I have a family history of multiple aneurysms, so the cause of my aneurysms is obviously genetic. My SAH was in 2001, and after years of following up and treating that solo aneurysm, I recently and suddenly developed 4 more (all subsequently clipped). I want to know why this is happening. My neurosurgeons’ best guesses are polycystic kidney disease, or some kind of connective tissue disorder. But as surgeons, it’s not their place to help me find out, and their attitude is, “if you’re not having babies, why do you care, as there’s nothing to be done.” But I do care. I can’t help but think that if we can identify which disorder is at the root of my issues, then I can at least know what measures I might take to improve my quality of life, and maybe even the length of it.
I’m too old to pretend I want to have babies, so I can’t use that excuse. My insurance company does not want to cover a geneticist. I’ve recently gotten a new PCP and I have convinced her to screen me for polycystic kidney disease. I have a CT scheduled for next week to check my kidneys for cysts, so we’ll see. If that scan comes back clear, then I guess I move on to connective tissue disorders, which my PCP has indicated are going to be more difficult to push through my insurance since I don’t have the usual indicators of Ehlers-Danlos, Marfan etc.
Anyone have any experience or advice here? Am I wasting my time? Since genetic disorders are incurable anyway, should I just adopt the healthiest lifestyle I can manage and just hope for the best for the next 30 years? Or should I continue to advocate for myself and fight to find the cause? Different disorders are going to have different life expectancies and outcomes, and frankly, I’d like to know if I should be putting money into my IRA or taking it out. I don’t think that’s unreasonable. I’m open to everyone’s experiences, opinions, whatever. Thanks in advance; I really appreciate you all.
I don’t know all the answers to your questions @mgm. I do know that last year was one of the most physically painful and emotionally draining of my life, I could barely walk, my rib cage felt like the muscles were being ripped off the ribs. Had to take chores in 15 minute intervals with at least an hour between the next attempt. My wonderful PCP wanted an upper GI, sent me to a dermatologist at the same time and a Urologist. I had so many tests that I didn’t know existed, it was a bit overwhelming. She sent requests to two different GI’s, the one I got when I turned 50 and one at WFBH. She said who ever can see you first go, don’t wait for yours as it would have been 2-3 months. The ultrasound result was possible cancer. All the GI tests done showed I had an “amazingly healthy upper GI tract for someone my age”. Dr. Rejeski suggested I say something to the PA at the dermatologist, biopsy performed and I do have a Connective Tissue Disorder and now a wonderful Rheumatologist. She started the battery of blood tests and determined I have Dermatomyositis. It took a bit of work on her part, I call her Sherlock LOL
We have to be our own advocate in my opinion. If not ourselves, then who? I am lucky in that the Medicare plan I have allowed all the testing that needed to be done. Some did need pre-approval, but whoever wrote the requests must have explained them well, is all I can think. The one thing they are all agreeing on is that the Dermatomyositis didn’t cause the aneurysm, but I’ve read that Connective Tissue Disorders can.
Hang in there,
Thank you, @Moltroub. I’m sorry you’ve had such a crummy year health-wise; hopefully with your new knowledge you can (have) found some therapies that help. Thanks for your encouragement for advocating for myself. Like many, I was raised in a “don’t question the doctor” kind of family, so it’s an uncomfortable thing for me to do. However, if I’m honest, I would go toe-to-toe with any physician if the well-being of one of my loved ones was in question, so I’m learning how to do that for myself too. I know a PCP can’t know everything (is why we have specialists), but I’m always surprised when they are clueless. Actually, that’s not true. I’m surprised when, if I ask about something specific, they just dismiss me. I always hope that, once I leave they’ll turn around and google what I’ve told them, but it sure doesn’t seem like it. I had a PCP a few years back (was a replacement doc I got by default when mine left town), who would only take me seriously if I took my husband to my appointments and the doctor could confirm everything I said with my husband to make sure I wasn’t “exaggerating.” It was demeaning and infuriating, and he didn’t last long (the doc, not my husband!).
I’m glad to hear that you have an understanding and willing group of doctors who treat you like a human and not a hypochondriac! I’ve been looking for a doctor like that for 2 decades now and your story gives me hope. My new PCP (we recently moved states) claims she is going to help me, but it’s already clear I’m going to have to spoon feed her suggestions to get what I need. I can work that way if it gets the job done. But, for better or for worse, I am now on a MISSION to find out what might be causing me to rapidly form cerebral aneurysms and why I always feel so lousy. I’m not giving up.
I appreciate your support and really hope that your recent answers lead to a path of feeling much better on a daily basis. Hang in there yourself, and thanks.
Have you looked at any of the conditions within the ehlers dances family, you might find that
this connective tissue disorder holds the key to your enquiry. Regards H
@mgm you’re more than welcome! The PCP I had when I ruptured was quite opposite of the one I have now. He too thought I was another female with “complainer complaints” as my mom would put it. It didn’t matter that I had to have foot surgery, nor back surgery to understand the level of pain I was having. After my rupture when I had to take BH in as I couldn’t drive, he actually said to us “well I guess you do have a high tolerance to pain and must’ve had a lot of it”. There’s a word I learned here in the South that I can’t write here but it fits my feelings perfectly, think Richard Cranium. I’ve not always had the best of doctors for me, I like ones that are straight forward and don’t mince words. I love it when they say “I don’t know” all my doctors are like that now and I think they’re all keepers!
I believe @Helen_S got spell checked incorrectly. This is what I think she was trying to spell https://www.ehlers-danlos.com/
See if your PCP will refer you to a Rheumatologist maybe they can help. Also try not to diagnose yourself, unless you have a doctor in the family or a plethora of knowledge in the medical fields, we can more often misdiagnose ourselves than a doctor.
Yes, I hadn’t noticed that I had been corrected so thank you Moltroub.
Spell check gets me all the time Ms. Helen!
Thanks, @Moltroub for the reminder not to diagnose myself. I totally need to be reminded of that from time to time. As I’m sure you can relate, I’ve been on my own with my issues for so long I sometimes forget that there is competent professional help out there. Don’t get me wrong, I love my surgeons, but they’re not really into the “whys” of my aneurysms, just the fixing of them. As for Ehlers-Danlos, I don’t possess any of the physical manifestations that typically indicate ED, except for multiple aneurysms, and as a result it’s been difficult to get a referral. I’m working on getting a referral to a rheumatologist though. I did get a referral last fall to a geneticist, but my insurance was like, “no way.” I suspect they’ll be more willing to accept a rheumatological referral than a genetic one. In the meantime, the mission continues! Thanks for your support and for everything you do for this site. I’m so glad I finally found you all.
PS - I live in the south now, but am originally from the Midwest. We always referred to a “Richard Cranium” as “Ricky Cabeza” even though none of us spoke Spanish! lol
@mgm its funny that y’all had a word for it as well!
My Neurosurgeon told us after my rupture, they don’t really know why there’s weakness in blood vessels. She is trying to do some genetic research on them the last I spoke to her in December. Funding is difficult to obtain. I think even the surgeons would like to know a definitive answer, but medical science just hasn’t progressed that far, yet. Being the curious soul I am, I would like to see the answer before I’m on the other side of the grass.
As I’ve replied to others previously, I tend to lean towards the head trauma theory. That’s simply because I have had quite a few knocks on the head starting when I was 13 months old. For me, the other theories just don’t correlate - smoking, cocaine use, high blood pressure, etc. I think if they did, more folks would have aneurysms. No one in my family has ever had an aneurysm that I know of. My parents couldn’t recall any either, so that covers over 100 years, given my grandparents on both sides were born in the 1890’s. My Rheumatologist doesn’t see a correlation between my Dermatomyositis and my aneurysm. Yes, I asked, even before she knew what I had. LOL. For me, going down that rabbit hole in the search of why is not a high priority, there are many more things that I want to focus my energy on. What I do each year is write to my Congressman and Senators asking for their vote for Brain Aneurysm research funding/awareness. We used to go up to D.C. and join Lobby Day. Although important to keep the politicians aware, it feels like knocking your head on a brick wall. I wonder if it wouldn’t be better to get the almost ¼ million signatures and send it to the President, bypassing Congress. The BAF usually posts both the House and Senate Bills on their website. I would suggest everyone in the States write to their politicians with the correct numbers urging them to vote in favor.
The South is beautiful this time of year, if you ignore the pollen!
Thank you for the kind words for myself and our group, I think they’re wonderful myself!
All the best