New to site - approaching surgery and I have epilepsy

[Allisoninoz]

Hi. I am nearly 42 and have known for years that I'll need my bicuspid aortic valve replaced at some stage. I'm seeing my cardiologist in a couple of weeks as I've recently developed a nocturnal cough (every night). I'd often tired but hard to know if that's just life (work/family) or something more. I often having an achy back/left arm but that has been for years and possibly due to heart surgery as a child (patent ductus at 4 and coarctation of aorta at 11). Was the night cough enough for other people to have the surgery or did they have to wait for other symptoms?
I'm doubly worried as I have mild epilepsy (I have occasional absence seizures) which is generally well controlled but I'm SOOOOO worried that I"ll have a seizure while i'm having the surgery - and die.
I have a wonderful husband and beautiful daughter and am frightened. But on the other hand, I'd like the surgery over with asap...

 

[Mentu]

Welcome, Allison

Welcome, Allison

Allison, there are hundreds of us here who will tell you that the anxiety that builds before surgery is one of the problems most of us share. For me the best way to deal with it has been to learn as much as I can about the whole process. When you speak with your Cardiologist and, especially, your Surgeon, voice your concerns about your particular issues that might cause complications and ask them what they will do to protect you. It is also very reasonable to speak with your primary care Doctor about anxiety and depression both of which are associated with heart surgery.

As for symptoms, some Doctors do tend to wait to see symptoms before they consider a recommendation for surgery but others are more interested in test results (the area of the valve opening and the pressure gradient across the valve being the most important of those). My cardiologist and surgeon said that they look at both while keeping in mind that not everyone displays symptoms until the condition becomes very severe. This is something you need to speak with your cardiologist about so that you know specifically what criteria they are using to determine when it is time to send you to a surgeon. It is also reasonable at times to disagree and request another opinion.

Now for the really good news...like most of the others, I've found my energy level has continued to increase since surgery and I am recovering both strength and stamina that I've not had in several years. I have also realized that there were symptoms present even several years ago but they were easily chalked up to growing older, not enough exercise, etc.

So, welcome to VR. Let us know how we can be of help.

Larry

 

[karen14]

Glad you're here Allison! Larry has given great suggestions here and I agree. Plus, keep in mind the doctor's will take care of you should a seizure occur. Try not to worry (easier said than done). As stated, just discuss this with your doc and you'll feel better. As long as they know of all your conditions, I'd take a deep breath and relax.
Praying a succesful surgery & recovery for you,
~Karen

 

[JimL]

For me, the cough at night was congestive heart failure. When I would try to lay down to sleep, I would cough, and would have to sit up to breathe. If your symptoms are anything like that, you really don't want worse symptoms.

 

[Allisoninoz]

Hi Jim, I've been waking coughing for the past few weeks and need to sit up to stop coughing but am not actually having trouble breathing. Did you have other symptoms before the coughing or was that the only one? I do not cough in the day at all.

 

[JimL]

It was a long time ago for me. It got so bad that I couldn't sleep lying down at all, but had to sleep sitting up. The GP diagnosed me with bronchitis and then a week later with pneumonia, but he was wrong both times. A chest xray, read by a competent doctor, should reveal is there is congestive heart failure going on.

 

[skeptic49]

Just wanted to say welcome to the site, Allison. Post often because there are lots of knowledgeable and supportive poeple here.

Best wishes,

Jim

 

[catwoman]

Allison:

So you've already had OHS twice, as a child. I'm sure you'll be consulting with a surgeon well-versed in repeat cardiac surgeries, even though these aren't the same procedures.
Once your AV surgery is a done deal, you'll begin to feel so much better. It's just getting to that point that can be a very anxious time. I'm almost 7 years post-op, and it seems like a distant memory.

Have you contacted your neurologist about your probable upcoming heart surgery? I would do that ASAP, and have him/her contact the cardiologist and surgeon to make sure things go smoothly for you.
I dated a man with epilepsy years ago. He had grand mal seizures, took dilantin, phenobarb, not sure what else. His seizures started in college after he had mono with very high fevers.

Good luck! Keep us posted.