What do I do?

General
1

Hi I'm quite new to this group and haven't had a chance to introduce myself. I'm a fifty seven year old female whose 5mm aneurysm on the tip of the left carotid artery was found incidentally when I had an MRI to see if my neurological symptoms were because of MS. They weren't, they were down to a long term B12 deficiency. I didn't think I had MS as I was responding to b12 injections, so, as with all of you I'm sure it came as a huge shock. I've seen two neurosurgeons now. They have both said I am at a very low risk of rupture. (although I'm asthmatic, and when I get a cold I get a chest infection and cough sooo violently for days/weeks this concerns me) However, their agreement ends there! The first surgeon said that coiling would carry a 3-5% risk of complication and a short hospital stay, and craniotomy would carry an 8-10% risk of complication and that I shouldn't lift heavy weights.

The second surgeon I saw last night said they both carry the same risk and length of hospital stay! That doesn't make sense to me! They both said that my risk of rupture is much less than risk of surgery, but that the violent coughing fits are an unknown risk. The second surgeon said nobody knows what makes an aneurysm rupture. They have both said they will do the surgery if I wish. They both think I may need a stent if I have coiling, but the second surgeon said they can 'fur up' both surgeons said I would be on Asprin for life (not ideal being asthmatic)

Sorry for rambling, but I'm so confused now. I guess what I'm asking is; what surgery did people with unruptured aneurysm have on here? Why did you choose to have it done? and what was the outcome? Did anybody have any problems post operatively and what was your recovery time?

Many Thanks for reading my rambling! :)

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Shaz, conflicting opinions are quite common, I am afraid, but it is good news that both doctors think your risk of rupture is low. Aneurysms are highly individual, so making comparisons here may not be helpful. Whatever you decide, we are here for you.

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Thank you Dancermom. I think I just wanted to know why people had their unruptured aneurysms treated. If anyone elected to do it just for peace of mind? and which method they chose and why?

Thanks for the support x

4

Hi I found my 9.5 mm annie by chance in February and just had it clipped on the 20th of October. I was told to have it operated on due to the size and the fact that the bottom was wide so it would not hold a coil. I trusted my Dr. and now it is behind me. I was told that if it is under 7mm they watch but anything over they like to treat, again due to mine being larger at the bottom and I also had a small bump on the actual annie.

I think you have to go by what the surgeon says and if they would have told me to watch it, I would have as brain surgery is a scary procedure.

Every aneurysm is different as in all of us so I guess it will be you that makes the final decision but if the chance of rupture is low maybe you can watch it for a period of time to make sure it doesn't grow?? Scary stuff either way I know.

Good luck with your decision. I am a 55 year old female. Healing well so far just sleeping a lot but I feel okay considering :)

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I hate the "statistics" approach I'm not sure they are ever helpful. its sort of like the disclaimer miracle weight loss products offer "Individual results may Vary" In any event based strictly on what you have said here it would seem that you have a "small" annie for which statistically the risk of rupture is low. In fact its lower than the risk of SURGICAL complications. There is a perfect reason WHY numbers are meaningless here. The complications from a rupture are far more serious than likley from surgery

Were I you I would discuss this with a good neurologist. They don't do surgery but they know brains. The main things I'd consider the location of the annie and your age. Generally the older you are the more difficult it is rehab from a frontal bleed if the worst were to happen. The next thing I would ask is how would the less invasive procedure effect a possible craniotomy. Can you do the lower risk procedure first and still have good results with a bigger procedure? The best question is eye to eye what would you do with me if I were your mother? That one catches them off guard. The old "what would you do if you were me" has been asked hundred of times, they asner that almost automatically and likely a simple restating of risks. Also always keep in mind when the only thing a guy does is surgery all he has to sell is surgery He gets a coupla hundred dollars for a consult in the same amount of time in the OR, he can make 20 grand. If he isn't wild about surgery its one of 2 things. he doesn't really think you should have it OR he doesn't want to do it. I will say brain surgery doesn't seem to make a lot of sense for peace of mind.

Good luck with the whole process. There is a multitude of experiences here to draw from.

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Shaz49,

Dancermom, Brenda, and tj1 all give good sound advice in my opinion. I had an aneurysm discovered on a follow up angiogram from a burst. It was coiled, I spent one night in ICU and was able to go home the next day. But everyone is different, there are so many variables when dealing with the brain, the anesthesia and the person. I think it boils down to working with a doctor whom you can trust. It’s great news that both doctors suggest low risk. tj1 is really right when you ask professionals what would they do for their mother, daughter, wife, it brings a whole different dimension of emotions into the equation.

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I had 2 unruptured aneursyms discovered about 2 yrs ago. I was fortunate that a friend of mine was friends with the best neurosurgeon at Johns Hopkins and I was able to see him. After having an angiogram I was told that clipping was my best option due to the shape, size and location of them. I very much trusted this surgeon and believed it to be my best choice.

The clipping is a scary thought, no lie and recovery does take some time but my surgery went well and I was back to work in 5 wks. Course I think this is pretty much like giving birth, while the outcome is good everyones is different and you can't compare.

I know a lot of people like to research their options but since I felt total trust with my surgeon I really didn't do much research. I tried to stay positive and would only look at the good positive things on line.

I wish you the best on finding the right surgeon, one you trust and feel comfortable with, that's so important. ((hugs))

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Everyone here has given great advice. I'm not trying to sway your decision but here's my story in case it might be helpful but this is truly only a decision you can make. I knew nothing about aneurysms or treatments until mine ruptured. My 6mm aneurysm on my carotid artery behind my right eye ruptured last year (I was 56). Both the neurosurgeon and neuroradiologist went into the OR with me and they told my family they would coil if they could and clip if necessary and they said coiling was less risk than clipping. Mine was coiled by the neuroradiologist without any complications but I still had a 10 day hospital stay (8 days in neuro ICU) because it had ruptured vs. 1-2 days stay for non-ruptured coiling. So there is a cost part of decision as well. I have had follow up angiogram that showed some small coil compaction which is more common when the aneurysm has ruptured. For now, my compaction is very small, low risk and is just being watched but I did get a 2nd opinion before agreeing with this strategy. If you want another medical opinion you might consider having a neuroradiologist take a look at your records. I follow up with my neurosurgeon but he consults closely with the neuroradiologist and they make a plan together.

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That would be really confusing for anyone. Have you had an angiogram? You only referred to the MRI and most of the surgeons here require an angio before they give you an opinion, especially about which type of surgery you should have.

My neurosurgeon scheduled an angio within 2 weeks of first seeing him - he said he could not discuss options for surgery until he sees the results of the antio. He told me on the followup that if my annie burst, I would not be alive by the time I hit the floor, that a craniotomy was not an option because it would probably leave me with brain damage, and therefore my only option was a coiling/stent. I do take an aspirin a day because of the stent, but with a craniotomy, this is usually not needed.

A lot of times when doctors look at risks, they also assess your age. I had my surgery at 56 and my neurosurgeon said at that age I should have the surgery soon. If I was much older, he might have a different opinion.

After coiling and stent, I was in NICU for 2 days and a regular neuro room the 3rd day. A lot of people are only in the hospital for 2 days from a coiling, but it depends on each individual. A craniotomy is usually a longer hospital stay.

I see you are in the UK, so I hope you get answers from people there who are more familiar with the health care - I think a new group was just formed for members from Europe (look on the right of the screen). You can also search for members from close to your area and message them. To do this, click on members above, then type in your location under search - it will bring up members that way.

Complications are more common with clipping - but clipping is considered permanent. Coiling requires followups every year for the first few - then some people go for longer f/u after some time. My new surgeon wants me to have them annually - by MRA. I think most people here with unruptured annies would definitely say that brain surgery made a lot of sense for peace of mind - I know I and others here worried constantly until they had their surgery.

And, I would certainly worry about coughing bouts with an annie - I found this: " That it causes an increase in intracranial pressure from venous dilatation we know from observing the response when measuring the cerebrospinal fluid pressure. The intracranial venous dilatation is presumably obtained at the expense of cerebral capillaries and expulsion from the cranial cavity of such a proportion of the cerebrospinal fluid as can be accommodated by the spinal subarachnoid space" -http://www.medmerits.com/index.php/article/Cough_headache/P4

Good luck and I wish you well - this is not a journey we have picked, but having the support of others who have gone through it helps tremendously. Sherri

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I have read that some patients 'may be' a candidate for coiling - but there are specific criteria - ask you neuro; they should be able to tell you if you are a candidate. If you are it really is no big deal; just an overnight; they do an angiogram like I just had..I would ask; all the best to you :-) There is tons of great info in this site.....good luck :-)



shaz49 said:

Thank you Dancermom. I think I just wanted to know why people had their unruptured aneurysms treated. If anyone elected to do it just for peace of mind? and which method they chose and why?

Thanks for the support x

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sorry your questions are not being answered correctly, you don't need a nuerologist as recommended below. Hopefully more case history posts will follow. Mine was sah so i wont be of much help but i will keep you in thoughts and prayers~~

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they treat them to avoid a devastating rupture and possible death, trust me yyou do not want a rupture

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I had 2 aneurysms. One was 8 mm and the other was 5mm. Right carotid. I had endovascular surgery. In the hospital on Jan. 21 and home on Jan. 22. My neurosurgeon, Dr. Henry Woo used a pipeline. Its like a diverter valve.

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Hi Shaz, I’m in the uk too. I have a 6mm aneurysm on the anterior comm. artery. I am 57 and like you was given pretty much the same facts and percentages. The doctor also left it up to me to decide what to do. I opted not to get treatment and was scanned about a year later and thankfully there was no change. However, my quandary now is that the hospital has not offered any subsequent scans to check me in the future. This isn’t what I thought was going to happen and I’m in the process of trying to get some more info from the hospital.

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hi Shaz, don’t ever apologise or feel like you are rambling. We have All had highly anxious experiences with our aneurysms, this is the perfect place to share how you feel.

I am still deciding on surgery and dancermon is absolutely right. Each aneurysm is highly individual. What I can say is that had my risk of surgery been much lower than rupture I would opt for surgery straight away.

I too have been told I’d be on aspirin for life (I’m 33 and was hoping to try for a second baby) & my only surgical option is a stent (ped).

However you proceed just make sure that you feel in control of your choice and that you can change your mind at any point. hugs

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I had both my aneurysms coiled, one of them stented, though I’m considered high risk of rupture… However i would go for a third opinion, my doc told me even sneezing could potentially be dangerous…

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AndreaLynn said:

I agree andrea, we cannot be timid with these drs-they aren't going to openly tell you they are new or have had bosched attempts at surgery etc etcHi,

Have you considered a 3rd opinion? Were you able to ask each doctor , how many clippings and coilings have each of them done in their lifetimes? Some people may not think to ask such a question, but I would. I don't have faith in odd's. I would think (If I were in your shoe's) i'd like to know which procedure is considered the best approach. Good luck,

Regards,

Andrea Lynn

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Hi,

I read your post and all the replies and I bet you're even more confused. Frankly, I'm shocked by the differences in advice from the "experts." The neurologists, the neurosurgeons, the neuroradiologist, why can't any of them agree. You can research, do the statistics, talk to people, and I would say to get a third opinion. My first two opinions were different and I was still afraid so I got a third. She agreed with one of the doctors and in the end, after much heartache and soul searching, I am going to have my aneurysms clipped by her. I had an angio first and two more were found. I have 3, they're small, one with a bump, but I am a third generation with the other two ruptured and didn't make it so I really have no choice. Like you're probably seeing, everyone is different so keep checking here and hopefully you'll get the support you need.

Take care,

JKnights

ron k said:

they treat them to avoid a devastating rupture and possible death, trust me yyou do not want a rupture