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-   -   Just found out I have a brain aneurysm...Need Help and Support... (https://www.neurotalk.org/aneurysm/152664-found-brain-aneurysm-help-support.html)

LindaZ 07-12-2011 08:26 PM

Hi, I have no words of wisdom, nor any advise but just wanted to let you know that I was recently diagnosed with 2 carotid ophthalmic aneurysms. I just had 1, which was almost 9mm in size, repaired with a new procedure called a pipeline stent. The other will be monitored as it was only 2 mm. From what I understand, this stent is used particularly for aneurysms in the internal carotid artery, which is where mine are, near the optic nerve. MY surgery was on June 8, 2011 and I am back to work as of last week. I do have extreme fatigue, a lot of emotional issues I'm dealing with, headaches, memory loss and a few other things. I don't know much about the type of aneurysm that you have, but I wish you well and, if you need support, please feel free to contact me.

nellybelly 08-15-2011 02:34 AM

Hi I am 4.5 months post clipping surgery from a right ICA aneurysm, i too like you were very stressed and concerned about over doing things in case something happened, what I have found since discovering mine is that the Doctors take these very seriously and will do everything in their power to fix the aneurysms before they rupture if they can.
It is a very scary time in your life and i feel for you, as I mentioned before my clipping op was done in April 2011 (4.5 mths ago) and although I am not 100% back to normal yet, I am on the improve, the people on this site are an absolute god send, they helped me through my surgery build up and answered any questions I had, please remember no matter how silly you may think a question might be, please ask it, cause if you don't you may never know the answer you seek, no question is silly.
good luck with everything and I know easier said than done, but try not to stress, need to keep the blood pressure stable.
take care Narelle

allans799@sbcglobal 10-05-2011 06:00 PM

Support
 
Hi my name is Julie. I was diagnosis 12/07 with unruptured brain aneurysm and have a family history of rupturing aneurysms. I have been fighting to have surgery for 4 years. Just had a cerebral angiogram and they found it to be a terminus aneurysm. This is one with important arterties in the neck of the aneurysm, so they will not due surgery. I found out last week and have been so depressed since. I have other issues also, but this just won't let me live a normal life. How many of us are there? I also have simple left temporal lobe siezures, which effect me daily. They insist the two are not related even though they were found at the same time. I will be 52 on Sunday. My mom's ruptured at 53. Are they going to perform surgery on yours? Thanks for sharing......Julie




Quote:

Originally Posted by DigitalAngel04 (Post 781958)
Hello my name is Kyrie and recently I have found out that I have a brain aneurysm. I'm 23 years old and I live in Nebraska. I was in the military from May 2006-January 2011. I believe I have had this for 3 years. The medical doctors at my base misdiagnosed an MRI that I had in 2008. I've been having horrible migraines ever since 2008. I have a 3 year old son and I'm a stay at home mom. I'm working on going to college to do medical transcriptioning so that I can work from home. I'm scared and worried about what will happen. I've been told to look for signs of a stroke and I'm just worried. I have PTSD, Depression, Anxiety, Panic attack disorder, Fibromyalgia, and 2 herniated disks. I do have a lot of stress on me and all of the PTSD, Depression, Anxiety, and Panic Attack Disorder is from an ex-husband who was physically, mentally, and emotionally abusive...I'm trying to cope with all of the stress that is going on in my life. From everything...I'm afraid of confrontation, and afraid of arguing or yelling for fear that I might go into a panic attack. I'm afraid of doing strenuous things for fear something might happen to me....I'm looking for people to talk to who have going through this before...I need support. Thank you.


Wendyrae 10-29-2011 08:28 AM

Just found out I may have an aneurysm too!!!
 
Not sure how a neurological doc thinks it's an aneurysm and is not sure! Anybody else have this happen?!?

nemoslady3 11-04-2011 07:56 AM

Quote:

Originally Posted by DigitalAngel04 (Post 785811)
So have a Cavernous Carotid Aneurysm. They won't do surgery until it hits 5mm so they are going to monitor it for now. I will let everyone know how things go. If anyone has any advice or any information on these types of aneurysms please let me know. It would really help.

I had the same kind and they did clip it off as it started to bleed and then wouldn't stop. Now I have als not sure if they are related or not Good Luck adn my recovery time was about 4 to 6 weeks by 6 weeks I was back to doing everything I wanted

lcms0516 11-08-2011 05:55 AM

Quote:

Originally Posted by DigitalAngel04 (Post 781958)
Hello my name is Kyrie and recently I have found out that I have a brain aneurysm. I'm 23 years old and I live in Nebraska. I was in the military from May 2006-January 2011. I believe I have had this for 3 years. The medical doctors at my base misdiagnosed an MRI that I had in 2008. I've been having horrible migraines ever since 2008. I have a 3 year old son and I'm a stay at home mom. I'm working on going to college to do medical transcriptioning so that I can work from home. I'm scared and worried about what will happen. I've been told to look for signs of a stroke and I'm just worried. I have PTSD, Depression, Anxiety, Panic attack disorder, Fibromyalgia, and 2 herniated disks. I do have a lot of stress on me and all of the PTSD, Depression, Anxiety, and Panic Attack Disorder is from an ex-husband who was physically, mentally, and emotionally abusive...I'm trying to cope with all of the stress that is going on in my life. From everything...I'm afraid of confrontation, and afraid of arguing or yelling for fear that I might go into a panic attack. I'm afraid of doing strenuous things for fear something might happen to me....I'm looking for people to talk to who have going through this before...I need support. Thank you.

I was born in May'67. My aneurysm caused Hydrocephalus. Possibly because, the aneurysm either developed in utero, or after birth. For the first eight months of my life, my head kept growing faster than the suggested percentile of growth during the first year of life. My aneurysm was clipped during my first brain surgery. I was also shunted for the Hydrocephalus. My first surgery, and the five revisions I have had so far, all happened from eight months to nine years of age. As a result of the surgeries, I also have Epilepsy. I have Depression because of all the things my health has kept me from doing in my life, and the guilt over those that have died little or no medical problems that were younger than me when they died, and/or their medical problems existing for a far shorter time prior to their death. I am not referring to people like Janis Joplin who died at 27 of a drug overdose. I am referring to people like Neil Peart. His 19yr.-old daughter was killed in a single-car accident back in 1997. At about the same time his daughter was killed, his common-law wife of 22yrs., was diagnosed with cancer and died within ten months. I have had my health problems for 44yrs.. If there is anything for me to be thankful for, it is being glad that not only were you not born with your aneurysm, that the technology exists today for getting rid of an aneurysm.

I will get off my soapbox now.

cass3765 12-25-2011 05:30 AM

Hi my name is Cass. I have recently been diagnosed with 3 aneurysms (6/11/11). There is 2 in the right posterior commnicating artery (PCommA), 7mm n 2mm and 1 in the left PCA, 3mm. I spent a few days in hospital after having a type optical seizure, 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.
How can anyone live like this... all words of advise are always welcome but no one I know has suffered anything like this. My best friend is going thru cancer and tries to console me, but she is still active and can think straight and doesnt get confused and the list goes on.
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?

adult_aq_stenosis 12-26-2011 11:28 AM

Not necessarily stress about unruptured cerebral aneurysms
 
Hi Kyrie,
My name is Mike, and I'm a neurosurgery physician assistant. It sounds like your aneurysm is small (if it was misdiagnosed on imaging) and therefore probably best watched/monitored. I hope you don't smoke or have hypertension, because those are the two biggest risk factors for hemorrhage. Also if you have a rare condition called familiar polycystic kidney disease, you would have to be hyper-aware of cerebral aneurysms. Remember, most people with aneurysms die with them... unruptured. What I mean is, aneurysms are not the cause of death; cancer, diabetes, heart disease etc. are the real killers.

What may eat u up psychologically is thinking you have a "ticking time bomb" in your head. Since your post describes a lot of anxiety and stress, I highly recommend reading up "nonruptured" or "unruptured" aneurysms. Treatment varies by location. In general, and this is only "in general," an middle cerebral artery aneurysm is treated with craniotomy, and a basilar tiip aneurysm is treated by endovascular coiling. ** Best of luck.
Mike


Quote:

Hello my name is Kyrie and recently I have found out that I have a brain aneurysm. I'm 23 years old and I live in Nebraska. I was in the military from May 2006-January 2011. I believe I have had this for 3 years. The medical doctors at my base misdiagnosed an MRI that I had in 2008. I've been having horrible migraines ever since 2008. I have a 3 year old son and I'm a stay at home mom. I'm working on going to college to do medical transcriptioning so that I can work from home. I'm scared and worried about what will happen. I've been told to look for signs of a stroke and I'm just worried. I have PTSD, Depression, Anxiety, Panic attack disorder, Fibromyalgia, and 2 herniated disks. I do have a lot of stress on me and all of the PTSD, Depression, Anxiety, and Panic Attack Disorder is from an ex-husband who was physically, mentally, and emotionally abusive...I'm trying to cope with all of the stress that is going on in my life. From everything...I'm afraid of confrontation, and afraid of arguing or yelling for fear that I might go into a panic attack. I'm afraid of doing strenuous things for fear something might happen to me....I'm looking for people to talk to who have going through this before...I need support. Thank you.

ginnie 12-26-2011 02:52 PM

Dear Digital
 
There is a gent on this site, you can private him, the name is fence. He has had surgery for this by the very best in the country. He may be able to give you the name of the facility and surgeon, who has written a book on this condition. He had a fusiform aneurysm. I looked this up on the internet and found out alot about aneurosyms. I wish you all the best, and hope you can find a solution and cure for this. ginnie PS I have the name of the physician Spetzler, as I said he wrote a book on it, you may want to try to find the medical text this particular doctor wrote.

SDFencer 12-26-2011 08:25 PM

Well, one big problem is living in Nebraska. Where is the aneurysm located? I had a fusiform aneurysm in my Basilar artery and a second one right above it near the Circle of (whatchoo talking about) Willis. The first one was treated with a stent through vascular surgery. (going in through the femoral artery in my thigh and snaking up to it.) When the second was discovered they went in, did a flow reversal, and set a clip. (craniotomy)

I went to the Barrow Neurological Institute in Phoenix. I was told the best place for brain injuries. (I asked "getting them or fixing them?") Here are some very good texts, quick reads and written for the non science major. (Microbiology undergrad for me)

"Brain Aneurysm" by Robert Spetzler. (one of the best neurosurgeons in the world and they guy who had his hands in my head.) Go look at the group at bnaneuro.net) and "Brain Aneurysms and Vascular Malformations, a Guide for Patients and families." by Dr. Eric Nussbaum.

You should also visit Brain Injury Association of America (biausa.org) and check out some of their resources. The local chapter for Nebraska is http://www.biane.org I cannot stress enough the support and resources these organizations offer. Check this stuff out and check in here. Mine are still growing despite being stented and clipped. They are monitoring them and I am still active. (Nationally ranked wheelchair fencer) How do you fence with a wheelchair? Shouldn't you use a sword? That's another story that would eat up all your bandwidth. I tell people to not make me angry because I have an exploding head and I'm not afraid to use it. (Ha, a brand new audience for my corny jokes)


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