Putting Off Surgery

I was very eager to get the surgery out of the way until I began thinking about the ramifications of any complications from the procedure. My neurosurgeon suggested a shunt procedure first and if they couldn't get to it he would be on standby for the other surgery. So I began thinking about the math/odds. I only have 1% chance each year of it bursting...yet there is a 4% chance of the shunt killing me and I have a 25% chance of the surgery killing me. Being a single mother of a beautiful young lady entering her senior year...I'm thinking maybe I will wait. Does this make sense?

Amy,

What size is your aneurysm?

I know that I was told mine had a 2% risk of rupture in the next 6 months the day I met with my surgeon. My surgery was done 3 1/2 weeks after that appointment and my surgeon was surprised to see that there was an aneurysm growing off of the back of my aneurysm that was not seen in any of the images that was about to rupture. I hemorrhaged during the surgery and he told my husband that we avoided a catastrophic failure by having the surgery that day. I just don't know how accurate their numbers are. These things scare me. I have a small one being watched now and as soon as my surgeon says that he can fix it with surgery, I plan on doing it.

I know it is hard to decide and the odds all sound scary. Did your surgeon tell you that there was a 25% chance of the surgery killing you? That seems really high compared to what I have read. I imagine it depends on exactly where the aneurysm is located and I know every location and type of aneurysm changes the percentages. I would probably make the same decision as you with a daughter just entering her senior year if those were the odds. It is so hard. My thoughts and prayers are with you on this.

God bless,

~ Carol

Hi Amy,

Your dilemma certainly makes sense to me. I can entirely see why it is a decision to be carefully weighed if you are diagnosed with an aneurysm that has not yet ruptured. It isn't a dilemma I had to encounter personally, because they only discovered mine when it burst! But like I said, I think you are completely right to want to consider all the variables before going ahead.

I think the vital thing is to have every piece of information at your disposal and be certain it is as accurate as possible. The risk per year of rupture is affected by many things: size and location of aneurysm, age of patient, blood pressure of patient, lifestyle of patient, etc, etc... I think the often quoted 1% per year is quite general figure. Also - the figures you mentioned about the risks of the surgery - I am not well informed regarding the risks of stents, but those stats seem very high when compared to the risks from ordinary coiling. Perhaps there is indeed a very big risk increase with the inclusion of a stent... I'm not certain - just a 25% fatality rate on the surgery seems really high to me.

What is your neurosurgeon saying? I assume they feel the best course is to treat it? Did they explain the thinking behind it? I think you are entirely right to be weighing it up carefully, and certainly should do what you feel most comfortable and safest with.

Hope you can find all the info you need and make the best decision - your reluctance makes total sense in your circumstances - I'd certainly be cautious in the same situation.

Bruce.

I don't know where I got the 25%...maybe I misinterpreted something I read. The other stats I got from my neurosurgeon. I guess the prudent thing to do is call them first thing Monday morning and explain my reluctance to go forward at this moment in time. They are meeting as a team on Tuesday to schedule my surgery. Ugh.

I've not been told it was in a tricky place or anything like that. I've just always had a fear of having an angiogram with the risk of it breaking off a piece of plaque and that killing me instead of the surgery itself. Lord...I am a worry wart I know...I just don't want to do anything that expedites my death!! Ugh. My daughter's father has been out of the picture since she was 5 years old....I can not even fathom her having to go live with that creep. She is an exceptional young lady...very self motivated with high hopes of going to Harvard! I HAVE to be here for that sweet darling until she is herself an independent woman.

HI Amy-

I totally get what you are saying. I was very scared of the possibility of surgery due to the possible risks and complications. Even though the chances of those things happening were small, they were still very worrisome. However, what bothered me more was the idea of the aneurysm rupturing and even worse things happening. I have three young children and the idea of not being here for them deeply upset me. I did a lot of research. I interviewed several neurosurgeons (two of which are top docs in my state). After meeting with them and choosing my surgeon, I was actually at peace with my decision to have the clipping done.

I had my surgery May 6th 2013. There were no complications and I was told on July 3rd at my follow up that I was "recovering with flying colors." I am pretty much back to normal.

My suggestion to you- get as much information as you can. Ask lots of questions. Take notes. Take someone with you to see the surgeon. My husband came with me. There is so much information and it can be overwhelming. This way you can talk to the other person about what the doctor said. Get a second and third opinion. Knowledge is power. Only you can decide what is best for you.

Terri

Amy,

Have you had a second opinion to help you make your decision?

When you note surgery, do you mean open surgery w/clips?

Why did your neurosurgeon suggest a shunt procedure first? Your current symptoms or?

Your intro record to us...is that you have a 7mm Rt internal carotid artery supraclinoid ...

My diagnostic angio record: L ICA supraclinoid...7mmX 5mm... I had three ER's over 29 days...numerous docs between the first and second... skipping here and my prior history...

Because of our similarity...in the diagnostic anatomy/size...I pray that you will seek a second opinion if you have not...that you expand searching stat data...it varies...

And, because, some stats in my day of procedural record:

Hunt and Hess Grade 1...mild headache, alert and oriented, minimal (if any) nuchal rigidity;...(which is supported by the third ER data a/w/a of my family w/me...)

Fisher Grade 1: 'no hemorrhage evident'...is highly questionable...third ER CT definitely qualifies 'minimal high density...(anatomical data)...' and the reason for admittance and referral for the angio for exact diagnosis...

H&H are generally more considered to be diagnostic...however, the results are somewhat stats...if not, they should... again, my personal opinion...the diagnostic value of them has been "learned"...

My reason for sharing this is to display/suggest questionable stats... (my personal opinion...no expertise)

I have also promoted Two Books (on this forum) from the BAF website...they fairly readily explain aneurysms... for ourselves and our family/friends...

Amy, continued prayer...not knowing your family other than of your daughter...please have her / other advocate w/you during your meetings w/the docs...and during your decision process...

Pat

Pat - I'm sorry I don't understand what you are trying to say..,.what different opinion do you think the second neurosurgeon would or should give?

HI Amy...If you have a choice on this surgery...and feel good about your decision...you know your body best...and yes ... this does make sense...thoughts out to you...I know this wasn't easy...~ Colleen

Thank you Colleen. I appreciate that.

Amy,

Please forgive my personal opinion...My thought / opinion...on a med second opinion...is that...of another professional...based on his/her experiences (their # of annies treated annually, their results, their suggestions based on their knowledge of ICA aneurysms...not just any/all stats...

If a second opinion is essentially the same as the first...it should so help your comfort in your decision.... You did ask "does this make sense?"

When we talk stats...I gave you my data...identical to yours except in opposite hemispheres...

At (6mm to) 7mmX5mm...I had three emergencies for leaks/ruptures...over 29 days...

So our "personal" stats are at a 50% level of rupturing at 7mm...of an ICA supraclinoid aneurysm..

I had essentially perfect health...headaches began after two MVAs four months apart...I was treated as a depressed menopausal woman...no tests done...even after my first ER/syncope...

You have been blessed securing diagnosis of yours before a potential rupture...

Bottomline...it is all your decision...you may seek a second med opinion and ask him/her "does this make sense?" ... and still have comfort in your personal decision... that is the right, the privilege, of each of us...

Prayers that you do what is right, what is comfortable, for you...

Pat

In regards to second/third opinions...

When I was first diagnosed, I saw a neurosurgeon at my neurologists office. Just based on the MRA, he thought I might be a good candidate for coiling. He referred me to a specialist in coiling. The next neurosurgeon (coiling specialist) looked at my MRA and also thought I would be a good candidate for coiling. At the point he ordered an angiogram. When I left the office, the options on the table were coiling or wait and see. My follow up after the angiogram was a big shock. The aneurysm was bigger than expected, bulged out in two places (think Mickey Mouse ears) and the neck was really wide.

The doctor said I *could* do a pipeline, but because of my young age, they did not have the long term prognosis. (Pipeline has only been around 15 years). He said if I was in my 60's he would do it no problem. He said that I could still do it, but referred me back to the other neurosurgeon for another opinion. I wound up seeing three other neurosurgeons. They all felt clipping was the best option for me. Based on that, I knew clipping was my best option. At that point, it was to decide which surgeon was best for me.

Terri,

Thank you so so so very much for the detail you provided here...

Prayers far more will come forth with the results of their second++ opinions...

You were blessed...

Pat

Thank you Terri for sharing your story. I do realize that things are not always the way they appear on an MRA. I will be thankful albeit scared to have something sent up through my veins into my heart...but it will allow them to see if there are any others. My surgery/stents will take place simultaneously to the angiogram. Did you have the surgery yet?

Amy-

I had my surgery May 6th. I am very happy to say that the surgery went went, with no complications. While I did experience much of the same issues as everyone else (fatigue, depression, anxiety) they did pass pretty quickly. A lot of people cannot believe that I had brain surgery a mere 3 months ago.

Terri

I am so happy for you Terri! What a relief it must be to have it all behind you now.

My angiogram/coiling is set for August 28th. They told me if it did not require stents I could feasibly go home the same day...cool!