Brain Aneurysm Support Community

I am worried and scared - newly diagnosed

#1

OK so my story, I awoke last weekend with numbness mostly in my hand. To take precaution, I drove to the hospital to evaluate. The ER doctor was concerned I was suffering a stroke and administered a clot drug TPA and ordered CT scans and MRA scans of the brain. Thankfully I didnt suffer a stroke but incidently they found two unruptered anueryms. 6.4 mm x 3.95 mm Basilar Tip, and a 4.29 x 3,26 Saccular on the internal cartonid artery extending posterior lateral. They placed me in ICU for two days for observation. They wanted to immediately do a Angiogram and I refused since I wanted to research the best places to deal with this sort of problem.

I really didnt have any symptoms before last weekend. Not sure if the numbness in my hand is related or not. What’s more, when I left the hospital I began having photophobia issues with the sun, and some minor optical pain that has since largely disapated a few days later. I still have this feeling of slight dizziness and a minor headache that feels like pressure over my ear.

Reading on the net, these anuerysm sites are not good as they are hard to reach and pose complications in procedures to repair. I am scheduled to see a specialist Dr. Pererson at the Univerity of Miami this week for my first consultation. I will most likely travel to a major center ( I can use some recos on best places and physicians) to get a 2nd opinion and decide if traveling will result in a better potential outcome.

My mother had a ruptured or bleeding aneurysm (not sure which) back in 1980 that she survived with cranial surgery. Although the recovery was long and she really was never fully the same cognitivly but she lived a long and happy life and able to take care of herself well into her early 80’s. Although she had many health issues following the 1980 surgery including heart attacks and diabetes. Remembering what my Mom had to endure and overcome scare me so much.

Thankfully today they offer less invasive solutions. I hope the doctor tells me that he can help me and with coil technology vs clip. I dont think I can deal with the cranial thing easily emotionally.

I just went through a nighmarish scare when they identified a 8mm spiculated very likely cancerous lung nodule that thankfully turned out to be just an infection that for all intensive purposes went away on its own. I hate phillip morris and the tobacco industry for addicting me to ciggarettes at age 13. 40 plus years later I know my fate and death will be attributed to my ciggarettes. But no matter how hard I try or what replacement therapy I utilize, I return to this flithy habit. I fear even if I can get the internal strength to quit, the anxiety I will feel will bust open the anuerysms. I mean I go nuts completely within 72 hours , patches or whatever included. But I must find a solution at this point. I cant continue to destroy my body.

I guess my biggest concerns are what percentage of people have significant disabilties after surgery? Should I expect any noticeable change in my cognitive skills that will effect my professional or personal life even if I remain capable of taking care of myself after recovery.

Any advice or thoughts will be greatly appreciated. Hoping everyone out there heals and finds happiness!

#2

We’re glad that you found us, T, but it’s a shame that you “qualified” to join our group. You will find that people here are not only friendly and helpful, but they are extremely knowledgeable and (unfortunately) experienced. You’ve come to the right place.

My name is Seenie, and I’m a volunteer with Ben’s Friends. I wander all over our network, helping moderators as needed. I don’t usually respond to members’ posts, but yours begged for my comment. I have a friend who discovered a large “silent” annie in a difficult place, and she had to decide whether to treat or leave it. It was was in the same location as her late mother’s had been. She was frightened of possible deficits after surgery, but completely terrified of surviving a bleed as her mother had done: she had been bedridden in a nursing home for the last twenty years of her life.

My friend chose to have the clipping surgery. She had some movement problems that resolved with physio in about six months, and now, two years later, is enjoying life with no significant “souvenirs” of her experience. She had her surgery in Sarasota. There is also a very highly regarded surgeon in Tampa. Try using the search (magnifying glass) tool above, or ask member @Carol for his name.

Anyway, we’re glad that you found us, T, and we hope that you will be too.

Seenie from Moderator Support

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#3

Thanks for the reply, much appreciated. Very happy your friend is doing good now and is a survivor. Reseaching choices, I have read John Hopkins is respected. I really wanted to go to Mayo but my insurance dropped them from coverage. I sure hope I dont have these deficits post procedure and I sure hope I dont need clipping and would take the chance that I may need to redo the procedure if coil doesnt hold… But it really isnt in my hands. It will be up to the experts to decide. Sad but resilient I hope.

#4

Taxmeless,

It sucks having an aneurysm but consider it a blessing in disguise that it was discovered. It is much worse after a rupture like in my case.(VA/PICA rupture by brainstem) It is not a trivial thing having an aneurysm but we are lucky with the medical technology in treating aneurysms today. In 1980, MRI technology was in its infancy and was introduced. In the 1990s, aneurysm repair by coiling was introduced. In the 2000s, Pipeline stents were introduced. Personally, I think that imaging technology (MRI) was needle mover as arteries have variations and Neuro-Surgeon can plan the repair strategy with the review of image. So, I hope that it will give you encouragement as positive outcome was much less in the decades ago.

Having said that, there are risks of neurological issues after surgery. For this reason, it is important to do your homework in finding an experienced Neuro-Surgeon and a hospital that specializes in aneurysm. These hospitals treat high volume of aneurysm with Neuro-Surgery team that handles both clipping and coiling so there is no bias in treatment method. Statistic show difference outcome between specialized and non-specialized hospitals. Dr. Michael Lawton is world class Neuro-Surgeon who used to be head surgeon at UCSF but is now CEO of Barrows Neurological Institute (BNI). Is BNI covered in your insurance? The NYC and Boston area hospitals are also very good. Hopkins is one of the top research hospitals in US.

Here is a site with good information on aneurysm. Good luck to you.

http://www.taafonline.org/conditions/aneurysm

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#5

I agree with 2Fight. It’s good that you found the aneurysm prior to a rupture/bleed. This will allow you to be proactive with your health and find a treatment plan. While surgery is certainly scary regardless of which treatment you do (clipping, coiling, pipeline) it’s still typically better than the outcome of a ruptured aneurysm.
I have an aneurysm at the conjecture of my carotid and ophthalmic. I have since had 2 pipeline devices placed one inside the other. I never had any negative side effects from the surgery and was home within 24 hours of surgery. I do recommend finding a doctor you trust and has expertise. I did get a consult at Mayo but still went with a local neuro surgeon that studied at Cleveland. He was intelligent and caring and made sure I completely understood all of my options. Hard to come by with surgeons. He is Dr Alexander Drofa.

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#6

Absolutely great advice. Although finding you have unruptured aneurysms or even one is no fun. Not knowing a potential time bomb that you have no control over is in your head until one ruptures is the worst. I have 4 - 3 treated with pipeline stents. Procedures done in Oregon. Gather your info, get a local neurologist and get the procedure done by the most experienced doctor you can find near you. No ruptured aneurysm for me. I was blessed. Found out because my brother had one rupture. Good luck to you my friend

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#7

Thank you all for The advice. I have been having more frequent by the day and longer lasting episodes of dizziness. I am concerned thst this is a sign they are about to rupture. Would this be something to take emergency actions including forgoing the research and head straight to the nearest reasonably qualified facilty?

#8

Taxmeless,

I suffered from a stiff neck and upper back pain in my rotary cuff for about 10 years. My late Father who was a physician told me that if it persists, then I should see a Neurologist. I was just too busy with work to bother with it. Instead, I went to see a chiropractor as my neck was so stiff. After a neck adjustments, I started to get horrible headaches and fatigue. 3 days later, I started to lose track of time. (biological clock where afternoon felt like the morning. Then, I had a rupture causing a A-fib and diabetic attack (I do not have diabetes) and subsequent SAH. I was the luckiest person as the ambulance took me to my local hospital who had an amazing Neuro-Surgeon on staff who is qualified for both clipping and coiling and is neck/brain Neuro-Surgeon. He saved my life.

I would listen to your body. If you are experiencing progressively worsening neurological issues, it is not good. My advice is getting a consultation with the most qualified Neuro-Surgeon in your area. By qualified, just ask if they have experience with aneurysm cases. This way, they will have your medical records and a life saving option if the worse happens and it ruptures. You can also research a 2nd option for a second opinion with other hospitals that specializes in aneurysm.

Best of luck.

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#9

My name is Charlene and I suffered from an aneurysm May 10 2017. I was at home it was my day off work and I just finished mowing my lawn I had no symptoms at all that day but had a real bad headache the day before. I walked into my garage to put away my lawn mower and that was the last thing I remember. I woke up in hospital a couple of days later and was informed at that time that my aneurysm had ruptured and that I also suffered a stroke. I was in the hospital 6 weeks and rehab hospital 2 weeks. I had the coiling done and I am home now and trying to pick up the pieces of my life but it’s so hard because I suffer from headaches a lot. It has been 5 months and still have not seen the specialist as of yet and will not see him until January 2018. I am scared every time I get a bad headache that what if it comes back although I was told the time another comes back I will be an angel in heaven . The thing is I don’t think emotionally you never really get over it and it’s always in the back of your mine " what if ". I am glad they did the coil because there are no scares. I just want to know when the headaches will go away. Best of luck to you and hopefully your out come is a good one

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#10

OK, So I posted before and received good responses and I appreciate the help. I went to a respected Nuerosurgeon this week here in Miami to evaluate the MRA report and images for two supposed aneuryms that was found incidently.

So it seems I never had a 6.4mm Basilar Tip anuerysm. The radiologist misdiagnosed the scan, When I called the head of the hospitals radiology after the review by Dr. Peterson, he agreed his department made a mistake.

But indeed I have a internal cartonid artery anuerysm. Although after review it was overstated in size and is really about 3.5 mm x 2.5 mm in size. When I plug in the location, size, live expectancy of 30 years my lifetime risk is somewhere between 0-3% of rupture. I guess this area of the brain has less risk.

My dillema now is do I coil, stent or flow divert now or just follow it until it reaches 7mm if ever, since it seems 7mm is the point where the chances become greater then 5% lifetime over 30 years? Do I trust these model calculators to be a good forecast? It seems to me to be wise to watch since the chance of a stroke or serious outcome from the procedure is around 3 to 5%. So I ask myself whats the benefit if the odds from the procedure killing me (or wishing I was dead) is equal or greater then the chance of lifetime rupture.

Additionally, what these model calculators fail to take into account is other variables like shape, family history (my Mom survived a bleeding aneurysm), and smoking history ( i smoked for over 40 years).

Here is a link to the calculators for anybody seeking this info.
kockro.com2
Calculators - Mikroneurochirurgie ZĂĽrich|PD. Dr. med. Ralf A. Kockro
Welcome The management of unruptured and asymptomatic intracranial aneurysms remains controversial. Since aneurysmal hemorrhage carries a high risk of mortality and morbidity it is essential to estimate the probability of aneurysm rupture in each…
Thoughts?

#11

Taxmeless,

First, it is good news that Basilar tip was misdiagnosed. It is also good that you were seen by an accomplished Neuro-Surgeon. Based on all the information that I heard from a panel of Neuro-Surgeon, usually a procedure is not performed until it reaches a certain size just as your Neurosurgeon appears to be recommending. What I understand from people with unruptured aneurysm is that they have to have MRI screening every 2-5 years. I am not sure in your case but MRI screening are very expensive. With insurance, the costs are manageable. Without insurance, MRI costs are over 10K procedure. So, my advice is making sure that you have good insurance. What was your Neuro-Surgeon’s opinion? I am not sure of model calculators in predicting aneurysm growth nor smoking history. I do know that high blood pressure is a cause of aneurysm growth. How is your BP? How are your bouts of dizziness? I would still research for a 2nd opinion for ease of mind. Good luck

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#12

He wants to do a angiogram followed by either a coil or stent. Feels coils can easily dislodge . I have reservations that the surgeon always wants to fix things even if the risk benefit may be a tie or worse. My blood pressure without meds is around 140 over 90. Not excessively high. I do have high cholesterol but am allergic to statins. I will be taking a shot monthly instead starting this week. I have gold plated medical insurance until Medicare kicks in about 9 years. Not sure what Medicare coverage is like when that happens or if I can continue to utilize my companies insurance past 65 until retirement. I will seek 2 additional opinions before taking any action. Dizziness is still here with me a few times a day. Not sure of the cause although the surgeon says it’s not related. It maybe due to my neck stenosis , the aneurysm or something else. Thanks for taking the time to talk to me about this. I appreciate the support! All the best.

#13

I would definitely get the angiogram. Then you will know exactly what you are dealing with. Ask for copies of the diagnosis and pictures of the aneurysm (s). This way you will have what you need to take for second opinions.
I would also take notes of the conversation with the dr. Have your list of questions with you. If you can have someone come with you to your dr appointments then that would be ideal. I would specifically ask the dr what type of treatment he would recommend. If they can do a pipeline stent (PED) then that is the least invasive. Then coil, coil with stent and the most invasive clipping. If you can get a pipeline stent then the risk is way less and recovery is better.
I have 2 pipelines covering 3 aneurysms. Last one was installed on 9/27/17. I’m not going to lie. Even with the pipeline recovery can be tough. My first one in 2011 was a 2+ week recovery. Mostly terrible headache and very tired. This last one was more difficult. At 5 weeks, yesterday, I am really starting to feel “normal” again. Terrible, terrible headache for almost 3 weeks, could not make decisions, or deal with any stress. No sense of taste ( still gone at 5 weeks). I am also dealing with some short term memory issues. But…I will be fine. Getting better every day.
So… most importantly, get a neurosurgeon with lots of experience. Mine has been doing them since 2012, at Oregon Health and Science University, in Portland, Oregon.
Hope this helps. Hang in there, friend.

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#14

It has been two years since I wrote, but your posting caught my eye.

Many of us were in your shoes, overcome with the diagnosis, overwhelmed by the testing and decision on what makes the most sense. I was diagnosed with a 3mm aneurysm incidentally. I spent a lot of effort reading medical studies. I visited five neurosurgeons and neurologist at Hopkins, NIH, and Columbia. Coiling was not an option because of the small size and location. I became terrified of a rupture. The anxiety became very debilitating emotionally. I decided to have a clipping, knowing that should I have a rupture in the OR, chances were high I would recover. A rupture elsewhere could be devastating.

My surgery was three years ago at Columbia University, and went wonderfully. My recovery went very well, too, even with the anxiety of wondering if I would do well. Three years post-surgery I am doing amazingly. My life is 100% back to normal. I am free of the anxiety of a rupture, which I cannot let you know how liberating it is.

So, feel confident and empowered. Information is power. There are a lot of studies on line to read. There are a lot of people like me who have been treated and doing well. Good luck to you!

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#15

Thanks for the input and sharing. Very much appreciated.

#16

Thanks so much, why did you choose Columbia over Hopkins. JUST wondering?

#17

My decision to go to Columbia was based on a few factors: 1. Being from New York, I have previous experience with the Columbia Uni Hospital. I actually visited both Hopkins and Columbia hospitals and spoke with OR and post-recovery neurology nurses and staff. Both seemed good, but Columbia simply felt more comfortable and right for me. 2. I really liked the Columbia neurosurgeon, Dr. Connelly. I drilled him for one hour with many many questions. He was so patient and reassuring, but still realistic. I really liked his “bedside” manner. A friend of mine who has good contacts in the neuro field got a very strong endorsement on Connelly. Connelly is indeed a world leader in clippings. Even years later, he remains super responsive to my questions when I communicate with him. Connelly gave me a study that showed that outcomes at Columbia are among the best in NY state. The studies show high volume neurological surgical centers do better than smaller places. 3. I have more of a support network in New York City for post-surgical care than here in Washington DC, where I live. I know Hopkins is super good too. The docs were certainly very competent and credible. Columbia just seemed a better fit for me.

As you can read, I am naturally very analytical, methodical, scientific, and data-driven. I felt I went to the BEST doctor I could find in the BEST neurological surgical unit I could find. I knew I only get one chance at this and so I want the BEST. Looking back, I am comfortable that my decision making process took several months to work through, and for now, I am content with the way things worked out. Good luck with your own journey.

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#18

I am the same way. Very much influenced by studies and history. Thanks veey mich for taking the time to discuss this. I am happy that it turned out so well for you. Cheers!

#19

I am curious as to whether your doctors mentioned that smoking can or will play a part in whether or not your aneurysm will rupture? I ask because I was a smoker prior to my aneurysm rupturing August 2017, and I was told that I could never smoke again because that played a huge role in causing my annie to rupture. I have not smoked since I have been released from the hospital (after having one ruptured annie coiled, and another unruptured annie coiled); however, I struggle everyday with not smoking. I am hoping that everyday it will get easier to not smoke or crave a cigarette.

#20

Yes he said it would be best to stop smoking. It certainly is healthy to quit. But reading studies it is inconclusive that smoking causes rupture. It certainly causes anuerysms but looking at studies of rupture rates it did not show any increase in rupture rates. The biggest factors are location, size, cholesterol level, and aspirin use . What’s more not sure of your personal situation but if your ruptured aneurysm was clipped it can t rupture again since its been fixed.