I found out I had an aneurysm after collapsing in my kitchen- was rushed to the ER in Jan16th. I had a stent and coiling done. On Feb 15th I met w/ my neuro who said he was pleased w my progress...Feb 23rd I returned to the ER bc my neck got suddenly and painfully stiff. My aneurysm had bled again. They put in more coils. I just had my 6 month follow-up angio on July 17- met w/ the neuro surgeon Aug second- here are his notes (copy/pasted)
My neuro's notes:
The 6month f/u angiogram shows stable filling at the base of the aneurysm. there is also a hollow part of the aneurysm on the rotational angio that does not appear to fill with contrast. I am pleased that the aneurysm is at least stable but I am somewhat concerned about the residual filling at the base of the aneurysm. Given that she is relatively young, I do think there is significant risk that the aneurysm will either regrow or rupture during her lifetime. I discussed options of observation, placement of another neuroform stent for flow diversion, placement of a pipeline stent. I think that a pipeline stent would have the highest likelihood of protecting the aneurysm from rupture over the long term, but pipeline is contraindicated for use in another stent and use of pipeline in the posterior circulation is also off label. I discussed this with her and discussed the risks of small perforator stroke, large basilar stroke and distal hemorrhages with the patient. At this point the patient is leaning towards observing the aneurysm. I would like to get another angiogram in 6 months. She may also get a second opinion........
Im currently waiting on my referral request for a second opinion with UCLA to go through- I am really frightened and hoping UCLA can help me
Hi and I am sorta in a similar boat...and this winter getting 2nd opinion b4 my next angio with my neurosurgeon...I am concerned because I too have basilar aneurysm coiled...and my neck has never been right since surgery...however, I have very little movement to the right side...painful and can make me sick to my stomach...seeing my neurologist on Friday...please keep us posted on you...I am learning ... ~ Collen
Hello- thank you for the welcome. So glad I have found this site. I have a lot to learn and need the support. I am 32 years old with two young children. My Son turned two May 30th, my daughter will be 4 Sept. 13th.
I am having lots of pain and soon as I wake in the morning. I feel the pounding, like blood pressure- lately the last several days- maybe week or so now I have had pain on my right side- by my temple- hurts to even barely tilt my head- pain can be so sharp its scary- even makes that side's ear hurt as well- I took 3 tylenols (500mg) and not moved- pain is now more at the back of my head/neck area. I find it best if I dont move- getting up or even sitting down will cause shooting pain.
My primary care Doc sent the request for the referral to UCLA on Aug. 6th- I was told by my insurance that it takes about 5 days to process. I should know by Aug 13th.
I have already sent my CD's from LLUMC file room, and my progress notes to UCLA- just waiting for the referral to go through so I can have an appointment with them-
My fear is something is going to happen before I even get seen...
Its been an emotional roller coaster and I want to be positive but fear the worst-
I know I should write a letter, and even create a video for my kids but I also feel if I do this than its going to happen- My fear is stifling me- I should prepare but also dont know how to start- all the things I want to say to them as they grow older- how I'll say it etc.
I just dont want to believe it, but the constant pain is a daily reminder that Im not well and like a ticking time bomb it can go off anytime
If you feel really bad...and can't move...please go to ER and seek medical attention ... sooner than later... donot wait...worried about you...Gotcha in my prayers right now...~ Colleen
thank you for the prayers. I really appreciate it.
Im wondering if its a sign its leaking or not? or about to?
Im fine all night while sleeping but when I wake the pain starts
If I go to the ER- they check things out- if Im not hemorrhaging they'll just send me home
or wonder if they will consider to do the procedure of adding that special stent (as reccommended by neurosurgeon) which sounded very risky- putting this stent in within the stent I already have- can block the aneurysm BUT it can also block the flow to all the little veins that branch off- I stroke and die. They wouldnt know until several weeks after they have put it in
I really want to hear what UCLA has to say- plus my doc said they havent dealth w/ anything like my case- and I fear bc of their inexperience the worst will happen.
Please go immediately to the forum site on acetaminophen set up a day or so ago by Ron...
And, ask ask ask your doc...about the volume to take... If my memory has not failed on generics...
Skipping everything else for now...except...make sure you have adult immediate contact a/w/a 911...Have you discussed your concerns w/close family/friend?
If you need ER, think you need ER...do NOT drive yourself...have an instant advocate (is that called "ice"?)... a/w/a 911...
Also be certain you have a Med Card...what/when/doc name/#...any meds you are on / any known allergies...have an extra copy w/your advocate...spouse, parent, sibling...a copy taped on a specific spot in your home...(blanking on word) front/back door, on the refrigerator...Teach your 4 y/o that page is the first of your story...that she can tell/show her grandparents, etc...
I saw my neurosurgeon Aug 2nd- I told them Im taking tylenol
2-3 pills at least 3x's a day (also told this to my primary care doc when I told him Im still having head pain- all he asked me if it was helping- I said yes, kinda but sometimes I need three pills several times a day)
I still have some hydrocodon left from my first rupture- and only use it once in a while- when I dont think the tylenol is helping/ cant take another dose bc it would be too soon.
(Ive had percocet, and Ibruprofen800 mg prescribed after the second coiling) but I dont have any more of those and they wont refill it. So my neuro said to take the over the counter meds.
Neither one have been really informative- tell me warnings or anything
Its really shitty the care that Im recieving- Ive learned more just being on this site in the last day than I have this last 6-7 months since Ive had my first rupture. This is why I cant wait to see UCLA- Im thinking the level of care should be 100% better.
... question- is it okay to drink coffee?
I read somewhere on here someone said dont smoke and dont drink alcohol- anything else??
Dear pat- thank you for your reccomendation that I get my med info written out on a card and have it placed by the front door, on the fridge etc.
Im going to do that today.
My husband works during the day and Im a stay at home mom- Luckily my parents and in-laws live in the same city- both about 5 min or so from us. (they live up the hill so to speak, and we live down the hill) My parents still work- my in-laws are retired. So sometimes I just call them and they will pick up the kids for me and they spend the day with them. Ive had to call on them because the pain was so bad I can barely move to do a diaper change, or help them with a bath etc. They want me to spend the day with them- just need to take them up on their offer.
I think I will starting next week!
They are the ones that got this book that is suppose to help w/ teaching how to call 911-
and I need to go a bit further, and teach my daughter how to actually use the phone for an emergency- teach her number recognition as well :/
I just hope she doesnt have to go through that- bc I know it will really effect her. Ive tried to tell her things like if anything ever happens to me- just remember I'll always be there- she can look up to the stars, or if she feels the wind, that its me. If she sees a butterfly, thats me. But she starts crying and tells me she doesnt want to talk about it. I think having in the hospital earlier this year- and not being able to see me for ten days straight each time I went into ICU has effected her. After I got out after the second coiling, four days later I went back in bc I had a high fever and was shaking so bad - turns out I had sepsis- an infection in my bloodstream and had to spend another 5 days in the hospital (so I spend about 25 days total in the hospital- 10 days in Jan. 10days in feb and 5 days in march.)
When I saw my neurosurgeon after the second coiling I asked him is there anything I should/shouldnt do etc and he said no- just live my life and be Happy.
just wanted to add this info that I copy and pasted from one of my cd's I picked up from the file room- is from my first rupture, in January. It may have more info on where my aneurysm is located. might help other members that know more about this than I do.
.....
CT ANGIOGRAM HEAD - 01/17/2013 03:17:00
HISTORY: 31-year-old female who presented with headache.
COMPARISON: 1/17/2013 at 1:59 AM.
PROCEDURE: Using the GE LightSpeed Ultra scanner, noncontrast 5 mm contiguous EMI-plane scans were obtained from the skull base to vertex. A timing run was then performed at the level of the mid-orbits. 1.25 mm axial scans were obtained at 0.6 mm intervals from the foramen magnum to above the centrum semiovale during intravenous injection of 100 cc of Omnipaque 350. Image data were processed using standard and bone algorithms. Coronal and sagittal reformatted images and 3D reconstructed images were created.
FINDINGS: There is redemonstration of extensive subarachnoid hemorrhage predominantly in the partially effaced basal cisterns as well as within the mildly prominent ventricular system. the cerebral sulci remain effaced.
On the CT angiographic images, a 1.7 (AP) x 1.8 (TR) x 2 (CC)-cm aneurysm is seen. This appears to arise at the vertebrobasilar junction with fenestration of the basilar artery just distal to the aneurysm. The aneurysm appears relatively wide necked. The vertebral arteries are co-dominant. The superior cerebellar and posterior cerebral arteries appear normal in caliber. The internal carotid arteries appear normal in caliber from the skull base to their bifurcations. The anterior and middle cerebral arteries and their branches appear normal. The anterior communicating artery is patent. The left posterior communicating artery is normal. The right posterior communicating artery is not well seen.
IMPRESSION:
A 1.7 (AP) x 1.8 (TR) x 2 (CC)-cm, saccular aneurysm arising from the vertebrobasilar junction with fenestration of the basilar artery just distal to the aneurysm.
Extensive subarachnoid hemorrhage with intraventricular extension. Sulcal and cisternal effacement.
So glad you will get that done... be sure hubby has copy in his wallet...each of your parents in their possession...
Teach your daughter how to call the grandparents...A long-term friend of mine introduced me to her 2 y/o granddaughter on the phone...due to distance...we only talk on the phone..
Were you able to talk with your children on the phone? Did the family call her at home to tell them they were beside you, etc etc...A parent being away is sooo hard on a child...
Being kept away...was it for her health to stay away from potential bacteria (like sepsis) , ...or keeping you away from potential outside virus?
I am surprised at your sepsis...You have a blessed story for a 5 day stay/cure....A long-term friend of mine, under chemo, also got sepsis...a long story...
Did your daughter know of / see you pass out in the kitchen?
A local peer friend of mine...was walking her 4 y/o son down the stairs and passed out. tumbling down the stairs...he's yet so attached to his mom...at 14 years...the older daughter, did not see it happen...and, does not have quite as strong an impact...she knew everything else...but did not observe the black-out/fall/injuries...
Did the doc explain how to be happy around the severe headaches and pain?
I can understand how waiting for the okay to go to UCLA (hoping nothing goes wrong while you wait) can be unbearable...in 2010 my coils had compacted which sent me to the hospital one night...and I was in the hospital about 4 days or so, nothing had been done to me other then MRI's, no plan on what should be done next to ensure I wasn't about to have a rupture, nothing...the last night I was in the hospital, my Neurosurgeon came in and casually told me that due to so much blood in my head, he couldn't quite get a good idea of what was happening in my head..then suggested I leave and come back to see him in another 3 weeks for 'followup care' and by then maybe the blood would have cleared somewhat. This was NOT what I wanted to hear from the Neurosurgeon, I knew I had a problem with either a new aneurysm or an old one, it wasn't really clear to me at the time what was going on in my head but I felt it needed immediate intervention, that much I knew. Waiting 3 weeks was, to me, out of the question.
So I went to the Radiology dept. of the hospital and got all my scans on a disk, checked out and headed straight to the Catholic hospital in town--well known for the ample amounts of money spent of state of the art equipment and their entire facility for that matter, and I did so knowing full well that I didn't have health insurance behind me. It turned out to be one of my wiser moves in life, I was admitted immmediately and within 2 days I had clipping surgery to correct the terribly discombobulated coiled aneurysm that the previous hospital /Neurosurgeon had performed--and according to my new neurosurgeon , I didn't have the luxury of waiting another 3 weeks to "see what happens".
The bottom line here is, do not wait if you think there's a problem, and it sounds to me like there could be. Seeking help in the form of a 2nd opinion is well warranted here. I did essentially just that, only my method of doing so entailed an ER visit , no appointment necessary! Please don't hesitate Mamika ...you know your body better then any doctor ever will, just by choosy as to what hospital you land in...(UCLA has an ER, can your husband or folks/inlaws drive you there?) I hate to sound pushy, but I only do so when I feel well alarmed.. I know my hasty actions in switching hospitals/doctors literally saved my life. Even without an official "okay" from your insurance company. Your life is much more important.
I received a call from UCLA today- the lady I spoke to (not the Doc himself) said that he doesn't agree with my neurosurgeon regarding needing a pipeline stent- he recommends more coils.
right now we're waiting for the referral to get through so I can have the appointment with Dr. Nestor Gonzalez at UCLA. (*should know tomorrow) they would want more imaging done and discuss more about the procedure.
I had a sigh of relief- this whole adding another stent within a stent sounded VERY risky- I really was fearing the worst. I know I shouldnt get my hopes up but this call seriously made me feel much better.
Hope he can do more coils bc when I had the second round of coils put in in Feb. my neurosurgeon said he couldnt put in more bc they were falling out...
I think the second opinion and maybe even the third will help me decide how I should proceed...
So glad things are moving in the right direction for you ! I highly recommend Saint Josephs Hospital in Orange, as well as St. Judes in Fullerton .M y Neurosurgeon is Hector Ho, his office is directly across the street from St Josephs (he has rights at both hospitals) I can't say enough about Dr. Ho, and St. Josephs Hospital/staff/etc. were absolutely awesome.
One place I'd avoid at all costs ( near you, ) is Arrowhead Regional. and I'd never set foot in UCI Irvine, (for the record!--lol)
I know you're frightened Mamika but try and stay positive! I've got my fingers crossed and sending prayers, Peace, Janet
Your pain symptoms mimic mine, but more severely than mine it sounds like. You described them quite well though - pounding like blood pressure, but it's a stabbing pain, right? That's my "headache" that I get regularly since my first coiling/PED (had them simultaneously - not common, but the best plan for my annnie). Mine is focused directly where my annie is, back left of my head, between my ear and the middle of my skull. I too find that not moving improves it, and I too have taken Tylenol at length, and if that's what it takes, that's what it takes. I take Ibuprofen simultaneously too, even when I was on Plavix and aspirin as well. I can't take Hydrocodone because it makes me vomit, and my surgeon said not to anyways. I remember the fear of something happening before getting treated - it took two solid months of the most stressful up and down with my insurance company, too many doctors, too little progress, all with the usual stresses of stay-at-home mom-hood. It was winter, there was stomach illness, school, dance practice, etc. I have three little girls, and I was 32 at diagnosis and they were 6, 4, and 1. I too considered leaving behind some videos, just in case, but I could never bring myself to make them because I thought it'd be like giving in. And like you, constant pain IS a daily reminder of what's happening and how fragile life is. My only really real suggestion is faith. Mine is non-denominational, just a good healthy belief in the Bible in general, and God's love for me. It's not perfect, but it's helped a LOT through the bad times. Just letting go, and letting God deal with it for me! Going to Him every single time I go to the hospital and just praying I get another day. That's it. I have a church too, and the outpouring from there was great when I needed meals, and even a little money when the insurance refused to pay for first surgery (still fighting them over a year later, with a lawyer of course).
Yes, you learn a LOT here - it's quite frustrating trying to get even the simplest of answers from the docs, even the awesome surgeons sometimes! I went through the hoops of asking the surgeon, some ER docs, my primary doc (who for all intents and purposes is nothing more than my prescription writer - he's useless otherwise), another surgeon, all the Tylenol/Ibuprofen questions and got nowhere really. I just take however many of whatever kinds that works to kill the pain and move on. Generally, two fast acting Tylenol with three ibuprofen every 4 hours. Can't worry about everything anymore, just have to worry about quality of life TODAY.
I've never seen coffee being a problem, and for some kinds of headaches, caffeine is recommended (but I don't think it applies to us - but it never hurts to try!).
