Aortic dissection & aortic aneurysm information support group

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

New to the site. Looking for some advice and reassurance. Thanks

Hello everybody. Great to find this site. Here’s my story:

In May 2008 I had a CT Scan at a general medical screening which revealed a functioning bicuspid valve and a dilated ascending aorta measuring 4.4cm. I'm under the care of Dr Bunce at St George's Hospital Tooting. He describes the aneurysm as "mildly dilated". Not sure how this differs from other aneurysms but when I have been surfing the internet I read that surgery is usually advised around 5.0 so feel that 4.4 is not so far away. Regular scans and an MRI in Feb this year led Dr Bunce to the conclusion that he wouldn’t need to see me for 2 years. He saw no signs of dissection or change in size.


I was really quite scared at first and for the first year spent hours terrifying myself on the internet! However now I often forget that it is there. I have just returned from a 6 month backpacking / volunteering trip around Central America. Climbed volcanos and did some trekking. Didn't actually carry a rucksack (just a little one). I took a large holdall on wheels. Dr Bunce wrote me a letter for my insurers to the effect that I was ok to fly and to work at altitude.


I feel fine except that I sometimes feel that I have indigestion even when I haven't eaten. Nothing too
painfully just a kind of dull ache. I have to admit that I am not very fit. Struggled quite a bit up the mountains but I am sure that was due more to lack of proper exercise than the condition. I Generally suffer from the aches and pains associated with age. Need to get some yoga started! Problem for continuity with classes when you are travelling so much. (lame excuse!)


I would appreciate it if anyone could help me with the description “mildly dilated” and also to see if anyone has had the problem of hair thinning which I am suffering? I think it is due to the beta-blockers. Also am I worrying unnecessarily about the indigestion feeling?


I am seeing my GP tomorrow morning. Thought it would be a good idea to get an appointment with Dr Bunce to ask him these questions. I will come back and let you all know how I get on. Sorry that many of you have gone through so much. I feel very lucky that mine was found before any serious problems have arisen and that it is being monitored. The information I have learned from the site has really made me feel a lot better about it all.

thank you

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Comment by Marianne Santamera on November 1, 2010 at 11:04
Thanks Graeme, Not sure how to create a blog but I'll have a go.

Kimberlee I've had a few echos started with first one in August 2008 than had one every six months since so it is well monitored.

Definitely has been a real help having this site. You guys are great and so helpful. Thanks so much.
Comment by Graeme on October 31, 2010 at 17:15
Hi Marianne..

thanks gr8tly for the update.. we have been away for the weekend and only just back..seems you are feeling better which is really good news...dont know much about the hair loss with beta blockers..maybe you post a new blog on the site just for this subject and see what other members have to say - as its a good subject and deserves its own blog. stay well...

cheers

Graeme
Comment by Kimberlee Jones on October 30, 2010 at 20:47
How many Echo/MRI CT scans have they done so far and how long have they been watching the aneurysm? I'm not sure but 2yrs seems a long time, I go every year for a CT scan to check aneurysm and every 6 months to check my leaky valve. I hope everything goes well with the new treatment for the hair loss and I am happy to hear you feel a little more relaxed. It's amazing what talking to people who have gone through the same thing can do for ones nerves.
Comment by Marianne Santamera on October 30, 2010 at 13:11
Hello Graeme, thanks for keeping in touch with me. As I said in my previous post I went to see my GP who sort of dismissed me saying that I shouldn't need to see Dr Bunce until the 2 years are up. He did let me have copies of Mr Bunce's reports from the Echo and the MRI I had at the beginning of this year.
The Echo Report reads as follows:
A transthoracic echo performed today (14/01/10) shows normal left ventricular cavity size and thickness with a normal systolic function and her biscuspid valve appears to be functioning well with no significant aortic regurgitation or stenosis. Her ascending aorta is 4.4cm. I will arrange for an MRI without contrast to assess the thoracic aorta. In the meantime I am happy for her to continue with her normal activities and plan to see her in 2 years time with a repeat echo.

The MRI Report (22/02/10):
Left ventrical is normal in size with good systolic function. There are no resting regional wall motion abnormalities. The left atrium is normal in size. The mitral valve appears normal. The aortic valve appears normal with no significant regurgitation. The thoracic aorta dimensions are: LVOT 23mm, ascending aorta 43mm, aortic arch 24mm, descending aorta 20mm. There is no coarctation. The right ventricle appears normal in structure and function. The right atrium is mildly dilated with mild tricuspid regurgitation.
Conclusion: Normal bi-ventricular structure and function. Mildly dilated ascending thoracic aorta


My GP referred me to another lady doctor in the practice regarding my hair loss who promptly gave me the contact details for a Harley Street Hair Loss Specialist. I was a bit shocked at his prices so asked her to refer me to an NHS specialist. I am now waiting for an appointment. In the meantime I have come across a natural remedy called Viviscal. It is a marine algae product which was recommended to me by a friend of mine who has had success with it. She is on beta blockers and had the same problem with her hair but this product has seemed to work. I started the treatment 3 weeks ago but it is supposed to take up to 6 months before any results are seen. I must admit though that I do feel less anxious about it now. Let's see. I will keep you all posted with the results! I have therefore decided to stick with the Bisoprolol because I think most beta blockers have similar side effects and since the hair loss appears to be the only one I have I am happy to see if I can find a remedy for that without changing the drug.

Sorry to bore you all with so much detail but I guess brings you all up to date and I am feeling so much better about everything because although I can't say I understand everything I think it all means I have less to worry about and much to be grateful for especially when I hear all your experiences. At least mine is well under control! Thank God for this site too!

I'm not sure who will get this message so I hope Kimberlee and Graeme see it. Sorry you had such an ordeal Kimberlee but I bet you feel very much better knowing that this one is being monitored. Thank you for writing to me.

Here's to good health and happiness for all of us! Best wishes. Marianne
Comment by Kimberlee Jones on October 29, 2010 at 18:40
Hi and welcome Marianne. The decision for surgery is not only based on size but how rapidly the aneurysm is growing. When they discovered my first one it was already dissection and I had a c-section immediately(I went straight from echo to OR) they did my surgery the next morning. My second aneurysm showed up a few weeks later and has been holding steady at 5.1cm every since. The good news is they know it's there and they will be keeping a close eye on things. *hugs*
Comment by Graeme on October 29, 2010 at 15:41
Hi Marianne

How is everything..any updates on your medication options? Let us know..

cheers

Graeme
Comment by Marianne Santamera on October 4, 2010 at 13:26
Thank you both Graeme and Richard. Feel very reassured. Will still go and see Dr Bunce even if it is just to go over my medication options. Thanks for fixing my post Graeme. I'm afraid I'm not very good with technology. It sounds like you have both been through the mill with your respective aneurysms! Hope you continue to enjoy better health. It really is comforting to know that there is somewhere to go to get really good advice. Thank you again!
Comment by Graeme on October 4, 2010 at 12:42
Marianne..

I see Richard has in his own indomitable way given you a good run through already on your symptoms and some good advice.. but he has raisd my blood pressure with his story on laying a new floor!! sheesh! very naughty! I have reformatted your blog as it had some left over html code in it from where you had it in your profile - reads a lot better now!

cheers

Graeme
Comment by Richard Deal on October 4, 2010 at 11:52
hey there marianne,
i am terribly jealous about your south american trip. next year i am off to the virunga national park in rwanda/uganda to do a bit of people spotting with some mountain gorillas but i guess the variety of people you encounter and the range of cultures (both past and present) doing south america must be a privilege and a pleasure!
anyhows, back to the subject - as i had a dissection of the ascending and descending aorta which precipitated my aortic arch aneurysm i guess i am not necessarily the best qualified person to comment. but, since my brush with death i have done a lot of research and would like to think i am "helpfully" active here.
i wouldn't worry unduly about 4.4cm - your consultant isn't and he sees them regularly. as i understand it there is sufficient elasticity in the walls of the aorta to allow it to expand to 3 times normal diameter. the issue is the pressure of blood flow coming directly out of the heart in the ascending aorta that makes people that little bit more cautious because the aorta needs to "flex" with the blood flow to reduce turbulence, and also static pressure.
hair thinning? i had terrible trouble with hair thinning (in fact it was coming out in clumps) just after my operation and the following 3-4 months, but once my body had fully recovered and acclimatised to the medication the hair started to thicken up again. you obviously aren't recovering from an operation (from what i can tell), but have you had a change in medication, or a new medication prescribed to you? maybe it is a side effect of the tablets that you need to address, or maybe your body just needs time to acclimatise to the change.
people will crucify me here when i say this, but i recently redecorated my front room which involved laying a new floor as well as re-wallpapering and whilst laying the floor i felt as if i had pulled a muscle in my stomach. i thought no more of it, but since then i have had a feeling of terrible belly ache. maybe i have managed to aneuryse my dissected abdominal aorta, maybe not... i don't think it unreasonable to assume though that you would experience discomfort similar to indigestion due to the thoracic aneurysm. second to the searing pain as the aorta dissected back in 2008 with me came an awful feeling of indigestion that also seemed to close around my wind pipe...
take your lead from your doctor though - if he doesn't look too worried and you don't think he is secretly stocking up on methadone in between appointments then i wouldn't be unduly concerned!
take care,
r

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