Home, BUTTT, Grrrr NOT a Happy Camper

General
1

Hey all, I had my coiling done, on L C/Artery, small neck, no stent, thats good. Stay in hosp maybe 3-4 days. Home, but........

I have headaches so I take some Fiorcet, occasionally, takes the edge off. BUT I am not right, I am pissed off, I am bruised beyond belief, actually, if you saw me on the street, you would ask me if I were safe at home, so Plavix is stopped.

I think at anytime an assault on the brain there are residual effects and also major changes. One thing, that is really weird, I can't sleep easily either. When I close my eyes, there are visual effects, colors, lines, bright objects, and that jacks me up more. Last night was horrible, tooo many tossing turning, trying to sleep, and each time a new vision.

Has anyone had any weird visions, or am I going crazy?

I am so frustrated. I don't know when to go back to work, I don't know who to tell this too, I don't know anything, actually. I am upset all the time.

I also take norytriptyline 50 mg per night that is supposed to help w/headaches, those I got from a neurologist prior to sx, after diagnosis.

I feel abandoned and lost, mad and sad and do live alone. LOVE my dogs, that as of late is the only thing that matters.

Anybody?

And this is just part of the bruising, I have to wear gloves, my hands are disgusting. GRRRRRRRRR Plavix

CB

2

my mom use to bruise alot from meds, it gets better. I had a rupture so my recovery was different to say the least,you might have a side effect from meds with those visions talk to your dr. Make a list of new meds and talk to your dr to be safe, the healing process is tough.It is a emotional rollercoaster but it would get better.

3

I know just exactly how you feel. I had a ruptured annie about 1 year ago, & then just a month ago more surgery with a stent. Its the toughest thing I have ever had to go through, with the healing process. I think I've been frustrated for the past year, but it gets better. If you need to vent, this is the best place to vent, because everyone understands. When I came out of the hospital this last time I looked like a pin cushion & the bruising was horrible. I'm still on plavix, but the black & blue marks are getting better. Please hang in there, it does get better & please feel free to vent away.

Thinking of you.

Aggie

4

Cynthia, so pleased that your surgery was a success and glad you are home. Please remember to take care of yourself and rest rest rest and take it easy and try to be as calm as you can!! I have no had any of the symptoms you've described, but my annies are both in the ICAs at the ophthalmic artery.

I will keep you in my prayers and hope that you have a speedy healing!

Linda

5

Cynthia,

I'm glad you are home and the coiling was a success. I take plavix and bruise really easy. It seems to be some better the longer that I am on it. I have to take it through December ( 6 months post op). You just need to rest, rest, and rest. I took off 4 weeks before returning to work. I was feeling great then, no headaches and energy level was improved. Now, I have had to reduce my hours to 40, (i am retail store mgr) and stepped out of the position that I was in to assume less responsibilities. You sound like a very determined person, such as me, and I don't want you to over do like I did. Listen to your body and brain...it will tell you when you need to rest. My annie was ICA and I had liquid embolization.

I have been taking ambien for sleep for almost a year now..I'm hoping with less stressful position that I will be able to stop.

Just remember, life does improve. Headaches are better this week. I have had a rough time with headaches since returning to work.

God Bless!

Karen

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thanks karen

what is the liquid embo? I wonder how they determine that? I am determined, definitely Type A, and do NOT understand enough about this disease, to be settled w/what I have to do!

Rest? LOL I did stop working for awhile tho.

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Cynthia, Nortriptyline is a TCA (tricyclic antidepressant) and is the least sedating in it's class of medication. I suffer from chronic daily headache and take amitriptyline, also a TCA, however it can make you quite drowsy and so is beneficial for a good nights sleep. I did try nortriptyline and found it kept me awake, tossing and turning, and that is why I have stuck with amitriptyline for over 2 years. Perhaps it might be a good alternative for you to help you get some much needed rest? It's best if you don't take it to late at night until you are used it, otherwise you may wake up still a bit drowsy.

Best wishes

Wendy

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I think that we have to do our own follow ups which is frustrating.

I am going to my primary and will talk to him about the diffrences between the nor/and amit

I have a million questions, and today am tooo tired to remember what they are, I should walk around w/a piece of paper in hand. This whole coil thing in my head, ughhh, I think there should be an after care program for Annie ppl.

CB

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You sound like me in reference to resting. As I say “I don’t like to relax. Relaxing makes me tense.”

10

Did you have coiling with the stent? I have just started Plavix and have coiling and stent next Monday. I wasn’t expecting to look bruised after the coiling.

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Cynthia,

I'm so sorry you are having such a hard time. You were in the hospital 4 days?

I know that everyone bragged on your surgeon, but it doesn't seem as if he or the office are giving you any support. I am curious - I thought they only gave Plavix when a stent was necessary.

Nortriptyline has a lot of side effects. It can increase depression, weight gain, lots and lots of others. My daughter tried it for a few days for her migraines and I think that may have been one of the drugs that made her hallucinate. Some users also report insomnia. (I looked up to be sure). Look for reviews for it - my daughter could not take any of the trips because of the side effects.

I hope you feel better soon - you have not had an easy time. Give the dogs a hug and kiss for me.

Sherri

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Sherri

Weird, on the Nortrip, Neurologist said, it has anti depression in it. IT might, cause insomnia, which sucks, right? I can't remember how long I was in, 3-4 days........It seems like soooooo vague, I don't even remember talking on the phone, only meds, meds, meds, nurses, and that guy in the middle of the night!!

I talked to my N/S NP, she is having someone call me, the thing is I don't know if every thing I feel today is anything, or everything????

And for me, a TYPE A Control Freak, I MISSS work, I MISS my dogs at the vet, I MISS my co workers, but way to stressful right now. I know that. Grrrrrr

I think MGH has a support group going on, I can't seem to find that, and then there is one down the south shore, too, I would like to go, I am geared up to find them then I get tired.

Its a strange, thing these annies, and I too am babysitting one, that the doc says we won't pay attention to that its so small, I am going to ask him about that, when I go for follow up.

Madness, I think.

CB

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Hi Cynthia,

The BAF has helped me understand a lot about the recovery. I truly screwed up when I returned to work, and now I feel that I have taken "leaps backwards" in my recovery. Type A's...we never say never and don't tell me I can't do that! I have quickly learned and admitted that I can't right now and have to listen to my brain and body. That has just been in the last 4 weeks..I'm stubborn..lol I am spending my day off sleeping and trying to recover from the headaches today. So tired of being tired and not feeling well. I felt great for 10 days before I returned to work and I want so bad to get to that back.

Liquid embo is onyx hd 500, a glue like substance that was injected into te annie and hardens. My annie was wide necked and positioned where coiling could not be done. Cllipping was my other option, but, I went for the less invasive. I have angio in Dec to make sure this is still filling the bubble.

Take care and slow down..I know it's hard to do.

karen

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Cynthia, I had bad reactions to plavix...PCLP and neuro did not want to believe it was... they called a white strip/bulge with a red blood streak encircled by bruise-color... initially I thought I had flu/cold; then the "white strip " and the wildest vision; thought NY fireworks displays were implanted alongside the off-label stents ...

When I am fatigued, I occasionally get the streaks/flashes...6+ years later.

Re: returning to work; what did /does your employer expect? What are your benefits, i.e. sick pay/whatever. Can you try part time to monitor your fatigue, your function requirements and safety?

Safety is two-sided if you have balance loss issues which could cause a trip/fall on-the-job...

Same w/driving...public-safety a/w/a personal; all states have some driver health restrictions; for which you need your MD input... ask your neuros first on all of this to know what you can tell your employer; your DOL..

Best Wishes and prayers for your success getting info from your neuros...and overall, succes in your recovery

Pat

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hi cynthia,

sorry to see ur having such a difficult time...i finally had to try an anxiety med to calm me down...i was wound up tighter than a 3 day clock. it has helped alot so that ur mind doesnt constantly race..ativan is wat i take...im so glad u found this support site..i wouldve been lost w/o it..lol..i also felt the need to increase my faith n the big guy up above.."let go and let God handle it" it has helped to diminish my fear and increase my confidence that everything will be alright..i know he does not leave us when we need him the most..i know ur gonna be fine..just take it slow n easy, try not to rush..hugs n prayers coming ur way sweety..take care

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Hi Cynthia, hope you had a better day today. I, too, had Dr. Ogilvy for a clipping of an aneurysm on my left carotid artery in April. I have had a number of problems since. I was back in the hospital in late May for a staph infection, PIC line for antibiotics, oral antibiotics, head shaved , etc. Throughout it all he and his NP have been very receptive to answering my questions, looking at my wound which wasn’t healing correctly, etc. Just this week I found that the infection had resurfaced at the incision site so it was back to Neuro one more time for another round of treatment and next week a followup at Infectious Disease at MGH. Dr. O and NP both took the time to see me this week. I just keep thinking positive thoughts and am thankful for still being here among my family and friends. I pray often for things to get better- especially for my vision to improve… I cotinue to rest a lot. I work in an elementary school and had the summer off and returned to work in September. I still find I need to take naps everyday, am still fighting the infection and waiting to have a carniology early next year. Prayers help tremendously … My prayers are being said for you so that you may heal and feel better as the days go by.

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Hey there sweets… Smile… we all love you…

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Hi Cynthia-

One thing I've learned from my experience and all the reading I've done here is that recovery is SO varied, no matter what the procedure. I also had coil/stent, but it took a while to bounce back. I didn't have the visuals like you, but had this feeling that I couldn't move my head (wasn't stiff.....just a hard to explain feeling) - I felt really off, really tired, and lots of headaches in those first weeks

I'm now almost exactly (Oct 29) a year out from surgery, and I can honestly say I'm doing really well and feeling really well - biggest concern is that I have 2 others being watched. I have a headache tonight....but sugar is the culprit!

It takes time, and there are so many odd symptoms that different people experience - all worth mentioning to the docs, but so many odd things seem to happen when poking into the brain.

I do think you will feel better soon - it's all scary though, don't we all know it!
xoxo

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I am feeling very low and tearful today, not sure why except I miss my kids so much, I have an appointment tomorrow with the eye surgeon. hping he will tell me my eye surgery was successful and I will be able to fly in a few weeks’ time and catch up with everybody back in the UK. Meanwhile I hope you are all doing great, any cheerful messags would be so much appreciatd! They have stopped my physiotherapy because I can walk OK now, but my hands are still not right. I know I should be counting my blessings, my husband keeps telling me, I had a basal arterial rupture back in December and apparently it is the worst kind, then I had a stroke and then meningitis.Sally xxx

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Sally,

Best wishes and prayers for your recovery; and, your eye surgery results. Looking forward for your upcoming flight and cnnecting with all those in the UK.

Hugs,

Pat