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-   -   How do I live with an aneurysm? (https://www.neurotalk.org/aneurysm/162493-live-aneurysm.html)

cass3765 12-26-2011 04:17 PM

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?

ginnie 12-26-2011 04:37 PM

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

Lynn 12-26-2011 08:35 PM

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.

:o 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

Lynn 12-27-2011 07:42 AM

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

ginnie 12-27-2011 10:12 AM

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

cass3765 12-27-2011 03:43 PM

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

Lynn 12-31-2011 09:42 AM

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

cass3765 12-31-2011 03:49 PM

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

ginnie 12-31-2011 05:44 PM

hi cass
 
SD fence was the gentleman that told me about that Doctor.. He was the one who did his surgery I think in arizona. He is the one who gave me that information and posted about it too. I wish you all the best as you seek the solution for this trouble. Fence will be glad you down loaded this book. Be informed, don't let fear get in the way of finding out what you need to know to make an informed decision. That is kind of the way I approach my own medical conditions these days. I will be thinking of you. I will also let fence know what you did. ginnie

SDFencer 01-01-2012 01:18 PM

Hey Cass: I hope the books help. My tale of woe is that I have had 2 brain surgeries, 3 strokes and 4 seizures in the last 5 years. I know this board seems to be a "can you top this?" of conditions. I still rank in the top few because I had a fusiform aneurysm in my basilar artery. That one was fixed with stents and at the follow up angio they found a new one right above it. So they did a craniotomy, flow reversal, bypass, and clipping of the new trouble zone. The two aneurysms seem to still be growing. So as I tell people, "I have an exploding head and I'm not arfaid to use it, so don't make me angry."

Dr. Spetzler was the man who had his hands in my head. He is a very nice man. Before my surgery I read his book and went to the medical school and researched his surgical texts. I asked him to autograph his book and after my wife and I walked out and I looked at the inscription and told my wife, " I hope he operates neater than he writes." But a messy writer is the sign of a good surgeon. Right?

Dr. Nussbaum's book is also very well written and is a good book for family and patients. I tend to be an informatio-a-holic and research everything to death. I would look at any brain associations in AU as well. They are tremendous help. Brain Injury Austrailia is http://www.bia.net.au/ and in NSW there is http://www.facebook.com/pages/Brain-...17648044936159 on facebook.

I am always worried that a rise in adrenalin or BP is going to have me pop like a balloon. However my surgeons tell me I can't live in fear. (want to bet?) So I am a nationally ranked wheelchair fencer in the US. I do walk, but if I try to fence on my feet I fall right over.

So drop me a note if you fancy a chat.


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