Aortic dissection & aortic aneurysm information support group

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

Got a Root and Ascending Aortic Aneurysm

Hello to all you fine people.

I have read many stories or posts here, over the last month or so. Was glad to see that people from different Countries were members and posting here since I didn't really find any active boards for the US.

I'll be 60 in Feb 2012, here is what brought me to sign up here, though it is the latest of Diagnoses on the chain.

I was diagnosed with a 5.27 cm Aortic Root Dilation and moderate dilatation of Ascending Aorta, by Echo at the beginning of Sept 2011, and had a CT scan mid Sept 2011 which showed the Dilatation actually at 4.6 cm. I don't know why they didn't call it an Aneurysm in the reports? Also there was some mild regurgitation in each valve.

I had looked up as much information as I could when my Doctors office first told me the Echo report results over the phone and went in for my follow up appointment, and waited until I had my CT scan to see a Cardiologist, thinking he'd need that info also. It was interesting that the Cardiologist told me less than what I already knew or figured out.

Other than that, he just shotgunned fired questions to me and said here's the Plan, another CT in a year, though my Doctor suggested in 6 months, and because I have been having trouble with Shortness of Breath or getting extremely winded with exertion and fatigued, he ordered a Chemical Stress Test for 26 Oct '11.

There was a little more to the visit, but it was pretty much just an in and out office appointment. He didn't even really discuss anything about controlling Blood Pressure, or other cautions, etc.

I was in the process of having physical health issues looked into and I had applied for Social Security Disability Benefits (in June '11) which I should be receiving approval or denial any time. I haven't been able to work since April '11 because of other conditions, and which I've had MRI's, EMG, Sleep Study, X rays etc

I was Diagnosed with:

Degenerative Disk Disease, Cervical and Lumbar
Mild Arthritis in Right Shoulder
LevoScoliosis (had for 25+ years)
Pinched Ulnar Nerve in both elbows
Carpal Tunnel Syndrome in both hands
Severe Obstructive Sleep Apnea, being treated with CPAP

I had my Deviated Septum straightened in '04
Was Diagnosed in '04 with Crohn's Disease with some Diverticulitis
High Blood Pressure in '07

As mentioned the Aortic Aneurysm was the latest to be found after I was already filing for Disability

Many of you probably took it upon yourself to do personal research, googling and wikipediaing, with all the information that is easily available. It has been a constant study of the Human Anatomy for the last few years trying to figure out my health situation, especially without having health insurance to do anything about symptoms, but have had Insurance since May 2010. Also, it is interesting that I can now follow fairly well any Movie or TV show that deals with Medical plots or subjects (lol).

My frustrating Doctor experiences have been many, as I'm sure most people face. They just kind of want to get you in and out and don't seem to want you to discuss anything more than what they can make an "ah hah!" diagnosis and write a prescription. I'm sure they deal with patients that just jabber on about things, but I have had to educate myself as much as possible to get the Doctors to look past what they think is wrong.

Because of my own study and research, I've had to insist that my Doctors give me referrals to specialists all during this in order to eventually get a Diagnosis. Otherwise, I was told a number of times, that I just needed to be treated for Depression as it causes many symptoms.  I actually had to change (fire) 2 previous Doctors for seeming lack of interest.

Even though I listed a number of conditions on my health questionnaire, I was the one who had to direct my Doctor to possible conditions, because I had had untreated Hypertension (for a few years), Sleep Apnea and LevoScoliosis which all are hard on the Heart and insisted that I get some kind of imaging, otherwise he wasn't going to do anything about my symptoms other than a prescription. The same way I had my Sleep Apnea diagnosed, after a Neuro Psychological test, that I insisted on having done, instead of just being prescribed Meds for Depression, but in itself is a cause for certain mental faculty issue I now face besides fatigue etc.

So, now I have one more health issue needing to be resolved, followed, monitored and ultimately possible surgery. It is not known how long or fast the Aneurysm had been growing, but I would guess more aggressively since my (untreated) High Blood Pressure condition started. I went through some extremely stressful situations for a few (5 - 6) years before, during and after getting on Meds.

Last year my sister in law went into the hospital for a heart condition, and I didn't really note exactly what her diagnosis was, but my wife told me after I was diagnosed, that it was actually an Aortic Dissection. So far I've been fortunate not to have had a Dissection, but of all the physical exerting things I've done over the last few years, it was probably Russian Roulette, so now I'm overly cautious.

There is more of course to my overall physical health that is tied together, but it has been getting difficult to even write out (mostly from symptoms from my Sleep Apnea), even though I want to, I end up rambling to no end, so that's all for now. Anything else with the Aneurysm will be future occurrences or dealings I'll most likely report on.

Feel free to ask any questions.

Brian

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Comment by Graeme on October 18, 2011 at 8:09

Hi Brian (and Cher!)

 

Thaks for such a thorough post and Cher for her extensive advice and support. It what you two are doing for support for each other that make this forum worthwhile!

 

cheers

 

Graeme

 

 

Comment by Brian D on October 17, 2011 at 21:43

Hi Cher.

When I had my appointment with the Cardiologist, I was first asked why I was there, first by the assistant taking blood pressure etc., then by the DR. But I said that when I called to make the appointment I told them they needed to get my Echo and CT reports so the DR could look them over, and of course the Desk said yes the DR will get them ahead of time. Well, they didn't have them and took awhile to get them faxed, and then the DR asks "so why are you here" ...arrgh. When he got the reports he just kind of read off the findings etc. stuff that I already heard from my reg DR and what I researched.

I was already flustered and having trouble with my blood pressure due evidently to the Sleep Aide that I was trying out that my regular DR prescribed a week earlier, to help with my sleep problems, even though I'm being treated with a CPAP machine. I didn't totally read through all the warnings and side effects when first taking the Meds like I usually do, but one of the warnings was not taking it if you have Sleep Apnea. But the day I went in for my Cardiologist appt I thought I was having a Heart attack or stroke by time I got to the appointment, they did a EKG but it was normal, so I concluded that I had to stop taking the sleep aide.

I tried to explain to the Cardiologist all the things that I was being diagnosed with and this and that, but he honestly didn't want me to talk other than answer quickly the dozen or so questions, and gave me his 2 step plan for how I was going to be treated for my Aneurysm. Even though I said I was taking Lisinipril and now Metoprolol, he didn't warn me about anything.

I had read the Social Security Disability list of Impairments and required tests, imaging etc. that they require to be done, it lists out some of the things that they won't order tests for such as Stress Tests for certain heart conditions due to risks. The Stress Test I am doing is done with out the physical exertion and by chemical means, so that might make a difference on how it will affect the Aorta condition.

Anyhow, I was just kind of in shock about how little communication interaction with the DR took place and will be looking for a new Cardiologist soon. I'll post any new information, hopefully a more caring interested partnership.

Thank you for your words, suggestions and encouragement.

Take care and be well.

Brian

 

 

Comment by Cheryl Kerber on October 17, 2011 at 16:01

No I didn't think you were whining - actually you sound pretty put together with everything you are dealing with.  It's hard to be upset with the medical field when I have had some phenomenal practitioners/surgeons and so forth - but the ones that aren't really kind of taint how you feel about all of them.

That pain clinic I went to last Monday was very disappointing and I should have trusted my gut -but I went anyway --- Now I've gone to 2 physical therapy appts last week - and already have noticed a difference.

I do realize that with each week post surgery we tend to improve, but I like being involved with my healing process and at least physical therapy has given me some ideas how to restrengthen my muscles.  It's amazing how atrophied our muscles get after surgery --- especially laying in a hospital bed for most of July.  But I'm very happy to be further along.  I go to one that includes Cranial/Sacral therapy - if you can - it would be worth checking into with your back issues.  They don't crank on you like the chiropractor (even though I had one recently that didn't do that with my situation).

I too was over all healthy - but the years and years I worked with preschool kids and catching so many of their bugs - it kind of took a toll on me physically - especially all the bronchitis and pneumonia.  I miss working with them because they have such exuberance - but the drs don't want me to risk getting coughs with what I have.  Not to mention - the surgeries have sucked some of my stamina/energy out.

As for your stress test - do they have any concerns since you have the existing aneurysm?  Just wondering.  I would have to go off my beta blocker before having that done, and I haven't agreed to take that chance, but my drs haven't pushed that yet either.

You sound so together and informed - very impressed.

I reached my 3,000 dollar deductible quite quickly with an emergency room trip back in like March or April - which didn't turn into anything, but it did end up pushing me to talk with the surgeons and well, long story short - surgery number 2.  Now that time I did listen to my gut - not that I wanted to hear surgery - but the timing was best with where my health was at the time.  Again, hard for me to completely complain about my insurance payments (even though our family insurance cost per month exceeds the cost of our mortgage --- that was a shocker) when I have seen the bills that have been paid in regards to my surgery --- every little thing costs wayyyy too much.  Even just kleenix - really?  That is where everything is so askew.  I know they have to recoop all the costs - but it definetly isn't affordable!

Well, like I said - you appear to be so together and that will only help you in the long run.  I admire your tenacity!

Keep us posted as you continue on your healing path! 

Cher

 

I have to say, that even though financially I'd like to be in a better place, my husband has been less stressed and he's been more around for our 4 kids and for me (amazingly through all of July since I was incapable of doing much of anything).

Our health really makes us appreciate the little things.  It also makes it harder to do stuff in life physically - but I can't say that I miss mowing or shoveling, and well, I've done the roller coasters, skied, and so forth already in my life - so I'm just glad to be here to raise my kids.

 

 

Comment by Brian D on October 17, 2011 at 3:25

Hi Ya Cheryl.

I appreciate you taking the time to give a response. I have read a few of your posts. Most of my parents immediate families are from the Mid West. My older Brother was born in St. Paul, me in Wisconsin, Mom in Iowa, Dad and younger Sister in SD.

I think my other physical issues is what my Disability Claim will be decided on, though of course every time I go to the Doctor SSD wants to get a report to add to the pile. Plus my age and not being able to do what I had been doing as a career for the last 20+ years, fairly physical and dextrous is now limited, and being able to learn anything new for gainful employment is somewhat hindered. I'm a couple years from early Social Security retirement age, so if I get declined, I'm sure a SSD lawyer will win an appeal, but of course it'll cost me and I'm needing the money now. I've read of a few people here trying to get Disability having a difficult time. Sorry for you and your Husbands financial predicament, I'm definitely feeling the pain there.

As mentioned, I have been frustrated so many times with Doctors, and have changed PCP's, Neurologists, Psychologists a couple times, looking for someone who will spend enough time to listen, otherwise I would have just been taking Meds for Depression (not that I couldn't use a little mood booster) instead of treating Peripheral and Radicular Nerve pain from Spinal Stenosis and Degenerative Disk Disease, Mental impairments from Sleep Apnea, that my Doctors weren't diagnosing.

But, I'll get my Stress Test done in just over a week, get the results and do my research, and get another Cardiologists opinion. I'm fortunate with Health benefits at the moment, no deductible, but $40 co-pay which is hard to come up with a couple few times a month lately for all my medical issues I have been trying to deal with.

My CT scan also showed another Thyroid Mass (I had fine needle expiration done in the '90's) and lung Pulmonary Nodules and Lymph nodes not quite large enough for biopsy or size criteria for suspicion of pathology, so more conditions to have to keep monitoring, on top of the other conditions needing treatment. I guess I'm paying for being relatively healthy most of my life, hardly ever getting colds etc. But I did work long and hard.

I have studied quite a bit of information now on Aortic conditions, so have a pretty good grasp of what or how I'm going to have to go about dealing with my situation. I probably won't or don't have any advice for anyone else, but can understand peoples fears, frustrations etc.

Nice hearing from you Cher, hope I didn't sound like I was whining about my life, lol. Take care too.

Brian

Comment by Cheryl Kerber on October 17, 2011 at 1:39

Welcome Brian -- I'm in Minnesota - and totally understand your frustration.  I had the same experience with the cardiologist my doctor that found my dissection sent me to.  I had my cousin with, and we both were floored that he asked my why I was there - progressed to tell me to get another scan in a year and sent me on my way --- I was there about 5 minutes.  Not a mention to taking heart meds or BP meds - nothing.  Luckily, I pursued more info and a 2nd opinion from a different vascular surgeon who explained everything.

I ended up having emergency surgery 6 weeks later, before I started any meds (due to the holidays, my dr suggested starting after they were done since you can get sleepy he said).  I do respect my dr as he could have ignored me from the beginning -- I was 39 and a woman - and it just isn't common for this to happen.

I was rejected for Disability as we own our house and I have use of my arms.  I was so frustrated last year when my husband got laid off (the dissection/aneurysm forced my out of my line of work as a preschool teacher) and I had limitations placed on me due to the aneurysm, so I tried pursuing disability just to cover my health insurance as mine is of course more expensive since I have a preexisting condition - but no dice.

I would press for the preventative meds - I'm on Lisinopril 10mg and a beta blocker Metoprolol ER 25mg (3 at once) --- I never had a BP issue and my heart has shown to be healthy - but even after surgery, I will be on those meds the rest of my life as preventative.  So keep on them!

And do if you can afford to - get your catscans when you are supposed to.  I was every 6 months, and last year with my husband laid off, I put it off for over a year -- but of course - that is when my aneurysm grew to recommended surgery size.  It was my 2nd one for my aorta issues (crossing my fingers that it's all fixed and I can go on with life now).  My AD robbed my sense of security, but it also increased my appreciation for life.

Don't give up on what you need -- don't let the internet freak you out too much either with the info out there.  If you can't find someone that will listen - I have a great surgeon to recommend you to here in MN at Abbott Northwestern hospital.  One thing I've learned, is not every cardiologist or vascular surgeon is trained in what we have -- so ask before you even go see someone - if they handle your type of aneurysm.

The restrictions I have been given - is now weight bearing exercises, no shoveling, no push mowing, no isometrics, no marathon training - nothing that would cause you to have to hold your breath or bear down.  I couldn't do situps or any of that.  Just some suggestions in case your drs haven't really said anything to you.

There are others on this site with similar situations as you have now.  Mine was descending thoracic and abdominal aorta, but all in all - it's our aortas so we have that in common.

Take care, and hopefully you can find some answers from others similar to you --- they are great at answering questions and just being there for support.

Cher

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