My two aneurysms were found incidentally when I complained of frequent headaches. After a MRA, CTA and 2 angiograms it's been found that I have a left side PCOM infundibulum 5.3 mm and a right side 5.7 mm PCOM aneurysm. I've since learned that I also have family history. My doctors are still debating the right treatment (my case is not straight forward) but clipping right side is likely.
I'm in my mid 30's with two children - 6 & 9.
I just had my aneurysm coiled 10 days ago. A couple of things greatly helped me while waiting for surgery… Faith in the Lord… He will carry u thru… The awesome people on this site… They will share their experiences to keep u informed… And a two awesome doctors I could fully trust. My neuro radiologist even gave me his personal cell to follow up and my neuro surgen told me his best prescription was prayer… Remember, he has blessed u by giving u a chance to be treated.
Hi and Again ...Welcome...Thank you for sharing your story...keep us posted on what the Doctors decide...Gotcha in my Thoughts ~ colleen
Welcome-
This is a great place to get information and support.
Terri
Hi! I'm in my mid forties with a 6 & 9 y.o., as well as a 16 y.o. I have three aneurysms, one that ruptured leading to a subarachnoid hemorrhage. I've had two treated with the pipeline embolization device (PED), and one that they were watching actually got smaller afterward! I'm so sorry this is going on with you but I've no doubt you'll be fine! Glad they found them before rupture! What does PCOM stand for?
High...hi and welcome...I had a true PCOM...and, so regret I did not have open surgery...I have no known family history...
From yours, will your docs decide to do the genetic testing?
Prayer for your best neuro-docs, their provided information for your decision and the love, support of your family/friends in their guidance...from your decision to their support during recovery.
Pat
Hi There,
While in my 30's a left sided P-COM annie was discovered (clipped). and according to my radiology reports, a 'prominent Infundiibulum' was spied on the right side P-COM. at the same time..(Which burst 8 years later)--why they didn't refer to the Right sided P-COM as an aneurysm is beyond me, as that is what it surely became! -best of luck to you,. and be sure to keep a close watch on the 'infundibulum' as you get thru all this.
Peace, Janet
Janet and all...
"Infundibulum" is yet so confusing...1-3 years ago...several of us had discussed it...And, over much time I had learned it to be a spot, swelling, or stretching ...a visible a poof up?
My confusion resulted from my med records ...and the term infundibulum....translated as the pituitary stalk, aka, infundibular stalk aka infundibulum...The only time I knew it was used...and, why I was so confused when used in common terminology...
The most interesting now....is knowing of the limbic system...and, what it does...Even when darling UK John had learned about the potential impacts on our body temp and hypothalamus, I was not competent to "see" where it was located...And, hey...I may not be able "see"...tho expect we can anticipate correction in our "ask the doc" forum...they perhaps may advise I am closer to the moon than our world...
Hugs...
Thanks so much for sharing this with me Janet! Do you mind telling me how big your infundibulum was when it burst and did it grow? Were they keeping an eye on it? If so, how often were you having scans? I do hope you recovered completely.
As I said they are calling mine an infundibulum also because of its shape, but based on size, the radiology report said its technically an aneurysm. Again I'm really glad you shared, I will definitely keep this in mind going forward!
Thanks.
Thank you all so much for the encouragement and for sharing with me.
@sandy t: PCOM stands for Post Communicating Artery, it describes the location of my annies. The PCOM artery is on the "Circle of Willis" around the base of brain (brainstem). Thanks for the info about PED, I'm going to read up on it.
I feel mostly peaceful, I'm a fighter with faith. Will keep you all posted :)
I have an unruptured P-COM aneurysm which was found incidentally in July, 2014 by MRA. When they looked back at an old MRI, they saw that in 2006 something showed at the very same spot and was 4mm. They said that it wasn't all that clear. Today, we know that this is the aneurysm that has grown to 7mm. It is on the right side. I would be interested in hearing from anyone with a P-COM aneurysm and has decided on having it clipped. I would like to know what their experience was.
Carol72...I did not have open surgery...and, so regret having had... My only suggestions...since I do not know your overall background...
My PCOM aneurysm (per records of several docs)..my aneurysm was called PCOM...and, yet it was on the internal carotid artery (ICA) at the PCOM origin... Thus...the procedural treatment hit the ICA ...AND, the ICA generally has the tortuous turns...ouch...I have an extensive stent implanted (off-record) in the lower segments of my ICA...and a smaller stent in the upper (anterior???)...segments of my ICA ...on into the middle cerebral artery (MCA)... also off record... Imaging will display the little (right word?)...marker bans (or beads)... I so regret that I did not have ability to make a decision...as I had three "leaks/ruptures" in 29 days...before a basic CT w/o contrast identified a subarachnoid hemorrhage (SAH)... in the 3rd quality emergency...I saw apx 9 docs plus their team members...in those 29 days...
None of this is at all unique to me... and, I have encouraged others to really ask their docs a lot of questions to help make a reasonably proper decision...
Prayers you will get good responses from those blessed with the long-term open surgery...because that also generally prevents surgical updates due to the unfilled coil procedure, for the claimed (mind-blanking?) compaction of coil...and more angios and coils are needed to be implanted...and, on and on...
Carol...I know/recognize you were/are asking for feedback of those who have had open surgery...which excludes me...except...it is the comparison...a/w/a the newer implant of PED...(the stent version).. when you think thru and compare alternative procedures... for your decision...
Prayers for grand feedback and for your right decision for you...
Pat
I’ve procrastinated sharing the rest of my story because (I guess) to write it down makes it starkly really real. I alluded earlier that my case was not straight forward, but I didn’t share details. There is great value in our stories and the collective knowledge that we gain from one another. So! This private girl has relented and will spill.
Carol- I did have scheduled surgery last June after great deliberation and planning amongst my doctors and his colleagues. My right side PCOM Annie showed a strange malformation that has not been seen before: small “perforating arteries” were coming off the fundus (top) of it. Some of the doctors said it wasn’t possible, and some argued opposingly. There was a consensus that clipping would be ideal, but with many precautions because blood flow off the aneurysm might possibly feed vital functions and stopping it could cause a stroke.
Have I lost you yet? My surgery ended up being exploratory only, upon visual exam they decided that my Annie did have small arteries stemming off of it and decided it was too risky to clip. I recovered from brain surgery while adjusting to my new reality: I have two “infundibulums” that will be carefully watched. I went through the surgery just to gain this awareness. Although it couldn’t be fixed, I’m glad we tried.
I could journal for days about how living with unruptured Annies changes perspective on life. I won’t though, many survivors already have, but I will say I enjoy life and family more.
Carol, you are probably wondering about the incision/scar, how much hair I lost, and what my recovery was like. I searched for this info while waiting for big day myself. My incision is less than an inch behind my hairline and goes from the top of my head to in front of my right ear. I wore scarves loosely for the first couple of weeks and then was able to wear soft stretchy wide headbands for several months until the hair started growing back and I felt confident enough to wear it down. With a left side part my hair hides the incision completely. I still use mederma and the scar is still fading. The surgery was not super painful, and I recovered quickly and well. I was up and walking within 24 hours with a little help (woozy), and by day 3 on my own. By the time I left the hospital I was walking laps and begging to go home. The first week my main discomfort was the swelling on the right side of my face: eye, jaw, and mouth. I used ice packs regularly during that week. I did not experience extreme exhaustion that others have talked about, but I did tire more easily the first several weeks. I made walking each day part of my recovery plan, with a promise to myself to go farther than I did the day before.
Eight months later, here we are. The strip of hair I lost has grown three inches and I’ve got a cute collection of headbands that aren’t being used. I’m back to the active lifestyle I enjoy: playing with my gorgeous children, swimming, biking, and running. My RoadId (medical alert bracelet) says I have brain aneurysms and that each day is a new blessing. It’s been said that knowledge is power, and I’d agree. This journey continues to provide me the opportunity to mentally strength-train through the weight of my emotions. It’s good I stopped procrastinating in sharing, even writing this helps me heal.
Thanks Pat. I'm glad you got those stents. It talked with a few surgeons and interventionalists. The first group said it was a 6mm aneurysm with a small neck. They said I could either watch it and wait or get it coiled. They did not want to clip it. The second surgeon said that he was what concerned him was that it was now 7mm and was leaning toward the membrane, as they do before they rupture. He went on to say that he would clip it, and it would be gone. Then he said that he could get at it easily. I could also get it coiled if that's what I wanted to do. I am supposed to get it clipped next Tuesday morning. I was confident until I've had to wait so long to get it done.
Carol 72
pat.om@frontier.com said:
Carol72...I did not have open surgery...and, so regret having had... My only suggestions...since I do not know your overall background...
My PCOM aneurysm (per records of several docs)..my aneurysm was called PCOM...and, yet it was on the internal carotid artery (ICA) at the PCOM origin... Thus...the procedural treatment hit the ICA ...AND, the ICA generally has the tortuous turns...ouch...I have an extensive stent implanted (off-record) in the lower segments of my ICA...and a smaller stent in the upper (anterior???)...segments of my ICA ...on into the middle cerebral artery (MCA)... also off record... Imaging will display the little (right word?)...marker bans (or beads)... I so regret that I did not have ability to make a decision...as I had three "leaks/ruptures" in 29 days...before a basic CT w/o contrast identified a subarachnoid hemorrhage (SAH)... in the 3rd quality emergency...I saw apx 9 docs plus their team members...in those 29 days...
None of this is at all unique to me... and, I have encouraged others to really ask their docs a lot of questions to help make a reasonably proper decision...
Prayers you will get good responses from those blessed with the long-term open surgery...because that also generally prevents surgical updates due to the unfilled coil procedure, for the claimed (mind-blanking?) compaction of coil...and more angios and coils are needed to be implanted...and, on and on...
Carol...I know/recognize you were/are asking for feedback of those who have had open surgery...which excludes me...except...it is the comparison...a/w/a the newer implant of PED...(the stent version).. when you think thru and compare alternative procedures... for your decision...
Prayers for grand feedback and for your right decision for you...
Pat
Thank you for sharing your experience with me. You certainly gave me a lot of practical information.
I live in Northern New England which now resembles Norway, after getting tons of snow. I learned about my aneurysm in July 2014. I was told that it had showed up eight years prior on an MRI at 4mm, but not clearly enough to identify it (except now in hindsight). Once discovered, my surgery scheduled about three days after for moderate to severe spinal stenosis (in my neck) was postponed for six months by a local neurosurgeon. I was referred t a hospital in Boston, Massachusetts. I waited patiently several months to hear from them. Finally, I got through to them at the end of October. I wasn't favorably impressed. The neurosurgeon was a pediatric surgeon, who immediately said, "I don't want to do surgery". The doctor from radiology didn't make it and sent a very young interventionalist, 30 minutes late. He acted silly, and I was not impressed. I went back to the local neurosurgeon for another referral . That's when I found out that he had quit his job suddenly, leaving the rest of his help looking for new jobs by December. But, they had a list of referrals. I made another choice and was seen right away. I brought all my test results and images with me. my appointment was with a cerebral vascular neurosurgeon. He looked everything over and had an angiogram done. Then he said that he was concerned because the aneurysm now 7mm instead of 6mm was leaning toward the membrane, which is what they do before they rupture. He could operate on it, and it would be gone. Or, if I would rather, I could get it coiled, but it might come back.
Then he said that he could get at it easily. So, I decided to get it clipped. Then he said he would be on vacation, but would be back in a week. Well, I had my surgery scheduled. That was not to be, as he had an emergency surgery. Then one by one we all got an upper respiratory infection that we couldn't shake. With me it took three different antibiotics, two rounds of Prednisone and inhalers to get the constant coughing to stop. When I finally could go ahead with the surgery we got one blizzard after the next. The snow mounds are seven to eight feet high. I was positive about getting this taken care of, but the wait has taken its toll on me. I notice that for the most part, people who elect coiling will bounce back faster. Those electing open surgery tend to have a more complicated and lengthily recovery. On the other hand, the coiling may have to be done several times. The open surgery does seem to wipe out the aneurysm at once.
My surgery is scheduled for Tuesday, March second. As you can imagine it's been a roller coaster ride. I probably won't get the neck taken care of for another year. They don't like to schedule these surgeries too closely together. Now, after all of this waiting, I'm getting a little nervous. I've been very positive, fighting to get this taken care of, and now I'm getting nervous not just about the surgery but also about the recovery period. The nurse practitioner gave me information that was different from what the doctor told me. The differences were statistical and I was also given a longer length of time. for the surgery than what the surgeon said. Then I was told that I would have to be there by 5:30 am. My ride is saying he's going to stay up all night before bringing me there for surgery. Doesn't make me comfortable. Thank you so much for your replying.
I'm wondering if they can graft some kind of a bypass eventually for you, after they find out the significance of the small artries.
Carol 72
Carol...
OMG...03/02...I do not know the distance you have to drive...If any possible weather / traffic issues; can you get nearby hotel/motel the day before... possibly for you and your friend based on the distance...
You will want to be as rested and as well as you can possibly be...and he for his return home..
Your levels of snow can add so much ...tho you may be much less distant...than I am imagining...
Prayers for your surgery results and your recovery...
You note Tuesday, March 2nd...is that Tuesday the 3rd or Monday, the 2nd?
Reason clear to me is my Tuesday the 3rd eye appointment was confirmed today...
We can share so much more later on...we may miss one another over the next few days...
I know a number who have had the open surgery 15 to nearly 50 years ago...who have done magnificently ...Likely more in the last 15 years and I just do not know them from memory as I type...
Wishes and prayers for your excellent results...
Pat
It's my husband who sad he would stay up all night. So, I have my daughter driving me now. We live in New Hampshire. The hospital is in Massachusetts. They closed the roads in Massachusetts when the heavy rain fell. The snow seemed to have a pattern of week-ends and mid week. My husband won't pay for a hotel nearby. Now he's not too happy that my daughter is bringing me down. The doctor can call him after surgery. He hadn't planned to stay there anyway, because the surgery was supposed to be 2 and 1/2 hours, but the operating room is booked for 4 hours. So, I hope the snow will subside. I didn't want someone driving me with no sleep. Once when he drove me down he went right off the road. That was with a full night of sleep at 11 am. He just wasn't paying attention as he pulled off the highway onto a street. He still had his wheel pulled way to the right as he pulled out, he didn't straighten the steering wheel. The nurse practitioner scared me when she deviated so much from what the doctor said. She did not give an optimistic opinion. So, it was kind of a double whammy with getting there so early and her pessimistic take on the surgery.
I had problems trying to reply to you last night.So, I'm going to try replying to you through this older post. I'm glad that they did the exploratory. Now they can study the results and hopefully come up with a plan for you. I'm hoping that they will find out what these small arteries stemming from the fundus are feeding. If they can do that, maybe they can come up with some kind of a graft that can bypass the aneurysm while still feeding the area the area that these smaller arteries are feeding. I will pray that what they have learned from your exploratory and review will give them a way to free you of that aneurysm without harm. I have say, it looks like your body was actively trying to correct some kind of an obstruction and maintaining a way to keep the blood flow to areas that needed it. Are they following up with you on both aneurysms? Thank you for responding. I laughed when I saw all the information on the scar and the headbands. One of the questions I had was "where will the scar be"? Another was, "should I get a wig"?
God bless.
Carol 72
Thanks for the suggestions Carol, but there was no obstruction, and there is no chance of bypass. I’m glad you found the info I shared regarding my experience with open surgery useful and I hope yours goes well. May you recover quick and smoothly.
Hi High...you are doing beautifully in how you are managing it all...even that open surgery (to confirm diagnosis)...the wrong thing was not done...you were blessed with a doctor who so explained it to you...and, also appears to be a most excellent neuro-surgeon...
Thanks for your sharing...
Pat