How many of you have aneurysms. Can you share your story or information.

Wondering if anyone is living with an aneurysm.

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Hi, Vanillatea - I have Carotid/Renal FMD and recently went through a bleeding brain tumor.... not exactly an aneurysm but much like one. In October, the doctors discovered that I have a tumor in my pituitary gland (behind the optic nerves) and the MRI indicated that it had started to hemorrhage. (Pituitary Apoplexy) I was admitted into ICU because as the doctor's put it, it is much like an aneurysm and if it had burst, results are the same. I'm currently taking a medication to shrink the tumor and it also stopped the bleed from what they can see. Recent bloodwork shows that the tumor is responding well and in April, I will have a repeat MRI.

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Hi Vanilla......I don't have any....but thought you might find this video interesting, I did. Take care.

http://www.youtube.com/watch?v=guHK0G6yK4c

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Hi
I had three dissections in the right intracerebral caratoid artery which they all closed up on their own but caused the blood to pool between the layers of the artery called a pseudoanerysm. Which the larger the anyersym became, the more narrow the artery became. The Neurosurgeon finally used a self expanding stent to keep artery open and then the blood stopped pooling and went right up through the stent. It was better result then I could have hoped for.
Kim

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Hi, yes I have aneurysms, 3 to be exact. Two in my left internal carotid artery (LICA) and one in my right external iliac (REA) artery. They are small. One in my LICA was present when I was diagnosed, it was 6mm and 7 years later it is 9mm, so it is growing very very slowly, and is stable. The other two are very small and appeared years after my initial diagnosis, both remain about 2mm and stable. I only take aspirin therapy, and have not had an incident (no TIA's, dissections or stroke), my worst symptoms are migraines and vertigo...Thank God! When I first learned of my disease and my aneurysm, I was very scared, thought "oh my God, a time bomb!", but I have learned over time that with regular testing, we can keep an eye on them and hopefully get them if they get out of hand, but for now, I am resolved to watch...wait...and pray for good health every day.
Cheryl B.

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Hi. I have a renal aneurysm that formed sometime after renal angioplasty, but it is now stented. I have a internal carotid one that is too difficult to access via angioplasty, so for now its just being monitored. I had a small aneurysms in a renal artery branch that could not be coiled or stented, that was flicking clots into my kidney, and also a small aneuryms/psuedo-aneurysm in my kidney. I was to have a nephrectomy, but that has been delayed whilst doctors investigate other options. They may completely block of the damaged section, supposedly killing it (occlusion) as it now cant be repaired, but after speaking with two doctors,this may not be the best option, and a nephrectomy may be the safest thing (apart from the fact FMD may get my other kidney)

Thankfully, many people have aneurysms that are easily repaired, or safe to leave alone. My case is not common, and treating it has been a bit tricky for doctors, given my history. When a doctor says xyz rarely happens in FMD.. I get the xyz. I have Intimal and medial FMD, bilateral ileac, carotid and renal.

I have been told its ok to live with carotid fmd, and most people with carotid fmd aneurysms dont have them repaired, because the surgery is more dangerous than leaving them. This is because FMD affects the carotids higher up than other diseases, making access difficult. If blood pressure is controlled, the risks of rupture are low, (unless it keeps growing) I have been advised not to to do any activities that involve jarring of the neck, motor bike riding, rollercoaster, bungee jumps, intense sports, weight lifting, even bike riding. Scuba diving is also out. Most of those I dont do anyway.

Where is your aneurysm?

Chris

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Hi Chris your FMD journey is very interesting. Regarding the "They may completely block of the damaged section, supposedly killing it (occlusion)" it sounds like what was done to me. They called it embolization. Unfourunately this did not work. There was a colateral artery that kept my kidney hanging on for ten years. That artery was to close to my spine so they did not want to mess with it. I then had a nephrectomy. Once I had the nephrectomy I was able to drop all but one of my b/p meds which I now take the minium amount of. For me the recovery from the nephrectomy was quick and I was out of the hospital the next day. Another person I have spoke with was out in two days.

This is the first time I have heard of ani forming from Angio. Do you have any articles on this. I find this very interesting and considering how many angio's I have had I sure would like to know more about this. Just my luck there will be another angio in my future.

I hope they are able to come up with a plan that not only works out well but that you feel comfortable with. Take care and good luck~!

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Kidneygirl, yep, tis embolisation they are discussing (just wasnt sure how many people knew what it was) I have a lot of collateral vessels already supplying the lower pole of my right kidney. 6.5 years ago I was going to have a partial nephrectomy but I fell pregnant. After I had my daughter, docs said my lower pole was working again.Turns out it was the collaterals. RE my anuerysm forming, after the angio, my radiologist said it was the first time it had happened to him in his 25+ year career. He is the head of the department and has my angio pictures to show doctors around the world how to insert renal stents! Ive had a couple of bad reactions to angioplasty, also at the femoral puncture site.

Because of my history, where my arteries seem more likely to tear (I have itimal and medial) doctors are super cautious and seem at a standstill. RE the embolisation, my old radiologist (had to change hospitals because of surgeon) said he COULD do embolisation, but would not in me. He said the artery to be emoblised is an end artery, and in theory no collaterals, BUT other vessels would supply it , thus the whole angiotensin renin cycle would continue. The number of collaterals I already have show my body does that well (not a good thing!)

My new radiologist said his main concern with embolisation is the damage it may do to the rest of my kidney. Angioplasty wont work, stent cant be put in (new damage is right next to old stent) embolisation or nephrectomy are the only options. My BP is very unstable, so cant ignore it. My kidney surgeon seems reluctant to do the surgery, as FMD has been seen in my left kidney (tho not nearly as bad as one scan showed, so probably safe) I also have so many collateral near my right kidney that surgery is riskier than normal. A partial neph was investigated, but seems even riskier than a full neph'

Every time I speak to my docs they say "your case is complex.. we are still trying to work out the safest options" Ive also been investigated for renal denervation, where the nerves near the kidney are zapped, via angio, so they stop sending messages to my brain to raise my BP. Cardiologist said no, because the risk was artery dissecting after the treatment in some people, so FMD, my stent, and history meant I was a much higher risk of damage happening.

I will come back with a link to articles re aneurysms forming. Sometimes I feel new docs or others dont believe me , as my symptoms /history are "rarely happens" I suppose some of us have to be one of the rare ones! I just happen to have a rarer version of a "rare" disease . (know that some docs now say fmd not rare)

Chris

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For onekidneygirl



http://www.hellenicjcardiol.com/archive/full_text/2008/2/2008_2_106.pdf

http://www.ncbi.nlm.nih.gov/pubmed/11958325

http://www.ncbi.nlm.nih.gov/pubmed/16363905

.

https://springerlink3.metapress.com/content/l5070547m0p14x17/resource-secur ed/?target=fulltext.html&sid=51l3zoowljrjq2xl2g2bruhz&sh=www.springerlink.c om

http://en.cnki.com.cn/Article_en/CJFDTotal-JFHL200705029.htm

http://www.uptodate.com/contents/percutaneous-interventional-procedures-in- the-patient-with-claudication/abstract/48

http://www.scribd.com/doc/48982025/17/Angioplasty-Complication-Angioplasty- Complication page 36 lists intimal tear and vessel rupture rare.. but more common I Ehlers danlos iv. I have several markers of ED, but not been tested (stretchy skin, and some hypermobile joints, as a child had severe muscle problems/floppiness, requiring intensive therapy, but no formal diagnosis) If I do have ED, it may explain why my arteries are more fragile. I know that FMD doctors are saying there is a cross over between the two, and I shall be asking my specialists about it.


So, looking at the stats, artery dissection, tear (to one or all three layers) is rare, less than 1% so I suppose not many FMD patients would of experienced it. The external layer of my artery was ok, thank goodness! It was only on one side of my artery, and hung down like a handbag.. Thankfully it was successfully stented. I have smaller aneurysms and psuedos that are just a result of FMD and hypertension.

My cardio who refused to do renal denervation said I had risk of my renal artery tearing/dissecting or aneurysm forming as a result of treating it, but that it would be more likely to happen days or weeks after the procedure. He explained that my artery walls are weak and fragile, and so more susceptible to tearing as a result of treatment. If the tear was only going to happen during treatment, I could be repaired, but in his opinion I had and increased risk of post procedure tear.

My radiologist also now treats my stenosis conservatively. I have ileac fmd, that’s been ballooned, but one time, he only partially ballooned it, as he felt I was at a higher risk of more damage if he continued.

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Thanks for sharing!

For some of us, there is so much to learn about this disease. We can learn a lot right here!
I have a small aneurysm in my coronary artery. The FMD is in my renal arteries. I have infarcts in one kidney from the stenosis. One kidney is quite a bit smaller than the other, according to the doctor who did my renal biopsy a couple of years ago. I know that the kidneys are normally hardly the same size in healthy people so some difference is to be expected, but not a lot. I read recently that these are all symptoms of FMD. I have a question about aneurysms. Can we do anything on our part to keep them from growing bigger? What is the standard treatment for small aneurysms? Observation? My initial reaction was the same as CheriQT's - shock and fear. I am so grateful for these informative posts.

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Crystalgirl:

Im sorry you have had so much trouble with your FMD. IS your bp ok? I too have had renal infarcts from stenosis.

My experience of aneurysms, is .. it depends where it is! Ive had one aneurysm repaired with a covered stent. The renal aneurysm was in danger of rupturing, and the stent was put in via an angio procedure. A smaller aneurysm, also renal was too difficult to stent, The doctor tried coiling it (they fill it with tiny coils, and so the blood doesnt enter it anymore. This procedure was not successful. This has led to further problems with my right kidney. My renal function is ok, but my kidney itself is damaged, and my BP is quite high as result.

My carotid aneurysm is too high up to access via angio (my carotid artery is also twisted and loopy, so access via angio not safe) Surgery to repair the carotid aneurysm was considered, but it was decided the risk of surgery was greater than the risk of leaving it. For now, its a matter of trying to reduce my BP, and watching the carotid. Most FMD people I know with Carotid aneurysms have been advised to watch and see.The main problem is making sure your BP is not high, as that puts extra stress on the artery.

Have the doctors given you any advice re the coronary aneurysm?

Chris

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Chris, thank you for your reply. I am sorry about your aneurysms. It seems that for many of us they are one of the nasty consequences of having FMD. Thanks for sharing. I find reading about other patients' experiences very interesting and educational.

I have not been told anything about the aneurysm, other than that there should be a follow up and that aneurysms in this location (diagonal branch) do not rupture as often as those in other coronary arteries. (Strangely, hearing this did not make me feel any better!) A nurse pointed out that I have a whole aneurysmal segment as opposed to an aneurysm. She also told me that there is a note in my file to monitor several things, including the aneurysmal segment. I was scheduled for an angioplasty last year. After the renal angiogram was done and the new images reviewed, it was decided that an angioplasty was not really needed. Can our arteries can heal themselves, at least partly? It would appear to be the case.
I have kidney damage so have to watch my blood pressure carefully. I am one of those people whose blood pressure is difficult to control. It takes a lot of medications in high doses to keep my blood pressure within an acceptable range. I have had to cut back drastically on the prescription drugs due to some kidney issues a while ago so am on an absolute minimum now. This resulted in high blood pressure of course. With an additional drug my blood pressure seems ok now.
Is it safe (as far as aneurysms go) to take aspirin? I have been told that aspirin combined with Crestor (a cholesterol drug that has been shown to reduce inflammation) should provide enough protection to keep the carotid arteries from narrowing. I have a little bit of plague there but no stenosis. Which blood thinners are commonly prescribed for people with aneurysms?

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Hi Chris i had high blood pressure all my life my oldest son was born at 28 weeks because of my blood pressure no matter what medicine the dr put me on it didnt work. when I was 26 I fell and hurt my back I had an X-ray done and the dr where I live told me he wanted an ct and then he said it was a tumor on my left kidney and he wanted to do a biopsy I refused his care and went to the Cleveland clinic after several tests the confirmed it was an aneurysm imbedded in my left kidney and it was a little larger than 5 cm and very thin on the outside wall. They performed a ten hour surgery and removed the aneurysm and cut the left kidney down in size and transplanted it into my right pelvic area and removed a vein from my leg to provide the blood flo for the kidney. I have had two c sections and an tumor on my right ovary so I have a tremendous amount of scar tissue and the scar tissue killed the transplanted kidney. Have you ever consulted with Cleveland clinic? My prob now is that I'm having stabbing paying on my left side where the left kidney was removed getting ready for another ultrasound next week. Good luck !!!

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WOw that is quite a lot you went through Kerryg97. How long ago were you diagnosed?
So wise of you to go to the CC!
Take care

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They diagnosed me in feb of 97 and surgery was April 29th 1997 but when I had my son they told me to never get pregnant again or I would die the next time but after the surgery my blood pressure went back to normal and I was able to have two more children. My worry now is I'm having stabbing pains again on that left side where they took out my kidney. have you heard of aneurysms re appearing or if it's even possible since there isn't a kidney there anymore? The stabbing was one of my symptoms with the first one but of course I was 26 at the time and blew it off as something silly.

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Hi Kerryg97, You mentioned you have been to the CC, is this where you will be going regarding your stabbing pain? I can't answer your question about ani's, but can say that FMD can be found in any artery in your body. That is why it is important that we have annual monitoring. Not that we can have every artery monitored, but we can bring up symptoms and if the doc thinks warranted they will then follow up. I will say that like you I have had a nephrectomy. I don't get any pains on that side.
Have you discussed this with your primary. Sometimes while we are all thinking FMD, the primary is thinking outside our box. Could it be a kidney stone or something else? Let us know what your doctor says. I would be most interested as we do have similar historys. On that line, like you I was told not to have another child. But back in those days there was no internet etc. I was to young to listen and the doc did not explain his concerns. So I forged ahead. While I did have pre=eclampsia again during the birth, all ended up well. I was blessed with my second son!
Take care Kerryg97~

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Thanks for the video link!

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Hi one kidney girl, I will have my ultra sound done local then if there is something else going on I will most def go back to cc I have to for anything or any surgery our local hospital will not touch me I'm too much of s risk plus I would not go any where else. Have you had you aneurysm removed?

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Hi Kerryg, so far I have not had any anni's diagnosed. I have had a kidney removed, over 15 angiopasties, carotid stenosis, stenosed messenteric and possible vetebral. I am hoping I can dodge the bullet on the the ani's!
Glad you can follow up at the CC! They really have impressed me!
Take care

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Thank you and please take care and good luck !

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Hi kerryg97,
I also had unexplained hypertension during pregnancy. Two of my sons were delivered as preemies but they did not even look for a reason. I was also told after my first son was born that I probably should not have anymore children. But like you my bp went back to normal after the pregnancy but shot back up the minute I concieved. I have lost my left kidney and have two aneurysms in my right.

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