Just found out I have a brain aneurysm...Need Help and Support...
 

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 do know that aneurysms are much easier to treat and remove than they were years ago now that we have micro surgery techniques.

They run in my family and many years ago the surgery was only invasive and my sister did not survive it. That was nearly 30 years ago and now it is almost like outpatient surgery in many cases from what I understand.

I hope it helps your headaches and maybe some of your other symptoms if you have it treated.

You did the right thing of getting out of that relationship. God bless you dear, I'll keep you in my prayers. :hug:

Thank You
 

It's nice to see that people care. I'm very scared. But I keep praying as well. I just hate being tired all the time and the headaches are annoying. Thank you for the comfort. I know there are invasive procedures and what not...but I cant help but worry. I worry that something may happen...and then what would happen to my 3 yr old. But I pray that everything stays safe. Thank You.

First of all, take a deep breath. You have had to cope with so much that I am sure that this seems like your world is spinning out of control. Finding out that you have a brain aneurysm is a terrifying thing - but try and think of it as a positive - you have found it before it has found you.

There are very safe and reliable treatments for aneurysm now. I had one clipped in 2004, and I know many others who had aneurysms that have been either clipped or coiled since then.

The waiting game is the hardest. Have you seen a neurosurgeon or an interventional radiologist yet? What is the recommendation from your doctor? The course and type of treatment depends on many factors including the size, location, and type of the aneurysm (berry or fusiform), your overall health and age.

I know that this forum doesn't have a lot of traffic, but I will check in here regularly to see how you are going.

Sorry to hear that you have been through so many other challenges. I would recommend that you try not to strain yourself physically, or go on roller coasters :) and take good care of your general health.

Now that you know it is there, you are in control - remember that. Please feel free to post or private message me if you have any questions that I can help with.

Please look after yourself.

Regards

Lyn

Thank You Lynn
 

Thanks Lynn. I know I am in control. It's just stressful. How are you doing since everything happened? And I haven't seen the neurosurgeon yet. I go in August. My fiance and I are going since my mother can't make it. It sucks to have my fiance off of work because he doesn't get paid for it, but he wants to be there with me when we get the news of what we need to do. I love him for all the support he has given me. It would be harder to stay positive without him. My email is ** if you would like to email me. Thank you!!

Hey Keiri! I just had an anyeurism coiled and I feel pretty good. It is about 1 month and two days since the surgery. Mine actually ruptured while I was working out. It was a class 3 rupture which means serious bleeding into my brain. I actually died for about 7 minutes. Thank G-d for my training partner, the paramedics and the doctors at Emory Hospital in Atlanta, GA. I think they are #1 in the coun ty for anyeurisms. You can't run from it so, just face it with confidence and think positive and all will be OK. Sorry to hear about your relationship with your husband. You can start a new life once this is all over and done with. And, like I said in my response to your response about my ad. When you are finished and recovered from your surgery get yourself to the gym because a strong, healthy body will get you through anything and it will also let you live longer and stronger. I wish you the best.

Thank You
 

Thank you for the support. I'm actually divorced from my ex-husband and all. I've got a Fiance named Kevin and he is the best I could ask for. Thank you and I will keep messaging you. I'll message when everything happens. Thank you.

Hi again

I am glad you have lots of support around you - that is really important. When you go to see your neurosurgeon, I would suggest that your fiance takes a pen and paper - I know that when I went, I was in shock, confused and more than a little overwhelmed by it all. Having a support person with you makes an incredible difference, because by the time you leave your head will probably be spinning with all the information you get.

Make a list of questions before you go. It is easy to walk out and realise that you didn't ask everything you need to know. Take it with you - I promise your doctor won't mind.

As for me, I am a success story. I won't lie and say it was an easy road to recovery. I also have MS, so my recovery was compromised by that as well. My husband was amazing and totally supportive - which made all the difference to me. It sounds like your fiance will be that way for you.

Apart from still having a scar that runs from the top of one ear right across my head to the top of the other, a lumpy forehead (where they took the window out of my skull) and a little bit of a bald patch, I am really good now.

I know you will do really well too. I won't have access to a computer for a couple of weeks, but I will check back as soon as I can to see how you are and what the doc says.

Take care and keep in touch. This is all very scary now, but it will work out.

Lyn

Good News!
 

So I got a phone call from the Neurosurgeon's office and they moved my appointment to this monday! I'm thanking all of my church friends for praying for me. God has changed my life. I'm so thankful that my appointment has moved up. Now I get to find out what we are going to do sooner. I'm so happy. I'll update as soon as I know what is going to happen. Stinks that I live 2 and a half hrs away from the doctor but oh well. Thank you all for the support, specially lynn and william. It's helped a lot. :) Oh and I had to get a domestic abuse filed against my ex-husband...they put a protection order in for me and my son and took over jurisdiction of us both. I'm having horrible nightmares about it all now, and they keep getting worse...I don't know why...I shouldn't be so scared because he can't do anything to me right now...but the nightmares are getting horrible...any advice?

Went to the doctor
 

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.

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.

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

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

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?!?

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

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.

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?

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

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.

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)

Hang in there Kyrie. I found out I have a 4 mm brain aneurysm behind my left eye. This was the week of Christmas. A week ago I was told I also have Huntington's disease. I am more concerned about that for some reason. I many other problems ongoing for almost two years now. Mine was an incidental finding so I was lucky. I am scheduled the 18th for surgery at Mayo in Jacksonville.

There is another surgery called a pipeling procedure that I will be having. You may want to check into this as well. It can also be coupled with coiling. It is one to two nights in hospital, one more day in area. I may stay longer due to the 650 mile drive.

I have great family support. I have found they need support as well. We don't need to forgert the worries of those who love us.

Good Luck.

Mike