I am here looking for support and any advice from anyone who has been diagnosed with an aneurysm and/or had surgery.
A little about me...I am a 28 year old female with a history of PKD (polycystic kidney disease). A few months ago, I had an episode that resulted in flashing and temporary vision problems with my left eye. The episode lasted about 30 minutes. I followed up with the eye doctor who stated it could have been an ocular migraine, but suggested I follow up with the kidney doctor since I never had this before nor do I have history of migraines or headaches.
I followed up with my kidney doctor and she scheduled a brain brain MRA to be on the safe side since people with PKD are more prone to aneurysms. The result of the brain MRI was that I have a saccular aneurysm in the area behind my left eye. It measures 6mm.
I have gotten 3 opinions so far from various doctors (local and out of state). The doctors all agreed it should be something I treat vs. "wait and watch". I haven't really felt comfortable with the doctors I met with. I have another appointment with a doctor tomorrow and I am looking forward to meeting with him. I already spoke to him over the phone and he seems very sensitive and shows concern about my aneurysm. Plus he does coiling and clipping. I have a good feeling and I think he's going to be the one.
It's a scary process. I would love any advice or suggestions from anyone that had to deal with this. Here are a few questions I have:
-What is an angiogram like?
-How have people recovered from the coiling surgery? Can I return back to work?
-What type of therapy is needed after surgery?
-Why do people say any brain procedure is emotional and can "change" you? Does this apply to just clipping or coiling as well?
Today there is webinar on follow-up angiograms (I understand post-procedural..) at 7:00 PM EST... noted on the BAF Main site...
I have close personal friends (a family, not mine) who have PKD...Your PKD organization and the NKD likely have in-depth info for you...I do not have PKD...did have coiling...which generated my multiple questions on the "ask the doc" in this forum...questions 02/19/13 forward...
You will likely get much more response from members here...
To help answer your questions...a little background...I have a leaking 9mm aneurysm on my basilar artery tip and 1 brain aneurysm behind my left eye that is 2mm...The 9mm was coiled a little over 2 years ago...my 2mm is on "watch and wait to see if it grows"...
1. Angiogram...Is different for everyone...but to truly find out about the procedure...look at Mayo Clinic...great explanation...and then come and ask questions based on the actual procedure...most people recovery well from angiogram after a few days of rest.
2. Most people recover from coiling and return to work after some time of healing...all depends on procedure and how you do afterwards with recovery.
3. Therapy again depends on how the surgery/coiling goes...
4. It has something to do with touching the brain...it happened to me after I was coiled...I am not the same person, but it is ok...maybe after accepting my "new normal"...I like the changed me...
Again...this is such broad questions, because everyone is different depended where their annie is located? the procedure? one's age? medical history? etc.,
hi Annie! glad your here=you'll get lots of support. The angiogram is ez - i was out cold and don't recall a thing but they make you lie still for a few hours afterwards, recovery varies, mines long cause i had a sah need of therapy will vary too- hopefully none. Don't worry about change- you will be the same person and any change will be positive i think~take care c-u soon!
Thanks all for your response! I think I may be more concerned about this emotional "change" than anything else at this point..lol. I don't want to change who I am..I don't understand how I will be different. To be honest, I've been so nervous and on edge since I found out about my "annie" that I haven't really even been the same. I am nervous, scared and always try to maintain my cool. I get emotional once I sit and actually think about this whole process...I play the "what if" game all the time. I have to stop myself. I think once I go to the doctor tomorrow and schedule my angiogram I will feel a little more at ease. One step at a time I suppose. Thank you all again..so nice to know I'm not alone.
I can't really answer the question regarding coiling as I underwent clipping surgery. The angiogram wasn't bad. I was nervous as heck, though. They give you a sedative to relax you, my neurosurgeon performed the angiogram and talked to me pretty much the whole time. I couldn't talk to him, but he explained different things feelings that I would feel from the dye that in different areas of the brain. I actually found the procedure relaxing from the sedatative. I understand that each person is different, but as stressed out and nervous as I was ahead of time, it was relaxing to be there and have the procedure done. I hope this helps.
You've certainly happened upon the right website! In my angiograms of the past, I honestly don't recall anything negative about them...the thing that was the strangest yet really pretty awesome (I thought at least), is when the contrast dye goes thru your veins and up to your head, you can actually feel the warmth of the dye going thru your arteries -- it didn't hurt or anything but it was such an odd sensation...and the procedure was pretty quick I thought. I was already admitted to the hospital on each occasion so when it comes to the after-effects of the angiogram, i really can't say, i just stayed in bed and relaxed. I had a clipping for an aneuyrsm in 1998, a coiling for another in 2006 after an sah/coma, and another clipping in 2010 as my coils had compacted and instead of adding more coils I opted for the clip procedure...I don't think my emotional status has changed after any of my procedures honestly, I'm just happy to be here and happily still 'me, and no doubt you will remain the same 'you' . Glad you're here Annie ! Peace, Janet
Hi all...just an update...my appointment went well ! I really liked the doctor and he was very assuring and caring. I have my angiogram scheduled for the 21st of this month. He said once the angiogram is done he will know what type of aneurysm it is (wide neck, etc) and what procedure to do. He is hoping the coiling will do the job. So not much else until then. Thanks all for your support! and Thank you Janet...very reassuring to know you didn't change much after the surgery...very comforting words. Thanks :)
Just my 2 cents. I have had 4 angiograms and other than some soreness in my groin and needing a few days rest it was not that bad at all.
As for how you will feel and behave after the coiling procedure, everyone is different. Those of us who have had ruptured aneurysms will undoubtedly state they are different in some way. But the degrees vary greatly. I have had a rupture and a coiling and I am almost 95% back to the way I was and have very few issues related to the aneurysm. Those that have a coiling procedure with no rupture or other symptoms generally return back to their normal lives fairly quickly with little or no deficits or changes. There is no reason to believe you will have any problems or any changes at all.
I had a ruptured & an unruptured aneurysm coiled February 9, 2012. I am back to work full time. I get tired occasionally & there is some short term memory issues. I carry a pad of sticky notes with me all the time. I have 20 days while in the hospital that I can’t recall. My friends, family & coworkers say I’m pretty much back to normal & pretty much unchanged. I had therapy in the hospital but nothing really when I came home. We had to build my muscles back up from being in the bed for so long. I also have gone to postitscience.com. There are some good brain exercises there. Keep us posted.