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How do I live with an aneurysm?

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Unread 03-26-2012, 06:17 AM   #51
cass3765
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Hi Ladies

Yes Lynn 2 days and counting. Im still a bit sore I have a little lump, n a tiny bit of inflamation but I understand that it will go away in time, never the less i will ask the surgeon on Wed.
Hi Ginne,
Im so sad that u too have to go thru this, I know how u feel when u say ur sick of not working to help urself. I feel the same way too. Heres hoping the Dr ur son wants u to see will be of more help and also show u a little more compassion. Seems as tho this other Dr wasnt trained well in bedside manner maybe, just guessing.
I dont really understand how ur health system works but I do hope that u get some help soon.
I chat with Darryl a bit. He is a lovely man and always puts a smile on my face with his little quips n jokes with his medical team.
Lots of big hugs to u all, Ill be back in a few days with all the surgeons news. Hoping it will be all good, fingers X'd.
Cass
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Unread 03-26-2012, 08:38 AM   #52
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Hi Cass,
Welcome to Neurotalk, I am a PCA survivor. My annie ruptured on January 18, 2011. I had a crainiotomy clipping. Thus far, no physical impairment in regards to loss of activity of limbs (stroke like injury) but, I've experience some other stuff (I think seizure like stuff) that has not been diagnosed. I say dont live in fear. Perhaps bring friends in and exercise in your home just as you would in a class. I still get headaches also, thankfully tylenol helps or a good nap. I just wanted to welcome you and wish you well and hope that you feel better soon. God bless, HUGS! This is a great forum and Im sure others will chime in and perhaps provide some good advice.
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Unread 03-26-2012, 06:20 PM   #53
ginnie
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glad you are in touch with darryl too. I am working on getting help. The doctor who said I needed surgery, evidently doesn't want to do it. medicare doesn't pay him enough, thats really what is going on. In the mean time my pain doc doens't want to treat for this additional pain. Well I can't get the surgery if I don't have a surgeon, so I will ask for a referral to an orthopedic guy for another opinion. I didn't want to do joint replacement under a local as he said anyway. That doesn't set well, and would shoot my BP through the roof. Is he crazy? I had my tooth pulled and was put out...humph......
So we all go through these issues. I am sorry you have the annie problem like darryl. It does make me have a great deal of empathy for all of us on NT. Keep in touch and let me know how you are doing. I am glad we have this site to give each other comfort. Take care cass. ginnie
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Unread 03-30-2012, 12:20 AM   #54
cass3765
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Today I fee like the class clown... or the hospital clown. I had my app with the surgeon. Or should I say with the registrar handling my outpatients appointments. Just to drag things out my app was for 3pm. I wasnt seen till 6.15pm then I was told they screwed it up.
I was to see my surgeon at his private offices. 1. I cant afford his private office at a cost of $372 for first visit, hence going thru outpatients. 2 he no longer see his patients at outpatients. I now have to go on the long list, a few months as he is well booked up. so back to square 1 we go.
It just gets better and better. On days like today I could just neck myself n be done with it. But Im chicken n love my girls so its just a passing thought, dont panic. Mind u it has sunk me into the depths of depression, which just shits me to tears as I cant continue to live in limbo. A whole year will be wasted by the time all this comes around. What I assumed would be over by xmas, looks like only starting about then. I guess the only plus in that would be to be one of the first in the brand new hospital. wow (insert sarcastic frown). It opens Dec 2012.
Grrrr Arrrgh!
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Unread 03-30-2012, 08:57 AM   #55
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This does not seem humane at all to do to you. It makes me angry too, and I am not even the patient. Can anyone intereven for you, or start writing letters to get you in sooner? Waiting like that could drive anyone to the horrible depression. That alone is a terrible thing. Cass I so much want you to get the help you need. Is there a patient advocasy group in your area? Can you go up the ladder so to speak to get into the situation you are actually recieving help? Maybe SDFencer can give you some ideas, he knows a lot, and has access to a great physician. Maybe going out of state, to where this doctor is, would be better than waiting just to start the whole process come Christmas. It can't hurt to ask him if he has any ideas for you. My best wishes and prayers are with you Cass. Don't allow the depression to beat you up. I am hear to listen to you anytime you need a friend. I battle depression too Cass, and my own situation isn't so hot either. Take care of yourself, and write to me anytime you care to. ginnie
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Unread 03-31-2012, 06:38 AM   #56
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Hi Cass

I am so very sorry that this is happening to you. I truly believe that in comparison to other countries we have a fantastic health system - but that doesn't help you in this situation.

Please know that I am thinking of you. Thinking back, I don't know if my neurosurgeon worked out of a public hospital. It's all crap - the public liability thing, and scheduled fees have screwed us over big time and lots of specialists won't work in public hospitals - especially if they deem this to be 'elective surgery'.

This sucks, and you are in my thoughts and prayers.

Hugs

Lyn
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Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993.
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Unread 04-25-2012, 09:17 PM   #57
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Hi all,
Its been a while since I have been here, I guess life is just getting me further down the drain. I have a new appointment to see my surgeon at his private practise, but we are financially screwed so I am going to have to cancel and wiat till the money is saved to see him. My disability support claim was rejected and I was told to come back in 2 years. My eldest daughter has moved out as she can no longer cope with my mood swings, the tablets Im on to keep the migraines away make me drowsy daily and I have been assessed as not being able to work for 12 months. I want to know what future ball they look into that tells them all will be fine in 12 months because Im damm sure nothing will have changed. My stutter will be there, my annies will be there, my inability to cope with life outside my home will be there, so what do they know that I dont? I hate our medical system, it makes the poor feel poorer and soo many are dying because we are pushed further down the bottom of their barrel for help. Life sux and really Im over it!
Im at logger heads every day with my relationship, my girls are suffering and I feel like life has finally stopped with no where to go.
Lynn I agree that compared to some countries our health system is good, but its not good enough. How can we be sent to hospital, given a Dr appointed by the hospital, put thru outpatients then told right at the end when u have exausted every cent u have that u now must pay for the last step to surgery? I didnt elect to have this issue... I didnt elect to have TIA's, I have worked my tail off and paid for medicare all my working life just to be shafted when I need a return on all those years I paid and never used the system. That is unfair and drives even the most cheeriest of people into the depths of depression and dispair! I dont know if I feel any better for ranting on here, but somethings got to give soon because I am at my wits end and ready to pack my daughter off to her fathers, send my partner off and find some cave I can curl up in n forget about life altogether.
Some days I wake up n wish my annies would just rupture so I can be dealt with, other days I wake up wanting the world to just fall into a black hole of nothingness. AAARRRGGGHHHH
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Unread 04-26-2012, 09:42 AM   #58
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:eek I so understand you, I really do. I know about no insurance, and being shoved down the line when you are sick. I lost all two generations saved for, and now my home is going to go too. Can't even afford the insurance to drive. I had a career, money in the bank, a home and a life. all was removed, because I got sick. Being sick should not be a reason why, all is taken from us. This after 30 years of work I ask myself? That rage I so understand. I was misdiagnosed, most likely because of mediare/medicaid and the doc. not wanting to do the MRI. so I suffered for 7 years. Right now, I am the same as you but with different medical issues. I lost family members too, got betrayed over a trust. sometimes I am so low, I can't climb out of the depression. Please keep coming back here as I do, seek us out as you have been doing. Keep expressing yourself, and if you can, pray. Get to a quiet place, alone, just with you and God, and try. find your center of calm. Rage just increases our levels of bad things in our heads as I have found out. Try to reach a place of calm just for yourself. I am here Cass to listen anytime you want. I come back here to NT and try to folllow those on the site who can lead by example and offer their strength to our suffering. I hang on for dear life sometimes. I am right now, as I face a biggie or two or three in my own life. You are not alone cass, don't give up, just come back here, and know you are not alone in suffering. I will keep you in my thoughts this day, as I face my own issues. You will be with me in my prayers. We both have alot of issues, and keep coming back here for help. I care. ginnie
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Unread 05-11-2012, 01:07 AM   #59
cass3765
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Im home from the surgeons appointment. Im now on the wait list, he will be clipping the 7mm as its now considered high risk as there is what looks like another annir coming off the first annie. Im really quiet scared, he has assured me that if this one ruptures then it will be a major stroke if not worse. The wait time is a few months so heres hoping it comes around fast as Im not one for waiting as u all have read lol.
The second annie is being looked at next year as its in a precarious place also and we arent sure which way we can operate. It has almost no neck and is very close to a major artery. Time to make a list for hospital, make sure paperwork is ready for the "just in case" and fingers crossed for now.
Cass
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Unread 05-11-2012, 10:35 AM   #60
ginnie
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I know you are frightened. Please keep in touch with us on NT. We are all behind you. Don't hesitate to contact SDFencer. He has same issues, and is most kind. He lives with the same condition. I hope the time passes quickly so that you can get this fixed and go on to have a healthy life. You are in my prayers right this minute. ginnie
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