Aortic Aneursym With Pots? Does That Confirm Eds..really Scared

[sisblostg]

I have had doctors go back and forth on EDS being the cause of my severe H-pots. I decided since my father died of an aneurysm and I had 2 cousins have uterine ruptures(many other family members with anersyms,strokes as well, I used to blame all the aneursyms on factor V leiden which we all have) to push my doctor into helping me get the blood test for vascular eds. After 8 months of paperwork issues my bloodwork was sent off in Feb. I feel like I am at a turning point with my POTS, I have been stable to do everyday stuff close to home but I really want to try and travel this summer. My blood pressure has been running higher which I thought was a good thing for my POTS symptoms (130/80 instead of 110/65). I went to a new dr to help with an exercise plan that knows a little about eds and he really wanted to know the bloodwork results before starting. Since it is taking so long he suggested a few easy screenings, echo, some other vein ultrasound studies in my arms, and an AAA.

I got a call last week that they believe I have a small artotic aneurysm. Im suppose to go for a CTA and see the dr next week. Of course the waiting feels like I have just been handed a death sentence. I'm afraid to do anything. I'm under 40 with POTS, never smoked, not overweight, normal chlosterol , and I get an aortic aneurysm. What else beside vascular eds would cause this? The closest vascular surgeon is about 4 hours away and has no eds experience. I think the all the dr.'s and tech that have seen me are kind of in shock like me and don't know what to do. I can't travel far and moving is almost impossible.

[Mytwogirlsrox]

Im sorry, this must be very stressful for you! Try not to panic, i know non-eds people get aortic aneurysms too. It just means you have a weakened spot in your aorta. I have a intra-septal aneurysm between my atrium. Have you been having symptoms related to it? pain, sob, Trouble swallowing ? How is your cholesterol? Are you on a beta blocker? What did the dr say about your BP?

There are stent sthey can place in the aorta to maintain its integrity. That might be a better option if you do have EDS

I'm sorry, I hope you can get this all worked out soon! Take care

[sisblostg]

I wish I knew if I had any symptoms from it. I have pain but that pain could be from a number of issues I already have. I did have had some BP spikes but I also have had a few infections and fevers. I have been losing my voice a lot but I also have a chronic sinus issue. H-POTS/dysautonomia has so many symptoms it is hard to tell. I am already a worrier personality type so this is very hard.

This is the first time I have seen this dr that ordered the tests. He was nice enough to look at my case(I don't like my PCP & I recently got turned down by 3 PCP's) so he just got my records and if going to go over things with me and my husband next week.

As for my blood pressure 3 doctors have been pressuring me to try and manage my pain better. Im not a pill person. I had one dr ask me to take half a pain pill at his office and after 45 minutes my BP was dropped by 30 points. I have tried so hard to find the right foods to keep much stomach moving (I have gastric empty issues) I hate to take pain pills regularly. I agreed to try 1/2 pill at bedtime.

Right now I have Clondine. I only took it as needed since with POTS I didn't like my BP to get too low. I have used labetol (sp?) in the past.

I know way too much about vascular surgery(I cant post why but I cant believe I would end up with an aneurysm given my life story). If I'm non-eds then a small aneurysm would not worry me so much. I would know exactly which hospital I would go to and even though it would be hard for our whole family situation we would make the sacrafices. With vascular EDS I would be afraid of any vascular surgery. I have seen too many diasters endings and so many regret the surgery and the families regret the surgery and wished their vascular eds loved ones passed from a rupture instead of the disaters the surgery caused.

[Katybug]

I'm sorry you've received this news. Please go to www.ednf.org. There is a wealth of information on that site regarding vascular eds and differential diagnoses. If you do have VEDS, it's not a death sentence and it's important that you have found a doctor that was smart enough to order the echo. Managing the VEDS will be important and you can find all kinds of good info on that at the above website as well. Plus you can find many other VEDSers there that can give you support if that's what you have.

[davecom]

I have a small aortic aneurysm (for a different reason - caused by the placement of my aortic stent for aortic coarctation) and I want to just be encouraging and tell you not to worry too much. As long as it's monitored and not currently causing you issues, it shouldn't affect your life greatly. Mine has stayed about the same size for 10 years. If it's annually monitored, you will be well aware before an intervention is needed (if one ever is) and one may never be... But with your background you probably are already well aware... Just wanted to say that this particular part of your situation does not necesarily need to be as bad as it may seem thinking about it.

[MomtoGiuliana]

Are only people w VEDS susceptible to this, or is anyone w EDS?

I have a friend w suspected EDS. Today she was diagnosed w aortic aneurysm. She is very concerned of course. (It's frustrating b/c her dr was very resistant to her being tested for EDS she had to pursue it on her own.)

[IceLizard]

People with any type of EDS are more susceptible to aneurysms, but they are particularly problematic for those with vascular type. There is also a lot of cross-over of symptoms between the types so sometimes it is difficult to differentiate without genetic testing.

[arizona girl]

Yes, this is my understanding too. After I had a spontaneous colon rupture along with the fact that I have family members who are very flexible, I had the genetic test done for vascular, it came back negative thankfully. I do though continue to stay aware of the possibilities. Dr. Grubb said I was mildly hypermobile, but I was not told I have EDS.

I think the best eds doc out there right now is Brad Tinkle in the chicago area. Here are some links about him, including something he calls a bookmark.

Here are the links: http://drbradtinkle.com/#home http://leftpawpress.com/books/medical

This is from a blog on last years edf conference: http://edser.weebly.com/notes-from-2013-conference

8/12/2013

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Though this talk had a focus on the Vascular Type of EDS (VEDS), Dr. Black covered vascular issues that could effect all EDSers. The types of vascular issues that are most common in EDS, especially VEDS, are aneurysm, dissection, and pseudoaneuysm. However, those with EDS can suffer from a spectrum of arterial and venous anomalies including spontaneous dissection and rupture. These issues are VASTLY under-reported in non-vascular EDS cases. According to him, much more research most be done on vascular issues in the other types of EDS. In most cases of patients with VEDS or EDS with vascular issues, an echo-cardiogram is recommended at the age of ten, and then every 5 years thereafter. If an abnormality is found on the echo, Dr. Black recommends follow-up scans every 6 months.

Dr. Black spoke a bit about a new-ish medication, celiprolol (not currently available in the US). The effect of celiprolol on prevention of cardiovasular events in VEDS has been favorable, as it seems to dilate the blood vessels of VEDS patients. However, it is only available in Canada and the EU so far.

Dr. Black does recommend a low-dose beta blocker to all patients with vascular issues. However, there are exercise implications for many patients. He suggests that patients on a beta blocker use a polar heart rate monitor if they are engaging in strenuous exercise. If the patient's baseline heart rate increases by more than 50%, the patient must stop exercise.

[DeeDee]

I have POTS and now a mild ascending aorta aneurysm. I'm wondering same. I also have vericose veins, since my first child. No HBP, No diabetes, No smoking, no drinking, however I am over weight. But I don't think that alone could do it? Maybe.... but I played sports my whole life, just mainly gained since having kids. Not sure..... how did you make out?

[Joane]

2024, I also am 40, with POTS and a small ascending aortic aneurism. Wondering what happened?

[Water Lover]

Also pointing out for this thread that EDS is not the only type of connective tissue disorder. Aortic aneurysm is one of the signs that, in someone of the “right” build (tall/skinny/long-limbed), might be suggestive of Marfan syndrome. My doctor says there’s a general connection between connective tissue disorder and dysautonomia; it’s not just limited to EDS. So there are multiple possible causes even among inherited disorders, not to mention the aneurysms that “just happen.”

[DADofPotsSon]

In our family it was my Great Grandmother, Grandmother, Dad who all had various aneurysms, all had the AAA's and also one at the heart.  In fact Dad had 3 AAA's.  All had H-EDS.  Now in current generations my youngest sister and my Son#2 all have H-EDS.  Grandmother and Son#2 had POTS at one time.  Youngest sister also had a dissection of the vertical artery in the neck she was cared for at CC.  Test were done by Dr. Grubb on Son#2 and Cleveland Clinic on my sister to make sure they did not have V-EDS and it was determined they did not.  It was said they just have H-EDS and it was an anomaly crossover.  Great Grandmother, Grandmother and Dad all lived to over age 85, in fact grandmother made it to 95, even with H-EDS, her body was shot but her mind was excellent, it was hard to see her suffer.   I am 70 and only have two joints on my body that dislocate easy and I also have Raynauds, but so far no AAA.  All who have H-EDS have low to very low blood pressure too!

DADofPotsSon