Good Morning everyone. First I would like to say I am really happy that I found this site. On February 2nd I had the experience of losing my vision ( really it was like looking through a 3 way mirror) and the worst headache of my life.
MRA and CTA found a 5x5x5 mm distal right internal carotid artery supraclinoid unruptured aneurysm, posterior communicating artery. . I see the neurosurgeon on Monday. I have been researching this particualar type of aneurysm with scary results from the Neurology websites. I feel as if I am a walking time bomb. At this point, I am scared to do anything and I hate it! I am 52 yrs female, graduate student, fulltime ER nurse mother and grandmother.. All of this is complicated by the fact that I have Common Variable Immunodeficiney Disorder, which increases my risk for acquiring infections, I receive IV IGg every 4 weeks. My real concern are the post operative complications, and resulting deficits. Any advice on questions that I may not have thought of since all of you have had this experience (I am sorry to say) to ask the neurosurgeon? Thank you all.
Hi Debbie and welcome to BAF,
Please know that everything you are feeling is everything we have all experienced when our annies were originally found. You will find many different responses to you post based on the type of surgery that has been experienced by many of us here.
My story: Back in May, 2011, I had discovered 2 annies, both in the internal carotid artery, one left side 3mm and one right side 9mm. I had no symptoms, I was actually in the hospital due to pain and numbness in my left arm. I was 49 at the time. My annies were discovered after having an MRA and MRI, and the following morning I was taken via ambulance to a larger City hospital. After meeting with the neurosurgeon, the following morning I was scheduled for a angio and possible coiling. Unfortunately, once they got in, the surgeon found that the mouth of my 9mm annie was too wide. I was put on aspirin and plavix and sent home for 10 days after the doctor told me that I was a candidate for the new procedure the PED (pipeline embolization device) stent. So 10 days later, back in the hospital and the pipeline was put in. One night in ICU and by noon the next day, I was home and on my way to recovery.
So my first question to you is, what type of surgery are you going to have? Seems you would be a candidate for the pipeline since your annie is in the ICA, which is what the FDA originally approved the pipeline for, although they have expanded its use outsdie the ICA.
I understand that "walking time bomb" feeling, as I still have the 3mm which is untouched at this point. My surgeon, as many here can testify, believes that anythingunder 5mm is too risky to do surgery on. So I sit and wait to see if it will grow. So far, a 6month MRA and angiogram and the annie has not grown. The 9mm annie which got the pipeline has completely occluded. Rest assured that those feelings are totally normal! But know that since your annie has been discovered before rupture that you are lucky unlike so many who find out only after rupture happens!
As far as questions to give to your doctor, find out about the surgery (i.e., clipping, coiling, PED, glue, etc.), how many surgeries he has done and his expected prognosis for each. Every time you think of question, write it down and take it with you to yoru appointment. I am sure everyone here will give you excellent questions to ask. For me, I didn't find BAF until after my annie surgery, so I went in kind of blind!
I wish you best of luck and please keep us posted. You will be in my thoughts and prayers.
Linda
Debbie, welcome...you are one of the blessed to be diagnosed before a rupture; and with the size at this time. My L ICA aneurysm was 6mm when it ruptured; I cringe for others when I read " wait til 7mm".
I so agree with Linda's input...
Prayers for your most comfortable decision
Pat
Again ... WELCOME Debbie...!
The People at BAF...will give you alot of good suggestions...!
Cyber~prayers your way...Colleen
Hi Debbie
Welcome to BAF and the wonderful people here. Just to say, I had the same fears when I came here, and many people will be able to give you very good advice. I'm still petrified of resulting deficits , having my op on the 28th, and have decided to put my trust in the surgeon and hope for the best.
Hi Debbie and Welcome to the community. I've only been a member about a week. I too was just diagnosed with an aneurysm 3.5 x 2.5. The first doctor I saw wants to do the clipping surgery. I went for a second opinion only to be told he doesn't do these type procedures but he wanted to consult with 4 other doctor's who do. I'm currently waiting to hear back from him. I see a cardiologist for a work up tomorrow.
My left arm went limp, I went to ER and that's when they found the aneurysm. I know the "time bomb" feeling. It's scary. I'm trying to be calm but want to scream at these doctor's who act like it's an everyday thing.
I too had my list of questions when I saw the first doctor. He was great at answering them all and taking time to talk with me.
Please let me know if you need to talk or anything. Perhaps we can ride this wave together.
Debbie,
Eighteen years ago my wife had the same symptoms only she described her vision interuption as looking through a kaleidoscope along with the worst headache of her life as well. She had a rupture of the anterior communicating artery. As I looked through her surgeon's report of operation, the right and left optic nerve is parallel to this artery depending on which side is affected. My wife can't recall if the vision disturbance was at either eye or both however. The best thing you can do right now is to avoid anything that will upset you and raise blood pressure. Be assured that newer surgical techniques can help avoid many complications and deficits. Don't be afraid to speak up and have the Neurosurgeon move this along. The sooner it is resolved the better you will be. God Bless!
Hi Debbie and welcome to BAF
I’m new here to I was diagnosed with a 7.2mm aneurysm about 4 weeks ago iv seen the neurosurgeon who has recommended the coiling procedure and I am going to see the guy who will be doing it on 6th march.
I will have the procedure done about a week after that… they tell me we will just have to wait and see…
I know well about the walking time bomb feeling I felt like that too but now I’m just carrying on as normal at
work and Everything else until someone tells me not to. I think im trying to take my mind off it…
the neurosurgeon said for me to stop smoking and try lose a little weight which would help so that what I’m
doing it’s my 5th day without the smokes and getting there a day at a time hehe.
Anyway welcome again Jimmy
Hi Debbie,
Welcome to BAF.
The other day I remembered that I used to refer to myself as a "walking time bomb" but I don't think I've used that term in more than 20 years. Even then I think it was more for theatrics than it was out of fear. I had an aneurysm rupture in 1969. At that time, I was also diagnosed with a second one and 8 years later two more were found. My aneurysms have been pretty much stable since then.
My case may be somewhat of a "rarity" but I write this to let you know that it is possible to survive and thrive both as a survivor of a ruptured aneursym (that was clipped back in the "dark ages" - pre CT, pre MRI, etc.) and as a person who has lived a good life with unruptured aneursysms. I fear the pick-up trucks and 18 wheelers on the highways of Houston more than I fear another rupture. Before, anyone thinks that I'm out of my mind or insincere, I'll tell you what I do fear. I fear the possibility of another grand mal seizure. That's more real to me and each day, twice a day, I am reminded of the possibility when I take my anti-seizure medication. I give thanks to God that it has been 20 years since the last one. But, believe me, I still work to take my meds on schedule because forgetting to do so could result in another.
Debbie - Please take advantage of the fact that you work in a hospital and talk with the neurologists and neurosurgeons who you work with as an ER nurse as well as with the surgeon who you will see professionally. These are great resources to use to get information in addition to what you find on this site that will help you to assist in making the decision that will be right for you. And, you can always ask your questions "on behalf of a friend".
I will pray that God will guide you in making your decision and that he will bless you with an excellent surgeon and other medical personnel to treat you in accordance with his will.
Carole
Good for you Jimmy. I'm on day 5 of quitting too. That's one of the hardest things about being diagnosed. We knew we should quit before but now it's not really an option. I'm trying not to worry and just move forward until I've made a decision on treatment. Hope all goes well with your coiling.
Cari
Carole, you may have posted this earlier but I'm wondering what the size of your unruptured aneurysms are?
Debbie, welcome to BAF. I had an 8mm x 11mm aneursym on my left ICA - it was compressing my left optic nerve. I was diagnosed in January 2011 (after a routine eye exam ) , had the clipping done in April 2011. Surgery was successful - no headaches, little pain. I did have swelling on the left side of my head and my eye was swollen shut. I was however, one of the 1-2% who get an infection. I contracted a staph infection at the incision site which I din't recognize until 5 weeks after surgery. That required a debridement and the skull bone flapneeded to be thrown out due to infection. Three weeks ago I had a cranioplsty to insert a new prosthetic bone. Surgery went well. Long story short -- my journey was much longer due to the infection BUT I'm here to talk about it - feel good and can deal with some of the minor after-affects of the surgeries. The three months I waited for surgery were long ones -- but keep a positive attitude -- you're destined to be a survivor.
Hi Cari,
I have a 5mm interior communicator aneurysm and two 2mm annies. My last angio was 1/19/12. The aneurysm that ruptured was an 11mm PCA "according to 1969 measurement techniques".
Take care.
Carole