Living with a brain aneurysm do nothing or take care of the aneurysm?

General
1

Hi

I am living with an aneurysm 2mm for 4 years now. I am monitored on a monthly basis by neurology and once a year or as needed I do a MRA scan and or MRI, then I see my neurosurgeon and we discuss treatment options if needed. I quit karate and roller coasters.

This year I was told that it wasn't the size that was important but the weakness of the vein. I really don't worry about the aneurysm too much. This year my surgeon stated that now we need to discuss options which are 1. Keep monitoring 2. Clip the aneurysm 3. Coil the aneurysm. I am allergic to the contrast needed for the coiling.

I did consult a second opinion neurosurgeon and was told keep monitoring, I would have taken his recommendation but he did not look at any of my brain scans or medical history so of course I was not impressed and for sure not going back to this Dr.

Thank you I look forward to hearing from you

2

Please seek a third opinion. Did the first doctor specifically tell you that you have a weakness in the vein? My doctor did not mention this issue to me. My aneurysm is 8mm on the ACOM and I would be thrilled to monitor it for the rest of my life, but it is too big for this option.

3

Nancy, I’m sorry to hear this. But don’t drop the coiling option due to allergic reactions to dye. I have only been coiled, twice. Once for the rupture, once for one growing behind the rupture. I’ve had several angiograms. I, too, am allergic to the dye. This is what my Neurosurgeon does - loads me up with Prednisone the night before, has shots ready and due to one unforeseen issue, I take a bottle of Benedryl into the procedure with me. If there’s been an emergency, and my doc is running behind, I take a Benedryl. All of this before she goes in my femoral artery. There was one student who insisted I couldn’t be having allergic reactions, after the procedure, luckily the RN called my Doc and Bless her ever loving heart, she loaded me up some more :). It is not a good feeling to have your throat swelling shut, but there are many ways to combat it. Now my doc doesn’t do anything unless the shot is there for her to administer should she need it! Gotta love a professional who not only knows their business, but the patient as well

4

I had a surgeon that everyone raved about where I live- I mean the guy can do no wrong-say the same to me without looking at scans, and as I “educated” him to the other arterial problems I have said “oh yeah, well I’d better take a look”. Wanted to schedule an angiogram immed which I have been completely banned from by Mayo and several other revered authorities.
So I was really sick when I left that appt. And still cringe when I hear people rave about him.
Then I went on an investigative mission and found my Dr. He is very conservative but doesn’t mess around. Reads his own scans. Questions radiologists.
Coiling was not an option because of the wide mouth of the aneurysm opening. The clips have successfully abliterated what was.
I’m still grateful when in his hands.
I believe you keep looking until you feel this way about your Dr.

5

Dear Nancy,

Your story is virtually exactly like mine. I had a 3mm aneurysm that I was monitoring for four years by a local neurosurgeon (not a specialist in vascular neurology) in Maryland, and essentially lived my life with a few small modifications. Earlier this year, I read a discussion this website and became aware that the location of the aneurysm is very important to determine risk, even beyond the size. I read many many studies on the factors that contribute to rupture. I saw four vascular neurosurgeons. I was told by one neurosurgeon that I was a "very well informed consumer".

The short of all this was that the location of my aneurysm was on the anterior communicating artery, considered a high risk location even for small aneurysms. I read the statistics from global studies and became afraid. While the short-term risk was very low, my life-time risk as a young 54 year old was more significant. I decided get it clipped in mid-August. All four neurosurgeons said that it was too small for coiling. I am almost four months post-surgery and doing really well. Life is almost back to normal. And I feel blessed to have come through this experience so well and now I no longer worry.

My advice is to go to a neurosurgeon who specializes in aneurysms in a highly reputable hospital center with a strong neurological surgical unit. There are several around the country -- check out US World Reports Hospital Rankings. If you are interested, I can share the studies that I compiled.

I wish you good luck!

Michele

6



Michele said:

Dear Nancy,

Your story is virtually exactly like mine. I had a 3mm aneurysm that I was monitoring for four years by a local neurosurgeon (not a specialist in vascular neurology) in Maryland, and essentially lived my life with a few small modifications. Earlier this year, I read a discussion this website and became aware that the location of the aneurysm is very important to determine risk, even beyond the size. I read many many studies on the factors that contribute to rupture. I saw four vascular neurosurgeons. I was told by one neurosurgeon that I was a "very well informed consumer".

The short of all this was that the location of my aneurysm was on the anterior communicating artery, considered a high risk location even for small aneurysms. I read the statistics from global studies and became afraid. While the short-term risk was very low, my life-time risk as a young 54 year old was more significant. I decided get it clipped in mid-August. All four neurosurgeons said that it was too small for coiling. I am almost four months post-surgery and doing really well. Life is almost back to normal. And I feel blessed to have come through this experience so well and now I no longer worry.

My advice is to go to a neurosurgeon who specializes in aneurysms in a highly reputable hospital center with a strong neurological surgical unit. There are several around the country -- check out US World Reports Hospital Rankings. If you are interested, I can share the studies that I compiled.

I wish you good luck!

Michele

Thank you so much Michele for your response!! I would love it if you could share the studies that you have compiled. I did not know that depending on the location of the aneurysm that it could cause a greater risk. My neurosurgeon is located 1 minute from a hospital and she told me that if I had a rupture in her office she could not get me to the hospital to operate fast enough to save me. Mine is located behind my eyes on the circle of willis. How long were you in the hospital? What was your recovery time frame? Once you recover do you still have to be monitored? Did you have to do physical therapy? It sounds as though you are doing well are you having any issues from the surgery? Did you seek 2nd and third opinions?

I am so sorry that I am asking so many questions but extremely grateful that you responded.

Thank you again

Nancy

7

Hi Campanile

Yes my neurosurgeon stated that after so much research and studies that the final outcome was size is still important. But She further stated its the weakening of the vein that causes the rupture. She said with the latest research and studies that all aneurysms should be considered high risk for rupture. I volunteered 4 years to do the surgery and at that time she told me it was small and we would just monitor. The example she gave me in lay mans term is that the vein is like a balloon as blood pressure rises and falls it weakens the vein. That made sense to me but it always has. I have a consultation appt Dec 9th with my family and have had since July (my last appointment with her) to write down questions. My Dr. is know to the be the best in the city and I have trusted her since I began seeing her 4 years ago.

Are you having surgery soon I will pray for you.

thank you again for your reponse

Nancy

Campanile said:

Please seek a third opinion. Did the first doctor specifically tell you that you have a weakness in the vein? My doctor did not mention this issue to me. My aneurysm is 8mm on the ACOM and I would be thrilled to monitor it for the rest of my life, but it is too big for this option.
8

Thank you Laura for responding. So you had the angiogram? What was the recovery time? Was it out patient? I wasn't scared before but since I was told my options I can't stop thinking about it. With the allergic reaction from Contrast I feel as though my only option is clipping. What size was your aneurysm? Are you having any issues from the coiling? How long was your recovery? Did the actual surgeon do the coiling or did a neuro radiologist do the coiling? Are you still being monitored? Sorry for so many questions.

Thanks again for your response

Nancy

Laura Hollenbeck said:

I had a surgeon that everyone raved about where I live- I mean the guy can do no wrong-say the same to me without looking at scans, and as I "educated" him to the other arterial problems I have said "oh yeah, well I'd better take a look". Wanted to schedule an angiogram immed which I have been completely banned from by Mayo and several other revered authorities.
So I was really sick when I left that appt. And still cringe when I hear people rave about him.
Then I went on an investigative mission and found my Dr. He is very conservative but doesn't mess around. Reads his own scans. Questions radiologists.
Coiling was not an option because of the wide mouth of the aneurysm opening. The clips have successfully abliterated what was.
I'm still grateful when in his hands.
I believe you keep looking until you feel this way about your Dr.
9

Hi thank you so much for your reply. Did you have any side effects from the contrast after the procedure? How long does the contrast stay in your brain? Do you have to take benedryl for a couple days afterward? How long were you in the hospital? Are you fully recovered? You had two aneurysms? How large was your aneurysm? Did you do the procedure at the Mayo clinic? Did you have to do physical therapy? I have been seeing the same surgeon for 4 years and I trust her but if I do anything about the aneurysm I wanted to get a second opinion. It's amazing on who you talk to I get different answers on what I should do. I am 57 years old and worry now that if I do nothing and I need to do the procedure a couple of years later I will be older and may not recover so quickly.

thank you again for your response

Nancy

Moltroub said:

Nancy, I'm sorry to hear this. But don't drop the coiling option due to allergic reactions to dye. I have only been coiled, twice. Once for the rupture, once for one growing behind the rupture. I've had several angiograms. I, too, am allergic to the dye. This is what my Neurosurgeon does - loads me up with Prednisone the night before, has shots ready and due to one unforeseen issue, I take a bottle of Benedryl into the procedure with me. If there's been an emergency, and my doc is running behind, I take a Benedryl. All of this before she goes in my femoral artery. There was one student who insisted I couldn't be having allergic reactions, after the procedure, luckily the RN called my Doc and Bless her ever loving heart, she loaded me up some more :). It is not a good feeling to have your throat swelling shut, but there are many ways to combat it. Now my doc doesn't do anything unless the shot is there for her to administer should she need it! Gotta love a professional who not only knows their business, but the patient as well
10

Nancy,



Mine is also in the Circle of Willis, between my eyes in the ACOM! I will pray for you, too. I understand why you do not want to delay due to your age-I am 65 and truthfully, I am afraid that being older may make it harder for me to recover.

11

Hi Nancy,

I am happy to respond to your questions, as so many people gave me wonderful advice in my time of need. I saw a total of four doctors and did extensive research to explore all my options and feel confident in whatever decision I make.

In terms of my clipping, I feel blessed that my experience was very positive. I had my clipping at Columbia in NY in mid-August I went into the OR at about 7:30 and was out by 12:30. By about 1:00 I was conscious, albeit druggy. The docs and nurses woke me up every hour or so for the day to make sure I was okay. By the following day, I was out of bed, walking around the hallway, and eating. I was discharged two and a half days after the surgery. About a day or so later, I started to walk outside. A few days later, I went grocery shopping with my dad. I needed pain relief for about two days while in the hospital, then went to Tylenol for about another four days or so.

Of course, I took things very easy, especially for the first two weeks. I took a total of eight weeks off from work, because I could. Once I went back to work, life resumed a very hectic pace. Indeed, three months after my surgery, I went on a very hectic business trip visiting three countries in 12 days, sleeping about five to six hours a day. I was amazed and extremely thankful that my energy was back to pre-surgical levels.

I am now about three and a half months post-surgery and I must say my life is wonderful in that I don't have to worry about the aneurysm anymore. Before the surgery, I became a nervous wreck -- it's my natural tendency to be a worrier. I realized that the short-term risk of rupture was small, but my lifetime risk was as high as 30%. The doctors assured me that my good health and "youth" at age 54 would mean that the risk of stroke or some other serious problem from the surgery was small, anywhere from about 1 to 5 percent.

I realize we are all very different in our situations. For me, I look back and feel this was one of the hardest things that I have been through in my life. It required a great deal of courage, strengthen, and optimism. Right now, I am so thankful that my life is back to normal. I need to be checked for new aneurysms one year after the operation, and then every three to four years. I have been told that my risk of new aneurysms is about 1%.

I am sorry if I rambled too much. I'd be happy to send you a link to a Dropbox account where I have a bunch of articles and studies that I have compiled. Please write to me in the inbox here with your email and I'll send you the Dropbox link.

Good luck and Happy Thanksgiving Nancy!

Michele



Nancy Ann Kerin said:



Michele said:

Dear Nancy,

Your story is virtually exactly like mine. I had a 3mm aneurysm that I was monitoring for four years by a local neurosurgeon (not a specialist in vascular neurology) in Maryland, and essentially lived my life with a few small modifications. Earlier this year, I read a discussion this website and became aware that the location of the aneurysm is very important to determine risk, even beyond the size. I read many many studies on the factors that contribute to rupture. I saw four vascular neurosurgeons. I was told by one neurosurgeon that I was a "very well informed consumer".

The short of all this was that the location of my aneurysm was on the anterior communicating artery, considered a high risk location even for small aneurysms. I read the statistics from global studies and became afraid. While the short-term risk was very low, my life-time risk as a young 54 year old was more significant. I decided get it clipped in mid-August. All four neurosurgeons said that it was too small for coiling. I am almost four months post-surgery and doing really well. Life is almost back to normal. And I feel blessed to have come through this experience so well and now I no longer worry.

My advice is to go to a neurosurgeon who specializes in aneurysms in a highly reputable hospital center with a strong neurological surgical unit. There are several around the country -- check out US World Reports Hospital Rankings. If you are interested, I can share the studies that I compiled.

I wish you good luck!

Michele

Thank you so much Michele for your response!! I would love it if you could share the studies that you have compiled. I did not know that depending on the location of the aneurysm that it could cause a greater risk. My neurosurgeon is located 1 minute from a hospital and she told me that if I had a rupture in her office she could not get me to the hospital to operate fast enough to save me. Mine is located behind my eyes on the circle of willis. How long were you in the hospital? What was your recovery time frame? Once you recover do you still have to be monitored? Did you have to do physical therapy? It sounds as though you are doing well are you having any issues from the surgery? Did you seek 2nd and third opinions?

I am so sorry that I am asking so many questions but extremely grateful that you responded.

Thank you again

Nancy

12

Nancy, I understand all your questions.

With the angiograms I have had I have no problems with contrast after I am released. With angiograms, I am required to stay in the hospital until my body does the basics, eat and urinate. I am in and out in about 12-14 hours. The way I understand it, it’s the anesthesia that stays with you for so long. As for the contrast, I drink a lot of fluids and am kept on IVs to help flush it out before I leave that day

No I don’t take benedryl after leaving the hospital. Just an hour before procedure but remember I am loaded with prednisone prior to I think it starts about 8 hours before and it’s a lot every four hours. I take allergy medicine daily anyhow

Angiograms for my doc to look is in and out same day. My second aneurysm was found six months after my rupture. It was behind the ruptured aneurysm. That was about 24 - 30 hours hospital stay counting the procedure. I left before lunch the next day. My rupture was a 28 day stay though she tried to get me home earlier upon my insistence I was afraid my dog would die. I wouldn’t stop having vasospasms and had to stay

I live in NC and was life flighted to Wake Forest Baptist Health in Winston Salem. My rupture wasn’t so big, 12.5 mm but it was a level 3 bleed making the ER think it was large. I was 53, no history of high blood pressure, still don’t have high blood pressure.

Because of the circumstances, I met my surgeon a few days after the fact though I am told I talked a lot to her during the coiling procedure for rupture. Personally, I wouldn’t have any other surgeon nor any other facility. Besides the obvious coiling, I owe my life to not only Dr Quintero-Wolfeand her ability to think outside the box, but to many nurses in Neuro ICU and other doctors that kept Dr Q-W apprised 24/7, even a med student was instrumental.

My brain took a beating, more than some, not as much as others. At the 18 month from rupture date my brain has healed all that it is going to. The neck would t close and I kept challenging the odds by doing more than I should. I did not have physical therapy but hindsight says I should have asked. Hindsight also tells me I was too weak for PT. I have received speech therapy locally and will be going back to Wake Forest in January for some more. I developed an accent which is frustrating and depressing at times I also have expressive aphasia meaning I lose my words when speaking. I have a tremor in my right hand and I list to the right when I walk. I have compensated for a lot of these things I keep working my brain daily, I exercise daily and I try to keep protein intake high as well as drinking enough to keep hydrated. I have problems with sounds, lights, to much stimuli but I continue to learn ways to compensate

I think there are so many different answers because there are so many different brains and personalities. There is one Neuro student that I hope to never have has a doctor but another who I would go to Washington State for if my do. Wasn’t available. I also think it has a lot to do with the confidence of the Doctor, their willingness to learn new techniques etc. I hope I have answered everything

13

I would hightail it to Dr.Howard Riina isn’t NYU who will give your situation proper attention and make a recommendation you can trust. This man saves lives! Columbia Presbyterian also has great neurosurgeons, as someone else mentioned, but they were afraid to operate on me vs. Dr. Riina at NYU who said he could get it done, and he did!

14

At Columbia Presbyterian you should see Dr. Connolly. He is known as the one who operates on complicated cases. I thought he and his team were very professional, patient, and highly skilled. He was very approachable with very good bedside manner.