Hi folks,
I have been a member of this great site (thank you moderators!!) since Sept 2017.
At that time I was diagnosed with a 24mm aneurysm over my left eye, It was an accidental find when I had a CatScan for something else.
It had not been symptom free as I had lost sight in my left eye. However. it was assumed that I had had some sort of mini stroke which had blocked off blood supply to the eye nerve.
But I had not had a stroke. instead I had a large aneurysm and the optic nerve was wrapped around it.
The aneurysm was dealt with by 3 PEDs ( Does this mean that all that platinum in my brain box is valuable ?grin)
After it was clamped up and I was in âOne Flew Over the Cuckooâs Nestâ aka the High Dependency Unit, my eyesight was magically restored.
Oh yes, I better tell you about the High Dependency Unit. This is where they shove everyone who has had some sort of brain surgery. It is where the Nurse Ratcheds of the medical or psychiatric persuasions naturally gravitate,
It is here where they get their jollies waking you up every hour or so and ask you a series of questions which you can no longer answer, such as,
âWhere are you?â
âWhat is the date?â
âWhat is your date of birth?â
The only joy to be had during this incarceration is listening to the answers of all of your other captives and having a superior snicker to yourself because at least YOU know which hospital you are in ⌠and heck! At least you know you are in a hospital and not waiting to be served in some hardware store like the guy next to you!
And to make it even more bearable you get your own back on the most terrifying and most dreaded Nurse Ratched of all.
She is the one who wakes you up in the dead of night and screams in your ear:
âWho am I?â
It was the night before I was allowed to escape that Nurse Ratched woke me up in the middle of the night to ask me the dreaded question, âWHO AM I?â
This time she had another nurse with her, cuz it must have been change over time. Without taking a breath I answered"
âYOU ARE EFFING NURSE RATCHED!!!â
Well, anyway, after I was discharged I developed the headache from hell. It was so bad that I was hurled back into Emergency dept. The clot which formed as part of the treatment had completely choked off my eyesight. This meant I was pretty well totally blind for months and so most of 2018 was a write off.
However, although I have not got all my eyesight back, what I do have (although small) is better than what I had before!
My last angiogram showed that the dreaded nasty was completely gone and this leads to my actual question - what are the chances of a second aneurysm occurring? Are there any stats on same?
W:)
Iâm sorry I canât answer your question, but I sure liked your post! I totally understand your story of feeling as though you were in prison, and not just any prison, but the prison from hell. They had my legs tied together and to the end of my bed frame so I couldnât move around. I had many escape plans, but no phone, no computer, just the prison. I hope you and I remain free of 2nd aneurysms.
Wishing you a happy life!
Jackie
I too got a chuckle out of your âNurse Ratchedâ
At may last pre admission I asked the staff if they knew of those A/hole patients who donât listen to the nurses?
âYesâ she said. Nodding with a roll of the eyes
âWell, hereâs fair warning⌠⌠Iâm one of themâ I told her
She glared at me.
âwhen Iâm in pain I tend to hate the world AND when you wake me at 2am to check my obs (observations), You will be sure to know how much I appreciate itâ
She got the message.
They still woke me every 2hrs as per normal, but had been pre warned, my âshitty liverâ condition was nothing personal. I simply HATE hospitals.
As for the stats, from what I understand it is all very individual. Some people are lucky enough to have the single one and never have another issue, where others can be unfortunate enough to have two or more. Some can have an underlying annie for years and have no symptoms. Some can have what is deemed a âsmallâ annie which the drâs consider insignificant but can cause no end of issues. Iâm often stating ââŚthatâs a âhow long is a piece of stringâ type question. Thereâs just too many variablesâŚâ It is all very individual.
Merl from the Moderator Support Team
Oh Woofie,
The stories we could all tell! My 1st coiling, (because of a rupture) my nurses were told I needed to lie flat and not move my right leg or groin for another 2 to 3 hoursâŚthey heard the wonderful # 72!!
3 DAYS!!!
And I am so grateful to be here to tell that nightmare and many others! I have tons, after 2 coilings and 2 clippingsâŚ
Do you have any vascular anomalies? I have an incomplete circle of willis. Therefore, where mine stops, near the ACoA, Iâm prone to have aneurysms. 2 so far. I now have to have yearly neuro-angiograms. My head may glow in the dark before another aneurysm appearsâŚand Iâd rather know. I think Iâve had more than a couple dz. angiosâŚ
And as, I think Mel saidâŚitâs all about the individual person.
My hope for you is it ends with this one. I hope you regain your eyesight as well. I canât imagine.
Take care and keep your sense of humor!!! It really helps me esp. when I throw myself a surprise âPity Partyâ!!
Mary
Thanks folks
As to my eyesight, it is âAs good as it getsâ to paraphrase a movie title. The negatives are that I can no longer drive a car, legally, or work - unless I can find some online work. The positives are that I can see really well forwards. I just canât see sideways. This means I am a WMD, in supermarket aisles, for exampl, as I leave the contents of shelves on the floor in my wake grin
The other good thing is that I qualify for a âblind pensionâ, which will help to pay the bills.
No Kipkate, I donât have any vascular anomalies, to my knowledge. That sucks about your problem Your femoral artery must be permanently complaining
And Merl I reckon our Nurse Ratched needs to go visit you for a cours in behaviour modification grin
Hey Woof.
The long and short of it is, I didnât ask, because I didnât want to know.
And 9 yrs. later, to the month, they found not one, but two more aneurysms, in nearly the same spot. I am âunder observationâ, as the two new oneâs are 3mm and 2 mm respectively. My original was 9mm.
The likelihood of recurrence is pretty high in patients who have experienced one. I donât recall any of my Doctorâs specifically stating that to me. That being said, like I said, I never asked. I can say that I suffered from memory loss for quite a while after surgery, and sometimes to this day! Words I have known, and used all of my life, will suddenly escape me. Did they tell me? I canât recall. I know they were adamant that I quit smoking, both then and now. After 45 yrs. on the these infernal death sticks, Iâm finding very hard to quitâŚ
I also donât recall my first 3-4 days in the hospital. My first memory was of waking and feeling more pain in my neck (apparently, they accessed a route to my brain through my carotid artery), than in my head. Initially, at least.
I too, experienced vision problems that led to my original diagnosis. This time around, I can feel pressure behind my eye, and have lost some visual acuity, but am otherwise symptom free. *The two new ones were found after a CAT Scan on my neck for severe pain and headache.
My suggestion is to get a definitive diagnosis. Since your first was so massive, you may have experienced coil failure. Donât waitâŚtime is of the essence.
May God and His Angels watch over you. Psalm 91.11
<3Peg
I have often wondered this same thingâŚwill I ever get another? Thing is, after 31 years, nothing else has happened other than the side effects of repairing the initial aneurysm. I sometimes feel that thereâs something else stirring up in my head. I just wish I knew what it was. Then, I read what others say here and realize itâs normal.
A friend of mine has a daughter thatâs about 28. She is currently getting ready to have her FIFTH aneurysm repaired. I think itâs all about the individual person. It never hurts to have ours checked out periodically to cover our butts.
Thanks Rosie and Peg
After my last angiogram in September. I was told that the aneurysm was completely gone.
I havenât heard anything since, so I assume all is good, but I do wonder if I have to go for a checkup or whatever in the future.
I have to see my GP for a"drug run" ie prescription renewals and I will ask him about it.
Woofie,
Some/many surgeons have the attitude (or belief) that once itâs âfixedâ thatâs it, BUT, that is not always the case. They can come across as fairly dismissive or non chalant about it all. But if you have concerns, if you are worried then ask for a scan, even if itâs only to put your own mind at rest. Once you have been through such a predicament itâs pretty damn normal to be concerned. Hell, I was and still am to a point. I get severe headaches each and everyday, Iâm often thinking âIs this it? Is this the one?â
But over time I have learnt itâs better to âbe aware, not alarmedâ
I now look for a progression of symptoms, if things are getting worse, itâs time to act.
My former pcp was very dismissive to the point of being damn rude, the result of following his advice was I ended up in an emergency situation. The surgeon was very angry that I hadnât followed up with him, but to see him I needed a referral from my pcp who made out I was exaggerating it all. So I was in a âno winâ situation. By the way, he is no longer my pcp. I ended up making a formal complaint in regard to his attitude.
Merl from the Moderator Support Team
Thatâs appalling behaviour on the part of your ex pcp, Merl!! I am glad you found a new one:) I have heard that due to medical insurance practices in the US, it is not easy to swap pcps and specialists. Is that right?
Thankfully I have a wonderful GP (PCP). In fact I dread him retiring. Besides being very caring, he has a great sense of humour ( an essential in my book!) and over many years we have developed a good friendship. Also, I have been lucky in the choice of specialists.
My worries and unanswered questions are partly my fault and partly due to a mixup with appointments. For some strange reason my post angiogram appointment was scheduled before the angiogram/ Logically a new appointment should have been scheduled after the angiogram, but wasnât.
I should have phoned to query this but being a shameless wimp, didnât as I know the specialist team is flat out busy with serious emergencies 24/7.
But, you have encouraged me, so tomorrow I will bite the bullet and phone grin. Hmm, I hope I donât add lead poisoning to my ills!
Hey Woofie,
Like you, Iâm in Oz. Iâm actually in Adelaide. I say pcp so that our North American friends know who Iâm talking about.
The reason I was seeing the ex-pcp as my dr was because my former Dr retired and he took over my retired drâs patient list. The only reason I was at that particular practice was due to the locality close to home.
Believe me, I completely understand the ânot botheringâ, BUT I must also say that leaving things, when you know that there is an issue, is not a good thing. I say this as I did the same thing and ignored it. But when things got bad, they got REAL bad.
Bite that bullet because other wise lead poisoning may be the least of your concerns lol. Itâs much better to deal with a smaller problem today than to leave it till tomorrow when that small/manageable problem may not be small and manageable any more.
Merl from the Moderator Support Team
Iâve lived in the States all my life. Insurance companies, both private pay and government supported have a list of approved doctors, specialists and hospitals. If one chooses to go to a Dr or hospital not on the list, they pay a bit more. General Practioners try to balance their Medicare/Medicaid (Government supported) patients to their private pay patients. I switched from one Primary Care Physician to another post SAH, I had no problems. When I eventually received my disability and eventual Medicare, my doctor kept me. I have not switched out any specialist, save one.
You have a writing gift⌠lol. I go in in 9 days for a cerebral stent. Thanks for the post it brightens my day⌠when Im in ICU Ill remember this post, hopefully!
Hi Woofie,
You absolutely have a gift to write. Your story sounds exactly like mine happened. No one called my mom to tell her I was being wheeled down to surgery. Their dragon breath constantly in your face along redundant questions. I always wondered why no one ever asked me how I was feeling and now I know⌠itâs not in the job description.
I would have to agree with it being individual for everyone. I just happen to have another annie on the exact opposite side of my brain from where the first one slow leaked. They are 18 years apart.
I pray you never hear to experience another aneurysm
We always must have yearly checkups to monitor whatâs cooking in our noggin, ugh!! As to the wonderful ICU witches; I recall every 15 mins 1 or 2 would tear in, pull up bottom sheet, pull off nasty hospital socks and âtake pulsesâ in ankles, then proceed to put socks back on every which way, cover toes with sheet then proceed to arm, pull down that sheet, wrap around cuff for BP and heavens know what else, oh yeah temperature too. Then down goes that sheet and off they go telling me to sleepâŚright!!! until another 15 mins and we do it all over again.Of course I forgot the questions tooâŚ
Hi, All these stories have really helped me this morning. I actually suffered a reptured brain aneurysm in April 2015. I literally stopped breathing and died in my kids arms. Thankfully they performed CPR and i was rushed to the hospital where the performed a emergency coiling, 3 months later they had to clamp a second 1. I remember waking up in ICU to those same questions⌠Whatâs your name??? Do you know where you are??? Thankfully I woke with all my facilities. I have suffered some memory loss. But i wonât lie they didnât tell me everything. It was almost a year before they even told me they didnât go away. In these last years Iâve struggled but i will say having this outlet with people who actually know what Iâm going thru helps. Both my kids suffer a little PTSD from the trauma of everything and Iâm thinking i do as well. But I all things considered Iâm truly a walking miracle. I thank you all for sharing you journeys.
Merl,
You are SOOO right and I am following your advice - thank you
Moltroub,
thanks for that input. It sounds pretty good
Deborahssong,
Sending you good mojo for your procedure
Sorry to hear that Cynthia_Fenn. I think the Nurse Rachets are a global curse. Besides not asking you how you feel, I just wish they would not act like old fashioned teachers punishing you for some misdemeamor. I donât think they realise how anxious and panicky you already are, without them making you feel worse
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