Basilar Tip Coils compacting question

General
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I had a significant Basilar Tip Aneurysm treated in a 6 hour surgery w/ 20 coils and a Stent July 2011. A couple vision and forehead paralysis events occurred about a week after each of the two post op Angiograms, but otherwise the normal electrical headaches have resolved over time. The question I have is has anyone experienced the sensation of movement and sound of movement in the area of their coiled aneurysm? Over the past 5 months I experience this when I am laying in bed at night and wake up to reposition my head to the opposite side. My thoughts are that the coils are perhaps moving and compacting within the space so I hear this movement and feel it as well. No pain, but just freaky.

I have put off discussing with my surgeon as I have been "cleared" medically as of June 2012 and do not want a red flag if I go off my current employer insurance and attempt to get my own insurance. Otherwise, most days I feel pretty good with occasional strange headaches but that is it. Any thoughts out there?

Thanks - Annette

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If you do ask this question to your doctor, please let us know what they say. I have done a lot of research on aneurysms and have coils myself. I have never seen any post or article stating someone could hear the coils move. Mine have compacted and I never heard anything. I honestly don't think it's posible, but you never know..

3

Hi Tony,

I agree it seems very strange, yet also feels and sounds very strange when it happens. It occurs quite often, perhaps a few times a week to the point I cannot ignore it. Will see if anyone else has had similar events before discussing with surgeon. He may think it is not related but I do not see any other explaination. I did have a very large neck on my aneurysm and it also had a second little aneurysm shooting off of it so not exactly text book. Will update when I learn more.

Thanks -

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Annette,

I wouldn't find this to be a strange sensation by any means. Blood vessels have nerve receptors. That's why patients suffering a hemorrhage mention the worst headache of their live. Hope this helps you.

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Again Welcome Annette...and keep us postd on what your Doctors tell you about the sensation in your head...~ Colleen

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Annette, One thing that I want to tell you so you don't have added worries. I sell health insurance and come January 2014 you can go to any insurance carrier and be treated and priced the same as a any women your age and in the same zip code. If something was to happen to your insurance between now and then they have to by law offer you cobra. Hopefully nothing happens between now and then but if you ever have any questions please let me know.

Kathy

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Also Annette I want to let you know that I to have a basilar tip aneurysm that was coiled in Jan. 2012. Before the coiling I did hear the beating sound in the aneurysm before the coiling. I have not heard anything since but do believe it is possible for you to hear something from that area because of my experience.

Kathy

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Hi Kathy,

Thanks for reaching out. I am aware of the Cobra option and also thankful that Obama Care should allow all of us with pre-existing conditions to obtain affordable coverage. Hopefully, with all the partisan fighting, that will stay in place. My current insurance through my employer is quite good but considering leaving my position within the year and just taking some time off before the 2014 law kicks in so Cobra is an option, although not inexpensive.

Thanks again,

Annette

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Thanks Kathy- that is interesting. Was it that "beating sound" that moved you to be diagnosed with the aneurysm? The noise / sensation I have is not a beating but more like the feeling of items floating and hitting each other...thus I think the coils may be on the move as they compact. I do not feel them daily but definately 2-3 times a week. I am not so much worried about it just feel that is possibly part of the journey. I will mention to my surgeon in a couple weeks.

Annette

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For about 2 years when I went to bed I would hear the heart beat sound in my head the minute my head hit the pillow. I even saw a ear specialist that did a Ct of the ear canal (missed imaging the brain). It was when I was diagnosed with Addrenal Insufficientcy months later that they did a MRA looking for a tumor of the pituatory. Note that non of the doctors believed me when I said that I heard the beating sound. They just dismissed it. The minute the coiling was done I never have heard the beating again which is a blessing because after I found out about the anuerysm it freaked me out. So I do understand that hearing something that you know you hear is frustrating. Hope they figure it out.

Kathy

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Hi kathy...again Thankyou for sharing your information on health issues...we have many of the similar problems...Doctors (before my aneurysm) found an adenoma on my left adrenal gland...sorta took back seat to my leaky annie, but due to your post I am making this my New year's resolution to get this looked at and make sure all is ok...Who did you go to for the Adenoma on the Adrenal gland and was it found before or after your aneurysm...?

Happy New Year's To You and Your's ~ Colleen

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Hello Annette, I do have strange experiences(lack of what else to call it) esp. when I am quiet in bed. sometimes feels like power surge-sometimes with noise but not always. I have had people explain that maybe nerves healing but who really knows!!!! No harm is ever done so I have learned to live with it. donna w

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I had no tumor on the addrenal glad, they just found the aneurysm. I was diagnosed this hypo-pituatory and secondary addrenal insufficiency. I now have to take cortef as my body does not make enough. I was very lethargic, exasted and just didn't feel right. When your body does not make enough cortisol you really can't handle stress. So if anything is stressing you out it hits you twice as hard because corisal is what is produced for pain, stress, exertion, just daily living. Having an adenoma on the addrenal (which produce hormones that we need for everything) suppress your bodies ability to send all the signals that it normally would. I'm surprised with all the stress you have gone thru Colleen that this hasn't been more of an issue. You need to head back to the endrocronologist and have a cortisol stimilation test. Then they can tell which systems are inpaired. The pituatory, thalmas, thyroid, parathyroid and addrenal glands all work together and if one part does not work than all hormones go nuts. As far as who would do the surgery, the endo could referr you to the surgeon. Hope this helps, but go get it checked out.

Kathy

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Thank~you so much Kathy...and sorry about the mis~read...sometimes you would think I had a brain aneurysm...hahaha...a little funny...well this is the thing...I am at the point where I donot handle anything...I mean anything...the littlest thing stresses me...even my husband notices ... it is almost uncontrollable... I think this was a problem in the past my primary never had me see an endocronologist...I am going to look into seeing one ... ~ Again, Thanks for everything Kathy...you have been one of my biggest helps...~ Colleen

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I have the same thing!! It is like clicking and I can hear it when I lay down sometimes... so then I switch to the other side and it stops.. I have been coiled and then my left internal carotid artery was completely sacrificed (cut off) .. I did ask my neuro at The Cleveland Clinic about it and he said he had never heard of that before... he wasn't worried... I hope that helps! :)

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Thanks Donna, It is comforting to know others have similar experiences. Right after my surgery I had unbelievable electrical type waves that would shoot through my brain. That was quite painful and scary and continued for many, many months but slowly resolved and not quite as alarming. A bit alarming to scream out in the middle of a company meeting. Hope you are doing better as time goes by. I pray that with time all the symptoms and events resolve but sometimes I think the weird little sounds and movements may be the new normal.

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Hi Charessa,

I am still having the sounds and sensation of coils moving and shifting but it is getting better every month. What was strange is I did not start experiencing this until almost a year after my surgery. Prior to that I had much more severe and electrical headaches.Almost seems like perhaps swelling in the area has resolved, thus allowing the coils to shift and adjust to the space. Still have not told my Neuro as I am generally cleared and will just wait and see if all resolves. You are lucky to be in Cleveland area. I lived in Chagrin Falls for 3 winters - enough said, moved back to California as could not take the weather! Be well!

Annette

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Hi Annette! It's been sometime since I've posted, but, saw what you were experienceing, and wanted to put my 2 cents in! I also had a Basilar tip annie, 17 coils and 1 stent, 3 surgerys total, and now, like you, I have a small one that has decided to shoot off the first. Mine was 16mm and luckily, unruptured. Anyway, I could hear mine thumping as others have said. My Dr. told me that that was perfectly normal. The annie was laying on the main artery that serves the ear, (I still hear it thumping sometimes). It sounds like you had a big annie, there's not much space up ther in our heads! The circle of willis is right there also, depending on how your annie is laying, it seems logical to me that you could hear different noises. (I'm not a Dr, or even any where near one, just someone who needs to make sense of it all) Anyway, I am also experiencing issues when I lay down. I still sometimes hear thumping, but, I also "feel" my annie "pack" moving. I went last month and had an MRI, told the Dr what I feel, she wasn't concerned. I think there is little known about basilar tip annies. Make sure you do discuss with your Dr. just to be safe!

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Hi Melodee,

Thanks for sharing your experiences. May I ask what your 3 surgerys were? How long ago was your first surgery, 2nd and 3rd surgery? That is a bit scary. I wonder what the post-op statistics are. Such as percentage that need retreatment, or like you mentioned that you had another one shoot off. I believe I know when my aneurysms formed as I had 2 episodes of extreme sharp unbelievable pain that made me stop in my tracks and grab my head. My best friend was with me and I joked at the time that it was just my aneurysm. That was probably 8 years or more before mine was diagnosed and I had completely forgot about that but he reminded me. Anyway, we are so lucky to be able to write about it all. It has been a transitional healing for me and I can definately see a change in syptoms over the past 1.8 years. First I had extreme electric headaches for many months. During that time I also had these transparent "floaters" in my peripheral vision that ended up with a couple "events" involving frozen paralyzed forehead and vision. After ER visits and angiograms, my doctor determined we did not have full occlusion but felt it would fill in with time. Then at 1 year post op I had the sound and feeling of the coils moving or possibly compacting in the space of the aneurysm. THis has been going on for maybe 9 months now but becoming less extreme and almost gone. So I think I am still on the mend and every month seems better than the last. I always worry that I may have another aneurysm and it will be lights out - makes you appreciate everything all the more!

Good Luck to you,

Annette

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Sure, my first surgery was when the 16mm annie was discovered. I thought I was having a stroke. I woke up to the feeling of an elephant on my chest, then I became extremely dizzy and nauseated, violently vomiting. This was my first, and hopefully only ambulance ride! This was on Jan. 7, 2011. That’s when they discovered my annie. I had been having the "grabbing the back of the head" headaches for about 6 months, my Dr told me it was my neck, needless to say, I don't see her anymore! lol! Anyway, the first surgery, my annie was at such a high risk of bursting, they were nervous to do a lot, they put in one stent hoping that would divert the blood flow enough for it to dry up. It didn't, by Feb, 2011 I was in for another surgery, this time they put in 10 coils. That seemed to work, but, I continued with the headaches, although not as severe. Due to the headaches, I went back in July, 2011. My annie was actually enlarging. After the surgery in Feb, it had reduced to 6mm, then in July, it had grown, no longer circular, and was now 6 x 10 mm. So 7 more coils were added, for a total of 17 coils and 1 stent. I had an MRI in Jan. 2012 and it looked great! It had reduced down to 4 mm, but another one had popped up out of the side of the first, this one was not quite 3 x 2 mm. The Dr wasn’t very concerned about that one. Many people live entire healthy lives with small annies, In Feb 2013, I had another MRI and everything still looks great, no enlargement, yet, no reduction in size. I need to refrain from anything that will make me go umph! Lol! I still have some pain in the back of my head, it feels like a sore muscle, yet there’s no muscle there, it’s hard to explain, mostly when I wake up in the morning. I also have episodes of seeing floaters, and “hearing” my blood flow to my ear, and feeling the sensation of my coil pack moving. I realize that I am very blessed to be alive. It does make you appreciate life even more, and I'm like you, I worry about another annie, but, try not to!

I hope the best for you, I will keep you in my prayers!