Im soooo about ready to just say " i'm done " and walk away from this brain aneurysm ordeal..since being diagnosed w/ 8mm, I have been passed back and forth between hospitals for 5 months now, which after 2 MRI'S & 3 CTA'S, it has been determined I cannot get the clipping surgery and just BE DONE... I have to settle for coiling and be a repeat customer the rest of my life..UGH !! After all the other tests this new surgeon is demanding an angiogram before he goes in for the coiling...REALLY ?? then what good was the 3D CTA I just went thru last month...For 1 thing, I have had 9 surgeries in my life and I am the 1st to admit I HATE hospitals, needles, and despise large gauge IV's..on top of office visits that cost 268 a pop when its something they could just tell u on the phone...Anyway, I am PETRIFIED to go thru an angio after all they have put me thru already, especially under ' lite ' sedation ?? UUHHH,,I don't think so...That stuff does nothing for me, in fact it makes me more alert...has happened in 4 procedures that ended up extremely uncomfortable and I suffered PTSD for months...I also have chronic back issues - I cant even get thru a dentist appt. w/out them sitting me up every 10 minutes..It will be sheer he%% to lay flat while they probe a tube thru my body to shoot MORE crap in my poor brain while I am fully awake...I don't mean to sound horrid here and I think I , along w/ my poor family, are just hitting our breaking points..My previous GP found out how long they are taking to do something and HE is livid..I have had 4 children, 2 of which were born at home weighing 9 lb. 12 oz. w/ NO drugs for pain, so I don't feel im a wimp...but this brain aneurysm tests and treatment have got me ALL fuzzed up..Can ya'll share angio experiences w/ me..? Why can they not just knock me out for it ??
ANGIOGRAM FEAR !!!!: Im soooo about ready to just... - Headway
ANGIOGRAM FEAR !!!!
I have a 28mm a aneurysm, diagnosed in April this year . I had 17coils put in, a stent and another artery occluded in June . In September I was back as there was blood showing through an MRI scan , had another stent inserted and I haven’t been well since. The dizziness is unbelievable and I’m hoping that will ease in time. Lots of bed rest seems to help me .
As for MRA ‘s you are certainly not a scaredy-cat by any means. I had one through the groin , only felt the contrast when it was going in Really felt woozy but my surgeon likes a joke so we had great conversations. The procedure I had this time is experimental so fingers crossed when I go back on December my “beast” will have Been tamed . I have,like you, thought many times of just taking the risk but here I am . Keep battling on , it’s the only way . Lots of hugs , Shona c
WOW !!! That's a large one !! OH Goodness !! Best wishes w/ your recovery and thank you for the inspiration Shona...I really do appreciate your share and advice.. hope I can maintain the bravery level ,, they just need to hurry up already..I guess I don't trust the coiling surgeries and have NO intentions of going thru more procedures, so, hope this does the trick...Bless You Friend !!
Hi Scaredsilly
We’ve spoken before and understand your fear completely as does Shona (who’s also answered)
I too was frightened of having the angio when awake as terrified of blood and needles so it was unthinkable to have this procedure before my coiling.
My surgeon ended up doing it when I was completely under just before my coiling procedure. Have to say however terrifying it’s the ‘gold star’ of xrays and can give your surgeon a complete and true view of how the blood is passing through your brain and aneurysm.
Please please go with what they say as since I’ve had my 1st Neuro appt with my nurse I’ve been told that my aneurysm was a dangerous one as it was an irregular shape and would have been fatal!!! After 5 MRI’s this was never picked up. I now know my surgeon has all the information he needs to decide how to treat or not the other 4 I still have up there... believe me my friend that if he says they need attention I’ll be in there ASAP!!! Terrified though I still I am He’s saved my life.. also gotta add that I’m no longer living with that crippling fear we wake up to everyday that it may be our last!!! Dramatic as this sounds it occupied all my thoughts and affected my precious life.
I’m sure your in great hands and as I’ve said before giving up and not going through with it is really not an option however tempting.. you’ll just be left with that fear when you could be all fixed.
Ask if the angio can be done when you under as mine was👍🏻Also possible sedation to help you with your fear.
Sorry this has been a long post but really do understand your fear of all this and the isolation it can cause.
Please don’t hesitate to contact me or we can chat if it helps I will give you my mobile number
Hugs Andrea x
Thank you so much for reply and I am amazed at how brave you are..I think if I didn't have so many other health conditions going on I might be handling this better,, Ii just checked my health portal last night and there are 14 listed..its ridiculous..lol...I PRAY my surgeon will do as yours did and spare me the drama by just letting me sleep thru it and then do the surgery,,Makes much more sense,, seriously, why traumatize your patients and also im SURE its more costly going in twice...Going to my reg. Dr. 2morow so YAY !!! More POKES !! Ugh !! I think depression is seeping in cuz its just like - No Fun, all pain and Drs. I dunno, Im really kinda sad they found the thing to be honest..wish I would have never had the 1st CTA...BUT...trying to keep the faith ( with every poke ) lol Take care and im so glad you have a much better attitude than I do..Bless you sweetie !!
Christ !! i don't know what to say that won't sound patronizing or flippant?
You are amazing.....i have been struggling with life and physical stuff but nothing compared to you and these others.....and I've been worried...
You got this darlin... you say have a couple of kids so that's some motivation to keep going..... 
I can only tell you that we're all routing for you and we all respect your strong will and courage while facing this hell!!
Take it day at a time, and maybe change your username to BRINGITON......:))
You , Shona and all the other folks facing this kinda treatment are true warriors in life...
Hold your head high.... yes it's okay to say your scared, fighters are so many times afraid, ..it's okay..... treat this like a challenge, tell it you won't be beaten and it's messing with the wrong woman, there is only one winner......and that's you..... you have already fought so hard and you are winning .....don't give up....
Big hugs to you ...brave lady......
You may have just saved my life and I thank you so much !! I had another incredibly hard day w/ drs. and NEEDLES and now MORE meds..Im now diabetic and BP is thru the roof...As I left the place today, I literally gave up..Your beautiful words brought me back on board to proceed and my family cannot thank you enough !!! Tremendous hugs coming your way..
Ditto ...Thank you for your kind reply....i was little worry you might think i was being dismissive with my pep talk.....
I'm glad it helped .... i meant every word.......xx
Stay strong, stay focused and you, me and all of the other warriors on this forum will get through to win our personnel fights.....
Hugs to you, ....your doing great
Just wondering how your doing are things any better you my dear friend? Andrea xxx
Hi , Thank you so much for asking of my situation..Well, my instincts were right as to just NOT trusting the Drs. and their procrastinations & decisions here..was about ready to just say ' screw it "...At my families insistence I called MAYO CLINIC...( very famous ) They booked me immediately for 2 appts. which I attended last week...They were AMAZED at the fact the hospital here sent a CD of my breast exam when they knew I was going to MAYO for a brain aneurysm !!! Anyway, Mayo contacted them and hospital got them the RIGHT CTA immediately...OMG !!! It was a LONG 4 hour trip there, expensive motels, LONG day in HUGE place but I knew upon seeing surgeon, I had come to the right place...Thanking God for my son taking me for all of that and now turning around and taking a week off as they set me up for a stenting surgery already this Thurs. at 6 AM..we must be there for pre op testing on wed. tho so I pray I pass that or its a wasted journey..They began me on blood thinners immediately..I am PETRIFIED of course to go thru all of this in an unfamiliar place and then have 4 hour drive home as well but have no choice...All my family was in disbelief when we were told that I have not just 1 annie, but 2...They are hoping to stent both at same time..I hope so cuz I can guarantee, I AM NOT GOING THRU ALL THIS AGAIN...I know I should be grateful these were detected but im feeling more anger than anything..I am NOT in to surgeries at all, but at least the last 9 I have had I got the reward of feeling relief from pain or other symptoms..This just feels like im going thru hell for nothing, for something I don't even feel or know is there,, heck they might not even burst !! I think all the fear involved along w/ hassle and wasted $ I DONT have is doing me more harm than the dang annies...I just pray I don't have nasty headaches or other crap all the time afterwards and I hate the fact I must be on a black box med. for my poor bad livers sake..ugh..i will just shut up now..i don't have a good attitude about ANY of this ..am really wishing id never have told anyone when they found this...I truly am..
Hello there
Flip you’ve been all over the place and I can imagine the distance you’ve travelled. We’ve just come back from a road trip in the US and places are not just blocks but hours apart unlike the U.K.
You’ve come a long way mentally and so glad you’ve settled with the Mayo and are ‘happy’ with your decision.
I’m certain it won’t be as horrific as you imagine it to be and at the end you’ll be fixed.
Please have faith they are the true experts.
I can’t tell you how grateful I am to be fixed and can get on with my life... no
longer crippled by the fear though I too have another 4 up there but they are monitored now and ... honestly if they’re not worried about them rupturing I’m not either. I learnt that when they did the angiogram they found the one they were fixing was an irregular shape and would have ruptured eventually...., I have no symptoms and would never know it was there.... you are certainly making the correct choice... you can get past the fear but you may not survive a rupture or the effects of one of you did survive... 40% of people never make it to the hospital.
Be the brave woman you are and embrace this chance of life..❤️
I will be thinking about you and sending lots of💪💪💪💪💪🙏🙏
You’ve got this girl!!!!!!
Ax xxxxx
Thank you Sooo Much Tillymint 16...You really helped more than I can say..Its like I just get freaked out and have to be rebooted to get back on track again..you just did that for me and my whole family will be thankful..I pray you stay safe w/ your other annies and they never get to dangerous point,, you have been thru enough also...Lets plan to band and stick together for life and fight off these dang things together !!! I will be in touch as soon as im up to it after surgery Thursday and let ya know how it went..hey , can you tell me how you felt upon waking up in recovery ? in pain ? any other things I should expect ? I do much better going in knowing what to expect on the flip side..Thanks again !!! xoxo
Good Morning
I’m glad to help even if it’s just a little bit as that fear sure takes over!!!!! I was completely terrified of the whole thing so much so my husband sat with me for 5 hours on admission day and I was so frozen I couldn’t even unpack my bag for my stay!!!!
I didnt require ICU after my op (though there was a bed all ready!) woke up immediately and literally was so high that I’d had my surgery I couldn’t sleep that night I was excited about what I’d just achieved!
I guess half of that was the drugs still whizzing around but had no pain relief as did not have 1 headache and still haven’t 6 months on.
The only thing I’ve had is what they call an aura migraine which started after a few weeks at home. No pain just like rippling water affect visually in my right eye occasionally. Wouldn’t have stopped me driving but just strange though very common It’s just everything settling down but it’s stopped now and from day 1 would not know Id had anything done.... honestly... I sit and contemplate some days just what a miracle that procedure is.
However you feel about it the recovery is a lot quicker and less complicated than having an incision with a clipping .. also on a risk ratio which they probably have done with you ie age verses surgery etc the coiling is less risky than a clipping.
Having said this everyone is different but oh boy did I do my homework before this (4 years) of watching webinars and reading other people’s stories. The bottom line for my personal situation was that it was in a bad place... posterior communication area) and that my Mum had a fatal rupture. Though my health is good my fate was sealed.
I’ve now reversed that dread of the last 30 years!!!!!!! Do I want to get on with living ...... sure do!!
All the best of luck believe me that fear is worse than the actual thing... people used to tell me that and now I know it’s true❤️
Please let me know how you get in and I will be sending all positive thoughts over seas to you🙏🙏🙏
Regards Andrea xxxxxx
Hello there
Just reading our posts and wondering where your up to with your situation. How you doing ??
Andrea xxx
I had angiogram last year for pseudotumor cerebri to assess pressures for possible stent placement. The light sedation is necessary (per doc) so that they can get feedback from you on what you are sensing as they check things out. I am not going to lie to you. It was very uncomfortable (pain in groin where they accessed my vein and artery). I am claustrophobic and it was very hard to be on that table with the c-arm (the xray camera device) so close. I was begging the anesthesiologist to knock me out. Had my team done better with talking me through what they were doing and keeping my groin numb I think it could have been less traumatic.
I suggest you very openly explain your concerns to anesthesia before procedure so they can appropriately prevent/treat your back pain.
Thank you for your honesty and I have been very forthright in being honest about backpain being an issue...nurse was afraid they would not be able to get me thru it...my family thinks it absurd that they put people thru these inhumane procedures awake..doesn't feel drs, would have it done to them or theirs..that is my biggest fear , is them NOT listening to me when I tell them I cant take anymore and then they'll pull me out and ill have went thru the IV'S, Artery cut, ect.. for nothing..Tempted to pop a few valium before I even enter the damn place...im just so NOT into this although I have been getting freaky head pains like never before and my blood pressure is now very high, which is NOT good..Ugh !! Whys my body soooo naughty ??
Hi,
Have they given you any valid reason why you can't have it clipped? I know it's much cheaper to have the coils than the clip but it's a one time procedure and then once it's all healed it's job done!! Is your aneurysm in a place that can't be treated with a clip? I had mine clipped just over a year ago and it's job DONE!!
Lynda
Oh Lyndaryan, I LOVE you right now !!! This is the EXACT reason that I have been fighting SOOOO long !! I have been BEGGING for the clipping as I DO NOT want this to be a lifelong problem..I wanna suffer thru the hell and then not look back !! THEY say it is just too dangerous because of the location...I say B.S. !!! I just don't think the surgeons here in these hospitals are capable of doing it ..period !! It is about 7-8 mm, ICA w/ wide neck...They say its like if I put my finger near my throat on the right side and go straight up behind my eye a ways back- that's where the bugger is nestled..My fear is that I go thru all this crap and then I have to KEEP going thru it...also, if coiling is soooo wonderful - then why is there a 20% failure rate and why do people have to be monitored ? Why do people STILL suffer strokes and bleeds and burst AT the coiled site ??? Also, IF these coilings are the best thing since TP, Why is there only ONE Dr. in the entire city of SIOUX FALLS that performs them ? I feel like they are putting a bandaid on a wound that needs stitches... PLEASE PLEASE tell me more about your surgery, the site, size, experience ? Did they urge you to have coiling at all ? My gut has told me from the get go - if they cant clip, then leave it alone...its been like an inner STRONG feeling since it was discovered 5 months ago..Any more info you can give I would be so grateful...
Do you have the option to get a second opinion with a hospital who has a higher rate of clippings done?
thank you for responding BOLO...the clipping surgery has been refused by both of the local hospitals...5 surgeons have all said its too complex...Now im curious if its just too complicated for ' them ' ? I always wonder what MAYO Clinic would have to say about it to be honest. I wish they could look at all the SPENDY CTA'S drs. put me thru and now all for nothing ??..I feel like I have been fighting for this permanent surgery for 5 months now and feel defeated...Im still not comfortable with going forth with an angiogram while fully awake and then on to a coiling surgery that I have NO confidence in AT ALL...I have been SO stressed thru all this that my BP was 180/90 at my GP office yesterday...This is not good with an aneurysm and now bloodwork came back and Dr. is calling me 2morow...Diabetes has now entered the picture..about ready to throw in the towel...
Hello there
Just checking in to see how your op went... all good I hope👍🏻👍🏻👍🏻was thinking about you last Wednesday😌
Regards Andrea xx
Hi there I can’t seem to see your reply but know you’ve sent me one!!!
My email is andreawilson1@live.co.uk maybe this would be easier!! Hope your ok👍🏻👍🏻👍🏻x
Hi Andrea !! How wonderfully sweet you are to follow up on me !! Well I was taken up to Mayo by my wonderful son Tyler whom took care of his mother very well..I was also blessed to have my brother and sister in law make the drive to be with a very frightened me..lol...they were all wonderful...I was really quite calm the 6 AM check in time at St. Marys hospital but of course got frantic when they began poking me for blood draws (3) and inserting that dang IV I hate so much..They put it in my hand and it was very painful to be honest...I cried like a big baby but all then went calm as my family spoiled me...Things were ok until the anesthesiologist entered and began telling me of a WHOLE new plan of my sedation for the preangiogram on thru the surgery...Lets just say, she was WAY out of line, even insulted the dr. trying to trump his decision of having me under for everything...that wasn't gonna fly...I was about ready to get off the gurney and demand my clothes ( much to my families dismay) when she finally returned and stated things would go as Dr. had promised me...UGH !! By that time I was so worked up my family was livid with her...Thank God the operating room nurses were gems and calmed me down and showed much compassion...I woke up to the breathing tube being removed very harshly and in recovery they had a heck of a time getting my breathing regulated and B/P down..I was going in to shock..Noone was alerting my family of any of these things but they sensed something was wrong when the dr. came out and said surgery went well but then I was in recovery for 3 hours !! well but Annie was much larger than anticipated and it was very high risk of rupture..He stented it and has much confidence in that choice...My pain levels in throat and groin were at a 10 for hours and all they were giving me was Tylenol !!! I was pissed..EVERY swallow felt like a dagger in my throat so sleep was NADA...they FINALLY gave me something stronger and I was able to at least suck ice chips..everytime I fell asleep, they were in there waking me up..lol..i could not wait to get out ..I came home and throat is still sore to be honest and my angio site and entire top of leg all the way around is bruised quite badly..all I can say is I pray this took care of the problem as I refuse to go thru all this again...they want to do an angio on me in 6 months all the way back up there again..i think I will take my chances that all is well..Im just soooo done with all this and so is my pocketbook...It still makes me sad that I couldn't get proper care in my home town where we have 2 huge hospitals..thats just not right,,Anyway, glad its done ..Thank you again so much for checking in on me..
Well what a very brave lady you are ... and like me your Annie would have certainly ruptured!!! We’re both members of the lucky club!!! I suppose it feels traumatic even more as it’s such an unusual position to be in and so vulnerable!!
I also had a whopping big bruise at angio site and down my leg also discomfort for a while.. but it’s got better over the months and all I think of now is that I’m fixed for now and in a better position and certainly emotionally in a better place.
Best of luck with your continuing recovery. One thing I do think of is that more or less whatever I have to face in the future I feel confident that they can sort me out. Dont get me wrong I’m still very scared and yes still need 3 diazepam for a blood test but this is a journey like lots of other things in life 👍🏻👍🏻👍🏻
Keep in touch and let me know how your getting along
Best regards🥰
Andrea x
Hey Andrea,, Hows it going ? Hopefully staying happy and healthy !! I was wondering if you could tell me what to expect in the future ? They were VERY non specific about further instructions at Mayo...I don't even know how long im spose to be on this Plavix/aspirin regimen..Im pretty sure the dr. said i'll see you in 6 months for a follow up angiogram..?? I was in too much pain at that time to argue with him..I know 1 thing, that's not happening...I refuse to go thru another angiogram, especially while conscious..I think a MRI or CT will be sufficient to check it in 6 months and tho I HATE that dang IV AND that contrast they run thru yur brain, at least I could have that done at the local hospital..It cost me over a Thousand $ just in Gas, Meals, & Motel rooms for my son and I for the 2 trips up to Mayo and back..which was equivalent to 2 nights in a rooms for me and 3 for my son...Cant wait til the medical bills start rolling in..Im a grandma raising my grandson w/ a monthly income of approx. $ 1400 a month- this surgery took every dime of my savings...It just kinda feels like I paid for a dead horse here..i keep having to remind myself that I COULD have had a rupture,,thats the only thing that pacifies the pain of being completely broke because of this stupid thing..ugh !! I think im still suffering depression over all this- probably wouldn't be if I didn't have so many other ongoing health problems...I tell myself everyday - MANY others have it a lot worse..I think its hard because I long to be happy and healthy like all my older siblings..just enjoy life ...oh well, gotta keep on keeping on..hope all is well with you !!
Hi there Scaredsilly
Glad your doing ok since your op.. one thing to remember ANY brain surgery is serious and has to be treated that way. I was recommended to stay on aspirin for 3 months but my surgeon couldnt stent mine as I had a resistance to the blood thinner. I will find out on my follow up 17th Dec how satisfied he hopefully is with the result of what’s been done so far.
You should have surely got a follow up plan of neuro nurse appointments follow up MRI etc and an on going plan
All hospitals differ here and have different policies.
I’ve only had follow up MRI’s (2) since my op in May but perhaps it’s because there was no stent. Angiogram gives a clearer view of what your blood is doing around the stent. Cost is of course an issue in the US which is a big concern.
The only thing I can say is that you can’t put a price on your life and you only have to read some sad posts to see mortality is high in this often fatal condition. I witnessed this fatal scenario in my my Mum and good friend. Just passed away and didn’t even know they were going to have a problem.
I know the money is a terrible concern for you but you are so fortunate to have been given a chance to live.. as I have❤️you can now enjoy more years with your siblings.
It is a traumatic thing you’ve been through and feeling a bit low and especially vulnerable is a common thing.
Me.... I’m very good thanks and watched a lady on TV the other day having an aneurysm fixed. It makes me emotional to watch... I feel humble and grateful that I’ve been saved unlike others.
Your very early days in with all this and come so far... stick with it... your feelings will settle down in a few months I’m sure.
Regards Andrea xx
Thank you so much Andrea...once again you have gifted me w/ encouraging words to embolden me and encourage me along this journey..You are so brave and I admire your attitude which is so much better than my own...I think you are right, I need to give myself time..this whole experience jus still seems so surreal to me...I know I should not grieve over $ lost on all this when it could have been my life...Im so very sorry about your mum and friend...its heartbreaking ...I get a bit discouraged now because people just assume im all fixed when I feel anything but...I have had a lot of strange things I do and don't even realize it..i am almost afraid to use the stove from at least 4 mishaps thuispast week..I am definitely Not allowing myself to light candles after leaving 1 lit when I left the home,, im learning when I cannot find something important, to 1st search the fridge, then route thru my trash- im struggling doing my checkbook and other simple things...Is this all normal ? Will I get my brain back fully someday ? The hospital sent me a card to carry w/ me for 3 months stating I had an angio seal in my groin artery..I was told nothing of this at Mayo, nor much of anything post op to be honest..the surgeon didn't have much bedside manner to say the least but I guess his expertise at what he does is my reward...Im extremely shocked at the brutal bruising around my entire thigh..they must have had me pinned down very tight during that 2 hour surgery...oh well,, im just going to try to slow down a bit and pray all will stay good so further treatment will not be needed..I will be thinking of you Dec. 17th and praying all goes perfect for you..please let me know ok ? Thank you again for always responding and getting me back on course..You are a great inspiration w/ a beautiful kind heart..Please know how much I appreciate you...Nancy J...
Hi Nancy
Thanks you for such lovely words!! I guess I do consider myself brave but believe me it’s taken years to get to the point of gathering myself for the dreaded coiling!!
You’re doing just fine.. and what your feeling is completely normal.
I was really what can only be described as ‘muddled!! ’ when I came home and for the next month or so.
Felt like everything was going on around me and then the fatigue was quite something. From a night owl sort of person I was suddenly happily trotting off to bed at 8pm!!!
It didn’t bother me as everyone on this site and other mentioned the fatigue. Over the months it’s improved massively and only till recently getting together with friends with lots of different conversation exhausted me also.
Be kind to yourselves you are literally only weeks out of surgery.
I too have had tremendous bruising and even now can just see the outline of my bruise (from my surgery in May!!!) The problem was that I too wasn’t informed about the angioseal and when I sat up to wash the next day I felt a (pop!!!!!)
I was rushed now for an ultrasound and it was discovered I had a pseudo aneurysm at the site.., I was again terrified but took my lead from how concerned the nurses and my surgeon were. It’s a common thing and again they have way of dealing with it.
The seal dispersed after 90 days but I only found that out yesterday.
Like you I do feel that they just seem to regard you as fixed!! Well guess you are👍🏻👍🏻it’s just that
1. We feel so delicate
2. How can something so horrifying be so straightforward.
My appointment on the 17th is looming and on my mind. I know though that whatever course they decide on I will go with...please don’t think I will go willingly I will be as terrified pretty much as last time. Especially the blood tests (which I still need 3 diazepam to get through by the way!🙄)
Have faith in these wonderful modest gifted angels that call themselves surgeons and never forget and know it’s $$ in your case but they however blase and detached they may appear, have you best interests at heart.
Have a nice day 😌and do something you like doing.. you deserve it.. treat yourself gently and quietly congratulate yourself as you too are so very brave.
Enjoy👍🏻❤️
Andrea x
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