Well that didn't go as planned advice appreciated

So 1.5 years ago we found an incidental aneurysm that was 2.5mm. We left it alone and planned to scan once in a blue moon. So last Friday (8 days ago) I tried to make an urgent care visit for lightheadedness type issues, and they made me go to the er instead. My CT showed that my aneurysm was then 5.5mm. The ER gave me a referral out to neurointerventional. So yesterday, Friday, one week from finding out, I came to this hospital to have a combo angiogram and coil embolization as they didnt want to wait very long as its unstable with its growth rate. They got the angiogram done, and bailed on the coil embolization deeming it too complex and not a good fit. So in 3-4 weeks I will be having it clipped instead. This is currently a bit hellish to recover from (lots of bleeding and bruising everywhere from the blood thinners I was placed on and a very sore groin that has alot of bruising, a raw throat from the breathing tube and mouth and throat hemmorages) and I didnt even have anything done so I feel like I’m in for hell and plainly put I’m petrified. It took alot to get myself to go in for this plnned surgery and to wake up and realize it wasn’t even able to be done and that I need to go again but for a more drastic version was heartbreaking. Im looking for any advice and previous experiences from those who had clipping done. What helpes you get through, what was recovery like etc. Just want to go forward knowing what im getting into. Thanks in advance.


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Darn!

I’m kind of surprised you’re on blood thinners. To some extent, it feels like those might be giving you the worse part of your experience. I assume the thinners were to do with stenting or coiling.

I can’t tell you that a craniotomy is less scary than an embolisation because I think we all agree that it is more scary. However, what we can attest is that there are a whole bunch of people here who have gone through it and come out the other side. I also justify to myself from time to time that if there was ever a time to try out brain surgery, today is better than 10 years ago is better than 20 years ago. The technology and capabilities that the hospital have to look after you well are better than they have ever been. You’ll be in great hands.

We can cheer you on from the sidelines, too. If that helps.

With you all the way,

Richard

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You JUST had this done, so you are bound to feel a little beat up. In a couple of days you’ll feel a lot better. I’m so sorry about the sudden change to clipping. You have a lot happening very fast. I personally think that’s probably for the best. Mine were all endovascular, but the quickly scheduled ones were best. One that I was able to take my time and choose a date ended up like its own horrible form of torture just looming ahead of me. I can’t give you advice on the clipping, but i can wish you the best. I’m sure others can give some advice and encouragement.

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The blood thinners were in anticipation of the failed coiling i assume. Im off of them now. Not sure if I’ll be on them again for the clipping or not. Hard to believe im recovering just from an angiogram currently and didn’t even have the coiling. I feel like hell and look like i just got out of an abusive relationship😅 doesn’t give me alot of confidence about handling the upcoming brain surgery😕

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Honestly, blood thinners make you look like that. I’ve had an embolisation and two angiograms. I came away from the embolisation looking a bit similar but with thinners going on as well, it’s not surprising you look so colourful!

I wouldn’t expect you to be on thinners for the clipping: in general, thinners are to be avoided when you have a bleed risk: but would make sense for a stent. I’m not very familiar with aneurysm procedures, so could be wrong.

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That would make sense to me, but I could be wrong also. They were anticipating the possible use of a stent during the coiling, so of course trying to manage the dual risks of both clots from stenting and needing to do the procedure to prevent bleeding out into the brain in the 1st place. I’m glad I am off of them now because its scary to be on them knowing the surgery wasnt able to be done and knowing if you happen to rupture its going to make your survival odds lower. So for a day and a half while I was bleeding easy etc waiting for the blood thinners to wear off I was just praying for the anuerysm to not give me any issues😅 I go back to work tomorrow and I’m trying to just roll with everything until the other surgery happens but its apparently easier said than done.

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Keep busy. Find something to keep your mind occupied. Like I said in the other thread, I started a project to try to stay distracted. It kind of worked but I had to wait 5 months from consultation to embolisation and that’s quite a while to not think about stuff.

If I can get through stuff like this, so can you! Honest.

Best wishes,

Richard

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@Mnmandy
It must have been a terrible experience waking up and get to know that it couldn’t be done. I remember when I agreed to have my second surgery after the rupture, I was supposed to have a stent and more coils, the Physician Assistant told me when we talked it over, that she wanted me to know that my neurosurgeon never took any risks during the surgery, if he thought it was too complicated with his initial plan, he would stop.
I actually think this is a very professional approach.
Your neurosurgeon did the same thing for you.
The blood thinners makes you look like that, it’s a scary sight. It has nothing to do with the skills of the doctor. I also looked terrible in my mouth and had a sore throat as you also described. It was from the combination of the breathing tube and the blood thinners. It went away after a week or so.
Try to get yourself some rest and heal the groin, it might be sore for a while. Prepare for the next surgery, make sure you have your home in order, meals ready in the freezer and everything else you might need for some weeks and someone to stay with you for a while.
As @DickD mentioned, we have many members of our site that has had a craniotomy, I’m sure you can find them if you want. It’s good that you are off the blood thinners and the body needs a couple of weeks to restore the platelet function, that’s why you have to wait a little bit more.
Hopefully this will be just a bad memory in a while and you don’t have to worry about the aneurysm. It’s good that they caught it before it got worse and might rupture.
All the best to you. We are here for you.

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Thank you…this helped alot!

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Thank you Dick. I’m so glad to have found this site. The support from others who have or are going through this means everything.

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Thank you for sharing, this site is a great resource. I have found it very helpful and comforting. I had my Annie clipped eight years ago. Prior to surgery my husband did a lot of research and found an article written by a nurse who worked with neurology patients. It was very descriptive of what a patient goes through and deals with and at first frightened me. Once I had the surgery I was so thankful for having read that article. It had described how you would look after surgery (which was like someone took a baseball bat to your face) and how you would feel for awhile. She was on point and it made my experience much less frightened when I woke up and saw myself. It was only temporary and I even look back at the pictures from time to time to see how blessed I am. It’s a rough road at first but with prayer and support it was worth it. I can’t really remember much pain (thank God) but I feel better now that I don’t have to worry as much about my Annie. I will say a prayer for you and wish you well. All the best to you.
Jj

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Hi Mmandy,

I did have a craniotomy in July 2022. I can just imagine how hard it is to switch gears from thinking it will be endovascular to full on surgery. But I’m here to tell you (strangely) that it wasn’t that bad a recovery!

I had one aneurysm rupture last July but when they scanned me they found two more that had not ruptured. They first coiled the one that ruptured at the back of my head.
Then came decision time: the one that ruptured had a “sister” annie right next to it at the back of my head. And I had a third one at the front, a right MCA aneurysm.
My surgeon explained that the front right one needed to be clipped and would require a craniotomy. The second one at the back would need a coil and a stent.
Because the coil and stent would require me to be on blood thinners, they opted to do the full craniotomy at the front first because a clip would not require blood thinners and they didn’t want me on thinners for the craniotomy.
As others have described I woke up from the craniotomy with a black eye (my surgeon warned me about this) and a sore jaw (they had to cut through some of my jaw muscle I believe). With all that, I was amazed at how well I felt overall. I’m sure the painkillers may have helped. But I truly think you will not find it as bad as it sounds. They have such amazing technology (I’m in canada and my surgeon trained at Stanford). The healing has gone beautifully.
The absolute worst part of my experience was waiting for the third coiling-stenting procedure. Only because I kept getting bumped for more urgent matters (understandably). The better I felt the more I had energy to worry so the last 2 weeks were very hard on me.
But if I had to do it again I would. I hope this story helps you feel a bit better about it. Nobody wants to go through this but I can tell you that the odds are in your favour now that they’ve identified the problem and made a plan.
Best of luck to you and let us know how it goes! :two_hearts::two_hearts::two_hearts:

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Thanks for telling me, it is reassuring to hear that some people find it easier than they anticipated. Currently trying to stay positive and find ways to pass the time and of course praying it doesnt decide to rupture between now and surgery since we know it’s unstable and fast growing its hard not to worry about, but im doing my best. I go back to work today which is also a bit scary. I think the normalcy will be good in ways, but I’m also still feeling sore and tired from the procedure we just did, and mentally stuggling some which makes working a bit difficult in its own right. One foot in front of the other is the only way through, so I’m focusing on doing just to the best of my ability.

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Yes— most of your battle between now and the procedure will be a mental one. By that I mean, I was in a different position because I had a rupture and was already dealing with that so a craniotomy seemed less of a big deal, if you catch my drift. In a way it’s harder to know you have this and a few weeks yet until your procedure. The waiting and thinking is the hardest part.

I can tell you with certainty you do not want a rupture so having the surgery is a good plan. And that getting this addressed is the best choice. In the meantime, yes try to distract yourself, work may help with that. Try to keep your overall stress down if you can (easier said than done) and just try to trust that it will all be ok. Takes faith. I’m rooting for you and I’m sure many members feel the same way. Good luck!!

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Hi mnmandy,

Congratulations on finding this support website! And as hard as it is to realize at this point, some day you may look back at that day you presented to urgent care with lightheadedness as one of the luckiest days of your life! It’s all a matter of your perspective.

Here are a few things you can be thankful for and actually rejoice about:

  1. Your aneurysm was discovered intact; it did not rupture.
  2. You had excellent presence of mind to go to urgent care when you did. Most people would have ignored lightheadedness.
  3. You had someone smart working at urgent care the day you were there. Unfortunately, not everyone is seen by someone astute enough to realize you should be referred out immediately. Some patients are told to take aspirin and go home to rest.
  4. You found this support website, which will provide you with invaluable support for your life-long aneurysm experience ahead.

Over 12 years ago, I went in for coiling of an unruptured brain annie. Like you, my Annie was determined to be not suitable for coiling so I had to schedule a clipping with craniotomy. I used the lead time to:

  1. Be thankful mine had not ruptured. Several other family members of mine were not that fortunate.
  2. Learn about my neurosurgeon’s qualifications and decide whether to get another opinion.
  3. Educate myself on my diagnosis and upcoming surgery. Back then, this website did not exist so I had no one with whom I could connect for Q & A. I watched some similar neurosurgery of aneurysm clippings and craniotomies on YouTube (not recommended for everyone, but watching surgeries does not bother me). There was only one book on brain aneurysm surgery experience available at that time; I got it and read it.
  4. Prepare my bedroom for post-op recovery. This included having draperies installed with blackout lining because I learned I’d be hypersensitive to light. Good decision.
  5. Work diligently on my spiritual condition because that’s what matters most in the long term to all of us; only those without life-threatening diagnoses are not fortunate enough to have such a tangible wake-up call.

Praying for you and your medical team that all will go smoothly and according to plan for you from here forward. :pray::heart:

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Greetings my dear!

I am sorry that you have to go through this… I had clipping done on Nov. 16th/ 2018. My aneurysm burst just like that…didn’t know that it was there.
All went well with the procedure. I was hospitalized for 11 days. I am sure that your 4 beautiful kids will help you go through this process because my family surely played an important role in my recovery.
I have been living a completely normal life since my craniotomy. I get light headaches often, I need some Tylenol here and there but in general things are pretty okay.

Let me know if you have questions.

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MnMandy,
Sounds similar to my situation but no coiling. Due to extremely high BP & location of 5mm aneurysm, Dr. recommended to place stent asap. He described it as a routine procedure but I was not told about the emotional roller coaster of having to deal with waiting & post procedure. Just be kind to yourself & allow for plenty (which varies) of time to heal and relax. I rushed back to work too soon multiple times and ended up in the ER again. After 2.5 yrs, I’m not the same physically nor emotionally and that was hard to deal with. I switched medical plans and got lots of help for anxiety & depression. The best part of this ordeal was hearing from others from this website (everyone was/is incredibly helpful). The people here understand & they gave me sound advice that medical staff didn’t give me. I am still learning to be kind to myself and be more patient. We support you & are with you. Best wishes! Ben

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Mnmandy,
I had a brain aneurysm with the clip on 12-27-1997 in Houston, Texas. As soon as the Doctors decided what it was I was rolled into surgery. Surgery was about 8 hrs. long. After surgery I was in ICU for 5 days and 5 days in a private room. Then my wife took me home.
My biggest problem after surgery “for me” was speaking. But after 6 weeks of speech therapy, the words coming out of my mouth started to be in place and make since. After almost 25 years ago, I occasionally use the wrong word in a sentence. But like I said, occasionally.
The other problem was, I knew who they were but, I couldn’t remember my Wife’s name or my two Daughters for about a year, It finally came back. But I still have some problems with names of people. But it’s Okay. I am still here.
I went back to work about two months later and it all worked out for the good. I have no regrets.
Everybody reacts differently from this type surgery, but my advice from my experience is just don’t worry, it will all work out. You don’t need to add any stress.
One year later after my surgery, I was Saved and Baptized and it all worked out for the good.

Prayers your way ,

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Hi,

I’m sorry to hear your experience has been painful, disappointing, and scary so far. It certainly is not an easy thing to go through.

I had clippings for 3 unruptured annies at 43, which is 9 yrs ago.

Everyone’s experience will vary. And, we cannot know before surgery exactly how it will be after. The advantage of clipping is that when the aneurysms are clipped, they are gone forever, which is not always true of coiling.

Some people resume life as normal after their clipping surgery recovery. As for me (homeschooling kids ages 5, 7, 10 when I had my surgery), I wasn’t working outside the home, recovery was rocky, physically, mentally, emotionally. And, I had to get used to a new normal, if you know what I mean. I am still sensitive to light, loud sounds, and need medicine for sleep. My nervous system is hyper alert since surgery. All my senses are amplified to this day. Of course, I have accepted my situation and developed coping mechanisms. Recovery included anxiety and depression, but medicine helped, and time too. This experience has given me some hindrances, but also caused me to grow, and appreciate life more.

Take good care,

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Hello there! I have never posted but felt I would share that I had a small aneurysm and polycyclic kidneys inherited from my mother. We were monitoring both. The week the world shut down due to Covid I got the news that my aneurysm had grown to 5.5 and I needed interventional surgery. I had to wait several months to even do testing and then once I had the testing we determined that due to the complexity of my aneurysm a full craniotomy would be best. Surgery was on June 20, 2020 . It lasted 6.5 hours. Only my husband was allowed to visit due to Covid restrictions. As for recovery- it wasn’t as bad as I had anticipated. When I first woke up the day of surgery I tried to remember giving birth to ensure my memory was in tact. My husband called my son on his cell phone and I was able to speak to him the same night- a little fuzzy but able to do it. I had a pretty good recovery and was back in the gym 3 months later. Super thankful ! Prevention is the best thing you can do - sending positive thoughts your way.

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