I am 13 months post clipping surgery. I had 3 known unruptured aneurysms (6 mm, 5 mm, and smaller one). I knew I had annies for 5 yrs, but during the last year they had grown more. At that point, last year, it made sense to treat. Coiling was not an option for me due to risk to my kidneys. My neurosurgeon told me that 2 were on the right side, and that he might even be able to reach the one behind the eye on the left side through the right side approach. It was a very emotional time waiting for the surgery. I have 3 small children (now 11 and under). I had faith in God and great confidence in my doctor, being a Univ. hospital professor performing over 200 surgeries a year. My surgeon was able to clip all 3 annies, and found two smaller ones which he also clipped; two of the annies also ruptured during the surgery, which he believed were probably high rupture risks had we not treated. I did not suffer memory or cognitive losses, but I can tell you recovery was difficult. Even when someone gets treated for unruptured annies, they may experience similar effects than those treated for ruptures... Temporary loss of control of emotions, fatigue, loss of feeling on skull (feeling mostly returns overtime), depression, loss of sense of smell and taste (I did not loose mine). Hopefully you have looked into what recovery involves. If you're a positive person, you should do well. Since surgery, I deal with increased sensitivity to sound, and stimuli to the brain (flashing lights, bright lights), more ringing in the ear on the side of surgery, severe insomnia. However, I have learned to accept my new limitations. What was difficult to accept at first is okay now. The year of treatment was very challenging. A year later, my life feels so much more normal, though it's not exactly the same as before. Am thankful to be here for family. God has been gracious to me. He makes no mistakes in what He allows in our lives.
My wife is 20 years out from her ACOM rupture and is doing fairly well with exception of migraines triggered by electrical devices - she has a older stainless steel clip and stainless steel bone flap sutures that conduct electro-magnetic fields to the brain structure. Fortunately with the help of a novel treatment called EEG Neurofeedback, her migraines have been significantly reduced in intensity and duration thanks to it. It only took 18 years to find that treatment but thank God we did.
Fortunately for you the surgical techniques are much improved and I think you will do well. Good luck and God Bless!
my ruptured one was on the anterior comm artery - 8mm. I didnt know it was there until the rupture but I made a surprisingly good recovery according to my neuro
Hi Heidi! You are very lucky to have yours clipped before it ruptures. You will do great! I also had an a-comm aneurysm but mine ruptured. It’s two years later and I’m doing fine. Best of luck! Jen
Hi Heidi, I am having my 6 mm irregularly shaped unruptured aneurysm with a daughter clipped this week. It’s also on my anterior communicating artery I found it incidentally and I feel so fortunate to have found it before rupture. the waiting has been so difficult, but as I approach surgery, my fear is being replaced by relief. I’m going to Johns Hopkins to a wonderful surgeon who has done many of these- they have an aneurysm center there. I am thinking of you and wishing you a good surgery and recovery! Soon, we’ ll both be on the other side of this. Take care, Joan. By the way. I’m so glad you asked this question!
Can I ask you who you are seeking at Hopkins? I have a 3 mm unruptured aneurysm in the same location. I've been monitoring it for a few years and it is thankfully stable. After reading this blog, I am thinking of going to Hopkins to get a second opinion, since I live in DC and my neurologist is a surgeon here in DC, but he does not specialize in aneurysms per se. It would be appreciated if you could indicate who you are seeing at Hopkins since you seem to be quite positive about him.her.
With my appreciation,
Michele
Joant said:
Hi Heidi, I am having my 6 mm irregularly shaped unruptured aneurysm with a daughter clipped this week. It's also on my anterior communicating artery I found it incidentally and I feel so fortunate to have found it before rupture. the waiting has been so difficult, but as I approach surgery, my fear is being replaced by relief. I'm going to Johns Hopkins to a wonderful surgeon who has done many of these- they have an aneurysm center there. I am thinking of you and wishing you a good surgery and recovery! Soon, we' ll both be on the other side of this. Take care, Joan. By the way. I'm so glad you asked this question!
I've been logging in every day since I started this discussion, but I've been afraid to read the responses. I don't know why!!!! I sat down with hubby, grown daughter staying her to help me, and our 14 year old daughter and son today. We talked about the recovery process for my kind of surgery and what kinds of things to expect. I think it went okay. I think it gave me the courage to follow all your responses to this discussion.
I'm glad I asked too! Thank you for sharing. When will you have your surgery? I am having mine on the 9th of June. I am relieved, anxious, thrilled, and terrified!
Heidi C
Utah
Michele said:
Dear Joan,
Can I ask you who you are seeking at Hopkins? I have a 3 mm unruptured aneurysm in the same location. I've been monitoring it for a few years and it is thankfully stable. After reading this blog, I am thinking of going to Hopkins to get a second opinion, since I live in DC and my neurologist is a surgeon here in DC, but he does not specialize in aneurysms per se. It would be appreciated if you could indicate who you are seeing at Hopkins since you seem to be quite positive about him.her.
With my appreciation,
Michele
Joant said:
Hi Heidi, I am having my 6 mm irregularly shaped unruptured aneurysm with a daughter clipped this week. It's also on my anterior communicating artery I found it incidentally and I feel so fortunate to have found it before rupture. the waiting has been so difficult, but as I approach surgery, my fear is being replaced by relief. I'm going to Johns Hopkins to a wonderful surgeon who has done many of these- they have an aneurysm center there. I am thinking of you and wishing you a good surgery and recovery! Soon, we' ll both be on the other side of this. Take care, Joan. By the way. I'm so glad you asked this question!
So scary that it ruptured and so wonderful that you are okay! Payers from my family and wel-wishes go out to you and your family!
Heidi C
Utah
feline said:
I knew I had a 6mm aneurysm of the anterior communicating artery, and it was a case of watch and wait , 7 weeks ago it popped. I realised what was happening I live a long way from the local hospital, but decided to ask my son in law to drive me. I walked in to the A and E department and then I dont remember anything for 3 days , I was transferred to a specialist hospital, my aneurysm was coiled, and I cannot believe I am so well. My only problems are tiredness,and short term memory loss. I am 73 and also have an acoustic neuroma
I was actually relieved when it popped as living with it was a worry, but they dont do anything if they are under 7mm. I live in the UK, so it may be different where you are
Stay positive, put your trust in the doctors, if I can do so can you
Thank you, my friend in Ontario! I do not know whether my surgeon prays before surgeries, but I will have a whole team of folks praying for me pre and post surgery. Would love to feel yours too. I will be having mine clipped on 6/9.
Heidi C
Utah
David Andrus said:
Dear Heidi,
You certainly have my prayers. I know what it's like waiting for the surgery. But please know that these people (the neurosurgeons) know what they are doing. When I learned that my surgeon prayed before each surgery, I knew I had the right man. I'm sure you will be fine. Just remember that a friend (me) had this surgery in 1999, and is still doing fine.
You and your husband have been through the ringer and my heartfelt prayers go out to you. Thank you for your reply and for the resources!
Be well,
Heidi C
IrisD said:
Hi Michele,
Apparently ACom and PCom annies are more prone to rupture, but I am not sure why? (Perhaps smaller arteries?) I don't really think that doctors can predict when/if an annie will rupture. We are also watch and wait for a small 2mm ACom annie. My husband was treated by coiling for a 6 mm oddly shaped annie. Unfortunately, the annie ruptured during the procedure. My husband was probably a better candidate for clipping, not coiling, but we were inexperienced with anything like this, and sort of rushed to make a decision. He went into the hospital due to a TIA, on Sunday morning and was undergoing coiling Tuesday morning. We never saw a neurosurgeon in the hospital to consult with us about clipping. So, now that this second was has been discovered, after consulting with 3 separate doctors, we are "watch and wait". The neurosurgeon we saw, also said it is very rare for something this size to rupture. My advise to anyone is not to feel pressured to make a decision without consulting with both an interventional radiologist and a neurosurgeon to determine, which procedure is safer for your particular circumstances. Heidi there are a few pages on facebook (anneurysm survivors and aneurysm/avm survivors Joes Niekro Foundation), where you will be able to find many people who have undergone both coiling and clipping procedures, pre-rupture, and have done and are doing very well.
Roger...you have an amazing story...of the Mayo Clinic...I so wish I had been privileged to have their care...The son of a friend of mine was sent back to Mayo for his cancer care...The b-i-l of another friend goes back there for his (cannot remember name) health status...Through all these years, Mayo has maintained its reputation...now, for a small smile...I get their on-line newsletter...when I changed my email address, it was rejected 9as w/a number of the big corporate/commercial sites) Mayo did whatever...and, was able to accept my email...the only place that has been so kind, so excellent...to, again, use their expertise to make some tiny fix...and, I have not had the privilege of their patient care.
Roger M. said:
Heidi, this my not be what you want to hear: I had a right PCA bleed nearly 20 years ago, and I am 79 years old. Surgery was considered but on the recommendation of Mayo Clinic I opted for watchful waiting. A few years later an interventional procedure was tried but discontinued after serious neurological issues were identified. Life has moved on and I am still watching and waiting. I have essentially no neurological deficits and will likely pass on for some other reason. I have had the joy of seeing our three children marry and produce ten living grandchildren. Life is good and each day is a blessing!
Roger, I am overjoyed to hear that you have been blessed into later years with the great gift of enjoying your children and their children be strong and grow and love! God be with you!
Roger M. said:
Heidi, this my not be what you want to hear: I had a right PCA bleed nearly 20 years ago, and I am 79 years old. Surgery was considered but on the recommendation of Mayo Clinic I opted for watchful waiting. A few years later an interventional procedure was tried but discontinued after serious neurological issues were identified. Life has moved on and I am still watching and waiting. I have essentially no neurological deficits and will likely pass on for some other reason. I have had the joy of seeing our three children marry and produce ten living grandchildren. Life is good and each day is a blessing!
Dr. Tamargo at Johns Hopkins Anneurysm Center, I do really like him, and he has a stellar reputation. Good luck!
Michele said:
Dear Joan,
Can I ask you who you are seeking at Hopkins? I have a 3 mm unruptured aneurysm in the same location. I've been monitoring it for a few years and it is thankfully stable. After reading this blog, I am thinking of going to Hopkins to get a second opinion, since I live in DC and my neurologist is a surgeon here in DC, but he does not specialize in aneurysms per se. It would be appreciated if you could indicate who you are seeing at Hopkins since you seem to be quite positive about him.her.
With my appreciation,
Michele
Joant said:
Hi Heidi, I am having my 6 mm irregularly shaped unruptured aneurysm with a daughter clipped this week. It's also on my anterior communicating artery I found it incidentally and I feel so fortunate to have found it before rupture. the waiting has been so difficult, but as I approach surgery, my fear is being replaced by relief. I'm going to Johns Hopkins to a wonderful surgeon who has done many of these- they have an aneurysm center there. I am thinking of you and wishing you a good surgery and recovery! Soon, we' ll both be on the other side of this. Take care, Joan. By the way. I'm so glad you asked this question!
I'm having my surgery this week!! I've been so nervous, and scared to death it was going to rupture. I am now feeling so much gratitude for finding it before rupture, and I am so glad the surgery is finally going to take care of it. I will try to let you know how it went before you go--just not sure how long it will be before I can get back on the computer Take care and good luck-I know just how you feel! Joan
heidicalder said:
Joan,
I'm glad I asked too! Thank you for sharing. When will you have your surgery? I am having mine on the 9th of June. I am relieved, anxious, thrilled, and terrified!
Heidi C
Utah
Michele said:
Dear Joan,
Can I ask you who you are seeking at Hopkins? I have a 3 mm unruptured aneurysm in the same location. I've been monitoring it for a few years and it is thankfully stable. After reading this blog, I am thinking of going to Hopkins to get a second opinion, since I live in DC and my neurologist is a surgeon here in DC, but he does not specialize in aneurysms per se. It would be appreciated if you could indicate who you are seeing at Hopkins since you seem to be quite positive about him.her.
With my appreciation,
Michele
Joant said:
Hi Heidi, I am having my 6 mm irregularly shaped unruptured aneurysm with a daughter clipped this week. It's also on my anterior communicating artery I found it incidentally and I feel so fortunate to have found it before rupture. the waiting has been so difficult, but as I approach surgery, my fear is being replaced by relief. I'm going to Johns Hopkins to a wonderful surgeon who has done many of these- they have an aneurysm center there. I am thinking of you and wishing you a good surgery and recovery! Soon, we' ll both be on the other side of this. Take care, Joan. By the way. I'm so glad you asked this question!
Many thanks! I really appreciate your responsiveness. Good luck on your procedure! I know Hopkins has a great reputation, and you are in good hands. I wish you a speedy recovery, Michele
Joant said:
Dr. Tamargo at Johns Hopkins Anneurysm Center, I do really like him, and he has a stellar reputation. Good luck!
Michele said:
Dear Joan,
Can I ask you who you are seeking at Hopkins? I have a 3 mm unruptured aneurysm in the same location. I've been monitoring it for a few years and it is thankfully stable. After reading this blog, I am thinking of going to Hopkins to get a second opinion, since I live in DC and my neurologist is a surgeon here in DC, but he does not specialize in aneurysms per se. It would be appreciated if you could indicate who you are seeing at Hopkins since you seem to be quite positive about him.her.
With my appreciation,
Michele
Joant said:
Hi Heidi, I am having my 6 mm irregularly shaped unruptured aneurysm with a daughter clipped this week. It's also on my anterior communicating artery I found it incidentally and I feel so fortunate to have found it before rupture. the waiting has been so difficult, but as I approach surgery, my fear is being replaced by relief. I'm going to Johns Hopkins to a wonderful surgeon who has done many of these- they have an aneurysm center there. I am thinking of you and wishing you a good surgery and recovery! Soon, we' ll both be on the other side of this. Take care, Joan. By the way. I'm so glad you asked this question!
Def go to Hopkins! You need to get an opinion from the BEST neuro in your area! My small ACOMM aneurysm ruptured. Knowing what I know I’d never advise to “watch and wait” unless a top neurosurgeon at a top-rated neuro hospital tells you that you’re inoperable. Many don’t survive the rupture. Good luck
Thanks very much Jennifer. I had read that the small aneurysms only very very rarely rupture -- something like .0125% risk -- and that the procedure is more risky than the watch and wait. My 3mm has been stable since found three years ago and so I have been somewhat at ease thinking it is stable.
After reading this blog, I am doubting my level of comfort. I travel a lot for work and go to very remote locations, and so am concerned about what would happen if I were far from any medical facility should it rupture. I will go to Hopkins to get a second opinion. I appreciate your advice very much.
After reading this blog I decided to make an appointment with a specialist at Hopkins. There was a cancellation and so I got an appointment surprisingly quickly. I want to thank you very much for making me aware that the location at the communicating artery (where my aneurysm is located) is a sensitive location. THANK YOU!!! I would not have made the appointment had I not seen this chat.
I have been seeing a neursurgeon here in the suburbs of Washington DC for four years for a 3mm in the communicating artery. Thankfully, it seems to have been stable. When I told the Hopkins doctor that I never had an angiogram, she was extremely surprised. She said there is a lot of misunderstanding out in the world about the relationship between the size of the aneurysm and its rupture risk. She told me that although my aneurysm is small at 3mm, it is in the communicating artery section, where relative to the artery, the aneurysm could be big. She said that at 1% risk/year of a rupture, which given my age of 53, is not insignificant.
I've now got an appointment for an angiogram next week. Like most of you, I am feeling quite anxious. I also am confused, since I thought I was doing the right thing by getting an MRA every 6 months to monitor the aneurysm, to find out now that I was not being followed as closely as I should have.
I do feel like I am in good hands at Hopkins, since they specialize in this field. I hope everything turns out okay.
THANK YOU again. I am grateful for the information you gave me which made me seek a second opinion from a real specialist.
