Many questions...

[pedimed]

Hello, I am a new member to this forum. I am a 31 year old female who has bicuspid aortic valve wtih aortic root dilation and resulting aortic insufficiency. I have recently been having increase in sx (palpitations, shortness of breath, lightheadedness, fatigue, tachycardia..) I had a second opinion from a new cardiologist regarding the root dilation and surgery was discussed-most likey root repair with valve spairing.... Given my small BSA, my level of dilation is off the chart.. I had a recent CT-A and am now awaiting hte results...

Anyhow, I am thrilled to find this forum and would love to hear from others with similar experiences... when was surgery indicated, what symptoms were you having, how long were you in hte hospital, how was your recover, and anything else you may think good to know..

I apreciate it advance any thoughts or advice and responses you can provide..

thanks!!

Leah

 

[Ross]

Hello Leah and welcome to the forum

For myself, breathlessness is what led to my complaint and caused the check up. That was the only symptom I had and it turned out to be severe aortic regurgitation.

Others will be along. Weekends are slow around here, so please be patient.

Again, Welcome.

 

[Karlynn]

Welcome Leah!
I was 32 when I had my mitral valve replaced. Now I'm a young 47. I don't have experience with your particular valve issues, but I did just want to say "hello" and let you know that problems can be fixed, fixed well, and that life is good!

 

[Blanche]

Perimed:
My husband was in his 50s when he required valve replacement due to a bout with endocarditis. Since then, the advancements have been many and varied. I wanted to welcome you to the board and to let you know that we have several members who have had similar conditions who have been successful in dealing with their conditions through surgery and other methods. I know that some will be here soon to share information and welcome you.
Kind regards,
Blanche

 

[gijanet]

Hi, Leah!

Hi, Leah!

Can't help with your questions, but just wanted to welcome you to the group. I'm sure more folks will come along soon with some feedback to your questions. Hugs. J.

 

[diegocentrico]

welcome

welcome

welcome leah ....
im also new here but during a short time i could get good informations . if you want to knw the recovery process reading the " stories " part will be useful .
i spent my time to read previous and old postes and threads in the forum and it was really helpful .
i will have AVR and symptoms a bit similar to yours. shorrtness of breath is the main one . i hope the symptoms dissapear after surgery

good luck

 

[pedimed]

Thanks...

Thanks...

Hello all,

Thank you for your replies.. I do look forward to continuing correspondance and hearing how everyone has handled different cardiac conditions. I have never really spoken with anyone with similar symptoms/diagnosis so this is all very exciting to have come across this site.

I do apreciate everyone's advice in terms of how to take each post.

I was just reading through some past posts and came across a discussion of migraines and heart valve/regurgitation connections.. I find this particularly interesting as I have had serious hemiplegic migraines throughout graduate school and finally got them under control recently to only hav ethem come back, along with symptoms that appear cardiac in nature... interesting..

To all those undergoing surgery soon, best of luck. hope the road is smooth.

Leah

 

[CThrock]

Hi Leah

Hi Leah

Do all the research you can find out all you can ask all the questions you can .
Welcome to this forum its the best thing I ever did. God Bless r you are in my prayers. My surgery is on Tuesday, June 20th @ 7:30 am.at Stanford University Medical Center in Stanford.

 

[Naomi]

I was just reading through some past posts and came across a discussion of migraines and heart valve/regurgitation connections.. I find this particularly interesting as I have had serious hemiplegic migraines throughout graduate school and finally got them under control recently to only hav ethem come back, along with symptoms that appear cardiac in nature... interesting..

Welcome Leah! I'm 26 and have a moderate-severe insufficient BAV without root dilation. I'm still in the waiting room so I don't have answers to your questions, but I wanted you to know you're not alone! I recently had a hemiplegic migraine (6/5) and I was wondering how you got them under control? It would be interesting to know if they will get better when we get "fixed".

 

[Georgia]

Welcome, Leah.

The migraine-type things seem to abound among us valvers. I had occular migraines quite often prior to surgery; now have them very seldom (maybe every other month). Others have them as often after surgery as before. It's a mystery to me.

Your symptoms do sound like you're cranking up for surgery. I hope you're consideing contacting a surgeon; as you'll see in many threads here, cardiologists like to wait to operate, surgeons want to get it done sooner rather than later.

Basically, you have a mechanical problem that can be fixed by a good mechanic. If your cardio doesn't seem aggressive, take the bull by the horns and make an appt. with a surgeon yourself. You don't want your heart to have permanent damage when it's avoidable.

 

[LadyBlue]

Anyhow, I am thrilled to find this forum and would love to hear from others with similar experiences... when was surgery indicated, what symptoms were you having, how long were you in hte hospital, how was your recover, and anything else you may think good to know..

I apreciate it advance any thoughts or advice and responses you can provide..

thanks!!

Leah

Welcome! I always liken my experience with finding this site to landing on a planet of my "own" people! People who have gone through this and who understand what it's like!! I have been here for a month and have learned sooooooooo much and the people on here are W O N D E R F U L !!!!

 

[Barbara Stewart]

questions

questions

I did not find this site until after my first disastrous surgery so I can testify to how much more educated I am now than then. This site has given me information that has nothing to do with the heart, like what "ocular migraines" are. I had them for years in my 20's and only now in my 50's do I know what they are.

Ask questions, whine (or whinge for our Aussie members) and feel right at home.

BArbara

 

[pedimed]

Surgeon Monday

Surgeon Monday

Hello all and best wishes for all of you who have recently undergone surgery, I hope your recovery is going smoothly...

I am finally meeting with a surgeon tmw regarding sx and dx of mild-moderate AI wtih 4.4mm this varies with echo studies) root dilation. I would like surgery now, rather than later and am curious how many of you had surgery based on having dilation that when compared to your body surface area was off the chart? I know by numbers I do not necessarily qualify, however when accounting for my BSA (1.5) and 32y/o I am off the curve...

hope this post makes sense..

thansk in advance for your responses..

best wishes

Leah

 

[pipersmith]

Welcome Leah!!

Welcome Leah!!

I am 33 and recently diagnosed with aortic insufficiency. I initially went to the doc for headaches - it took a year for him to hear the murmur.

My symptoms are very similar to yours. Interestingly, my valve does not apper to be bicuspid - in all of the tests so far, they cannot see anything wrong with the valve. The numbers generated from the ECHO and TEE are good - from what I understand, not necessarily indicative of surgery. However, from my reading, symptoms themselves are often indicative of a need for surgery. As I have so many - my cardio has sent me to the surgeon on the 6th. My point is - even if your numbers don't reflect a need for surgery now - your symptoms may indicate differently.

Here is just one article I read indicating that symptoms are generally a factor when determining when to operate...
http://ctdigest.com/Apr00/4_rev1/4_rev1.html

Best of luck, and stay in touch here - it is the greatest support and resource. and funny....I am wondering how post op members keep from hurting themselves laughing it up

piper

 

[bvdr]

Hello, I am a new member to this forum. I am a 31 year old female who has bicuspid aortic valve wtih aortic root dilation and resulting aortic insufficiency. I have recently been having increase in sx (palpitations, shortness of breath, lightheadedness, fatigue, tachycardia..) I had a second opinion from a new cardiologist regarding the root dilation and surgery was discussed-most likey root repair with valve spairing.... Given my small BSA, my level of dilation is off the chart.. I had a recent CT-A and am now awaiting hte results...

Anyhow, I am thrilled to find this forum and would love to hear from others with similar experiences... when was surgery indicated, what symptoms were you having, how long were you in hte hospital, how was your recover, and anything else you may think good to know..

I apreciate it advance any thoughts or advice and responses you can provide..

thanks!!

Leah

Hi, and welcome! You may not have happened upon our reference forum but it holds a wealth of information. This link will bring you to the guidelines that many doctors will follow.

http://content.onlinejacc.org/cgi/content/full/48/3/e1?ct

I think one of the key components of what you have already relayed to us is that you are having symptoms. That often indicates that it is time to take action.

 

[Guest]

...stay in touch here - it is the greatest support and resource. and funny....I am wondering how post op members keep from hurting themselves laughing it up

*chuckles*

Well, I didn't read TOO much soon after my 2003 surgery ... I knew laughing wasn't such a pleasant experience at the time. Heck, the Friday after my surgery (when I was still in the hospital), several of my family members came to see me ... we had the TV on ... and had to turn it off ... because the laughter was a hurtin' me ... he he he. Irony rocks .


Leah ... good luck!



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"These hands are meant to hold" ... All-American Rejects ... 'Move Along'

 

[temp69]

Welcome. I can't tell you how much this site helped me in the nervous time leading up to my surgery. Ooops, I just did! You will be fine! sending some good vibes your way. feel free to ask me any questions. I got an on-x mechanical valve, am 2 months post op and feel pretty good!