Right parietal/occipital lobe AVM- not one doc has talked about options- only epilepsy meds?

My husband had 2 seizures, 6 weeks apart 5 years ago. Was told he had an AVM and here’s epilepsy meds. He learned to adjust to the new meds (took awhile) and became less afraid of the weird sensations like wet washrag being pulled over his feet, electricity pulsing moving up and down his side, etc. Things were good. In April we had a bad snowstorm with snow coming straight at the windshield. He got dizzy and had to pull the car over. Waited an hour, got to work, got a horrible headache and had to go home for the day, From then on its been pulsing/wave headaches and extreme photosensitivity. June on it’s been spike headaches, about 6 per hour, with some spikes so bad it causes nausea. About 4 weeks ago he got a terrible headache that lasted over a day. Hes never had a migraine before. Now the past weeks its continuation of the wave headaches, nausea and the feeling of dizzy with his eyes rapidly moving side to side (but they are physically moving). We had an EEG and it sys its not epilepsy related, but they didn’t give any ideas of what it could be or what to do next.

My question is, I don’t see posts about this type of stuff on here, It seems like people are told surgery options right away??? Our neros haven’t even suggested anything about it. I’m assuming because of the area its in- that’s where the all the commotion is coming from. Should the doctor be scanning for a bleed? Doing SOMETHING? We are getting frustrated. Does anyone have any stories like this?

Hey Dani
My name is Merl and I’m a member of the modsupport team here on Ben’s Friends and I too am a neuro patient. “I don’t see posts about this type of stuff on here” there are some similar posts on the boards, finding them, it maybe easier to use the search feature (The magnifying glass, top right) and search for specific keywords.

“Does anyone have any stories like this?” Ohh yea. I’m sorry to say it like this but it’s not uncommon. Some medicos work on a ‘Need-to-know’ basis and just because we’re the patient doesn’t mean we need to know (well, that’s their view). The medical idea is often that the less the patient knows, the less the patient stresses, but for me personally this couldn’t be further from reality. I too was given very scant information upon my first appointment and was basically told ‘Just go home and don’t worry about it’. I have something growing in my brain but go home and don’t worry??? OMG, my stress level which let’s just say were maxed out prior to the appointment anyway, went into overdrive and he says “DON’T WORRY!!! What planet is this man on??? TOO LATE”. I couldn’t just sit and wait, so I went looking for answers. It took me 4 neuros to find one I was comfortable with and was prepared to answer my 100’s of questions.

You state this occurred 5yrs ago, has your husband had any scans or tests since? Has he had any recent follow up with a neurologist or a neurosurgeon? Now, I have to say here some neuros have specializations and although some may profess to ‘know-it-all’ when it comes to avm’s it can be highly beneficial to find a neuro who has a knowledge of such things. I’m in Australia, so my knowledge of the American systems is minimal, for this reason I’d recommend you make contact with an organization such as Brain Injury Association of America | BIAA (biausa.org) I understand that they maybe the wrong organization for you and your husband specifically, but it may give you somewhere to start asking questions ie ‘If you are the wrong people, then who can I contact about this, who are the right people. Who would have experience in managing AVM’s?’
Many of these organizations network with each other, so although BIAA is a brain injury organization, they would have their own contacts in other areas of neurology/the brain.

Headaches? When I saw my first neurosurgeon he asked if I had experienced headaches, ‘Yea sure, I get headaches…’ doesn’t everyone? Then they operated…WOW, just WOW, I have never had pain like it. Some people are of the thinking that all pain is the same, I used to be one of them. Many years ago I had a compound fracture of my leg, bone sticking out of the skin, very painful. But the headaches…just unbelievable. I don’t just get headaches, I get ‘explosions of agony, sent from the gates of hell’. That word ‘headache’ that’s way to simple. I have a whole new scale of pain. When you break your leg, it affects your leg. Hospital, operation, plaster, 6-8weeks later and it’s all healed and life goes on. When it’s your head it affects EVERYTHING, 6-8months later and it can still be affecting everything. My idea was operate, recuperate, all fixed and back to work. Only that wasn’t quite how it worked for me.

That frustration can be soul destroying, especially when the medicos make the whole process even harder. My advice, research what services maybe available to you. I notice that you are in Madison, but you may need to look a little further a field to find a specific Dr with the knowledge in managing AVMs. Like I say it took me 4 neuros before I found an appropriate Dr.

This neuro journey is not easy, we know this because we’ve lived it too. So come talk to us.

Merl from the Modsupport Team

Thank you for your reply. I appreciate it very much. This is his first eeg since 5 years ago. He has not had any other scans since everything was “fine” with meds. He sees a neuro every year but its mainly to make sure his lamictal levels are okay. His new doctor has been a neuro for 21 years, so i cant belive he wouldnt have dealt with avms before, but you know what they say about assuming. He has to go give blood tonight and he’ll be asking if theres a next step. I mean, he SHOULD be getting a ct for a bleed, right? Everything went haywire the day of that snowstorm. Either that, or it was a bleed that coincided with that day. I would think theyd want to check that. Silly me!

Yes, I’d want an MRI or CT to check what’s going on.

What I’m thinking is that if your husband’s AVM is in a very critical part of the brain, very difficult to operate on successfully, the main option 5 years ago was very much as you’ve been given: use medication to manage the epilepsy risk and carry on. However, if he’s getting bleeds, the game changes and I think you need someone to have a look at what’s going on to see if the balance of do something v do nothing still plays out the same way.

Very best wishes,

Richard

Thank you for the advice. I called the nero today, got his nurse. Asked him what his next move was and if our doctor had experience with AVM. I said they hadn’t called us back yet after the EEG. She asked me where I saw te AVM reference since it’s not on his chart. It’s in his test results. i told her where, She didn’t know what I was talking about and had to ask the doctor. Next thing we know we’ve got a request for an MRI on his MYCHART. What the heck… My mind is nuts and angry and crying right now.

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And i looked at all of his after visit summeries., NOTHING about visiting a Neurosurgeon.

It is so common to run into communication challenges with the medical world, I like to think it is because they are dealing with so much/many. That is not an excuse on their behalf, it shouldn’t happen. I kept a file of completely everything, test results, requisitions etc and I prepared before any appointments, and then I confirmed follow up. I had no idea to do this off the start but my wife, who is a nurse, basically said that in that world you have to be your own advocate. Now US is a little different from Canada, but I think it was completely necessary. I can only pass along the advice I got, and what I did. Like I said I would never have thought it necessary, but it certainly was.

I hope the MRI proves useful, and it would seem you have caused them to take notice. Stay at it! Take Care, John.

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JD!12- I would like to think that too, but the brain is kind of a big deal. Once again it proves that even doctors are oh too human. I’m not blaming this new doc directly yet, though. The original doctor went on to “further her career” and we got a letter saying this guy is in network to take you as a patient. It’s the original ones fault for not making any notes in his files that he has this and that they thought it was to blame for the seizures. Hope she furthers her career with more personal commitment to her new clients.

Meanwhile, MRI time I guess. Im making sure this is approved with my insurance before we make the appt. I trust them even less than I do his old neuro! Go figure.

Im just so tapped from finding this out. I can’t imagine how my husband is feeling.

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Frustrating for sure! We sometimes encounter those in the field that are marvellously unencumbered by humility, which leads to a little less engagement and caring than we would like! Hopefully the new Dr. is switched on. Take Care, John.

Well, we got the doc to listen- sort of. He put up the MRI as stated, only to cancel it 11 days later stating "he believes the insurance won’t cover it if he doesn’t have a “peer to peer”. Thing is I called the approval hotline and he never actually called to see if it could be approved. I called his nurse and she told him that. He stood strong, without admitting he didn’t call, and won’t give us the MRI until he sees us. He just saw him in May and had the EEG in August. We have to wait until NOV 14 to see him and then another 6-8 for an MRI. The only reason it’s that date is because my husband had a standing appt, otherwise it would be FEB! I called their Customer Care line and made a complaint about the whole situation on how I believe that the original doctors lack of detail has put us in this situation of “wait in line like you’ve never been diagnosed” and that we can’t get him the care he needs. Doubt anything will happen, but I feel better saying something. It STILL isn’t mentioned in his chart that he has this. Another nurse hinted to me other doctors who could order an MRI. I was lucky enough to find a scheduler who thought this was crazy and made an appt for us the next day to see what that doctor can do. This doctor has the ability to request an MRI, just at more of a Family Doctor level. He saw him in April for what he thought was ear related, but the visit summary states he had no ear problems. Hopefully this can get us a little more- somewhere.

Covid has turned a busy system into a horrid system. If they thought people would die from Covid and should stay home, what about the effect when people are now trying to get in and now they are 6 months out? What about the people dying during this wait time? You don’t see any Government trying to get more staff to get patients thru the overwhelmed system now, do you. Sorry, ranting. Just so frustrated.

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So, you’ve got him scheduled for MRI with a different doc? Good.

I’m not sure it is any consolation but the impact of backlogs from covid, from the UK isolating itself from Europe and probably from doctors deciding to retire post covid, we have a health system over here that feels fit to break, even before the winter comes in :scream:

We have a friend in Germany who was just telling us the same thing- doctors quitting and the backlog. It’s a mess everywhere, I know. But it only helps so much.

It’s really hitting home right now how having a temperamental AVM is more rare than I knew. I knew it was unusual, but it seems suddenly worse when no one will listen to you. I feel so much for all of you on this site. What a terrible burden to bear. Hopefully this guy tonight will help us. Only other thing left is I’m told to go to the ER where they have to give you an MRI. Only thing is, will the insurance approve it. I can’t get him in to another Neuro until Dec 12th. Fingers crossed

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My general practitioner sent me to the ER at one point when I was waiting to see a neuro. The guy in ER was quite unimpressed and sent me home (but if your husband ever has symptoms that are urgent, important, always go to the ER: they’ll be happy with that) and I had to wait a further 4 months for my operation. I made it but it was a scary ride.

I’m glad you made it AND you help others. I appreciate it.

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No go. This guy was great, explained every reason, every detail that our neuro wouldn’t. He told us straight forward “Until you have another worst headache of your life or lose conciousness, insurance will not allow the MRI to be moved up further until you see the neurologist again. Peer to peer”. Atleast he was honest. Doesn’t help us, but he was honest. We are supposed to go to him for every new problem or worsening problem so he can document it for the Neuro, that way if he feels this is worsening he can move up the appt or MRI. He is our go between. Atleast we have a better idea. “We can’t care unless you are literally dying” Sad system.

This is exactly what I went through.

The good thing is that you’ve got someone medical who is there to understand and to raise the flag if it needs raising. In my local general practice there are at least half a dozen doctors and when you ring up to be seen, you can either say “I’d like to see Dr X” to be told they’re not at work today, or you just go with the merry-go-round of different doctors.

By virtue of the merry-go-round, I got to see most of them and I worked out which one was worth seeing! She clearly didn’t understand AVMs any more than any of the others but her interest was sufficiently piqued to find out and to be proactive with me. So when I went in, she had read my notes from previous visits, knew what my recent worries were and acted accordingly.

Suffice to say that my AVM was in the back of my head, just below mid way just right of centre and it was pumping blood into my veins at such a rate that despite being inside my cranium, it was inflating the veins on the outside of my head at the same part. On one of the last times I saw this GP prior to my operation, I told her I was getting increasingly dizzy and the veins on the outside of my head increasingly sore. She used her stethoscope to plot over the area and concluded that I had a much larger area of those external veins affected than previously: something like a 1" × 2" strip vertically down the right side of my head. She agreed to write to the hospital / neurosurgery practice.

I saw her again perhaps a week later. She said " Did you hear anything?"

“Oh, yes. I’ve got a date of 3rd April!”

“I thought so!” she said, grinning like the Cheshire cat.

Clearly she had been monitoring the progress of my AVM through the notes and that examination and was of a similar opinion to me that it was developing somewhat, so stuck a rocket up the neurosurgery team. It’d be good to see that letter!

So, very much the same. ER were very much “You’re not acute” back in the November “so go home”. They honestly were not interested unless, as you say, you’ve got the worst ever headache and/or you’re already lying on the floor. And in the UK, that was because there is a certain capacity/money to undertake surgery and more needy patients were ahead of me in the queue. The part the GP helped me with was to be my advocate that I was needing to be near the front of that queue.

I think it is very good if you’ve got someone to turn to to help you get a dispassionate assessment. And if anything significant ever happens, just go straight to ER. Do not pass Go. Do not collect $200.

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Im sorry you’ve had to go thru the same thing, but it does give us hope.

Do you know of anyone getting the dizzy spells, spike headaches and nausea and it NOT being something wrong or a progreesion? We just dont know if this is a permanent feature with nothing ever progressing…or what. Im sure everyones case is different.

I think the only rule I can give you is, if something sudden happens, go to ER. If you’ve got something progressing, nag the neuro team like crazy and/or get your general practitioner to assess and do some of the nagging. But you need a GP who is interested, motivated to help you.

In your case, use the man you have to move things forwards.

Yes, me. Daily.
I’ve required a few neurosurgeries (6 so far) and I have what I call ‘oddball symptoms’ everyday. For example, the phone rings, I go to stand to answer it. I get dizzy. If I don’t wait for a bit for it to ‘normalize’ the dizzys turn into wobblies with a sudden OMG headache and I find myself collapsed on the floor. I get these tingles down one side, initially I thought I was having a stroke On one occasion, my wife found me on the floor and called an ambulance. They shot me off to the hospital with lights and sirens. The hospital did their scans and sent me home. But by the same accord I’ve gone to hospital, they’ve done a scan and they decided to keep me in. For me I’ve found that a headache, well, that’s normal. Dizzys, that’s not unusual for me and neither is the nausea. But if that progresses to vomiting I need to act. Now, these are my signs of a greater issue. I am yet to hear of 2 patients having exactly the same signs, exactly the same symptoms and it has taken me years to establish what is a ‘normal’ symptom (as if any of it is normal) and what is an ACT NOW symptom. Over time your husband will also work out his own ‘New Normal’ vs ACT NOW.

As I’ve often said to others "Some medicos use the ‘A+B=C’ theory, so symptom ‘A’ plus symptom ‘B’ equals diagnosis ‘C’, but when it comes to the brain that A+B=C is way too simple. For me it’s rather A+B-CxD/E√F… and everyone of them is variable. Trying to quantify for all patients, across the board, is near on impossible, but I must agree with @DickD

Merl from the Modsupport Team

6 surgeries? Ouch. You are a strong willed person. We can’t even get in for an MRI let alone a consultation for a surgery to know what’s possible. So basically, if it’s above and beyond the current level of suckiness, go to ER. Got it. It would have been nice to know that his headache in June, the one that lasted a day and half, could have been a small bleed, but the doctors tell you nothing. They gave us a pamphlet on Epilepsy years ago and that was it. Nothing to watch for if the beast turns on us.

We just got a rejection letting from the insurance company because since the original doctor didn’t put that he had an AVM in his charts, we were rejected because the MRI “wasn’t medically necessary”. Super. My Husband is becoming depressed and we both are just exhausted. Our kids first day of school (13 & 15) started today, so I had all that prep going on with them during these struggles and it’s just overload. But like I told my kids when dad had his first seizure, “Life doesn’t stop just because we are sad. We have to keep going.”

My husband is working but not really acknowledging having to make more doctor appointments now. Or that the GP wanted his BP taken from home for a week. Or that he should be low-carbing to lose a little weight for his knees. He’s on auto-pilot and I’m left to run this show. ARGH! It would help if he’d try a little, like he wants to live, but I guess he is trying if he goes to work? Maybe his brain can only do that right now. I’m the type who is like,“Okay! This is what we gotta do!” and makes a list of steps and gets on it. He’s an ostrich.

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