Watching and Waiting

My 10mm aneurysm was discovered incidentally in December. I had an MRI, MRA, and then an angiogram last month. A few weeks ago, I met with Dr. Tamargo at Johns Hopkins. He said the aneurysm has probably been there for 20 years, that the wall is strong, and that I’m past the most likely age for rupture. (I’m 72.) He felt that the risk of rupture is much smaller than the risk of clipping surgery. He recommends a CTA scan in six months, and then annually after that.
I’d been quite sure that I would need clipping surgery, so I was enormously relieved to learn that I would not. Now, though, I’m trying to learn to live with the knowledge of this aneurysm. Trying not to panic at the smallest headache, not to worry that my electric toothbrush is vibrating too much and irritating the aneurysm, wishing that I’d never learned of its existence.
Does this anxiety fade over time? Are there others here who are not undergoing active treatment?

It sounds like great news to me! And a great reminder for all of us to not presume we know all the correct answers. We do have to either trust in our surgeon’s knowledge and experience or find another surgeon don’t we?

I think one way to deal with the anxiety of living with an unruptured aneurysm is to try to live life as fully as we can. Mine ruptured so I’m by no means an expert. It’s something I’ve learned here. And it’s something I try every day to do. Life’s too short as to bog it down with anxiety. Enjoy your hobbies, your friends and family, whatever brings joy to you. Perhaps take an exercise class or simply walk. Relaxation breathing is helpful for me. For headaches, I can share that the little ones aren’t a big deal, make sure you’re sleeping well, stay hydrated and eat regular meals. Reduce stressors can help as well

I’m very interested in what our members who are on the watch list with their aneurysms will add.

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Mary,

I’m no more an expert in this than you but everyone I’ve read about a stroke says that The Headache is without question 2000% the worst headache you’ve never had before in your life.

When I was waiting for surgery on my (slightly different) brain vascular condition, if I got a noticeable headache, I would take myself through the “F.A.S.T.” stroke test:

  • Does my face look uneven?
  • Can I lift my arms and keep both level?
  • Is my speech slurred / am I struggling to speak comprehensibly?
  • Yes? time to dial emergency.

The other thing I did was to get a medical wristband with my name, date of birth, medical condition, my wife’s phone no and my NHS number on it, so if anyone found me on the bus, in the street, etc. then I might get more prompt support than without it (in reality, if you find anyone in the street unwell, people will usually call an ambulance but I felt having that information could lead to quicker action and it made me relax about it a lot more).

Hope this helps,

Richard

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@MaryZPA, I’m glad to know that Dr. Tamargo is not recommending surgery for you. His follow-up plan sounds reasonable to me.

Here’s the short version of my story. :wink: I have lived with the knowledge of 3 unruptured aneurysms for more than 45 years. I had one rupture 52 years ago when clipping was the only option. My last arteriogram was 12 years ago. I had a CT scan last year. Nothing was found to have changed.

Two things that I honed in on in your post: (1) your aneurysm was discovered incidentally meaning you had no symptoms. and (2) that you’ve probably had it for 20 years. To me, it suggests that you continue to live your life as you have always done.

Try not to worry (easier said than done). This discovery is new to you so it’s understandable that you are anxious about what could happen but, your anxiety will fade over time. I do know, from personal experience, that the knowledge that you have an aneurysm will always be in the back of your mind and it will rear it’s ugly head from time to time. But, it is not different from the concerns you may have about other illnesses that you might be susceptible to because of your age, sex or family history.

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:34

I wish you the very best.

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Hi Mary, I’m also “on watch.” My aneurysm was discovered accidentally (like so many are) about two years ago. At first I really panicked. Then I went to the best neurosurgeon I could find in my region and he had me do a cerebral angiogram (this was after CT scans and MRAs). Through that we learned that the aneurysm is just outside of my brain dura (covering), so if it does burst, it will not kill me, just affect my eye to some degree and perhaps only temporarily. My husband I were so relieved we were crying. At first he had me do MRAs once a year but last year he said I could wait two years. Of course I am still nervous - what if he’s wrong? what if it bursts when I’m overseas traveling in a remote location? - etc., but I have to trust in his expertise and live my life. I consider myself lucky. Tamargo is one of the best if not THE best, so I would trust him on this. Good luck to you.

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It’s SO reassuring to hear from those of you who are also just watching. Thank you!

Thank you! I’m reassured by your story…and I’m becoming a little less anxious with each passing day.

Mary,

I’m so glad that I could help.

Carole

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Hello. I’m glad I read your post. My 2.5 mm right posterior communicating artery saccular aneurysm was also accidentally discovered about 3 years ago. I was able to dismiss it until today. Perhaps because my neurologist said the individual who read the initial film determined the tiny structure was in fact an aneurysm when my neurologist didn’t necessarily think it was but has agreed to watch it and repeat an MRA annually. This morning I had my 3rd MRA. The report indicated there has been no change, however, a woman from my doctors office called me a couple of hours ago and said my neurologist needs to talk to me because there’s been changes in the aneurysm. Well I just took a nose dive into anxiety, depression and crying and I have to sit and wallow in my misery until next Thursday. I also began researching the internet and learned I shouldn’t exercise, stress out, get angry or agitated, lift anything heavy, fly, have sex or sneeze and eliminate all fat, alcohol and caffeine. I feel devastated. I feel like my life is over and I’m going to die any day. I hope I can get myself out of this funk soon because I don’t want to have to live like this. I read the few replies and how others deal with this condition but I didn’t garner too much. Perhaps I should search for local support groups in my area.

I’m so sorry you’re having such a hard time! Remember that our imaginations can often create situations that are much, much worse than the reality of things.
I’d be careful about placing too much weight on the words from a woman in your doctor’s office. You need to hear directly from your doctor, and I think if he felt that your situation was urgent, he wouldn’t be waiting until Thursday to see you. Maybe there’s been a change, but maybe there hasn’t. You just don’t know—and your aneurysm was quite small to begin with.
Sometimes Google is our friend, and sometimes it’s not. In moments like this, I find it best to resist the temptation to use Google for my medical research. It probably IS good to try to stay calm, but my excellent neurosurgeon didn’t say a thing about avoiding sex or caffeine or sneezing. Your life isn’t over, and I’d fill the next few days with things you enjoy. You’ll know more soon and the news might be really, really good.
I’ll be thinking of you.

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Thank you for your response, kind words and suggestions and support. I’m not sure why yesterday’s MRA experience was so impactful. I am claustrophobic to begin with so need to have the test under sedation and doing so isn’t an issue for me but for whatever reason, when I walked into the test room yesterday, I kind of fell apart and anxiety took over. Perhaps being there reminded me I have this condition. Since the aneurysm was discovered, it’s been out of sight, out of mind and I rarely gave it a second thought–so I wonder why I fell apart yesterday. It could be because I just celebrated my 68th birthday and that in and of itself precipitated gloom and doom. I’m trying to hold it together. Thank you.

Hey Rachel,
Getting such a call can all be shocking to say the least and although the internet can be a great resource for a more general overview on a topic, to obtain a specific opinion on your personal situation you really need to have the consult with your neurologist, not Dr Google.

I’m not going to tell you not to go down the ‘OMG’ route with all of the stress that goes with it. If you’re anything like me I went down that road repeatedly, stressed myself (and everybody else around me) out to the maximum, by the time the surgeon’s appointment came along I’d almost convinced myself I was going to die. The waiting is never nice. The medicos told me to ‘wait and watch’. "What?? First you tell me I have a timebomb in my head tick, tick, tick… And then you tell me ‘Ohh, but don’t worry’ My worry-o-meter went from 0 to 10,000,000 in a flash and the Dr’s response is ‘Don’t worry’. Too late.

I think the best advice here it “Be Aware, Not Alarmed”. Initially, every ache, every twinge and I’m thinking ‘Is this it?’, but overtime I have learnt what is ‘normal’ (or, that is, normal for me) and what is an ‘Act Now’ and you too will learn your signs.
BUT:
In saying that, if you ever get a headache pain, like an explosion of the worst headache you’ve ever had, that is an ‘Act Now’ sign. Don’t mess around, get to a hospital. I’ve had 2 of these, the first, they did a scan, saw nothing new on the scan and sent me home. The 2nd, I waited a while, thought ‘It’ll settle…’ only it didn’t, in fact it got worse. Eventually, I went to the hospital and there was an issue and I was operated on.

At times like these just ‘…trying to hold it together…’ can be about as good as it gets. You need to get more information from the people who know, the neuro’s, before going too much further. Some people can have an annie, but it be deemed to be at a very low risk of rupture and only a qualified neuro can assess this.

We all know just how stressful all of this can be because we’ve lived it too, so come talk to us.

Merl from the Modsupport Team

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Welcome and thank you for posting! It sounds as if you’re having quite the time of it. Please let me second @MaryZPA statements, don’t believe everything your read on the internet. Please don’t “sit and wallow” it won’t do you any good and will plummet you into more despair, try focusing on something you love to do rather than the upcoming appointment.

As someone who has ruptured, half those “rules” don’t apply. Some of them are just what doctors tell everyone, i.e. caffeine limits, stress and agitation control and reduce alcohol. I am still allowed a glass or two of wine a day. I can still have sex and in fact it’s encouraged. Exercise is a must, as I love walk abouts and is highly recommended. I am also allowed to go to a gym. I have to do my stretches daily. I have the same 40 pound limit I was given the year prior to rupture when I had my lower lumbar surgery. I try to follow it but have often gone over it by many pounds. Everything in moderation is what my wonderful Neurosurgeon says after all I still need to enjoy life, Flying isn’t an issue and I recall a study about it but have cannot find it. Years ago there was a big debate here about it and the study is there. I will try to find it.

Wait until you speak to your Neurologist. Mine always wants a follow up after an image and is no big deal. There can be some angst if I have looked at the results of the images prior to my appointment. I’ve learned to just have questions written down. If the Neurologist has a question about the image, he just reaches out to my Neurosurgeon who will look at the images as well as the results, but she bases her opinion on what she sees in the images.

Try some deep breathing exercises. If you don’t know how to do relaxation breathing here’s a couple of videos from YouTube:

When we use relaxation breathing properly, our bodies fill up with oxygen and then release. This makes it virtually impossible to have tight muscles as they’re filling up with much needed oxygen. When we are stressed, we shallow breath and often a rapid shallow breathing which decreases our oxygen levels. Focus on your breathing and practice it several times a day.

We are here for you and I hope you continue to post as well as letting us know what your Neurologist has to say.

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Thank you for your response and support. I appreciate hearing from others who are dealing with this.

Rachel

Thank you so much. I appreciate your support and the relaxation techniques. I am just using this support group now although looks like I joined back in 2018 when I was first diagnosed. As I mentioned above, it was out of sight, out of mind, and never bothered me. Not sure why all of a sudden it has become this impactful. I am happy to have found this group.
Rachel

Dang it all, I cannot find the exact post where it was a pilot who said flying in pressurized cabins is safe. And I can’t find the list of medical conditions which the AMA recommends health conditions on not flying, just that aneurysms aren’t an issue. There are multitudes of topics on flying here with most members saying they flew with no issues. I believe cardio issues are more of a concern for flying. I remember the first time I flew by myself at around 15 or 16, the Airline stewardess recommend water or fruit juice, never alcohol when flying as alcohol dehydrates a person and we need to stay hydrated. I’ve followed her advice ever since and it’s always worked, even after I ruptured.

Sometimes life events cause us to think differently about our health issues. Perhaps something has happened recently in your life that has you thinking differently. Put the extra effort into thinking positive thoughts. Besides the breathing, you might try listening to some calming music. Being 61, I love folk music from the 60’s and 70’s, some jazz, a good bit of instrumentals, usually the sax or acoustic guitars. I rarely watch the news nor violent shows or movies.

I understand. I had an aneurysm rupture 16 years ago. During treatment of that, 7 more were found. I had a total of 7 clippings. 3 surgeries. One was determined to be so small and in a difficult location, and was monitored for 14 years. For whatever reason, it began to get larger when I was 69 years old, and my neurosurgeon coiled it. Prior to that, I actually had gotten used to knowing it was there, and it was monitored yearly by cat scan with contrast. Do your best not to stress, but if you’re really feeling unsure, seek a second opinion. I trust my neurosurgeon, but if I didn’t I would definitely look for another opinion.

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My neurosurgeon ok’d me for flying a couplr of months after a clipping surgery. The pnly issue I had was we had a “hard” landing, came down quite fast and the rapid change in pressure caused me some instant pain. I was rapidly OK, but it scared me!.

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Those hard landings scare me too! I’ve flown several times after I ruptured but only once by myself. It was a difficult flight for me, I’d just had my third repair a week prior and I was still having a lot of difficulty. I needed assistance to get on the plane and they forgot me. Some rather loud obnoxious teachers decided to change seats and took mine. Had to listen to their conversation belittling students from DC to Charlotte. The plane was completely filled and was loud. Charlotte folks were great getting me down to where BH could meet me. One look at me and attempt to ask how the flight was, BH went to the Airline desk and made a complaint, then wrote a letter to the Airlines. I’ve never flown by myself since😂

For my case, the doctor convinced me to get a coiling, He said that I am still young (53 years), if I am 80 years old, he will leave it. (He will watch me.)
Every surgery has a risk, for my case, it was fine but the post surgery was terrible bad, the aneurysm hit my brainstem, due to the size and bad location.

Read my fantastic true life story,
You might have some idea how to decide.
3 NEW level 3 - BE THANKFUL IN ALL YOUR SITUATION.pdf (81.5 KB)