Whoa!!! 24 and counting daughter sacs! And I thought my two daughter sacks was two too many! You certainly have dusted yourself off and gotten back on the horse. I too am a horse rider and know what you mean.
Wonderful news that you were not emotionally affected if I read your words correctly. I find it a bounce between denial of the possible severity of the future and a jolt of reality that this is going to be my new life which will always include neurosurgeons.
Loved your comment about having a brain reset especially when it comes to spelling!
I wasnât looking for a public announcement as a new member. I just wasnât sure I was a âofficialâ member.
Am interested in what you mean about the diagnostic angiogram s setting you back neurologically and physically. I have had three, with the one during the craniotomy being around 7.5-8 hours during surgery. I do feel like I need a designer lampshade for this radiation glowing brain of mine.
Does anyone know of the latest information effects of the gadolinium on the brain or what ever they use in the angiograms?
Sometimes I think itâs best to not look for trouble and accept that I am alive and living each day a little braver and brazen than the day before. Just grateful for gifted surgeons and supportive family, friends and now this wonderful community!
Thank you for sharing with me. All of your comments have helped me beyond measure!
I guess coming from a large extended family on both sides, my little aneurysm didnât want to miss a party lol. I believe it was Chuck Norris and his wife who brought awareness of the effects of gadolinium to the world. I am allergic to it. The more times I had an angiogram, the worse my reactions would be despite being pre-medicated with Prednisone. The last procedure has stopped any future angiograms (happy dance) because I went into severe anaphylaxis before she was half way through looking around. I have since learned that anesthesiology has their own set of records that are part of what I see on my portal.
As for the anesthesia itself, it makes my neurological gains go back. So my stutter, aphasia, tremor and gait worsen. My brain stays muddled and confused for months. The more times I went under, the longer it would take to get over it. My Neurosurgeon decided to ensure I was given less and less, just enough that I wouldnât try to move with the catheter in my artery.
I remember Dr. Gary, who did my psych evals say that I could light up all of our county with the CTs I had. He also made mention that if he hadnât known what I did for a living and knew me professionally prior to my rupture, heâd lock me up on the 7th floor (Psych Unit at one of our local hospitals) and throw away the keyđ¤Ł. No one has yet to answer how much radiation I can have before I get cancer, not even my PCP who struggles to have me get a mammogram. I guess itâs a 50/50 thing like I learned in one of my university classes - 50% environment/50% genetics. Now I need to be careful with the new dentist who took my decades long dentistâs place when he retired. Imagine my shock when the machine told me it was a CT and then the fool thing said it was over so I opened my eyes to find bright flashing lights. Donât open your eyes until the hygienist tells you to back up. It hit me like a ton of bricks and the entire office wanted to call BH to drive me home.
What a rough experience you went through! What type of testing will you be able to have if the diagnostic angiogram is out? I know what you meant about the concern about having so much radiation and the possibility of an increase in cancer.
Gadolinium stays in the body in my experience for several years at least. I had a diagnostic mammogram that used gadolinium. Several years later my PCP ordered a heavy metals test because I lived on the base as a young child at Camp LeJune Marine base during the time the water was poisoned by the solvents used at the dry cleaners. Not only did Mercury, Lead, arsenic and several other nasty heavy metals but a healthy dose of gadolinium.
Several years of mostly weekly chelation therapy has brought my levels way down.
Now I feel like I need a lamp shade for a hat because of all the radiation I have had over the almost one year!
So grateful for this supportive place for us all to gather to share and support.
Just regular old MRI/As now for me unless she absolutely needs to do an angiogram. I made sure that her NP labeled my chart with severe anaphylaxis, itâs also when I discovered anesthesia has their own set of records that isnât out in the patient portal with WFBH, not sure about other hospitals. I do need to get an I.D like @ChrisC and @oct20 were talking about. I donât much care for the silicone wrist bands, so I have to take a pass on @DickDâs suggestion, although any would be better than none.
Military bases! Do you remember that unique green or yellow they painted everything with back in the day? I would say they got a deal on it but I do know better lol. BH remembers red lead as being used for trim. imagine the dry cleaners on base was ran and operated by the military back then for the most part and not civilians contractors. It sounds as if the dry cleaners were doing a big no no either way. I am happy to read your levels are coming down. Good for you!
I shared your part about wearing a lamp shade with BH as I was laughing out loud and felt the need to share. Thanks for the early morning chuckle!
Hi Suzanne. I am catching up and reading some of the posts that I missed since my last visit. While I had a rupture and you started off without one, but sounds like one occurred during surgery, maybe there are more similarities than one would otherwise expect. I can tell you that I am four years out. I still have some memory loss- mostly short term. I think the long term memory stuff that I canât remember I might have chosen to forget or never remembered to begin with. I also still struggle to find the right word, just not as often. As far as spelling is concerned, I was never a good speller - sounds like I might be able to use the aneurism as an excuse now. Haha.
As for load noises, bright lights and multiple conversations at once, itâs all still a problem. I can be in that environment, but the drain on my energy is severe. Speaking of energy, I get tired after focusing or doing something for a concentrated time. For example, I walk around a hospital as a Eucharistic Minister for a shift of around three hours. I am completely exhausted after that. Or if I work on a legal matter for a period of time, I get tired. So I have to pick my battles.
As for hearing, interestingly, I had a hearing test this year and was told that I had mild to moderate loss. I have developed tinnitus which my doctor tells me is not related to the aneurysm. The ENT did not indicate that the hearing loss could be from the aneurysm either. I know that while I was in the hospital and when I was discharged I wasnât hearing well, but I thought that improved, Maybe just not enough. I did not go though the battery of tests that you have and maybe that was a mistake on my part. Probably too late to address a this time.
I will note that my doctor was very quick to say any problem that I had was either not permanent or was not a result of the rupture. Everything I asked about, the response was - it takes a year for that to resolve - it takes a year or two for that to resolve - it takes 3-5 years for that to resolve - that will resolve when you die. Obviously, I am not sure that he was right. I know that he has done this many times. But I have read and talked with many other survivors and it seems that we all say the same thing. I wish you the best and hope that your concerns resolve themselves in time.
Thank you so very much, Brian, for sharing your experience and the knowledge.Perhaps, it is more common than not to experience these various similar post surgery changes. I learned and agreed with from your sharing about your experience post surgery.
Your words give me comfort in knowing that I am not alone with these life changes. I appreciate your support and all of the support and shared experiences from everyone on this wonderful site on this journey of recovery.
I donât think it is ever too late to establish baseline testing for future improvement! The world changes
once one hears the words of a brain aneurysm diagnosis as it most likely is for all serious diagnosis. The innocence of going through your day without knowing that you have something (now fixed) could have very serious consequences on your life are no longer an option.
Now, I try to make positive choices and find delight and gratitude to enjoy each and everyday. I like your idea of giving back to those who may be laying in the hospital bed as we all once were. I am also a Eucharistic Minister and think that would be a great place to start! Thanks again, for sharing. I very much appreciate your sharing.
Hi Chris! I apologize for not answering your question about what type of âserious ear plugsâ I was given. They are the type used by people who fire rifles in the military. They are also water proof.
There is not a name on them or I would share it.
The only problem I have when I use them is that my tinnitus is louder, to no sleeping with them in. I have a white noise machine that has several choices that can match the hissing sound in my ears and off to sleep I go!
All the best and rock on!
What a rough experience you went through! What type of testing will you be able to have if the diagnostic angiogram is out? I know what you meant about the concern about having so much radiation and the possibility of an increase in cancer.