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Old 12-26-2011, 04:17 PM #1
cass3765 cass3765 is offline
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Confused How do I live with an aneurysm?

Hi my name is Cass. I have recently been diagnosed with 3 aneurysms (6/12/11). There is 1 in the right PCommA, 7mm, 2mm in thr right PCA and 1 in the left PCommA, 3mm. I spent a few days in hospital after having a type optical seizure that sent my right side tingly n numb in parts especially my face, my 3rd in 2 weeks.
I have since suffered depression, anxeity, panic attacks. I cant drive or visit a shopping centre as I become fatigued, confused, i start shaking, my temperature rises. I am off to see my neurosurgeon in Jan 2012 to discuss my options. Ive had to give up work as it was a very physical job and I am very scared.
I am 46 i have 1 adult child and a littlen of 11y.o. I have been given little information and i have since visited my GP who has been a great help (she hurried me to hospital after discribing my "seizures".) I have also researched as much as i could to find out about my condition.
It has been wonderful to find this site and being able to read others stories and to know i am not alone. The thing i hate most is the amount of codeine i am taking as normal painkillers do nothing for the constant headache. Some days i want to curl p n die it becomes so draining. My partner has been a great wealth of support and now wears my apron. But I miss being able to walk long distances and play sport and attend zumba classes and I feel right now like my life is wasting away.
I am in Australia and I was diagnosed just as everyone closed down for the xmas break. My question is this.. If I cant cope with trips out and can only feel comfortable and safe at home... how do i live, what kind of exercise can I do, how do I make the headaches stop without copious amounts od codeine each day?
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Old 12-26-2011, 04:37 PM #2
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Default Dear Cass

Dear Cass, No, you are not alone, even in this forum, there are others who have Aneurysms. I have read up on it too, and I understand how frightened you are. The one gentle man that I have talked to through neuro talk is SDfence. He may be able to give you information on aneursm, and a book that his doctor wrote about the condition. Are you having surgery, did have it? I will re-read your post. I am really glad you found neruo-talk. I hope others will chime in to welcome you to this site. Do keep coming back here. There is information that should come from others who have knowledge about this more than I do. I am just a member who knows someone with your medical problem. I have cervial issues etc. Take care and be at peace. ginnie
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Old 12-26-2011, 08:35 PM #3
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Hi Cass

What part of Australia are you in? I live in Central Western NSW and had an aneurysm clipped successfully in 2004. Pretty lousy deal leaving you hanging with this scary diagnosis and no tools or information to deal with it.

The good news is, that there is most likely a surgical option (like clipping or coiling with titanium coils) available to repair and/or strengthen your aneurysms. You will need to be guided by what your specialists tell you. The repair options depend on the the type of aneurysm, their size and location, and your age and general health.

The best advice I can give you, is to try and stay calm - yeah, sure - easy for me to say. Don't do anything that will cause physical stress or strain, remember that you have found it before it has really found you. That is a good thing.

Ummmm - this is a delcate topic, but codeine can cause you to become constipated - and straining is not a good thing for you to be doing. So make sure that you keep your fluids up, and eat lots of fibre rich food.

Take care of yourself and be hopeful - you are certainly not alone and this is a good place to come for support.

Regards

Lyn
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Old 12-27-2011, 07:42 AM #4
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By the way Cass

I will not be online for the next few days - I will be checking as often as I can to see how you are.

I just don' t want you to think I have not been there for you

Regards

Lyn
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Old 12-27-2011, 10:12 AM #5
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Default Hello Cass

Hi Cass, I just wanted to let you know I am thinking about you. I sure hope you get to see your specialist soon. You will have options on what can be done about your aneurysms. I agree with the other post, it is hard to be left waiting with this haning, and unresolved. Please do post and let me know how you are doing. There is nothing worse than feeling alone in a situation out of your control. The name of a famous Dr. in our country is Dr Spetzler. He has written a teaching text on the subject. Maybe the book is available in your country also. Please be careful, and know that there are other people who care about you. You are in my prayers. ginnie
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Old 12-27-2011, 03:43 PM #6
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Thank u all for ur generous support, Im in Sydney and Im attending Royal North Shore Hospital. The wait to see the neurosurgeon is the hardest I have another 3 weeks b4 my appointment. My partner was terribly worried about me yesterday after we had to visit centrelink to discover it was closed. I became very dizzy and full of headache. It was a very draining experience.
The codeine plays merry havoc on my belly as I also suffer with diverticulitis and try hard not to take anything for the headaches, but some days its unbearable and I succumb to the little white pills. I have increased my water n fruit intake and have plenty of nuts n grains on hand to eleviate the "constipation".
I have read plenty now about my options and I do worry about either option although there are more success stories than bad ones so I am staying hopeful. This site and support has been a great source of positive for me and even on those "bad" days I try and keep positive.
I will come here often and keep u posted on my progress.
Cass
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Old 12-31-2011, 09:42 AM #7
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Hi Cass

I had my surgery at Westmead Private Hospital. My cranio-vascular surgeon was Dr Mark Dexter. He was fantastic - very skilled and extrememly gentle and kind.

In a controlled environment (I mean planned surgery to repair unruptured aneurysms), these are very safe surgeries, and the success rate is very high.

When you go for your appointment, make sure you write all of your questions down and take someone with you that you can trust - maybe even ask them to take notes for you. If you are anything like me, you will walk out of there and not remember everything that the doctor says, or forget to ask something important.

Cheers

Lyn
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Old 12-31-2011, 03:49 PM #8
cass3765 cass3765 is offline
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Hi Lynn,
Happy New Year, may the new year bring u lots of love laughter and good tidings.
I dont know who my surgeon will be until my appointment, the joys of being a public patient lol. That is 25 Jan 2012, only a few weeks away.
I have my partner coming with me and I have already started writing down questions regarding both surgical options and I downloaded the book by Dr Speztler which was a great source of information to my family and myself. I have moved from being freaked now to being a bit better informed and I have decided not to spend anymore time researchig aneurysms as I think that was upsetting me more than informing me.
I will keep u posted once Ive had my surgeons appointment.
Thank u so much for ur support,
Cass
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Old 01-09-2012, 03:34 PM #9
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Hi Cass,

My name is Terri and I started having seizures in 2005 and Dr. found aneurysms behind my right eye. Had surgery four months later to double clipped aneurysms.
Post surgery in 2008 I had back to back seizures 5 times and was hospitalized for two weeks. The Dr. changed my seizure meds to solve this problem.

Just wanted to share with you that I experience all the same mental problems that you have encountered and it took me until now to start feeling normal again.

Be strong make goals for accomplishing things one thing at a time and things will get better.

Thanks you and thank God

Terri
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Old 01-13-2012, 03:55 PM #10
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Hi, Cass. My name is Janet and I'm new to this board, but certainly not new to cerebral aneurysms. Mine ruptured over 14 years ago without any advance warning. I had emergency surgery to clip it and I survived and recovered.

I pray that you're able to see a neurosurgeon soon. The waiting must be absolutely horrendous. The headaches, the fear, the uncertainty...all have to be taking a toll on you. Don't lose faith!

Remember that you have something working to your advantage. The fact that your aneurysms were detected before rupture immediately shifted the odds in your favor. Planned surgery is far less risky than the same procedure performed under emergency conditions. If you can get avoid a bleed, you greatly reduce the risk of complications and disability - and shorten your recovery time.

If you haven't already done so, you might want to Google "The Brain Aneurysm Foundation." Their website offers some pretty straightforward answers to frequently asked questions. Information about the condition is much more widely available now than it was back when my "bubble" burst. Knowing you're not alone helps - and trust me, you're not alone. Cerebral aneurysms are more common that people think. I don't have the statistics at hand, but I believe the estimate was 6% of the U.S. population have undetected cerebral aneurysms. It may seem like a small percentage, but it works out to a LOT of people.

Don't hesitate to contact me if there's anything I can do to help you through this tough time. Be good to yourself. Get plenty of rest and eat healthy, nourishing foods. It's okay to take it easy. Most brain aneurysms can be sucessfully treated. Expect the best results and be patient with yourself while you recover. I'll keep you in my thoughts and prayers.
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