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heartbeat1103

Hello All. I have a lot of questions regarding post valve replacement. I was born with congenital aortic stenosis. My first open heart was at age 15. In 11 of 2003, I had my second open heart and valve replaced with a mechanical St. Jude. Since then, I have had a lot of memory loss, panic/anxiety attacks, depression, insomnia, headaches, and vision disturbances(blurs). Has any one else experienced these things? My doctors look at me as if I'm delusional. These symptoms have affected my lifestyle; My marriage, parenting skills and I miss a lot of work because of insomnia and panic attacks. I haven't looked into social security diasibility (is this even an option at my young age of 38). Anyone with advice or even similar experience please lets talk. I feel alone and don't think others understand.

John
 
Hello John and welcome.

I think we all had one or more of those symptoms post op, but not long running. I've got the insomnia big time ever since my surgery in 2002.

Did you have any comlications during or after surgery?

As far as disability, so long as you meet their listings of impairments, doesn't matter what age you are so long as you've paid into the system long enough to have credited work years.
 
Thanks Ross

Thanks Ross

Prior to my surgery, I had severe syncopal episodes. During my surgery, heart spasms from caths, ventricular tachycardia into ventricular fibrillation. And of course my current symptoms. You?
John
 
Can't really use me for a gauge. I have lung issues complicating matters, but for both of my surgeries, I was in ICU for 2 months. Nothing ever went right. First surgery I had stroke and then staph infection. Second surgery they played with my lungs causing one to collapse and then again another staph infection. I was so paranoid of laying down that it wasn't funny. I begged to be put in the chair for the day. It made for a lot of nightmares for me and I wonder if I'm not subconsciously struggling with that now.
 
Hello John and welcome.
Since my OHS I have some anxiety issues....no going out alone, no crowds, etc.
I have refused meds for it, however one Ativan pill is taken for the dentist visits.
Do you take any meds?
 
Hi John & welcome to the forum.

Since my 3rd OHS in 2006, I too suffer from insomnia, most nights I'm lucky if I get a good 4 hours of sleep straight through. I too have elected not to take meds for that because I already have my plate full w/medications that I absolutely have to take to keep my condition in check.

I also have the occasional headaches which I attribute to my durectics but not sure that's what causes them. And too, I don't do very well with large crowds or gatherings. I prefer solitude.

As for Social Security, I finally had to hire an attorney who specialized in SS cases & then after hiring him, I was approved in a matter of 2 weeks. I had been trying on my own for about a year & was denied twice. Thanks to the advise of Ross & others, hiring the attorney was the best thing I could have done. And, like Ross said, your age should not matter; if your medical condition is severe enough & you have the number of quarters accumulated, with the help of your doctor(s) & a good attorney, you may qualify. Look into it!

Best of luck to you & I hope you get to feeling better! :)
 
John, Welcome. I think all your symptoms are ones I've had, though for me they were not all so lasting. I think it would be worth seeking some professional help with the anxiety and panic attacks. Trouble is that is very hard to come by these days. In my opinion, you need somebody to help you re-evaluate the feelings at the root of these symptoms, not just meds. Some of the anxiety will likely be with you the rest of your life. I think most people that have had a life threatening condition/illness are bound to have this sort of insecurity. Your doc shows some real lack of understanding if he's looking at you like you are crazy, and not dealing with your feelings in any way. I'd want to find another doctor. It is good that you are aware of the feelings, and here complaining about them. This is a good sign! You are in a very tough battle, and I want to encourage you to keep fighting! Do talk to us here. There is a wealth of experience, and understanding I haven't found anywhere else. And we do value you, with your own experience, as a new contributing member. May we bring you comfort, and help you find answers, and solutions. Brian
 
You are NOT alone!!!

You are NOT alone!!!

Hello John!
Welcome! You're never alone on VR.com forum. It's a wonderful place to cry, vent, socialize, encourage and just talk. I had my surgery in Jan. of this year so it's not been as long as yours has, however, I have all your symptoms except the blurred vision. I was in such bad shape that my husband finally took me to a psychiatrist. I couldn't even begin to carry on a normal life. Well this psychiatrist told me some things that my cardiologist and my surgeon forgot to mention (not that it would have or could have changed my surgery it was just never brought up). When you have OHS you are on the bypass machine foras short as time as possible...however for that short period of time your body doesn't control your heart or blood supply. The doctor told me that due to this fact your endorphines, hormones and other enzimes in your body sort of get out of sync. They don't know why this happens they just know that it DOES happen to everyone. Some people get messed up more than others for various reasons...length of time on bypass, difficulty of procedure, etc. He prescribed me an antidepressant (Effexor) for my depression. Gave me a few Ativan's until the Effexor had time to kick in. Told me to have my GP to give me something for my headaches...which he did...if they become extremely bad I give myself an injection of Torodal and another of Phenigrin (both are non-narcotic). The insomnia I still battle with. Sometimes I can sleep but most of the time not. But I have to tell you...once that Effexor took hold there was a huge difference in the way I felt. Now if I have a panic attack I can usually talk myself through it. If not then I still have a couple of Ativans left. The headaches don't come as frequently...I still get them but not as often. My husband makes sure I always have my Effexor...makes his life a lot easier also! LOL! So you are not alone or delusional. Your just experiencing life a bit harder than most. But as I said before the people on VR.com are great and someone will always be here for you. Good luck to you and I hope this helps...I don't tell just anyone that I've seen a psychiatrist...it's our secret!;)
 
heartbeat1103 said:
Hello All. I have a lot of questions regarding post valve replacement. I was born with congenital aortic stenosis. My first open heart was at age 15. In 11 of 2003, I had my second open heart and valve replaced with a mechanical St. Jude. Since then, I have had a lot of memory loss, panic/anxiety attacks, depression, insomnia, headaches, and vision disturbances(blurs). Has any one else experienced these things? My doctors look at me as if I'm delusional. These symptoms have affected my lifestyle; My marriage, parenting skills and I miss a lot of work because of insomnia and panic attacks. I haven't looked into social security diasibility (is this even an option at my young age of 38). Anyone with advice or even similar experience please lets talk. I feel alone and don't think others understand.

John
Click to expand...

Visual Effects are VERY COMMON following OHS. Go to the Top of the Page, find SEARCH in the Blue Line, click on SEARCH and type in "Visual" or "Vision" and you will find links to LOTS of posts on the subject.

Short Term Memory Loss (and other cognitive effects) are/were the "Dirty Little Secret" about OHS. Studies have been done and some improvements have been made such as using the Best Filters to remove debris at the output of the Heart/Lung Bypass Machine, and Slowing the rate of Raising Body Temperature following surgery (during which your core temperature is lowered (to the 80 degree range I 'think'). There are a couple of theories on why the Memory Part of the Brain gets 'damaged' if it is heated up too fast. This has been the subject of some posts in the past. Search for "Memory" or "cognitive".

You may want to get a copy of your Surgical Report from the Hospital Records Department.

I'm guessing that you had your surgery at a Local Hospital. The Major Heart Hospitals were usually up on those issues (and their Doc's were well aware of them).

Have you considered talking to a P*rsonal Inj*ry guy?
 
Welcome to VR, John. Glad you found us. I had most of what you described in the first year post-op, but it got better over time. I still get occasional bouts of insomnia, and my memory doesn't seem to be a good as it used to be. I sometimes find myself forgetting names I should really know, or my train of thought in the middle of a sentence. I'm not sure it's from the OHS or just age :rolleyes: ;) Best wishes and good luck.
 
Hi John and Welcome. I was fairly lucky, I have some visual distubances and big time insomnia. I had insomnia before the surgery too so not sure I can blame that on OHS, but I am sure it did not help. I have some memory loss. I will be talking and know the word I need and can not think of it. I can describe the word. At work, I have learned to use another word. Some times I just plain don't remember. When they shocked my heart they told me they were going to give me something to forget.......it sure worked, I lost a week! Anyway, welcome and ask anything, somone will be able to help you.
 
Hi John ~ I'm still waiting or my valve to be taken care of, so i have no idea what happens afterwards. I just wanted to welcome you to this wonderful site. There are a lot of people here (as you can see form the above posts) who know a lot about what happens afterwards. What is so nice about this place is that people really care about you and they understand what you're going through. I hope that you start feeling better. Take care, Dawn-Marie
 
John, whether or not there is a connection between your surgery and your current symptoms ,I would still seek out counseling if you haven't already. I had an AVR in 1977 when I was 21. I can appreciate how you feel....It is difficult not to think there is a connection. But, there is help for many of the symptoms you described. Most of us have experienced similar experiences. I spent years sad,anxious and short of sleep. I didn't understand what was happening. I contacted the manufacturer of my mechanical valve to ask if others felt like me. At the end of the day it didn't matter as to why I felt the way I did...I needed help. You may need therapy...you may need medication...I don't know, but I do know it doesn't matter why you feel the way you do, it only matters that you don't feel well....and it is what it is...find a counselor...find a doctor...find a pastor. God did not create us to suffer.
 
I have experienced differences in concentration and memory problems, and I still have them. Right after surgery I had aura problems with the eyes. That has let up now. A friend of mine experienced bad anxiety attacks. I did not experience anxiety. I am a teacher, so the memory is a problem for me. I have read that it takes along time for some people. I think depression is very normal to happen. You should have a doctor that helps you through these different symptoms.
 
Welcome John.

I am 29 and just had surgery on 7-11 of this year. I too have high anxiety.... but it is slowly getting better. trying to remember the more i spaz about the little things, the more it causes me to stumble, hit my arm, etc.

have you tried talking to someone about the surgery alone and then with family?

my husband and i are looking into it just so that we can attempt to have as normal of a life that we can.
 
Hi John,this the place to be for any questions you want
answered,glad your here and just want to welcome you.

zipper2 (DEB)
 
heartbeat1103 said:
In 11 of 2003, I had my second open heart and valve replaced with a mechanical St. Jude. Since then, I have had a lot of memory loss, panic/anxiety attacks, depression, insomnia, headaches, and vision disturbances(blurs). Has any one else experienced these things? My doctors look at me as if I'm delusional. These symptoms have affected my lifestyle; My marriage, parenting skills and I miss a lot of work because of insomnia and panic attacks. I haven't looked into social security diasibility (is this even an option at my young age of 38). Anyone with advice or even similar experience please lets talk. I feel alone and don't think others understand.
John
Click to expand...

John -- If it helps you to know where you look for support, you should know that symptoms like yours happen to many people after all kinds of surgeries. There may be a "post-surgical depression" group out there.

My sister-in-law had exactly your symptoms after a completely different kind of surgery. Like you, it affected her work and personal relationships. I hope you will take comfort in the fact that she was able to conquer these problems and is back to her job and in a relationship.

For my own personal perspective, I have found both pre- and post-surgical that I get symptoms like yours from certain medications. Without the medications, the symptoms go away. The #1 heart-related culprit for me is beta-blockers.

Also, from the perspective of someone who has helped more than one relative through anxiety and depression problems, I suggest making work with a psychologist or psychologically-based counselor a high priority. This is in contrast with medication-based psychiatric care. Yes, psychiatric medications can be helpful, but too many people are told to rely on them alone, and their problems are never truly solved, and they are not taught the tools to deal with the inevitable ups and downs caused by their medical and psychological conditions.

Finally, have you been checked by a General Practitioner for any and all other kinds of medical problems? Some medical conditions can give you symptoms that mimic psychiatric conditions.
 
Hi John, first of all, welcome to the crazy gang!

There is a wealth of information and advice in the previous posts, but I just have to add my 2cents worth.

I have depression, diagnosed about 15 years ago, and although anxiety is not a big part of it, my DH has anxiety disorders - just to let you know I know where you are coming from. I would seriously seek professional help, the best therapy is often a combination of talk therapy and short-term medication in most cases. You do not have to spend the rest of your life in this state, I know, I have spent about 5 or 6 years of my life more or less as you describe - not going out, not doing anything (even down to having lost a few good jobs over it).

Let us know how it goes . . .
 
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