Folloup after pipline embolization

Hello everyone, I recently had my 3 week followup after pipeline embolization for nonruptured aneurysm. I must admit I was kinof confused my nuerosurgeon said I have no restrictions, including no lifting or weight restrictions, and can fly in a plane anywhere I want. He also stated my followup CT angiogram will be from 6 months to a year. Kindly provide me your experiences. I am still feeling overand anxious, not certain if it is related to the Plavix and aspirin, or that my emotions can now focus on it’s time to getting back to normal after being dx back in February. From February till after I survived surgery,
I felt I was in denial and just going with the flow and strictly following doctors orders. Please provide me your thoughts and support. I am confused.

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Great news! For someone with a lot of restrictions, that are never too closely followed, I’m excited to read when someone doesn’t have any! I have never had restrictions on flying. Jets are pressurized, small planes to my knowledge don’t go high enough but @Pilotpacking knows a heck of a lot more about planes than I ever will.

This is the site I found for Plavix side effects

Plavix Side Effects: Common, Severe, Long Term. How long does your surgeon want you on it? Most of us that have had a stent of some type are on aspirin for the rest of our lives, but not the plavix.

This is the one for aspirin

Both indicate there’s no known incidents of anxiety

I also found this study which probably explains why he doesn’t need to see you for awhile

https://www.ahajournals.org/doi/10.1161/SVIN.121.000292

I am a bit surprised that you have no weight limits, though it could be because your level of activity and what doctors think that people in our age group do or don’t do, could be a gender thing as well. I had my stent placed when Dr. Quintero-Wolfe asked if I was moving cinder block. Relocating one at a time is tiresome and awkward, much easier for me to carry one in each hand🤣 My weight limit is by far the hardest for me to follow, I guess she just took time to figure that one out. But it could be that he feels your pipeline is very secure and that’s a great thing!

Sometimes when we over stress things in our lives it can be befuddling when that stress isn’t part of us anymore. Some may actually miss the stress, whilst others are quick to accept that it’s gone, it’s dependent on the individual. Do you like stress or not?

I’ve always had an angiogram 6 months after a “repair”, it may be because I ruptured. I don’t have to have one anymore unless it’s to save my life. I’m happy with that decision. Sometimes the MRI/A can tell a surgeon all they need to know. Did you have one before you met with your surgeon again? We have had many members who have some type of procedure once. When they see their surgeon for a follow up, they’re told they’re good to go and they don’t ever have to have anything else. Perhaps you lucked out and got in that ship! Not being a doctor, I don’t know what parameters they look at for us to receive that good news. Personally, I’d take it and run without ever looking back.

Perhaps your anxiety is because of your family history and that has caused some lingering worries. By now, you know I always recommend some type of relaxation breathing as it’s incredibly helpful. The caveat is one has to practice it all the time, every day until its a part of you like tying your shoes. Also with weather improving take some walks. Depending where you reside in NY, you may have access to sidewalks, parks or a mountain hike. Take advantage of things in your area to get outside and get some exercise. Exercise is as helpful dealing with stress as breathing.

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Thank you for your support.

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The big question is what are your plans now Christine? Are you planning on a big vacation?

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I am going to move on with my life and yes,plan a vacation and return to work. This who situation definitely consumed my life since early February. Thank you for the referenced articles/ studies. I feel better today than last week.

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Hi @My2024
You are a lucky girl to have your aneurysm found and treated before it ruptured. I wasn’t that lucky……but I’m fine now, you can read more in my profile. I remember that someone in one forum had posted what her neurosurgeon had said to her “don’t let an aneurysm that is successfully treated dictate your life “
This is sometimes easier said than done, but I think this a good rule to follow.
Just be a little bit cautious as you still are on both Plavix and Aspirin. Your neurosurgeon will likely stop the Plavix after the six months follow up.
I wish you all the best.

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Thank you very much for your comments and support. I am very grateful they found my aneurysm. As every day goes by I am feeling better emotionally and physically. It was a traumatic experience, not like yours, but a shock to my life plans when I was 1st dx. Yes the neurosurgeon plans to take me off the plavix and Aspirin after 6 months. I guess his statement of NO restrictions after being on restrictions for months really shocked me.

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I’m doing my happy dance for you! I get how something can consume us, seemingly body and soul. I think you will continue feeling better and once you’ve gone on a vacation and returned to work, it will even be better. Glad the articles helped. Remember we are here whenever you need us!

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Hi @My2024 I had a WEB embolization done the end of February. I was only required to take baby aspirin for 1 month. I also was told absolutely no restrictions. I flew home 2 days after the surgery and I have a follow up CT angiogram at 6 months. I had a couple different opinions before I made my choice on where and who I wanted to be my doctor for the repair. Through the opinions I received, reading numerous other experiences, and now my own experience - it appears that different doctors prefer different follows ups with the main difference being (1) stay in plavix for awhile - some not t all (2) some are on aspirin for life - some for a short time - (3) and some (like me) are only on baby aspirin for 30 days. The other difference I have found is that some doctors prefer to do a 6 month angiogram and some do a 6 month CT angiogram. I am assuming it has a lot to do with location and size - and sometimes just doctor preference. Listen to your doctor and follow the advice given. Enjoy the peace of knowing your aneurysm has been fixed - and most of all enjoy your life. I haven’t had any complications since my surgery. I have flown numerous times. For the most part I rarely think about my aneurysm anymore ( it consumed my thoughts prior to surgery). I’ll go for my 6 month CT in August with the confidence all is well and if it’s not I’ll deal with it then (but I am really not expecting any issue). Enjoy your life !!

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Thank you so much for your story. It makes me feel so much better hearing the details and that you are doing well. For my location, he said if I missed 2 days in a row Aspirin 325mg and my Plavix 75mg , I possibly could have a stroke. I am very pleased to hear you had no issues with flying and that you too were consumed over the aneurysm ( prior to treatment). Validation of my my concerns and feelings really reassures me. Currently, I am not as consumed, and getting better day by day. I have returned to gym and planned a vacation. Thanks again

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Hi Christine,

Two things I noticed from your post: You’re feeling anxious and confused. These are emotions that the brilliant neurosurgeons who save our lives don’t address. The amazing doctors do the work they studied and trained to do (thank goodness), give you the medical advice you need in order not to undo anything they’ve done, then send you on your way until it’s time for your next follow-up.

For what it’s worth, I experienced the same (or similar) anxiety and confusion you describe following the coiling of a double bisecting aneurysm in my cerebellum in 2015, another in 2018, and in 2020 the diagnosis of two 2 mm aneurysms in the same place that are inoperable. Here is what I’ve learned:

Real information online is limited. I’m actually a person who is being written about in textbooks, so I know how these things work. Places like WebMD, Mayo Clinic, HealthLine etc., will report the physical symptoms as they are most recently known, but most of them (that I’ve seen) will say there are no symptoms of aneurysm. I’m here to tell you this isn’t true. I had symptoms a good two weeks before and I would say many of the people in this group who have non-ruptured aneurysms might say the same.

I mention all of this because the only place you might find mention of your post-op symptoms online are in discussion groups where people are talking about their real-life experiences. This a great place to come to for comfort and advice. It is more reliable (IMHO) than a space like Reddit or even Quora, where you’re never quite sure who you might be hearing from.

And so, re: anxiety and confusion (and other emotions as I think I’ve mentioned in previous posts) following aneurysm, please take a step back and consider everything you’ve just been through. Someone has been INSIDE your brain. You will never be the same. Trust me. No one who hasn’t experienced what you have will ever truly understand. It’s easy to feel isolated and alone, even when people you love surround you with love and support.

You’re anxious and confused because, despite what the doctors tell you, you’re not quite sure what your invaded brain can tolerate, and that makes you afraid. Trust what they tell you, but also listen to your body…and to your heart. Don’t push yourself. I went back to work too soon, and it was a disaster. I did this because ON THE OUTSIDE I was fine. But on the inside, I hadn’t processed everything I’d gone through, from the very real possibility of dying to–oh, hey, we went into your brain, fixed everything and no you’re good to go. Wait–what?

Honor what you’ve been through. Give yourself time to grieve who you were, because on the other side you are different. Sorry, it may take months or years to realize, but it’s the truth. Brain aneurysms change you–in subtle ways, maybe, but they do. It took me a long time to figure this out, to accept it and to understand. My personality didn’t change completely, it just…shifted a bit.

Perhaps you believe none of this applies to you and you are simply confused by your doctor’s instructions, and his medication advice. If so, my apologies. But any time I see a recent post-op post mention these certain emotions, like confusion and anxiety, I sense there is more triggering them than uncertainty about doctor’s advice.

I wish you well in your journey ahead. Recovery takes some time. Please don’t rush it, and be kind to yourself as you go.

Kelly

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I absolutely :100: can relate to your statements. I agree he is a brilliant neurosurgeon and excellent with his skills. I actually phoned his office the other day to express, why aren’t you addressing my anxiety? ( mind you I was speaking to the clerk). She then referred me to tge Medical assistant with minimal medical experience who likely became one with a 3 month course). She also did not care, nor did she say she will tell the surgeon abbout my anxiety, she well it’slikely the plavix and aspirin. This is very upsetting. In the past there were RNs with medical background, if not a neuro specialty answering the phones of the neurosurgeon surgeon. A friend of mine, a RN had the pipeline procedure in another hospital in NYC earlier this year, he was provided anxiety meds and pain meds for at least 2 months. I agree :100: with all of your statements and still feel anxious after a month, and what now moving forward I wonder will this anxiety subside? Also since I am experiencing palpitations I will be seeing a cardiologist. I know it is anxiety, but my Primary Care Physician heard irregular heart beats. I am glad you posted this message, it is extremely validating.

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If you call your Neurosurgeon again and they give you the CMA, tell them you want to speak with either the NP or PA, don’t settle for less.

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I actually asked to speak with Nurse manager/ office manager (after my 6th phone call),she went silent on phone, I stated" oh, so there isn’t" or you won’t transfer me? Very frustrating. I sent an email, but I have a feeling the CMA, and office assistants screen them. At this point I will find another provider to address my anxiety and any other issues that may arise. I will only return to Neurosurgeon for my followup CT angiogram within a year.

It’s frustrating to have someone who can’t or won’t listen to us. My surgeon had a NP who was a nitwit. She didn’t hire the nitwit, the hospital CMO or someone, got rid of her wonderful PA and dropped nitwit in her lap. To me, she didn’t give a mouse’s donkey about anything. One time I called the triage RN, who was really worried about me, my regular triage RN was having a baby. She called the NP and then called me back as promised. She was more than upset because nitwit blew her off. She told me to call the desk and ask for my surgeon. What I told the desk was something like “I no play with nitwit no more”. She got me an appointment the next day with another NP. Had my rules taught to me again, nitwit had changed them. My follow up was a couple weeks away and when I saw Dr. Q-W, no nitwit! Ms. Ryann was starting the next day so I didn’t get to meet her for a month or two. Ms. Ryann taught me how to use my patient portal right there in her office. I also learned from her that if you send a message to your surgeon three things happen - it becomes part of your medical record, the PA or NP in my case reads the message to your surgeon and then discusses it with your surgeon. If it’s something Ms Ryann can answer, she does but she always lets me know she discussed it with Dr. Q-W. If it’s something only Dr. Q-W can answer, Ms. Ryann will either let me know what Dr. Q-W said or Dr.Q-W answers directly. My surgeon is with a teaching hospital so besides the surgeries, she has to teach classes, do rounds etc. I find the portal to be much better as I can go back and reread in case I forget. The only time I see a CMA is when I first go in for an appointment and they take my vitals. If you have a portal, try that.

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The PA /NP finally called me today after 3 messages on her portal. Bad thing is the clerks do screen the portal emails. Lasy week the clerk answered the email portal Isent to PA/ NP, writing brusing is a part of yaking plavix ( that’s it).the pa/ np ordered new labs, and advised being tired and not being able to do as prior is likely from the ASA & plavix combo, and I need to take it easy. I told her I was glad she called me back as I was getting frustrated with the Med assist. My call was focused on me rather than “the nitwit”. Once again thank you for your candid input, you made me laugh, as well as validated me once again.

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Look at @oct20 posts, she shared a test that can be done when someone is taking Plavix. I can’t remember the name but perhaps she’ll come and say it again here. Maybe your PCP can do the test if you’re not getting better. I couldn’t tolerate it and was taken off pretty quickly. But was not given the other medication that she mentioned nor the blood test. Make sure you’re staying hydrated, after every angiogram I’ve had I was told to drink 3 bottles of Gatorade, the 32 ounce I think they are, they used to be $1, probably $2 or $3 now, plus twice that in water. I had to do that for a full 3 months, sometimes longer and make sure you’re getting at least 90 gms of protein a day. I can’t tell members enough how helpful those two things are. They certainly help me with fatigue and processing information. It’s like magic for our brains!

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@Moltroub @My2024
Here comes information about the blood test for Plavix. We all have different genes and we react differently to the drug. We found out that I was a hyper- responder! If I remember correctly I could only take 25 mg every third day! The standard dose is 75 mg! There are people that have a different genetic code so they can be resistant to the drug.
Test results are in P2Y12 reaction units (PRU).
I was told that the protocol for Plavix was to monitor the effectiveness until they had found the proper dose, it was more often to begin with and then only once a month if I remember right. It’s not affected by eating veggies, the only thing is that grapefruit should be avoided.
A standard blood count is often wanted to check for any signs of bleeding.
I hope this answer helps.

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Yes it does! Thank you so very much. So one question, the specific blood work up should include the PRU?

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I don’t know the answer to this. But the PRU levels are what they use to tell us how much of the drug we need to take. Some people need more than others.
I remember when they found out that my PRU levels were extremely off chart I, 10 minutes after we left the hospital, the Pharmacist called me and asked me how I felt, if I was bleeding or bruising and I had to stop the Plavix for several days and then she told me to take 25mg three times a week. When I asked her how it could happen if I had eaten anything that was interacting she told me that this is a genetic thing and this is why they want to check the levels. More often in the beginning and when they have found the proper dose it will not change. It is different from for example Warfarin where you need to test regularly and depending on what you are eating, the levels will change.

The PRU is a very special blood test, it has to be analyzed immediately after it has been taken.
A regular blood count is more a check if we have a low blood count= if we are bleeding etc.
I think they checked the blood count from time to time, but I don’t remember how often.
When I was on both Plavix and the high dose of Aspirin I got hematomas on my toes, I was walking 2-3 miles in the neighborhood several times a week.

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