ICU for 5 days-Glad to be back!

Did anybody miss me?? LOL I was taken to ER by ambulance last Saturday morning. I was blacking out, blood pressure 70/50, tremoring. They don't know for sure if this caused it(this is the second time it happened) but they ended up going up through my groin to my brain with a catheter and found a bleed in my brain. They said it it is a cavernoma that bled. Now I have to monitor closely for symptoms and rush to ER if I get any. Boy, and I was worried about fibromyalgia. Sure puts things in perspective. Has anyone been diagnosed with a cavernoma?

Omg! I thought it went quiet. lol. That must have ben very frightening for you! I'm so shocked. I've never heard of it but will look it up. What are they going to do? Have you got to have surgery?

Just got brief definition -

"A cavernoma or cavernous malformation is a vascular abnormality of the central nervous system. It consists of a cluster of abnormal, dilated vessels. Pathologically, it is red to purple in colour, appearing as a raspberry. Cavernomas contain blood products at various stages of evolution and are usually less than 3 centimetres in size."

That sounds so serious I am really worried for you now. So you have to keep an eye on headaches getting worse and dizziness now (which you can mistake for fibromyalgia), See this is what sucks about fibro. You didn't notice that it was something else until you had a serious problem. Thats awful for you. Any time you get a problem I would be straight rounds the docs or down the hospital.

I'm sorry you have got so ill so quick. Please keep us updated so that we know you're ok. I hope you have a supportive family and friends who are there to help you. I wish I lived closer so I could offer more support.

Love and hugs

Jo

xx

What an ordeal! What a dx! Honey, I have had one grandkid or another for the last 7 days, having a hard time keeping track of myself, so no, really hadn't noticed you missing, but so glad you are back!

Jo gave really good info on it, and as a nurse, I know that you are well versed in the human body, but here is a link that says that you can have more than one, has something to do with the malformation of the 7th human chromosone! Whew! You live alone, right? Gonna need to be very careful! Lets hope there are no more, ever!

http://brainavm.oci.utoronto.ca/malformations/Cavernomas_index.htm

We are here for you anytime!

With love and concern,

SK

Thanks guys! I think they said it was towards the surface of the right rear parietal lobe of my brain, so better to be near surface than deep. I had been getting some headache in my temples and forehead last week and that was unusual since most of fibro pain comes in back of my head.

So, SK, that link said 7th human chromosome. I have two genetic disorders already, so not surprised I might have others. I know it all comes from mother's side of family, they have all kinds of strange stuff going on. I always joke that my anscestors must have married their first cousins and passed down all these defects. Only kidding. :")

I do live alone, but I just need to have a phoned to me at all times. Or maybe I could get one of those things that you hand around your neck. They will scan my brain again in three months to see if it changed any. It's just one of those things. If it keeps being a problem, then they can poke a hole in your head and remove it. Fun.

Good thing I have sense of humour.

Hugs,

Allergic

Great big hugs to you, Allergic. I am so sorry to hear what you have been through. Many prayers are coming to you, along with gentle hugs. Let us know how you are.

If you look close enough into any family, you will find it! Something out of the ordinary or just downright horrendous! Mine seems to be the autoimmune, the arthritis being the most debilitating thus far. Who knows what kind of mechanics I will need before it is all over! We have to laugh it off, do what we can to get through this the best way we can!

Cheers to the laughter! Makes you want to have a 'slug' or six! LOL!!

Hugs back to ya, sister!

SK

All of this ^^!

Whoa, Allergic! You poor thing! I wish I had known! I was up one night with Eeyorelover, on while she was in hospital, I would have stayed up for you too!

Honestly, maybe one of those "I fell and I can't get up" thingies would be a good idea for you. And also another idea is to have someone call and check up on you each day. An ill friend of mine does that.

I didn't really know that quite such a condition exisited, nor an abnormal 7th chromosome causing it. I guess you didn't either until recently. Is this particular disorder something that runs in your family as well? Or ar you the first?

As Jo says, sukks to have fibro, cause you don't always know when something else is up. I'm glad that your fibro headaches differ from this kind and I hope you NEVER get it again! I too would have been frightened to death to experience it but you're one brave gal!

I'm just glad as heck that you're okay and back with us! I hope you're feeling okay now and this business is resolved once and for all.

Hugs!

Petunia

Thank you! especially for your prayers.

allergic

Oh thank you Petunia. I wish this crap was over, but it's not. Gotta go for another brain scan in three months to see if the blood reabsorbed. Hopefully nothing happens again before then. I hate hospitals. I don't think anyone in my family has this, ugh, that they know of. You wouldn't know you had this unless it causes a problem. Scary. From what I read and doctor told me that they can be there and never do anything. Of course I have a bleeding disorder, so I would be more prone for it to bleed. That makes three genetic disorders so far for me. Hmmm. Was something in the water??? :") when my mom was pregnant. Kidding.

Yeah, having fibro makes it so hard to know if something else is wrong. Oh well, I'm still here. Maybe, like you said, one of those thingies around the neck might be good in the house. What if you're in a store shopping and black out or seizure? I put colored tape on the 9 button and 1 button on my cell phone so I can see which buttons to push easier.

Thanks again,

Hugs,

Allergic

Allergic, I'm not sure what happens; I'm unsure if the button is mobile, that is, if you can take it to the store with you and if it would still summon the police. If it's only good at home, then I'd suggest getting a medical ID bracelet immediately so anyone finding you would know immediately. Yeah, that's a REALLY good idea to do with the phone, too. And what about putting 911 on speed dial too?

I'm so sorry you've got to go back to the hospital for another brain scan, but it makes sense that you're not just discharged after this event with no follow up!

I didn't realize that bleeding disorders could affect the brain. I guess it makes sense. I have a cousin with one but never really asked her about it and she never talked about it.

Next time you go into the hospital, feel free to chat with me on the chat line if you want, to kill time while waiting. I'm on Eastern Daylight Time. I'm happy to keep you company if I'm up at that time.

Wishing you lots of good medical news in the upcoming months, Allergic! Let's hope this problem has been licked, never to return.

Hugs,

Petunia

Wow so scary, I hope it doesn’t happen again, and I hope you don’t have to go through all that again. I know it is very easy to blame things on your fibro, for me most of the time I just figure it’s my fibro or asthma. So glad you are ok. I think the emergency button is a very good idea, but I do think they only work in your house. Good luck and prayers.
Becca

Honestly, if I couldn't laugh about this stuff, I would be in deep doo doo!

Thanks, I know, if I'm quiet, there's defintely something wrong. :")

I'm looking into the emergency call thingies. I think, too, that they only work in the house.

Lmao. I love saying doo doo! The most common thing I say is "I feel like crappy doo doo's" lol.

Thanks Petunia. You're so nice.

Hugs,

Allergic

Crappy doo doo. That's like double doo doo, really bad doo doo. Like being "knee deep in alligators and can't find the swamp." lol

I tried for the longest time to get my late mother-in-law one of those, she resisted, and refused time after time. I had a feeling about her one morning, it was just day break, knew she would be up, well, no answer, called and kept redialing as I threw clothes on.

Keep in mind she always had the home and cell phones with her at all times, thought that was 'enough'. She had fallen while trying to get up from a recliner, she was flat on the floor with her head to her chest wedged into the front of the chair, the phones, well, of course, they had flown across the room.

Later found she had a stroke or a series of them, had she had the call button, they would have known by body position that she went down, stayed down, we never did find out how long she had been on the floor, so perhaps she could have gone to ER and had the affects reversed, HAD she not been so stubborn, instead according to her living will was taken off life support...

I hear ya SK. I know that you just can't get to the phone sometimes. I barely did last Saturday and then could you even be with it enough to find the right numbers to push. I was checking this one out as possibility. Looking into other options too. Some of those services are really expensive. I've been trying to read the reviews.

http://assistivetechnologyservices.com/emergencyconnectsystemwithwristshakeralertpanicbuttonpackage.html

Sounds promising, just have to wonder about their rep and about hidden costs, I guess, but better than the ones with monthly fees, I think. Wonder how much the batteries cost?