My advice is seeking a good NeuroSurgeon. On the West Coast, UCSF led Dr. Michael Lawton has a clinic dedicated in treating AVMs and Aneurysm. At an aneurysm support group at UCSF, they explained the benefits of both procedures. For non invasive procedures (coiling, Pipeline, Stent assisted), it is non-invasive technique with quicker recovery times. However, there is a chance of rebleed and you need to angiogram as follow up procedure to make sure that it is intact. For clipping, it requires craniotomy with longer recovery times but you will not worry about re-bleed. During an Aneurysm Awareness Walk in the Bay Area, I met people from out of state who specifically wanted to be treated by Dr. Lawton's team. But, if going out of State is not an option, I am sure that you will find a good Neuro-Surgeon. It is a silver lining that it was caught.
For neuroangio.org site, it is mainly reference for medical community. I would not call them. My late Father was a physician and discouraged self diagnosis and research by patients. I used these sources only after I received my diagnosis. I had to work with 8 physicians after my post surgery to deal with disabilities after a SAH. For this reason, I had to educate myself. After you get your diagnosis and proposed surgery, the reference sources will start to make sense.
For practical matters, just make sure family and friends know about your condition in case of emergency.
Mary...a few of those 'sites' also frustrated me...maybe I do not have a fully-recovered memory to find one a second time...time will tell??? I would like to share much more...and, I am mentally exhausted today...for simple things like my co-op for food... I can't do two things w/o one of these simple things...turning my thought process upside-down. Worse, I have Comcast for my TV (and email ...as here as I am w/you) but ,y TV has frustrated me for news...tho some long-term friends will call me IF any (right word?) traumatic news..
Please bear with me...I am ready to fall to sleep...and, I will share more tomorrow..
Mary said:
Thank you so much for all the information. Some would not open for me. I will try on another computer. I get very overwhelmed trying to research this and more confused. Do you feel going through the artery is worse than open brain?
patioplans said:
Mary...
You may want to browse data online to open questions to your neuro-docs..
The name/segment of the artery involved...
Several of the easiest (in my non-expert opinion) websites are on the brain and/or the arteries...
which may be helpful to you and your family. I had posted some under 'resources' over time; and, more recently found a few noted here.
This one is more likely to be found by searching: longitudinal fissure and anatomy to the 'images" go to Specific Sulci/Fissures (the lists of images of various subjects on google) and the (at least current) third line of images, it is the last one on that line...when using the 'visit' section, it brings up the 38 'slide' pages...of the 'college of dentistry'... I have found this so interesting bc I took images of my 'procedure' in to my dentist... totally unknowing of 'all' the brain dental students are taught ...and, this is just the intro...of course, I realized the need to know about various portions...and, had not realized so much...
There are numerous other sites on the 'anatomy-physiology' of our brain and cerebral arteries. Some are just easier to read/comprehend...well, and, I am only noting my own 'comprehension - ability'...
These sites above are national and international...
Hope you keep us updated...and, so highly recommend you call your neuro-doc's office and ask for the name of the artery a/w/a which segment of that artery...and, again. hope you/family can view the sites (many more than these)...
Mary said:
coils/stent pseudo-surgery in the groin for the arterial access in the brain...
Thanks so much. Very helpful. Neurosurgeons in Connecticut that actually deal with brain aneurysms are far and few. Yale where I would be going is second in the area to one in Boston. The surgeon has a 2 to 3% of injuring me. First encounter with him was horrible. Second much better. Just too many fears in my head either way. I do appreciate your help. br/>
2Fight said:
Hi Mary,
My advice is seeking a good NeuroSurgeon. On the West Coast, UCSF led Dr. Michael Lawton has a clinic dedicated in treating AVMs and Aneurysm. At an aneurysm support group at UCSF, they explained the benefits of both procedures. For non invasive procedures (coiling, Pipeline, Stent assisted), it is non-invasive technique with quicker recovery times. However, there is a chance of rebleed and you need to angiogram as follow up procedure to make sure that it is intact. For clipping, it requires craniotomy with longer recovery times but you will not worry about re-bleed. During an Aneurysm Awareness Walk in the Bay Area, I met people from out of state who specifically wanted to be treated by Dr. Lawtonās team. But, if going out of State is not an option, I am sure that you will find a good Neuro-Surgeon. It is a silver lining that it was caught.
For neuroangio.org site, it is mainly reference for medical community. I would not call them. My late Father was a physician and discouraged self diagnosis and research by patients. I used these sources only after I received my diagnosis. I had to work with 8 physicians after my post surgery to deal with disabilities after a SAH. For this reason, I had to educate myself. After you get your diagnosis and proposed surgery, the reference sources will start to make sense.
For practical matters, just make sure family and friends know about your condition in case of emergency.
Mary if you can come to Boston I can recommend two top neurosurgeons here. Christopher Oglivy at Beth Israel and Aman Patel at MGH. Both doctors are highly rated, not only by their patients, but by other doctors.
Thanks so much Campanile. Been thinking and praying for you and your friend. I will check into this as best I can. Donāt know that there is a different option for me.
Campanile said:
Mary if you can come to Boston I can recommend two top neurosurgeons here. Christopher Oglivy at Beth Israel and Aman Patel at MGH. Both doctors are highly rated, not only by their patients, but by other doctors.
Mary, one of the things Iāve learned here is that itās great if you have an opportunity to look at both the hospitals and doctors who are doing the procedures It appears that the more cases they treat, the better they become. I ruptured, so no choice, but I wouldnāt trade my Dr or the Neuro RNs for anything. I would recommend you write down a list of all your questions and ask your Dr.
You asked one of the members which procedure was better. From what Iāve learned, both have positives and negatives. Coiling, which I have, is less invasive and the coils can compact. Craniotomy leaves more room for infection but no compaction. Again ask your doctor, it may boil down to location as with some aneurysms or what the Drās experience tells him
I can concur with Moltroub. There are pros/cons for each procedure. But, medical technology continues to advance so success rate is much better now than 20 years ago. I had no choice as I had a rupture from 8 x 10 PICA aneurysm and ambulance delivered me to my local hosptial. But, I was lucky. My Neuro-Surgeon was excellent. He projected so much confidence as I knew my life was in good hands. He is trained in both techniques and coiled my aneurysm. My 1 year Angiogram came clean. Even though I have experienced disability, I survived and continuing to make strides in my recovery.
It sounds like Campanile referred excellent Neuro-Surgeons in the Boston Area. If you are in CT, you are not far from NYC area too. The most important thing is having confidence in your Surgeon. If you do not feel confidence, there are other excellent Neuro-Surgeons. Keep faith. You will get through this challenge.
BTW, I misread your original post. I thought that you had 2 aneurysm.
Iām thankful you are all here right now to help me with this. I will do some more research. It overwhelms me. I have difficulty just navigating this site. Hope some day I can walk someone through this.
2Fight said:
Mary,
I can concur with Moltroub. There are pros/cons for each procedure. But, medical technology continues to advance so success rate is much better now than 20 years ago. I had no choice as I had a rupture from 8 x 10 PICA aneurysm and ambulance delivered me to my local hosptial. But, I was lucky. My Neuro-Surgeon was excellent. He projected so much confidence as I knew my life was in good hands. He is trained in both techniques and coiled my aneurysm. My 1 year Angiogram came clean. Even though I have experienced disability, I survived and continuing to make strides in my recovery.
It sounds like Campanile referred excellent Neuro-Surgeons in the Boston Area. If you are in CT, you are not far from NYC area too. The most important thing is having confidence in your Surgeon. If you do not feel confidence, there are other excellent Neuro-Surgeons. Keep faith. You will get through this challenge.
BTW, I misread your original post. I thought that you had 2 aneurysm.
Iām thankful you are all here right now to help me with this. I will do some more research. It overwhelms me. I have difficulty just navigating this site. Hope some day I can walk someone through this.
Moltroub said:
Mary, one of the things Iāve learned here is that itās great if you have an opportunity to look at both the hospitals and doctors who are doing the procedures It appears that the more cases they treat, the better they become. I ruptured, so no choice, but I wouldnāt trade my Dr or the Neuro RNs for anything. I would recommend you write down a list of all your questions and ask your Dr.
You asked one of the members which procedure was better. From what Iāve learned, both have positives and negatives. Coiling, which I have, is less invasive and the coils can compact. Craniotomy leaves more room for infection but no compaction. Again ask your doctor, it may boil down to location as with some aneurysms or what the Drās experience tells him
Iām thankful you are all here right now to help me with this. I will do some more research. It overwhelms me. I have difficulty just navigating this site. Hope some day I can walk someone through this.
Campanile said:
Both recommended the same thing for me, which helped me decide to go forward with the coils and stent.
The Mod Support team is hard at work all over the world to get the new site up and running. Hang in there! Until that time, ask the members for suggestions on links or specific questions. My experience here is most everyone will jump in who have an interest in your discussion. You can also use your mod team if youāre having difficulty navigating the site. Sometimes we as members, may forget to put tags in our discussion, Iāve done it a few times myself lol.
I like sites such as WebMD, the NIH, and the BAF. Take a look at some of the YouTube videos from folks at the different universities. There are also different groups that have good, reliable information. All the new medical terms can be overwhelming for us lay people at first. And remember to keep a list of questions for your doctor. I had learned a few months back that I can send emails to my doc and PA, one of them always answers. You just have to give them time. They may also have a list of reputable sites or a booklet they can provide you.
Take time for yourself away from all this - take walks, eat healthy, do your hobbies and donāt forget to breathe!
Canāt thank you enough and I am horrible finding my around this site. Like everything else I will get there. When I asked my doctor for a handout or website he offered this site to me. He was right.
My SAH was in the Circle of Willis, and was quite large. I was not on blood thinners at all because that was the last thing they wanted.
I agree with your family, they can clip it and/or coil it at this point but if it ruptures you enter into an entirely different situation, because it is no longer preventative it is life saving, dangerous and comes with more complications.
You should sit down with your Dr. and have a heart to heart so he/she understands your concerns and you get to express your unsettled feelings.
I can sympathise with you mary - this site however helped me make my decision.There are so many people on this site with experience of both ruptured and unruptured aneurysms but I think the general consensus is the same - unless itās very small , have it dealt with and be proactive - having read the devastating effects of a rupture I feel surgery is the only option. Whilst there is a risk with any surgery, the risk.of dying whilst having an unruptured aneurysm repaired is low and has a more predictable outcome( or so my surgeon tells me)
Did you have surgery? And thank you for posting. I appreciate it. I am sure I will have the surgery. I am not mentally ready but am getting there. I am getting more and more concerned every day.
boozysuzi100 said:
I can sympathise with you mary - this site however helped me make my decision.There are so many people on this site with experience of both ruptured and unruptured aneurysms but I think the general consensus is the same - unless itās very small , have it dealt with and be proactive - having read the devastating effects of a rupture I feel surgery is the only option. Whilst there is a risk with any surgery, the risk.of dying whilst having an unruptured aneurysm repaired is low and has a more predictable outcome( or so my surgeon tells me)
All our cases are different but I am doing so amazing well a little over one year post-clipping! I had a 3mm ACOM clipped at Columbia University in NYC. I was really nervous trying to figure out what to do. I saw five doctors and read at least 50 studies...it became an obsession for about three months! I could not think of much more.
Once I made the decision to have the clipping, somehow the feelings of sheer panic slowly dissipated. I felt that I had gathered the information I needed to make an informed decision. I felt that I had one of the best doctors in the US to undertake the operation in one of the best hospitals for this in the US. I felt that I was in good hands, which made all the difference. I felt that I was taking a short-term risk in a very controlled environment in order to buy me the promise of a long and healthy life. It was a calculated risk, but I was assured that the risk of complications was very small for me.
The operation lasted about five hours. I remember nothing. I was in the hospital for two days, and then recuperated for about 7 weeks before going back to work. Three months after the operation, I went on a two-week business trip overseas. Since then, I've recuperated 100%. I have no headaches -- no limitations. Last month, on the year anniversary of my operation, I hiked on a mountain at 17,200 feet in Peru! I'm 55 years old and in regular shape.
I feel that the operation gave me my life back. I feel liberated not having to worry about the possibility of having the aneurysm rupture. I travel overseas to remote places for work, and so my experience one-year out has been really positive. Obviously I don't know what the future will bring, but today, I look back and do think the treatment was worth it.
Again, this is just my experience. I write it to you to let you know that I was in your shoes just a little over one year ago. I don't think I would have believed I would be doing so well. I am so thankful.
Have hope. You really can overcome this and get back to your regular life!
Thank you so much Michele this is so encouraging. It is very overwhelming and I stink at researching but have received a lot of help from everyone here. So happy for you and your out come and do hope I get to share this joy some day.
Thanks,
Mary
Michele said:
Hi Mary,
All our cases are different but I am doing so amazing well a little over one year post-clipping! I had a 3mm ACOM clipped at Columbia University in NYC. I was really nervous trying to figure out what to do. I saw five doctors and read at least 50 studiesā¦it became an obsession for about three months! I could not think of much more.
Once I made the decision to have the clipping, somehow the feelings of sheer panic slowly dissipated. I felt that I had gathered the information I needed to make an informed decision. I felt that I had one of the best doctors in the US to undertake the operation in one of the best hospitals for this in the US. I felt that I was in good hands, which made all the difference. I felt that I was taking a short-term risk in a very controlled environment in order to buy me the promise of a long and healthy life. It was a calculated risk, but I was assured that the risk of complications was very small for me.
The operation lasted about five hours. I remember nothing. I was in the hospital for two days, and then recuperated for about 7 weeks before going back to work. Three months after the operation, I went on a two-week business trip overseas. Since then, Iāve recuperated 100%. I have no headaches ā no limitations. Last month, on the year anniversary of my operation, I hiked on a mountain at 17,200 feet in Peru! Iām 55 years old and in regular shape.
I feel that the operation gave me my life back. I feel liberated not having to worry about the possibility of having the aneurysm rupture. I travel overseas to remote places for work, and so my experience one-year out has been really positive. Obviously I donāt know what the future will bring, but today, I look back and do think the treatment was worth it.
Again, this is just my experience. I write it to you to let you know that I was in your shoes just a little over one year ago. I donāt think I would have believed I would be doing so well. I am so thankful.
Have hope. You really can overcome this and get back to your regular life!