On March 12, 2011 a 3.5 cm annie was discovered after a double vision episode I had on March 8. After an angiogram on April 22nd and again on June 13 the annie had grown to 5.6 cm and I was set for liquid embolization with Onyx hd 500 on June 29th. I had terrible headaches before the surgery on 6/29. I have returned to work after 5 weeks and I am having terrible headaches again, just as bad as before the surgery. I was told that I would probably have headaches for up to a year, but, I was just wondering if anyone else could describe their recovery from this procedure. I am scheduled for angiogram follow-up in Dec. Thanks for your input.
Sorry to hear the headaches continued. With Onyx I would not have expected headaches to continue unless the pouch is pressing on a nerve. Keep us posted.
I looked up some FDA data on Onyx and apparently vasospasms can be a side effect as a result of the injection. Only your Surgeon or second opinion Surgeon can address this for you. You should call and ask the Surgeon to definitively rule this condition out. Vasospasms are similar to headaches in that blood vessels become constricted and reduce blood flow. There are treatments to help you if this is the case. I hope this information is of help for you.
Thank you Ed. I had vasospasms with the June 13 angiogram w/balloon occlusion and also with the liquid embolization surgery. I also spasmed during my overnight stay at the hospital. It appears that both times when going beyond my neck with any foreign object, I begin to spasm. Both times I was given nitro glycerin to stop the constriction. I wonder if this has anything to do with the very low blood pressure I am experiencing at times. It has been as low as 100/36. My normal bp is 100/60-70. I think I will contact my Dr. on Monday. Thank you for the information.
Sorry to hear about your headaches. I had the pipline done in June, 2011 and my doctor did mention that headaches were possible for about 6 months after the surgery. They do, however, seem to be getting less and less as time goes on.
Best wishes and healing prayers and thoughts to you.
Thank you Linda for the information. I am glad to hear that the headaches begin to subside. It just seems that stress (from work) seems to bring them on and lack of sleep or too much physical activity. Does that seem to be the norm? I am not myself since this diagnosis and recovery doesn't seem to be a whole lot better. Is this to norm too? Thanks for responding!
Your low blood pressure reminded me when my wife was in ICU, her surgeon intentionally had her blood pressure increased to abnormally high levels to prevent the vasospasms. It's seems more likely that maybe this could be the cause of your headpain. The 100/36 is very low. At that level once the vessels begin to spasm the cycle continues until something provides additional support to prop it open then the spasm will be reduced. Keep pressing your Doctor and never be bashful about it. For your reference I entered the following information into the search engine duckduckgo.com "Onyx HD 500 Composition" this should bring up a PDF file name: Preclinical Review P 03004"
Thank you for the information. I really appreciate your concern and taking the time to research and help me with this journey. I am going to follow your advice and also look up the info on onyx. Did your wife have onyx? My blood pressure dropped in ICU as well, but, not as low as it has been of recent. Today it was 115/58, better, but, I can tell when it drops. I get dizzy and feel really strange. Thanks again for your research, I will keep you posted.
She had a straight out clipping 17 years ago. I think onyx might have been dreamed about at that time.
You may also want to discuss with your primary care physician about your thyroid levels. Although the thyroid is located just below the throat, it has a connection via the endocrine system within the brain. Low levels can contribute to the symptoms you are feeling.
First, prayers are with you; do call your neuro soon; and, please hold down physical activity until you have that checked. You have low BP...your standard is the same as mine...Mine only goes up when I commute for an hour, find a parking place and then the neuro...
As for head pressure/head aches...I was coiled (and stented), not glued. My personal opinion is that filling an aneurysm with anything keeps it the same size for the pressure on the area; or worse, often expands w/more coils added (have not heard of glued results yet) in follow-ups.
My personal opinion is comparing to a tumor (benign or malignant) that are always surgically removed and/or shrunk by radiation or chemo to reduce the pressure in its area. Filling an aneurysm with coils or glue does not reduce the size. ...it stays the same, or expands. A local neuro told me there was no comparison to a tumor... and, I do not have the expertise to comprehend his explanation. A cranial nerve is cranial nerve...
Overall you were blessed with finding doctors who took the right steps in getting you diagnosed and treated before an unexpected rupture. You were blessed.
As for work, you did have major surgery (it just is not outwardly visible). Please talk with your appropriate manager/HR about reducing your hours until you have healed. The brain needs healing even when it is not visible.
One time when we all need to thank our military a trillion times more (getting up w/the costs) for their bringing forward the impacts on the brain with no physically visible injury.
Prayers for you and your excellent connection to your neuros and, of course, back to this site; and, thereare others, too.
Ed, you always provide such good info; first, I want to compliment you in having been an excellent, wonderful husband these past 17 years; yes a lot stay, tho few do a lot of research that you share. She is blessed...Hugs to you.
The pituitary is the primary gland and located in the base of the brain in the sella turcica area ...some of my records note infundibulum...terms to help others research the anatomy and the affects/effects on us.
Thank you for your information and concern. I originally was going to have the clipping, but, went with the onyx due to vasospasms during the angiogram w/balloon occlusion. My neruo encouraged this procedure and said that it was definitely safer for me.. He (Dr. Robert Mericle) has produced studies with this procedure and the success rate is 95%. I am beginning to wonder if I am in the 5%. I have contacted and set for appointment in October. I am also seeing my primary dr. next week. I will be fine, just need to rest. Thanks for your encouragement, as well, as your husband's! You guys are Great and I appreciate your encouragement and prayers. Will keep posting.
Karen, everything you say, the stress from work, the lackof sleep or too much physical activity I have found does bring about hte headaches. I have learned that you brain is the most sensitive organs of the body and when it needs time to heal, the rest of your body is pretty much commanded to listen to it. Now, you have to tell your mind to listen to your brain and slow it down!!
If you look back a few pages on the forum, you will see someone posted a letter from your wounded brain. I have that letter posted in different places, at my cube at work, in my kitchen, the mirror in my bathroom to remind myself that my brain needs time to heal. I am just 3 months post op and most days I do feel good. But when the bad days hit, they hit hard. I get bone tired where i sleep the day away and the headaches are the icing on the cake so to speak. I believe that the headaches have subsided because I have learned to listen to my brain and slow down and stop trying to be superwoman!!!
As far as not being yourself since the diagnosis, I think, as Colleen ususally says, this is the "new norm" for all of us. It's our afterannielife and we need to learn to heal ourselves, listen to our bodies and thank our higher power for saving our lives!!
Thank you for the feedback. I have really overdone it today and am now trying to rest. I will be 3 months on 6/29. Tomorrow's looking like I will be need to stay home to heal. I am a retail store manager, not many monday thru friday work weeks. Thanks for explaining your recovery process, sounds much like mine.
Thank you for the hug. I knew it was somewhere in the neck region because I’ve seen the surgical scars. I just didn’t have the time to break out my Grey’s Anatomy LOL.