Thank you for sharing. I have actually always wanted to shave my head (at least since Sinead O'Connor did) and this just gives me an excuse. I keep reading from others that napping is a necessity and I'm guessing I won't have to make time for it, as it will just happen. I haven't heard of a piplein. What is it?
Good luck next week!!
Hello. I’m new to this site, too, but I want to answer your question because it sounds like you might be going through what happened to me. In 1998, I had emergency surgery to clip a cerebral aneurysm on my right. It turned into one of those classic good news, bad news things. "Well, the good news is we saved your life by clipping the aneurysm successfully. However, we found a second aneurysm, a “mirror” aneurysm, on the left side in almost the same spot. Because the new aneurysm was still small, and I was weak from the first surgery, they decided to leave it alone and wait for it to grow. For a year, I walked around knowing I had an unruptered aneurysm growing in my brain. I understand I was a classic nightmare to live with at that time. Finally, almost a year later, I started developing signs that the second aneurysm was bigger- I felt pressure behind the eye, headache, and an angiogram proved it was time to do the second surgery. I was at peace with the second surgery. I almost ran to surgery to get it clipped. And while clipping it, they found a “bleb” next to it that was trying to establish territory. They wrapped the bleb in gauze and I understand that scars it over. Now I want to tell you this- after all I have been through, i’m still here and working full time in a very strenuous job. After my first surgery, while recovering, I went back to college and finished work on my degree. The professor gave me permission to wear sunglasses in class to soothe the bright classroom lights. The best thing you can do is not rush your healing time because its different for different people. After my second surgery, I had to use a walker for a bit, but that was only for a week. And I was putting things in the strangest places- my family found me very entertaining. It was kind of funny when I found the clock in the refrigerator. You will heal, it will take time, and you willl look back and say, wow, it was how long ago? Finally, I want to wish you courage, strength, peace and love. We are survivors, and sometimes I kick myself for not appreciating the miracle that I survived two brain aneurysm surgeries. You will get through this- stay strong.
Deb - thanks so much for sharing your story. A am really frightened of what lies on the other side of the surgery, and appreciate your story so much. I’m going to try to remind myself of it when I start getting that ‘out of control’ feeling that seems to be washing over me lately on a pretty regular basis. Thank you for the well wishes. Can’t wait to write to others after I have my very successful and uneventful surgery.
Thank you Melissa! The pipeline is a type of stent used to seal off the aneurysm. Although it has been used in Europe for years, the FDA has just approved it for use here in April. Check out the link below for some information.
http://www.jeffersonhospital.org/The-Daily-Dose/a-pipeline-to-better-vision-and-health.aspx
Melissa, welcome...
From all of us, whether external surgery / clipping or internal arterial access / coils or glue, ...we all need time to heal the impact on our brains. Many of us go thru the headaches/pressure, and the fatigue.
Please talk with your employer and arrange time off ahead of time.
Prayers for your decisons, the quality of your neurosurgeon, and the best possible recovery.
Pat
Melissa,
I am post op 3 months and had liquid embolization, onyx hd 500. I had to really psyche myself up for the surgery, but, with faith and support, you can do it!
3 weeks post op: felt great, energy was building and headaches were almost completely gone.
5 weeks, returned to work and one week later began having headaches again and energy was and still is depleted 5 out of 7 days.
It has now been 7 weeks and I just joined this group last week. It has been very helpful and I wish I had done this in the beginning. The most important part of this story is to Listen to Your Body! Rest when you need to rest, don't push yourself. For me, slowing down is a struggle, but, reading how others are recovering and listening to how you body feels is most important to brain recovery.
Thoughts and prayers with you on this journey and new beginning!
Karen
Hi Melissa,
Your situation sounds similar to mine. I had some vision issues and an aneurysm was discovered. After an angiogram it was discovered I had three. I had a craniotomy to fix the biggest one. Like everyone is posting, all our experiences are different. I was in ICU for 3 days and in the hospital an additional 5 days. I was in ICU for a longer period of time because I had a brain hemorrage the day after my surgery and had to go back in for another one. I was off work for 8 weeks. I woke up from surgery very scared because I couldn't talk @ first. I didn't have any pain @ all. I was disoriented....lost complete track of time. My voice came back within a day. When I first went home, I was extremely tired. Did something - email, watched a t.v. show for about 2 hours - then slept for 2 hours. Listen to your body. Be kind and follow what it tells you. It will be worth it. I worked from home about 2 weeks after I got home. Again - taking breaks often, but feeling good. The one thing that was weird was it took a long time to feel right in my head...physically. I'd get these feelings in the top of my head that felt like an octopus was sitting on my head and the tenticles were dangling down the side of my face. Weird, huh? but the only way I can describe it. That went away very gradually after about 3 months. I hear your scared. This whole process is so scarey. I have to go in on Thursday for an angiogram to look @ the "bugger" aneurysm. It looks like I'm going to have to go back in for another surgery, but this time would be a coiling. The bad thing is it's in a really risky area. Best of luck to you. Hang in there - you'll get through it. Stay positive and accept everyone's prayers. I'm certainly sending mine your way.
Thanks for getting in touch and sharing. I think the hardest part for me right now is not knowing what's on the other side of the surgery. I've had folks in my surgeon's office tell me that "the doctor wants to wait so he will be able to have you under his care the entire time you're in the hospital because it is such a serious surgery," and "the doctor would prefer you have it at this hospital since their NCC unit is highly trained and able to provide betters support since your surgery is so dangerous." What the heck is that supposed to mean? Isn't all brain surgery serious?? (I think I'll be doing a little "coaching" with his staff once this is over to help them understand how those words are so powerfully frightening). Survival rate for surgery on my aneurysm is 85% (and I'd prefer much better odds than that!). Permanent disability rate is 22%. I am the director of an advocacy organization for people with disabilities, so I'm not as frightened by that, but not knowing how that might present itself so I can prepare for that makes me feel so out of control (you might be able to surmise that I although I'm not controlling over others, I really like to at least feel like I'm in control of my life - and I certainly don't feel that way right now).
It's so good to hear what I consider to be real success stories from you and others about life after the "anny." I am surrounded by a wonderfully supportive family, friends, colleagues and staff. I feel very blessed to have found this resource, as the support I've received through it is support I can't get from those fore-mentioned. I'm opening myself to all the prayers, white light, positive energy - whatever it is people send - and am very grateful for yours! Am hoping your next appointment goes well. Thanks again.
Thanks. Good info!
Thanks for the advice. I have had several conversations about my leave (I'm the Executive Director of a non for profit) and at yesterday's Board meeting, we passed my "leave of Absense Plan." They are prepared for me to be gone through the end of the year, if necessary (which I certainly hope won't be) and are also prepared for a slow tranistion back, if needed. I'm really lucky to have the support of the Board and my staff - they've all been great! And it probably helps that the nfp I run is a disability advocacy organization run predominantly by people with disabilities, so they are quite familiar bodies and minds that don't always work, heal and recover in a typical fashion. WIsh everyone was so lucky.
I'm really secure in my choice of surgeons - he came recommended by docs from three competing hospitals in the city, as well as two former patients.
Muny thanks for the prayers, as they are welcomed and needed.
Thanks for touching base. The words of those who have gone through this are constant reminders to rest and listen to my body (I'm not so good at the resting part, but am beginning to understand it's not an option but a necessity).
On another note - have they told you why the headaches came back?
Dr. said that I could have headaches up to one year later. I find that the headaches are more prevalent when I work to many hours in a day, stress, or when I don't sleep well. There is letter "from your brain" in the month of April forum that really hits home with me. I have learned that I have to slow down and listen to how I am feeling, take more frequent breaks and stop worrying (easier said than done). This site is very helpful.
You are blessed to have a wonderful employer that will allow you the LOA and easing back into work. I went back to a 60 hour work week and that's when the headaches started all over again. It angers me that I allowed myself to let that happen, but, I am really listening to my body and brain now. It's just that important for a smoother recovery.
Have a Blessed Evening,
Karen
Hi, Melissa,
It is indeed difficult waiting and wondering what things will be like after surgery.
It is also understandable that the words of the office staff were concerning. However,
they were just trying to explain to you why you might have to wait and/or have the
surgery done at a certain hospital. Aneurysm surgery is indeed serious surgery and
you are fortunate to have a surgeon and staff who are providing you with the best
circumstances to provide you with the best opportunity for a good outcome.
Sounds like you have aneurysms which have not ruptured. The death and disability
rates for treatment of unruptured aneurysms is not nearly as high as you quote.
In addition, surgery done by a skilled/experience neurosurgeon like Dr. Payner
lowers the risk even more.
Good luck to you!!
Hello Melissa, in Jan 2006 I had a ruptured one on left side, the operation to clip caused a stroke due to the large number of little branches of the area it was in. 5&1/2 years later I cam walk a bit with a cane but my right arm and hand are useless. I never found out what caused it no warning and no family history. The biggest problem i have now is trying to survive on SSI disability no increase in 2 years now and it seems when you have a brain injury people forget about you or write you off . 2 years after the rupture I had the one on other side done all went well then . I wish you all the best with yours but remember recovery could take a long time. Everyone tells me I am lucky to be alive but many days I do not feel that lucky . just keep that smile on your face and i guess be grateful for what you do have.
Melissa, Im desperate to hear your recovery story. I pray that you are doing well!
heather
hi melissa, a unruptured one is easy to recover from then a ruptured one. you should be home in a week but might need some rest, let your dr know all your meds and ask all the questions to him or her that you need to, I know it is scary.You are gonna need time to adjust so dont rush work, take a break.:))