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Thread: Post pump syndrome (neurological and vision problems)

  1. #1
    JenniferO Guest

    Default Post pump syndrome (neurological and vision problems)

    I am feeling very tired and discouraged because I am having so much difficulty with neurological symptoms including migraine visual auras, visual "ghosting", dizziness, and sort of a general mental confusion. The migraine stuff doesn't proceed to the painful headache stage, thank goodness, but includes the prism like lights, blank visual splotches, spinning pinwheel lights, etc. Pretty much the same symptoms I normally get with a migraine, but the difference is I used to only get them once every 2-3 months and I could get rid of them by just lying down and closing my eyes for awhile.

    I can't read because I can't see print, and my mind can't seem to sort out images and focus or concentrate. The horizontal lines of text don't follow a straight line but sort of meander around the page and it feels like the print kind of overlaps itself. Even magazine photos look distorted like some sort of impressionistic painting. It's difficult to read the computer screen. It's almost like what I would imagine being dyslexic would feel like - sort of like everything is upside down and backwards. I was assuming these kinds of things could be part of "post-pump syndrome" but yesterday they got bad enough that I got scared and called my cardiologist's office.

    Unfortunately my cardiologist is fishing somewhere in the Bahamas. They told me to go to the Emergency Room. Well, the Emergency Room turned it into this big "maybe she had a stroke in surgery" routine complete with MRI. Then they decided after they ran all the tests, that they were finding nothing and couldn't do anything else for me. My blood work showed I was still slightly anemic, but better than on Febrruary 11, which was the last blood profile they took in Cleveland. So they discharged me with a prescription for antivert and told me to go see an ENT (for innner ear problems) if I continued to feel dizzy. I then went over to the cardiology clinic and talked some more to my cardiologist's physicians' assistant. He then sent me to Eye Center to have my eyes checked out. Everything as far as my physical eye structures looked fine with no evidence of emboli, though I still couldn't read the eye chart and flunked some other visual tests. All in all, we were at the hospital from morning until 5:30 at night. I missed my pain medication and was feeling pretty drained and painful by the time we got home. This morning I went back to the hospital for an echocardiogram. They still feel uncomfortable giving me a prescription for some migraine medication, which was what I was hoping for from the beginning.

    In Cleveland, they had given me a prescription for a beta blocker called Coreg which I have been taking at 6.25 mg twice a day. The cardiology department here in Salt Lake is not sure why I would need the beta blocker since to my knowledge I never had any incidents of atrial fibrillation nor did I have a particularly enlarged ventricle. So, we are also weaning me off the Coreg to see if it may be the culprit for some of the side effects
    I'm experiencing. Dizziness, migraines, vision problems, depression, mental confusion are listed among the side effects of Coreg.

    This is all so discouraging because I don't have much I can do but sit in a kind of daze and try not to worry about if and when this might go away.

    The way it ended was that we are to wait another week or so and if things don't improve, they will send me to a neurologist for further evaluation.

    I do have a friend in New York who had mitral valve repair a little over a year ago. She reported she had similar symptoms, plus the double vision that Marty mentioned elsewhere, for about three months. She was treated with some migraine medications which helped.

    The doctors are frustrating in that they seem to resist the idea that these symptoms could be from the bypass pump, although I guess it's also good that they simply don't dismiss the symptoms automatically as post pump syndrome either.
    Last edited by JenniferO; February 21st, 2002 at 01:57 PM.

  2. #2
    Join Date
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    upstate New York
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    Default

    Hi Jennifer-

    So sorry you're having these problems, it must be beyond frustration. If I might ask, what meds are you on right now, perhaps you mentioned but I must have missed them. Some of the anesthesia hangs around in your system for a surprisingly long time, just enough to give symptoms here and there. That stuff they use is pretty potent. I bet when you are able to get off pain meds and with the passage of a little more time, things will improve. The pump doesn't help much either. Most of the pump stuff goes away within a few months

    A lot of people have concentration problems after this type of surgery, and I remember very vividly, Joe being not really "with it" and unable to read or do paper work, very forgetful, after all of his surgeries, heart and lung. It lasted for a while. He's a different man now, so I can tell you that time is your friend.

    It a good thing to have the various workups and I'm so glad they're pursuing the symptoms because sometimes there are little emboli which make themselves known and then disappear, never to be found on an MRI.

    Your body's been through the most profound assault and is probably hurting in many ways, but healing is taking place on a daily basis.

    I hope your problems resolve themselves rapidly. Best wishes.

    P.S. By the way, you'd never know from your posts that you're having any problems, They were all well composed and made perfect sense.

  3. #3
    JenniferO Guest

    Default

    Other than the Coreg, the only other meds they gave me are Tylenol for pain, Aspirin (81 mg/day), Nexium for stomach acid, and Vioxx for inflammation of the heart (but last tab is tomorrow), and prenatal vitamins because my blood count was low.


    As for the coherency of my posts, you just don't know how many times I had to go back and edit each one!
    Last edited by JenniferO; February 21st, 2002 at 04:25 PM.

  4. #4
    Frank Guest

    Default

    Hi Jenn:
    Today I'm exactly three weeks post op and for the first two weeks I experienced many of the same symptoms you described. I still have some soreness, weakness and an occasional headache but the main symptoms I'm experiencing now are related to taste and a faster than normal resting heart beat. I seem to have a constant bad taste in my mouth and most food doesn't taste very well ( did anyone else experience that?). I'm hopefull that these symptoms will also soon past. I believe that as time goes by and with the grace of our Lord we both will continue to improve.
    Good Luck and may God Bless and heal you quickly.
    Frank

  5. #5
    Join Date
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    upstate New York
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    Default

    Hi Jennifer-

    Let us know when they're going to send you to the neurologist. Joe's had a couple of workups with the neurologist. They were all inconclusive. This was several years ago. He had many TIAs, 15-16 or so. But it doesn't sound like what you're experiencing.

    After they implanted his mitral valve, they disappeared.

  6. #6
    JenniferO Guest

    Default

    Frank:

    I know many people have mentioned either having no appetite or having strange tastes. A lot of people simply say that food tastes "off."

    If you scroll up and hit the "search" button up at the very top of the page and put in the keyword "taste" the search function will show a list that includes two threads called "Return of Appetite" and "Weight Loss After Surgery" started back in July by "Seabush" that you can look through.
    Last edited by JenniferO; February 21st, 2002 at 05:49 PM.

  7. #7
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    Though I never experienced your exact symptoms, I still think it's going to go away in time. Your body has been through a major battle and is still on the edge of "Fight or Flight". The anesthetics do hang on to you for quite a long time, as well as your chemical balance being thrown way off. It's irritating, but I think you'll start to see an improvement soon.

    I remember an incident that occured after surgery. I wanted to dial a phone number and no matter how hard I tried, I could not get my fingers to press the correct # buttons for the life of me. That scared me but good.

    You do go through some very weird things for a month or two after. You know I'm still plugging for you anyway.

  8. #8
    Perrster Guest

    Default Hang in there!

    Hey Jenn,

    Hang in there and just give yourself more time. If it helps any at all I will tell you that I went to the emergency room twice within a 3-month post-op window. Strange sensations, etc. really got to me. Each visit turned up no major problems.

    At least you have us to discuss this with. I didn't even know about this site for another 3 or 4 months.

    Unfortunately (or perhaps it is fortunate) I don't remember many details. I started to more clearly think things through once I started re-hab (6 or 7 months post-op). I have no idea how I managed to go back to work in two weeks, but I'm glad I did. Maybe my work took my mind off my problems?
    I point blank asked the top cardiac re-hab nurse how long I could expect to have a full recovery. She said give it 6 months! She was a former cardiac ORN.

    So, hang in there, Jenn.

  9. #9
    Frank Guest

    Default

    Jennifer,
    Thanks for the advice. I reviewed the posts related to "taste" and it seems that what I'm experiencing is rather normal at this stage. I do hope you are feeling better. I know that I'm just now beginning to recognize a noticable improvement and my first two to two and a half weeks were much worse.
    You remain in my prayers,
    Frank

  10. #10
    Jessica_B. Guest

    Default

    Jennifer,

    How difficult it must be!!

    I have had neurological problems due to medication. I worried alot over it until a doctor said to me that if I was sane enough to worry about how insane the reactions were probably meant I was absolutely sane LOL.

    Seriously, it's normal I would say. Your body has been thoroughly beaten and kicked around and now it's reacting to it. I am sure a full day out visiting with doctors tired you out also. When I am out doctoring for a day I find myself incredibly weepy when I came home.

    My doctor has acknowledged that such a thing as "pumpheadedness" exists. Other doctors have said that even though they believe that heart and lung machines does have an effect on memory function, they do not believe it to have a) a permanent effect or b) be more than an occassional nuisance.

    Give it time. Try to be patient and let it take the time it takes (I'm a very impatient person myself so others have to tell me to pace myself!)! You did right by going to the ER and if you feel uncertain again you should go back. If not for anything else to at least put your mind to rest.

    Hugs,

    /Jessica

  11. #11
    cookie Guest

    Default

    Hi JenniferO,
    Gee whiz! Give yourself some time. I remember when I was being discharged from the hospital, I had to sign some papers and I knew where to sign, I just couldn't get my hand to do it! Talk about spooky! I prayed that wouldn't last. Food just had no taste or appeal. I thought I could pass the time at home by reading, but I couldn't keep my mind on anything longer than a sentence. I had black thingys in my vision like one whole side in one eye would just go. I used to have migraines about 5 yrs ago and knew what the auras were. They have returned but the migraine does not follow. It took a couple of months for things to go back to normal except for the auras. I still have those for some reason.
    You must be patient and one day you will notice that everything just went away. You don't really notice. It's been 2 years in June for me and eveything is great. Hang in there!

  12. #12
    Join Date
    Jul 2001
    Location
    Dublin Ohio
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    160

    Default eye problems

    Hi Jennifer
    I had AVR and triple bypass almost 5 months ago and the only problem I have had afterwards has been visual problems. Immeadiatly after surgery I saw things in a magenta red color..from halfway up the wall to the ceiling..and I also saw designs that I can only describ as Miami Beach 1940 Modern..Life was very interesting visually. The doctors said it was probably the pain killers (I knew differently) The day after I came home I went to my eye doctor (she had just checked my eyes 2 weeks before surgery) She determinmed that I had some retinal bleeding that was probably caused when I was removed from the pump and there was a rush of pressure..sort of like when there is a power surge after a blackout. It went awat after about a week (the magenta color) but I still get some transparant type images..like looking through a leaded glass window in the upper visual field (these are not floaters) and they seem to only be noticable to me if I go to the movies or watch TVB with the lights out.I also get some viisual migrane (I have NRVER had a migrane headache in my life) which the eye doctor feels may be circcculation related and she will speak to my cardio about increasing my BP med (attenenol) to see if a higher dose might help. Since these only happen about every 2 weeks or so and only last for 10-15 minutes..and don't really bother me..I just as soon leave my meds alone at this time. My vision right after surgery when she tected me was down from the eye chart 2 weeks before surgery and had now returned to what it was before the surgery..altthough it dosn't seem to be as sharp to me. I have a eye docctor appointmnt at the end of March to follow up. I'm glad that my eye doctor has taken my problem seriously and feels that it is related to the surgery and that I am NOT some sort of a nut case :-)
    All kinds of weird things can happen after such major shock to our bodies..I just wish the doctors in general would take us more seriously and give some straight answers to our strange symtoms.
    Good luck..I hope that things improve for you..I'm sure they will as more time elapses
    Joan
    Joan S.

  13. #13
    Bill Hall Guest

    Default

    Jennifer - I have had problems with dizziness since surgery and it happened again this week. I have also had the blank spots in my eyes but it is rare. I still see stars once in a while. Anyway, I still haven't looked for a new cardiologist, but am hoping to get some answers when that happens. In my case, it happens infrequently, so I just ignore it for now. My eyesight is still 20-20, but it is more difficult to focus than it used to be. Please keep us informed about your situation.

  14. #14
    Join Date
    Jun 2001
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    McLean, VA
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    1,597

    Default Hi Jennifer,

    Jennifer, I'm betting all these symptoms will eventually clear up. So hang in there and try not to get depressed. If you have regular heart rythym
    and normal blood pressure I hope your cardiologist will take you off the Coreg and all pain killers soon. These could be the culprit.When I staggered in for my post op checkup at two weeks my surgeon said the pump causes major league stress on all body systems particularly the brain. I mentioned elsewhere that Dr. Cosgrove did a mitral repair on a friend with pump time 58'. I was on 87' How long were you on?
    Keep trying to read ,etc.This will pass!
    Marty
    Mitral valve replacement
    September 17, 1998
    Mechanical St. Jude
    Inova Fairfax, Falls Church VA
    Dr. Ed Lefrak

  15. #15
    Larry Rogers Guest

    Default

    Jennifer,

    I had my mitral valve repair done June 25, 2001, and experienced most of the same problems you are currently having. The good news is that most of them have disappeared or are becoming less frequent.

    While I was in the hospital, and at least 2 to 3 weeks after surgery, I must of had dozens of migraine visual auras. As the weeks and months went by, they diminished to one or two a week with no residual pain.

    My biggest problem was dizziness. Four weeks after surgery, I went to the emergency room for an echo, blood test, chest X-ray, etc., and they could not figure out why I was having the dizziness. My cardiologist told me it was not being caused by my heart surgery and I should go to my family doctor to check out my ears. Sound familiar? Well, I went, and he could could not find anything wrong.

    3 months after my surgery I had a regular appointment with my cardiologist and asked him point blank if these problems would simply take time to resolve themselves, and would a time frame of about one year be reasonable. He said yes, it would take about a year for these problems to diminish.

    I hope this information helps. I know that when some of the other folks who took the time to share with me their experiences, it really helped me in my recovery.

    Larry

  16. #16
    Mara Guest

    Default

    Jennifer-
    I had problems concentrating. But no migraines. Before my surgery I used to get migraines regularly(at least one a month) and since age 14 had been seeing a neurologist for them. Since my surgery I have not had one migraine (knock on wood)! The neurologist thought the beta blockers would help the migraines. they didn't really. I had better luck with magnesium than anything else.

    That hazy feeling was around for a few weeks, but now it is long gone. My brain farts are all me now, I can't blame the pump. I was on the pump 4 hours! A long time!

    things get better. It just takes time. there is a drug called Topomax that is supposed to be good for migraines. It is really a seizure medication but supposed to help real migraines. I was on a seizure drug called Gabatril for migraines, it didn't work. I have heard that Topomax does though. The new drugs like Zomig and Imitrex work, but I bet you can't take them cause of the valve. Are on a mechanical valve? If you are and on coumadin most of the good migraine drugs are out. Bummer.

  17. #17
    Sherry Houck Guest

    Default

    Hi, Jennifer,
    I've had visual problems off and on now for almost five years since my mitral valve replacement. I see blotches, floating stars, zig zaggy lines, and grey "curtains" covering my line of vision in one eye. The latter is particularly bothersome since it actually has a name - fujax - and is clearly associated with strokes. Luckily, those episodes only happen about once per year. Earlier this past fall, I was diagnosed with a case of transient global amnesia. I absolutely have no memory of about five hours one Saturday afternoon. I don't know if all this is related to the pump or what, but it's bothersome nonetheless. Keep in touch and let us know how you progress and if these visual symptoms diminish. Sherry

  18. #18
    Join Date
    Jun 2001
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    Northwest, IL
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    Default

    Jennifer,

    I'm so sorry to hear of the difficulties your having. It sounds like that Coreg could be the problem. I hope your cardio does take you off the Coreg.

    I did have vision problems, memory problems and coordination problems for the first few weeks, but I eventually got better with time. The first week that I tried to type on the computer, my hands wouldn't function right, and all my words were as if i were dsylexic! Getting off all the meds helped. You're so doped up it's hard to function at all. Your body has gone through a major trauma and it does need time to heal. Please keep us informed how you progress. I'll keep you in my prayers.
    Lorraine
    AVR & MVR and Tricuspid Repair
    St. Judes Mechanical
    March 8, 2001
    Chicago University Hospital

  19. #19
    ticking barbara Guest

    Angry Migraines, migraine equivalents, auras, and other baddies

    Dear Jennifer;

    I haven't visited this site for ages but when I saw that you have the same combo I have, I just had to write you a note. I have had migraines since I was 9 years old and have valvular heart disease, with two mechanical replacements done on the 23rd of MAY, 2001. I had a lot of memory loss and inability to handle life in general for many weeks after my surgery. I have had an increase in migraines ,but I also had to stop taking a med that was limiting my headaches pre-op. I think the advice and reassurance you have recieved from other members of this site is accurate-time will heal a lot of your troubles.

    I feel very sorry that you have to go through such a cruel set of circumstances while trying to recover from a major surgery; however, I have always known that migraines and all their equivalents always hit us when we've already crashed and burned!

    My best to you. Ticking Barbara

  20. #20
    Join Date
    Jun 2001
    Location
    McLean, VA
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    1,597

    Default Don't forget rehab

    Hi Jennifer, How goes the struggle to return to normalcy? One thing I forgot in other messages is.........after you're six to eight weeks post op enroll in your hospital cardiac rehab program. These are staffed by specialist nurses and physiologists. The hospital program usually lasts about twenty weeks and then you join a fitness club and keep on. I believe rehab got the blood circulating in my brain and elsewhere as much as anything else did. If you want some details on rehab special to your situation, feel free to Email me personally.
    Marty
    Mitral valve replacement
    September 17, 1998
    Mechanical St. Jude
    Inova Fairfax, Falls Church VA
    Dr. Ed Lefrak

  21. #21
    Zazzy Guest

    Default

    Hi Jennifer,
    Some of these things are quite scary aren't they? One year after my mitral repair I still have problems sometimes... the dose of one of my meds is four capsules... I often have to have a family member count them for me! I may have six pills... I may have three pills! Unfortunately this is my med for my leukemia and cannot be put into a pill box.

    Oh and speaking of prescription bottles... in an earlier post you mentioned that you had to have your husband open your meds for you. My pharmacist puts all of my meds in bottles with non-childproof lids.... but then I have no small children wandering around either lol.

    Coreg can have some weird symptoms... but your dose of 6.5 mgs is small (same one that I was on for a time) so it shouldn't take much weaning of it!

    Take care,
    Zazzy

  22. #22
    JenniferO Guest

    Default

    Thanks so much all for sharing your experiences. I certainly hear much that sounds familiar.

    We landed a second time in the Emergency Room followed by two days in the hospital here in Salt Lake while they ran another MRI and TEE and miscellaneous tests and put me on a drip of Heparin. This was following an episode Thursday night where as I tried to wake from sleep I was able to come to consciousness only after a struggle and my left arm was numb and non-functioning and my left leg was partially numb and also not working. It lasted about five minutes after which some partial feeling began to come back and another five minutes I was feeling more functional but dazed and scared.

    The diagnosis never became clear but the tests showed no ischemic activity so they finally released me without putting me on coumadin as they had been threatening.

    That second round in the hospital was very demoralizing.

    Marty, I don't know how long I was on the bypass pump. Near as Mike and I can figure it was between an hour and an hour and 15 minutes given when they told him Cosgrove was going in to start the repair and when they told him the repair was done and I was off the pump. Cosgrove reported the repair went very smoothly so I don't think there would have been any particular delays.

    I have weaned myself off the Coreg and a lot of the visual migraine symptoms have disappaeared. My eyesight is even allowing me to see the computer screen a little better.

    It's interesting how many forms the visual patterns take. When I closed my eyes, I sometimes had whole images and picture shows going through my head like some sort of residual memory patterns. At one point, I even had a little green monkey that kept jumping up and down at the periphery of my eye among other flashing patterns, hammers bobbing up and down, pinwheels spinning all in hues of fushia, lime green and lemon yellow. Other times I had images of crowds of people gesturing toward each other or marching in parades. Very weird stuff.

    Also, Frank, this weekend the lack of appetite got to me. Everything I could think of to eat simply made me feel nauseaous.

  23. #23
    Jessica_B. Guest

    Unhappy Eeew...

    Doesn't sound like a nice experience, your 2nd round at the hospital? Glad they took you seriously though.

    I was on the heart and lung machine for 5 hrs 15 minutes. Aside from making me very cold for days afterwards I still have residual effects on my memory.

    As to the eating, when I was recovering after a serious reaction to some medication after my MVR I found that mashed potatoes worked pretty good but getting the best approach to get your apetite back is very much an individual thing I guess.

    Take good care of yourself! I hope the problems will let up on you soon enough!

    /jessica

  24. #24
    Join Date
    Jun 2001
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    upstate New York
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    9,897

    Default

    Hi JenniferO-

    Just wondering if everything is going OK, after your sojourn to the ER. Fill us in please.

  25. #25
    JenniferO Guest

    Default

    Nancy, thanks for the concern.

    I'm doing okay. The visual migraine stuff has for the most part gone away with just some minor disturbances since I discontinued the Coreg. So I think that was a lot of the problem.

    In spite of that, my cardiologist has today decided to put me on a blood thinner by the name of Plavix - described as more than aspirin but with fewer risks than Coumadin - for the next two months until my heart can "epithelialize". They seem to still be a little nervous and want to keep my platelets from "aggregating".

    I'm still extremely tired - maybe that's just normal for recovery from surgery like this or could be because my blood counts were low and are probably now lower after all the blood samples they took while I was on the Heparin last weekend in the hospital.

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