia. Migraines. I belelive there may be a link in folks with small vessels. Which is my case.

 

[Racefan]

Hi,

I'm 5 months post-op. Just had a 4-5 minute total right eye blindness episode a few weeks ago. Seems my INR was floating around 2.0. Pretty scary for sure. Eye doc says my eyes are healthy, probably a clot Whatever happened to the 1-2% chance a year of something happening. Suppose it don't count unless you die. A little thing like sight isn't factored in I guess. Tell you what, life without sight would make the ticking unbearable for this racefan. BTW, I've had convergence/floaters a few times a year for the last 20 years. Those I can handle, lights out is another story all together.

Mike

 

[Missy]

I have had the cross eyed sensation, floaters and kind of a curtain. I don't know that it is gray though. Seems to be bright but that could be because I am in NM and the sun is so bright. I started this in high school and it continued until my valve replacement. Now it is back sometimes. I just don't know unless something is going on with the valve or coumadin. I never associated it with meds as I had it when young. However the gree halo effect I did asssociate with meds. Lanoxin. I sometimes also can shut my eyes and see lots of different colors. Lots of colors but mostly violet color. Anyone ever have that. I never thought to ask the dr. or opthamalogist but think I will. I had read where the med makes one see colors or green so just didn't let it bother me..

 

[Resqrn]

The cross eyed sensation were your eyes see one way and the brain and body feel like they are going in other directions YEP. Loss of vision YEP. All have the precuser feeling. INR in theraputic range. Opthamologist says pressure problem "probably". Comes down to it "occular migranes", I have talked with many valve patients that have had the same feelings and symptoms.

 

[halleyg]

Wow, I have had similar problems to you all. I have had migraines (where I see bright spots, interferes w/vision) since my first OHS and still get them. Also recently had one incident after exercise where I had the "curtain" over my left eye that thankfully lasted only a couple of minutes. Also have had the numbness on my scalp but haven't lately. Is this from the coumadin or from the OHS itself? Or we don't know? I also get itchy on the bottom of my feet and the palms of my hands.. although I just assumed this was from the surgery somehow.

 

[michellep]

I only take aspirin...
I also get head aches at the back of my head now, never did before surgery and the occular migraines. Very interesting!

 

[HarleyM]

Very interesting reading this thread. I had the floaters but they seem to be gone. About once a month I get tunnel vision, numbness in my hands and feet(sometimes my face) and get very dizzy. This last 3 to 5 minutes and then goes away. After a spell I always get fatigued. Also seems like it happens to the left side of my body and not so much to the right. I always thought it was low INR but it has been very steady and still having spells. I 'm wondering if those of us on Coumadin need to drink more liquids to keep our body hydrated?

 

[Bina]

Very interesting reading this thread. I had the floaters but they seem to be gone. About once a month I get tunnel vision, numbness in my hands and feet(sometimes my face) and get very dizzy. This last 3 to 5 minutes and then goes away. After a spell I always get fatigued. Also seems like it happens to the left side of my body and not so much to the right. I always thought it was low INR but it has been very steady and still having spells. I 'm wondering if those of us on Coumadin need to drink more liquids to keep our body hydrated?

Your numbness and dizzy spells sound frightening....what does your doctor say?

 

[ALCapshaw2]

Very interesting reading this thread. I had the floaters but they seem to be gone. About once a month I get tunnel vision, numbness in my hands and feet(sometimes my face) and get very dizzy. This last 3 to 5 minutes and then goes away. After a spell I always get fatigued. Also seems like it happens to the left side of my body and not so much to the right. I always thought it was low INR but it has been very steady and still having spells. I 'm wondering if those of us on Coumadin need to drink more liquids to keep our body hydrated?

Those sound like signs of a (small) stroke, especially the "one side" aspect, that is probably breaking up. It would be wise to go get checked out the next time this happens, either at your Doc's office or an ER.

Whenever I get 'visual disturbances I chew an aspirin and it goes away in 20 minutes or less. (Check with your Doc before following this example).

'AL Capshaw'

 

[Granbonny]

I had several of the curtain.things..but all within a few weeks after my surgery..(6 years ago)..also had the double vision once..for a few seconds..thankfully I was NOT back to driving..(curtain drawn down thingy..same thing..went away in a few seconds).Why I think it is very important NOT to drive for at least 6 weeks. post-surgery..Not only to let your sterum heal. but eyes, too.........However, I have had problems with my eyes watering...Hubby stripped all our our carpet out..do have an old cat..but strange how some days they are fine..Other days..just water.. .makes no difference in the seasons?Bonnie

 

[Elcarim]

I suffer very badly if I get dehydrated, I have greyed out while driving on one occasion, which scared me very badly. I get dizzy and weak, the curtains come down if I stand up too quickly. I have to be careful not to get dehydrated. These are the same symptoms I had before I had any surgeries, I just seem to be more prone these days.
I also get an odd visual disturbance, like a zigzaggy line in a circle where it is blurry. The circle starts in the middle, gets bigger and eventually goes away. I got these before my surgeries as well, and only get them very occasionally now.