Aortic dissection & aortic aneurysm information support group

Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

Anything odd since your surgeries or diagnosis of having AD or just an aneurysm itself?

Everyone thinks I'm crazy, but since my surgery, I think I'm more hyper-sensitive to hmmm just about everything from smells, barometric pressure, full moon, storm fronts, bass thumping in music(even though I love the bass tones), food additives like MSG, humidity, and I physically feel pain faster and harder than I did prior.

Now I don't know if it's the meds I'm on, or the nerves that were severed, or whatever, but it has continuously heightened and more is added all the time.

I even have issues with epinephrine (I know - natural to our bodies adrenaline wise), but I can't have any dental work done if they use novacaine with epinephrine as my body will shake and feel like I'm crashing off of a caffeine high.

Do any of you feel like your heart flips (like under your sternum area) after you smell something like exhaust or smoke, or have chinese food with MSG in it, or wine (I hear because of the preservatives) which of course kicks in the anxiety feelings which can start a whole array of issues?  Or when a front is coming in or a full moon, do you feel antsy, aching, or like you just are crawling out of your skin?

Sometimes I can just feel pressure in my middle spinal chord and then once it starts raining, or snowing, or the pressure changes, it subsides.  And the next day I'm fine.  It's like a cruel psychological Russian Roulette with my aneurysm holding the gun.  Every day is different.  But what I feel and what causes me to feel, continues to grow ---- soooooo, have any of you experienced that? or are experiencing it?

I have not flown in a plane since my surgery as I'm too paranoid as to what would happen when the pressure changes.

Just wondering if it's just me?

 

 

 

Views: 276

Reply to This

Replies to This Discussion

IT's not just you. I'm also hypersensitive to smells, cold, music beats etc. I'm not sure why this its, the cold I know is due to my BP meds, but the rest I'm not sure. I do believe a lot of it has to do with how well our bodies are connected. Part of it is our brains, if your like me you think about your AD/aneurysm daily, sometimes minutely(is that a word) I think our fear heightens our sensitivity, also remember there is(or used to be) a natural sack around the heart, we no longer have that sac(I believe it was fluid in the sac but I'm not sure) I also and I"m just guessing on all of this think that without that barrier our hearts feel things more easily. Hopefully others have some insight into this. Wishing you the best! *hugs*

Kimberlee

 

hey both,

this is where graeme will tell his horror story about the pericardial sac... i am hyper-sensitive to caffeine, and to music with lively bass sounds or strange numbers of beats per minute as my heart seems to synchronise... because of the thinners i can look at almost every visible vein in my body and work out what my pulse is and because of the stents in my neck due to the stroke, when my blood pressure is elevated i feel every heart beat directly in my head.

apart from that, i think i have got off fairly lightly ;)

r

Click.Thump.Whoosh.Tick. !! I love standing next to the big sub woofers in a club and feeling the bass thump right through my body.. Yes - we are all a lot more sensitive than any doc could dream of with our new 'whole of body' tuning forks...

:-)

Graeme

Thank you thank you thank you -- sorry you all have to feel the way you do just to justify that I'm not "odd"!!!

 

And yes my AD doesn't let me forget it's there unless I'm sleeping - and that's only until I accidentily roll over on to my stomach --  I don't think I've ever had so many pillows propped up like a barrier in my life.  My dogs love it as they like to make caves out of them, my husband on the other hand probably wished we could cut down on the time it takes to make the bed.

 

The sleeping will get better trust me. I was a stomach sleeper until my surgery, I can happily say I'm now sleeping on my stomach and sometimes my left side. I actually slept in my lazy boy for the first year after surgery. For two reasons, I couldn't lay down...ouch! and the most important I had a newborn who needed feeding every 3 or 4 hours..much easier to get up from a lazy boy than a bed. How long has it been since your surgery....I'm curious.

12/28/2004 was my surgery date, so I'm 6 years now.  I too had to sleep in a chair for almost a year -- the first 3 months I'm not sure I slept longer than 2 hours at a time.  I used to get up at 2, 3, 4 o-clock in the morn while my family slept and I walked around my living room, kitchen, and dining room just to get my blood flowing and to hopefully get the pain to subside.  I remember having to rock back and forth at times to help me kind of get myself up and out of the chair as I couldn't use my arms to push up.  I was finally able to do physical therapy 6 months after my surgery to regain strength and control of my left arm and side and that was when I started to feel more like a human.

I didn't like being on the pain meds, but it was the only thing that got me through the insanity.  Ibuprofen thinned my blood too much and I actually started bruising on my chest so I had to cut back on that and rely on Vicodin.  As soon as my palms started to itch, I knew it was time to be off of that too.  Due to how much I had to take back then, Tylenol and Ibuprofen don't do much anymore - kind of like I developed an immunity to them.  As for anything stronger like Vicodin - they make my heart skip, so I just don't use them (even though I've had my days when I really could have used something).

So how did you cope with the pain having a new born to boot?  I couldn't even have my kids hug me it hurt so bad.  It was so depressing, needing that normal contact, missing "normalcy" (they were only 4,8, 10, and 12 at the time).  I know that it was probably a wonderful distraction having your newborn, but no matter what, I know the realness of what you went through so how did you cope?

For me, I think the 2 ribs that were removed are what cause the most problems - even when I have an ultrasound done, it's difficult to breath if I'm laying on my left side (the radiologist told me that's normal with missing ribs).  Other times I can feel like I'm being stabbed, but I chalk that up to possible scar tissue.  Just below my sternum always feels raw and strained if any pressure is put there.  So to say the least - I have to wear looser clothing as depending on the fabric, anything fitted can just rub me the wrong way and it makes me feel like I'm crawling out of my skin.  I have to wear a tie only bikini top for a bra as I haven't found anything else that doesn't make me nauseous.  As for a mammogram - no way - I think it would send me through the roof. 

Considering how far I've come in 6 years, I'm looking forward to continuing to improve as I used to get my best sleep on my stomach :)

I know I complain in my replies - I guess I should say vent - but I'm truly thankful that I am still here to raise my kids.  I feel better than I did that first year.  And finding you guys, I can't even begin to explain what that has done for me.

 

 

 

 

 

Please don,t apologize for venting. That is one of the reasons we are all here. There is some comfort in knowing you are not alone in these things. As for coping with a new born, her dad was a huge help. In a positive note, recovering from AD surgery I barely noticed c-section pain..lol

hey cheryl,

don't complain about losing the ribs! cher paid a small fortune for her ribectomy!

i think a lot of people find venting helps, and none of us seem to mind that much... now what we can't cope with is people continuously apologising... ;p

take care,

r

Gotcha --- sorry -- just kidding :)

As I'm sitting here typing, my phone rang and the message machine picked up --- it's the Social Security office - they want me to call them back. 

I'm struggling with whether I want to be classified as disabled!

For the most part - I don't qualify since I was self-employed and didn't carry disability insurance and we own our house - which usually kicks you out of receiving any benefits.  I only checked into it as I can't seem to find a form of work that my body is agreeable with.  With my husband being laid off - my medical insurance cost started to frustrate me (as we pay for the insurance but I can't afford the deductible, so I just don't go in) and I thought maybe if I could just get the insurance covered - I wouldn't feel so guilty.  I miss getting a pay check, but not enough to risk dieing.

That was weeks and weeks ago.

Now they are calling and I don't want to call back.

I don't want to find out that I'm disabled and I don't want to find out that I'm not --- I know stupid right?

For all I know maybe they just have a question -- ugh!!!

CALL!

They asked when my last scan was -- which was the end of 2009 --- he said they might request my seeing their doctors (seriously?)  - mine weren't good enough -- Abbott Northwestern  -- really - it's a top vascular/thoracic heart center here.  He said their doctors don't do scans or anything so really what can they tell by listening to my lungs or my heart???? 

I know they are just doing their jobs.

It's this kind of stuff that mentally gets me and that's when I get angry/frustrated that I have this.  But I'm here and that's where I want to be. 

I should go punch a pillow or something -- but I'd probably pull a muscle or something.

Laloo

By the way - did you get your work up done?  If so, did you get results right away, or do you have to wait?

my doctor gets the results today, and if there is anything out of the ordinary i will be summoned to see him later on. they are testing for inr, infection, potassium and uric acid levels. i did a comparison inr reading on my coaguchek and i was at 2.6 yesterday morning, so am definitely calling them later to get that reading.

r

RSS

LIFELONG MEMBERS

Our AD Facebook Page!

Visit Our Facebook Page/

OR - Post our Website Link to your Facebook Wall Profile
If you have the QR decode app in your smart camera phone - hold your camera phone over this QR CODE and it will automatically take your smart phone (*if you have the internet enabled on your phone) to our Facebook Page!

 OR - Use the QR Code above

What's a QR Code??
Download QR Reader App.

Our Twitter Feed!

Events

© 2019   Created by Graeme.   Powered by

Badges  |  Report an Issue  |  Terms of Service