Glad to have found this group and have spent quite a bit of time reading others’ stories as well as all the encouraging follow ups and responses and feel like it has helped me cope a little bit.
I had what I thought at the time was a stroke back in October. I “passed out” and wet myself right after having some visual “aura” that I’ve had a few times that I can remember over the last 20 years and attributed to headache. Except my headaches were never anything so severe that I felt like I should see a doctor and a lot of my younger adult years were spent without health insurance and so, combined with a lot of health anxiety, I ignored it. (I ignored a lot of things over the years.)
Anyway, at the time I was home alone and managed to call my husband at work, who called my mother to come take me to the hospital because she was closer and could get to me quicker. At the time, I was confused and slurring my speech, I knew I’d been “out” but also was attempting to do neuro checks on myself (I’m a nurse, I think that might make all of this worse somehow.) My CT in the ER that day was clear — a nurse I have known for a long time and worked with before suggested I may have had a panic attack. I’ve had those before but never had one that made me lose consciousness and wet my pants. (Listen, I have to chuckle about some of this or I wouldn’t get anything done but worry.)
The ER suggested I follow up with a neurologist and at my Mom and husbands insistence, I made an appointment with one who ended up ordering an EEG and a MRI. Then he called me at home that evening and told me that the radiologist notified him of an AVM on my right occipital. At my follow up appointment with him he also discussed that it couldn’t be seen on the original CT and ALSO that he felt the “episode” I’d had that day was very likely a seizure and very likely caused by the AVM and ALSO that there was some “abnormality” on the EEG in my left temporal but that he couldn’t see a reason for that.
He then asked where I wanted to be referred. I’ve certainly never shopped for any kind of neuro care but had already decided on Cleveland Clinic if I had any sort of options for the singular reason that I have a relative who lives close by who could help with somewhere to stay if necessary and some sort of support for my family if necessary. I have an appointment with Dr. Bain in February. In the meantime I also have a CT with contrast scheduled this month. The neurologist also started me on Keppra. He seems okay enough but I think if a neurologist is going to be someone I see somewhat regularly, I will need to find a different person. When I asked him where he would go for care he basically said that AVMs aren’t something he sees a lot of so, he felt like Cleveland Clinic was a solid place to go because they get their referrals scheduled quickly. (?)
Yesterday I saw my NP who wasn’t my “regular” provider until I just told her she was, because I needed my antidepressants increased and I need a provider who knows what is going on in addition to just my general health. She drew every lab she could think of and was really helpful and made me feel more at ease. I’m really terrified, probably pre diabetic (at least) and probably have high cholesterol. Because I’m fat, I feel like I “deserve” all this and am afraid they won’t fix me. I know that’s not entirely rational, but since I’m being honest, there it is.
I’m trying to be positive most of the time and stay busy but I have a lot of moments where anxiety and fear of the unknown creeps in. I thought I was being dramatic until I saw the NP and she verified for me that this is a lot to handle.
Hi Jess. It doesn’t seem fair that we have to have some kind of event (mine was a bleed) to find out these things are in our heads. Co-incidently I’m heading to Cleveland tomorrow. I have my 6 months post cerebral angiogram with Dr Bain. If I check out ok, he says he’ll be done with me. So far I’ve liked him and his nurse. He saved me from a craniotomy. I wish you well with whatever needs done. Tip: my only complaint at Cleveland last time was them not being clear what needed done preop (Labs? EKG? Covid test?). Pin them down.
Welcome Jess, I can say for sure a lot of what you are feeling I have encountered. For me this was particularly the case with fear, and not knowing. It did subside with time, but it is a lot to handle. The waiting for appointments, and then the waiting for results. My AVM was found as a result of a bleed, and had no prior indication anything in their was amiss.
This forum was really important to me, and helped tremendously. I was fortunate that my wife was an NP, and understood better than other family and friends. Leaning on people here with so much experience and willingness to share what they encountered put me at ease often. My primary care NP was a fantastic lady and helped me tremendously, and while maybe a little influenced by my wife, would always go NP as option 1. She would actually listen. Take Care, John.
Welcome! Can I say this is normal, as far as I’m concerned, and trying to keep occupied is a good strategy. I discovered my AVM because I could hear it. I then self-diagnosed, courtesy of Dr Google and worried myself enough to go to the proper doctor and then had a bit of a melt-down once I got a formal diagnosis. We take our health for granted until this sort of thing happens and then reality comes into sharp focus.
However, I got through treatment nicely and it doesn’t necessarily mean that you’ll need the lid off and someone rummaging around inside your skull: depending on what you’ve got, where it is, etc, it may be that a less scary option is available. And anyway, there are literally hundreds of us here who can testify to getting through the ordeal well.
I feel like I can talk like a nurse to the NP and she doesn’t go over my head with things. I have been seeing her for a while just for my anti depressants but neglected my health otherwise. I guess now I will at least have a baseline to start from. I feel lucky that finding this wasn’t the result of a bleed but the seizure part was very scary and now I’m questioning one other time in my life (I was 16, am 42 now) when I thought I passed out but I guess it might have been a seizure. It’s all just a lot to take in.
Dick — I’ve been hearing my pulse in my head at times for a long time. I told myself it was stress. I’m keeping my fingers crossed that this doc doesn’t need to go rooting around inside my head.
‘Rummaging around’?? You sound like my mrs looking for something in MY shed
OR
Me trying to remember something “I know I left it in here (in my brain) somewhere. Trying to find it.”
There are a few other options, in many cases, before they need to go down the craniotomy route. As DickD states “…depending on what you’ve got, where it is, etc…” can play a huge role it what course of action that maybe recommended. Personally, I’d highly recommend you ‘try’ not to go too far into that anxiety and fear. I say ‘try’ because I know that’s not easy, but you can stress yourself out to the extreme with worry (That is, I did) or you can (again) ‘try’ to wait for the medicos to make a plan and take things one step at a time.
I say all of this because it was the exact opposite to what I did. I stressed out to the maximum, which stressed everybody else around me too. I mentally went down all of those ‘worst case scenarios’ and somewhere in amongst it all I too had that ‘I probably deserve it all anyway’ thought (Let’s just say I wasn’t a saint), so karma was coming back to bite me BIGTIME.
I’ve had to go down the neurosurgical route a few times, including a craniotomy, and before you go too much further I’d recommend you get some more information from a neurosurgeon, if only to establish your options. From there a decision can be made, but trying to work through it with only 1/2 of the information is not a good idea.
The pulsatile tinnitus was very much a rough “whoosh, whoosh” sound, like the washing machine on pump-out. I think it is more normal to hear a double thump-thump sound of your pulse on the pillow at night.
To discover/corroborate mine, my doctor simply plotted all over my head with his stethoscope. He found the loudest point was half way up the back of my head, slightly to the right, and that’s where it was: right occipital!
To be honest, it got quite loud over time and I managed to record it by simply pressing the microphone of my mobile phone to about the same point on the back of my head, though at some point my AVM/DAVF was busy back-inflating a bunch of veins on the outside of my skull, so I may have recorded the sound of the blood in those rather than something on the inside, I don’t know.
Anyway, it was enough to frighten the pants off me, so I went to see the doc!
I was operated on using an endovascular occlusion method, so no lid off for me.
My husband was hearing “breathing” in his head - for some time, but I hadn’t found the right thing on Google, and he hadn’t gone to the dr either. Glad you have found the problem and are going to be under doctor care. He also had the “headaches with aura” throughout the years never knowing what it was. Praying for you to find the right doctor for you, and answers that will lead to recovery!
Hi Jess. From reading your post I can relate to many of the things you’ve experienced. I suggest you google reviews of neurologists&hospitals they’re affiliated with where you live or are willing to commute to and see what they specialize in.
When I found out about my avm&was recommended to see a neurosurgeon I was told that having an embolization would be risky b/c of the size&location¬ to worry about it since I was young¬ at risk of bleeding…etc.
B/c of my anxiety which was not diagnosed at the time I continued to have seizures (not frequently, but in times of worry). To make a long story short I saw a great neurologist&neurosurgeon who did agree that embolization would be be risky, but recommended I go for outpatient gamma-knife which I agreed to.
Keep on doing things that will take your mind off things in times of worry, go for walks w/your spouse, friends, reading, etc&hopefully all will turn out fine at the end. Take care!
I saw Dr. Bain at the Cleveland Clinic yesterday and we scheduled angiogram and surgery today. He felt it is “best case scenario” basically for an AvM – close to the surface it looks like and it is small. So that’s good. And he discussed the onyx procedure and gamma knife but felt since mine looks easily accessible and small that surgery is the best option.
And I felt so good about it yesterday but of course when the nurse called to schedule it, I have kind of lost it a bit since then. I guess it is more real. On one positive note, he said it is likely the cause of the persistent back of the head headaches I have had for years. I thought they were stress related and a part of “being an adult” or some nonsense and the neurologist said they were probably unrelated to my AvM but I don’t think he paid great attention to me and I still need to find a new guy I think.
That is good news from the surgeon for sure. I imagine there will be a variety of emotions over the next while, and completely understandable. Take Care, John
Well. It’s over and done with, all of it, and I’ll hopefully go to the neuro step down unit tomorrow. Nerve wracking for sure but the angio wasn’t nearly as bad as my head made it out to be (through the wrist) and even surgical recovery seems to be going as well as it can. Im alive!
