Newbie here

[Parisb]

Hey all. I’m new to the community. I just passed my 1 year anniversary of my rupture. A little back story I was 7 months pregnant when my BA ruptured. I felt the swelling when it was happening but didn’t know what was going on. My vision went blurry and I tried to scream for help from my daughter in the other room but I couldn’t even yell. The only thing I remember after that was waking up in ICU. According to the stories from my family, my 10 year old at the time found me on the floor in the middle of the night called 911 and called my mom. If it wasn’t for her I’m not sure me or my baby would be alive right now.

During my stay in ICU, my brain continued to spasm and I had another stroke. I delivered my baby 2 months early as well. This has been a really traumatic and overwhelming process. Readjusting to life with this “new state of mind” is a long journey so I’m learning. I honestly think I jumped back in too soon but when you’re a single parent with very little support what choice do you have. I have some residual effects like my memory or lack there of and trembling hands, which I assume is from the strokes. I have a flow diverter stent in now that was placed February of 2022. I had a follow up angiogram August 2022 and everything appeared to be ok. However I still have weird things happen like hearing will go muffled with excruciating headaches and let’s not even talk about the lack of energy. I’ve also noticed some changes in my personality. Doctor say I should be fine by now though.

I don’t mean to get on here and talk a lot. I’m just really happy I found this group to gain more knowledge and insight from others like me.

[Moltroub]

You’re not talking too much! You should see the length of some of my responses or Merl’s from @ModSupport! Never worry about the length of your posts. The more you are willing to share, the more we can help is my way of thinking.

The first thing that pops into my brain is what an awesome mother you must be to have raised a child who knew what to do during a crisis at the age of 10. I know teenagers who would have fumbled the ball, so again, great job!

I had vasospasms for 21 days, which as you probably already know causes it’s own type of brain damage from the blood not getting to different areas as it should. It’s like kinking a hose pipe (garden hose) so we could get a drink of water from it as kids and then opening it back up. The problem is as you’ve experienced, vasospasm can lead to ischemic strokes and I hate you had to experience that as well.

I also had issues with my right hand trembling all the time and any type of stress or excitement it would affect my left as well. It didn’t affect my quality of life and I had to argue with doctors to ignore it. My first long time neurologist tried me in all types of meds for it and my body despised them. I thought he was addressing something else, until I remembered to ask his wonderful office manager who was also his assistant, she wore a lot of hats.

Headaches in the beginning were phenomenally painful. Try not to bend over, squat instead if you can. Though I’m unsure how to do that changing a diaper. Maybe the mothers in our group can give some advice. Seems bending over was always a trigger for me. The things my Neurosurgeon says for headaches is to hydrate, eat protein, hydrate some more, rest, repeat.

Instead of my hearing being muffled, it dramatically improved which has its own set of issues. I heard things our young dog heard at the time and no humans😂. We had a friend up in Virginia that we would visit, always went to the church he attended and it was loud, so I wore ear buds that are OSHA approved, Kenny the pastor didn’t mind at all and Levi, our friend, would get on those who said something. I also wore sunglasses inside and out for the first few years until I could retrain myself to tolerate light, still have to work on it. With my hearing such as it is, I had to wait until our great niece grew out of the constant crying as babies are high pitched and it would hurt. I can walk away when they’re squealing with delight, you can’t. And girl, I feel for you. I wear my ISOTunes when I’m around the children, I can still hear them but it reduces the higher pitches. One of our nephews suggested it and it does work!

I remember when my Neurosurgeon said my brain was as healed as it would get. I told her she was incorrect. I ruptured in Nov 2013 and it’s still healing! Things keep improving so keep the faith!

[BrianS]

Wow. You stay on here long enough and another miraculous event is noted. Actually, I like to think of my situation as a lot of little miracles. Maybe that is the same for you. Your deficits are the same as almost everyone else on here. Short term memory loss, lack of energy, headaches. The trembling hands is new, I hadn’t heard that before which makes me wonder about my trembling hands. UGH! I don’t think the journey to recovery will end during this lifetime. I am thankful to God for my continued healing on a daily basis.

Don’t accept your doctor’s statement that you should be OK by now. He/She hasn’t had an aneurysm, he only treats them. If you think there is a problem ask for treatment. If you think that you need more OT to deal with the things you site are wrong, tell him to prescribe it, especially if you feel like you rushed back to life in process.

Goodluck and God bless.

[Zunie]

I was also told “you should be fine by now,” at my follow-up appointment. I was devastated and felt like I must be crazy. A friend of mine was very helpful when she told me that specialists, like orthopedists, neurologists, brain surgeons, etc, are like carpenters. They’re very excellent at what they do. They can fix things amazingly well, but don’t ask them to do the psychological part of your recovery. They will have no idea what you’re talking about. LOL. That advice was very helpful to me and continues to help me through other medical problems I’ve had.

I’m so glad you reached out to the site. What a journey you had! And the tiredness is epic! You have two children and the fact that you can even muster the energy to reach out for help at this forum is amazing! Hang in there. It takes a long time to heal.

[ModSupport]

Hey Paris,

@Parisb

I don’t mean to get on here and talk a lot.

Please, Don’t ever be apologising here for talking too much, as @Moltroub mentions you should see the length of some of my posts We all need an outlet, if we don’t that pressure can build and build, becoming very destructive. Who better to talk than people who have been there themselves? Us.

@Parisb

Doctor say I should be fine by now though

Ahh, yes, this is VERY common. I too have repeatedly been given the same line. As @Zunie mentions specialists are like carpenters. I’ve often used the example of them being like mechanics ie If your car breaks down, Fix part ‘X’, problem fixed. Only we’re not talking about mechanical. I have been given the ‘All fixed’ speech a few times, but somethings not right. I’ve told the medicos repeatedly, but it’s all been minimised. So I gave up getting any great answers.

I’ve been and had regular scans and been told ‘compared to the previous scan, little change’. My pcp has been adamant ‘Scan says all is fine’, and I told him ‘but somethings not right’. Then he comes out with ‘I think you just like the medications…’ I HATE the damn meds. So then they point to a psych issue or a sensory issue or any other issue.

So, my last scans was about 3 months ago. A few weeks ago I received a phone call from the hospital neurology dept “Upon review of the scans it seems we have an issue…” she says “…somethings not right…”. OMG!!! I wanted to scream, I’d been telling them and telling them, only for it all to be minimised. It seems the radiologist has ONLY been comparing to the most recent previous scan, but when compared to the original post surgery scans it seems there’s a rather more substantial change, so much so they want me back in hospital within 3 weeks

Now, I haven’t hit the PANIC button, yet. Like you, I have a shunt. The shunt has an adjustable valve. My hope/wish is that a simple valve adjustment will resolve said change BUT in the dark recesses of my mind are these nagging thoughts ‘More surgery??? OMG not again…’ If they do decide surgery is required, this will be my 7th neurosurgical procedure and happy, I am not.

Just know, you are not alone in this journey and although some medicos may make it seem that you are the only one having these ‘odd’ symptoms, rest assured, you are not the only one.

Merl from the Modsupport Team

[Moltroub]

Sorry to read about you having the possibility of another procedure and I do hope it’s just an adjustment that’s necessary Merl. I recall one of my MRI’s was extremely stressful as the Radiologist took months to give the final reading. My Neuologist didn’t know why it was taking so long and with some strong encouragement did reach out to ask. Apparently the Radiologist couldn’t read it because he had nothing to compare it to. So I went to the local hospital where I had been taken the evening I ruptured and ask for every image they had of me. They put them all on cd and I took those to the Neurologist. I asked him to send the MRI to my Neurosurgeon and let her read the images. I asked the hospital where the Neurosurgeon is located to send all the images (MRI/A’s, CTs and angiograms) to my Neurologist. Three things happened as a result - the Radiologist who couldn’t read the MRI done at that hospital changed his initial reading that didn’t even mention my coils, plagiarized most everything from the hospital I was in ICU at, my local hospital where I’d been going to for decades sent all their images including my mammograms to my Neurologist, and an agreement was made between myself and the Neurologist that I would continue to get MRI/As done at the hospital where my Neurosurgeon is located.

[ModSupport]

Ahh, yes, the old ‘left hand not speaking to the right hand’ trick. I’ve played those games before too.
My neuro is about 100km from here and the hospital is about 120km. The radiologist is more like 20km.

Here the specialists all have access to scans via the radiologist online platform. But for my own records, I want a copy. I want the report too. So, I wait. At times I’ve had the radiologist try to tell me the images were requested by — and will only be released to —. Nope, that’s about me and under FOI laws (Freedom of information) those records are mine. I won’t play their games.

Merl from the Modsupport Team

[Moltroub]

Had to look up km to miles . Fortunately my neurosurgeon is at the hospital where I get all my brain repairs done and their imaging is just across the street which is about 63 miles from us, so close to what your neuro is from you. The place where I had the bad experience with the Radiologist is a bit over 17 miles from us…so a bit over, but still close. BH will drive me the 63 miles as I cannot, especially if the sun isn’t high enough or it’s bad weather.

Here, patients have the right to all their medical information. We sign a release for other medical professionals to access them, even if they’ve ordered them apparently as I had to go down to the local hospital and sign a release for my Neurosurgeon, despite my signing “any and all medical professionals” on the release. The newbie in Radiology wouldn’t send them without her specific name and title. We had a discussion about what “any and all…” meant with her supervisor. Though I did thank her for following our HIPPA (Health Insurance Portability and Accountability Act) and rules.

[Janell]

Oh my gosh how absolutely terrifying to be pregnant and have a rupture! What a hero your daughter is! I’m so glad you’re here. My rupture was 9 years ago Jan 9th. The first year was awful for me. Any pain, any headache, i was sure was a sign something was wrong. It takes time to heal. Not only physically but emotionally. It honestly can be like ptsd. You can talk to friends and family but they won’t understand the way those if us who have been there will. We are all here for you. In the meantime be gentle with yourself and enjoy those sweet kiddos of yours~