Recently Diagnosed. Scared, confused and very overwhelmed

General
1

My name is Terri and I am a 38 year old married mother of three young children. I recently found out I have a cerebral aneurysm. Just writing these words makes me vey emotional.

How I found out about my aneurysm- I have suffered from migraines since my teens. After having my kids, I was getting them every month (with my cycle). Anywhere from 3-5. I would also get them from smells (perfume, air fresheners, cigarettes, etc). I finally went to see a neurologist because the migraine medication I was taking did not seem as effective. I was diagnosed with hormonal and odor induced migraines. Just to rule out any other possible issues, he ordered an MRI/MRA. The aneurysm showed up on the MRA.

It is roughly 4-5 mm and asymptomatic. I was quickly seen by a neurosurgeon. Just based on the MRA, this neurosurgeon thought I would be a good candidate for a coil embolization and he referred me to a CE specialist.

I met with the CE specialist who agreed I looked good for a CE. He wanted a better/clearer picture so he scheduled me for an angiogram. We discussed CE, stents, blood thinners etc. The doc said that it would probably be CE or just watch and see.

I had the angiogram a few weeks ago. Ugh. That was tough. I wound up with a migraine and then a dull headache for a week. Found at via the nurse from the doctor that the aneurysm had not gotten bigger.

I went last Wednesday for my follow up. In the time between the angiogram and the follow up, I had decided that I wanted to do the CE. I could not just live with this "time bomb" in my head. I was a nervous wreck. The doctor dropped a bomb on me. While the aneurysm had not gotten bigger, the doctor did not like the shape. It is not one bulge but more like two. To give you a visual he said it looked like Mickey Mouse ears. The openings were also very wide which would mean a stent. Then he said it- "You might want to consider open brain surgery." My knees buckled and I had to sit down.

What? Why? Since I am only 38, he is thinking long term. Since the use of the stent with the coils has only been around 15 years, there are no long term results or studies.

The specialist referred me back to the original neurosurgeon to discuss open surgery. I am scared. I am a wreck. I am overwhelmed. I did a good deal of research and found two top neurosurgeons in my state. I am working to schedule "second opinions."

What should I ask?

If you had a CE, why did you choose it over clipping? Did you discuss long term for the CE?

If you chose clipping over CE, why?

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Hi Terri! Welcome! Will include you in good thoughts and prayers for the best~

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Thank you Ron.

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Hi Terri and Again Welcome...I was coiled 2 years ago...but my aneurysm was on my basilar artery...and the open your head surgery is so risky...in some ways or at the time I was made to believe I had no choice...I did have a 2 Neurosurgeons...one that was more than capable to open my head if need me during surgery of coiling...now I am faced with the fact that my coils have compacted some and I may need more coils...I was not told this before surgery...but in the end Terri would I do coiling again over cutting my head...Yes...that is my honest opinion...but I had so many things to weigh out...the thing I am sorry most for is I had a little time to get a second opinion and I didn't...not that I wouldn't have been coiled, but perhaps they would have explained more about coiling and I thought once it was done it was done....anyways...my annie was 9mm and it was leaking...so here is my advice to you...search deep down inside of you to find what is best for YOU...no one can make that decision...and if you have any doubts with this Surgeon...seek a 2nd opinion...with that...I am sending out a small prayer your way ~ Colleen

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Thanks Colleen. I am getting as much information as I can. I am meeting with a neurosurgeon (that I saw in the beginning) to discuss clipping. I am meeting with a different neurosurgeon next week to get another opinion. I am also working to schedule with yet another. I keep a list of questions that I have that I think of. It is so hard to be with the doctor and form any logical thoughts or questions.

Did you have a stent as well or just the coils?

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hi Terri My name is dot i am a healthy 61 year young still work and a i had two annies on the circle of willie One was coiled and the other had a wider mouth so it had to have a pipeline had them done at the mayo clinic in Jacksonville fl it has been 9 months and i am doing good they were both 10mm,. I didn't have any problem with either. No pain no headaches but, i was at work and got this severe pain in my head went to er and they ran the test and found them. So begin my journey with my annies. In dec they went back in and said all was well they will check them again in june then if all is well i will go a year before going back. do do they think that they can coil them? Would you need a stent has anyone mention the pipeline ? i wanted to go with the stent and coiling on my wide mouth one but dr said the pipelione was the best choice so i let him do what he thought was best. keep us posted

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Hello Terri, it's been awhile since I have replied on this wonderful site that I myself came across last year, almost to date. I was sitting in my hospital room after hearing that I had a basilar tip aneurysm and my family and I found the site and it helped me get an idea what I was in for. You should visit my page and see my blogs back then and you will get the picture of my personal experience. I just want to say that I ended up having to get a craniotomy clipping like you because the neck was unable to allow coils. Yes, it was an experience, one that I still have challenges with today, but the surgery itself is doable. I actually could not get the surgery done in Orlando, Fl where I live, but had to go to Miami, so it was a very delicate surgery, I was very blessed to have the surgeon that did the surgery. If I can be of any help in answering any questions you may have, I would be happy to help. It's scary, but I just tried to think positive and I really didn't have a choice about the matter because it was leaking and ready to explode, but on a personal level, after reading what I have regarding headaches and compaction, angiograms to check it, and the fact that it still there long term and so on, I would have chosen the clipping over coiling. Ask me again in 2 years and 5 and 10, I may give you a different answer, hehe, because there can be some challenges afterwards, I just tell myself, I choose life, no matter what the deficits are, I get to see my family and grandchildren grow up. Bless all of you, always thinking of my BA friends!

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Hi Dorothy- The neuro specialist did discuss the pipeline. While I am a good candidate, he was upfront with me that there are no long term studies regarding outcomes. I believe he said it has been around 15 years. Since I am on the "younger" side, he can't say what will happen in 30+ years. He referred me back to the neurosurgeon to learn more about the surgery. This way I have more facts and information and decide how I want to weigh the risks and choose what is best for me.

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Hi Sheree- I know I am lucky to have the choice of treatments, but I swear this is THE biggest decision I have had to make. Some of the biggest decisions of my life seen tiny compared to this. I don't know if I am as scared of the surgery as I am of the possible complications and changes I may face. I will check out your blog.

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Hi Terri: I too have been diagnosed in the last couple of months. I have a 9mm internal caratoid artery aneurysm. I struggled with my choices as well and finally decided on the coiling which is scheduled for June 7th. Ultimately, coiling is safer(according to research studies) and less invasive as you know. I can live with the follow up mra’s(my doc doesn’t do follow up angiograms-he is at Vanderbilt and is great). I figure there are new advances in this field all the time. If there are compaction issues down the road ( it seems like this is the case about 10-13 percent of the time), then I will deal with it. I am a single mom with no family to help so I am thinking in short term goals at this point-see my daughter graduate from school in 7 years. I have to just deal with this day by day and pray I have made the right choice. I wish you strength and clarity to make the best choice for you and your family. Sending hugs your way:)

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No stent Terri...just the coils...

It is all so overwhelming, but from reading everything you are doing...you are headed in a good direction...Thoughts to You ~ Colleen

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Hi Cindy- What a difficult position for you to be in. I worry about being here for my kids. I could only imagine doing this while going it alone. I wish you all the best with your surgery.

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Hello, I’ve recently read your post and wondered if you could maybe answer a couple of questions for me? I had coiling on a basilar tip aneurysm (10mm) two weeks ago. I was diagnosed after showing symptoms of weakness pain numbness in the left side of my body, face and head. The coiling was a success however my symptoms are now far worse than they were before. I’m 33, active with a young family and I’m scared that I will always have these symptoms from now on? Did ou experience anything like this? Many thanks for taking the time to read this, Deborah UK.

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Hi Teri, I had a clipping 1 year ago on the 28th of this month. Looking back, The emotional stuff of the “what if’s” was the hardest part of it all. I was released 2 days after my surgery. Went back to work part time the next week. In a month i was in full swing and took a flight for a meeting. Coiling was not an option.

i personally had to find a peace with the what if’s before I could do surgery. I realize I’m very blessed!
I encourage you to seek peace, calm your spirit, and accept you really have no control of the outcome.
Trust God! My was a giant, so we did surgery in 3 weeks from the first MRI.

Good luck and stay positive, find a close friend to cry with…

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Hi Rose- I am so glad your recovery as gone so well. I truly hope for the same, no matter what I choose. I think I am over thinking everything and focusing on the what ifs and the unknowns. I am meeting with a neurosurgeon tomorrow so I will have more information. Thanks.

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Terry I hope that things go well for you. I to am a young single mother whho was diagnosed with an aneuroysm. My doctor is telling me I need clipping. THat it is gigantic and I am scared more so for my children becasue I am all they got. I have limited famly to help with them I was a only child so it is going to be tough. If you need to chat or something looking for a shoulder to cry on so to speak reach out to me as I am here and totally get what you are going though. Maybe we can learn through this process together.

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Terri-

I can so much relate to your story. I'm a 33 year old mother of a 29 month old and a 9 month old. I was diagnosed much like you- because of migraines. Long story short.... I had open crani and clipping of my annie just over 5 weeks ago. Coiling wasn't really an option for me because my annie was shaped like yours and had wide neck also. I went to two surgeons who also do the CE and both told me that clipping would be best in the long term. So, that's what I did.

I'm doing better this week than I had been- but I won't lie- it's been a little tough. My vision isn't great post op and I feel like I'm on an emotional roller coaster. I just keep reminding myself that the annie is GONE and I am here to take care of my family. Things could have been so much worse. We are both blessed that ours has not ruptured and you can make a choice as to what to do and get the thing fixed.

Big hugs and many prayers to you. Feel free to ask me any questions you'd like as the memory is all very fresh and I'll share whatever you need.

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Hi Terri,

My heart goes out to you. My husband was just diagnosed (similarly with an incidental finding on an MRI/MRA) with a 6mm ICA - not symptomatic. we too have young children , 10 and 14. The information out there is overwhelming and conflicting. We've sought (2) opinions so far - both at large institutions that do a good volume of these cases. One neurosurgeon said get the Angigram soon and then we can determine watch and wait vs treatment. The other neurosurgeon said "you need to decide if you want to treat this, only get the angiogram if you have decided to persue treatment". He said the MRA was really clear and cited the risks of the angiogram. Your case certainly supports the angiogram for further diagnostics. The only thing clear in the research we've done is that there is little conclusive opinion or supporting data on whether to treat or how to treat. We are seeking a third opinion even before he gets the angiogram - It sounds like you are receiving some guidance on this from the neurosurgeon and interventional radiologist. Our frustration thus far has been being sent home from the second opinion and directed to make a decision on whether to wait & wait or treat without an actual recommendation from a neurosurgeon. I agree with you that the endovascular procedure and the open brain surgery seem like two different levels of decision - with two different sets of risks. Doing your homework is the best thing you can do -

For whatever this is worth I read an article that talked about treatment options for blocked arteries - stenting in lieu of cardiac bypass surgery - and how long it took for cardiac surgeons to agree on this less invasive procedure as being a first line of defense. I'm not sure what this means in your/our scenarios but I think it's true that it takes time to turn the corner on a standard of care - but less invasive seems pretty persuasive to me. Keep us posted - we'll be thinking of you.

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Hi Jean,

Like Terri ,I am scheduled for clipping too. I was not given the option of coiling. However would not have picked it either. Lifelong anticoagulation was just not what I wanted ..coils compacting..frequent follow ups..headaches ...Coiling is a good choice for emergency surgery for SAH...

Of course clipping carries a higher morbidity risk but in good hands the risk is 3-5 %

Just my take on the coiling/clipping options..

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hi Ashlan-i have coils but don't know what you mean by lifelong anti coagulation,i don't have frequent follow ups, same as anyone. soon I will be on 5 yr plan. got no headaches unlike the people who get clips, I had no choice since I was emergency sah but if I had to choose I would take coilng any day over cranny clips. Peace love and understanding, Bless you all