Neurologist Advice

I need some help with a question for everyone about neurologists, with a little backstory. Okay okay… kinda rambling backstory.

I had a AVM resection craniotomy in October 2019 for an occipital AVM. Recovery was a little long- I was pretty much out of it until the end of February 2020. I went back to work for three weeks in March, and then into covid quarantine as of March 25, 2020. I’m only now going out into the world (I went into a bookstore last weekend. I haven’t been in a bookstore since before my surgery!) I finally got my second shot. So give or take, I’ve been at home for about 540 days. I know, I know… my timing really sucked for that craniotomy. As if there’s ever a good time. :wink:

When I left the hospital, my surgeon referred my case to a Neurologist. I didn’t choose him, he was just part of my care team. It was not a match made in heaven. He is elderly, not exactly “up” on current medical trends, and was unreachable most of the time, specially after quarantining started. I had a rough Spring and Summer last year because I didn’t have enough medications to deal with headaches and pain. He prescribed medications for seizures (I’ve had none before or after surgery, only the occasional phantom smells) and then left me dangling. I finally pinned him down, got him working WITH me to figure out pain management, and got him to understand I’m a smart cookie with a ton of research experience. I will research medications, ask questions, and demand intelligent answers.

But here’s the crux: HE’S RETIRING. I got a notice in the mail that he’s leaving and I’m supposed to find a new neurologist to take over. I was given a short list of three names to look over that are also from his neurology center. After researching those three a bit, none of them look promising. None of them list headache/pain management or aneurysms or AVMs in their interest fields.

SO here is my question finally! What are we supposed to be looking for in a neurologist? Is there a specific field? I thought I saw someone mention vascular neurologists but I honestly don’t remember if that’s right. Should their research/practice be specifically in AVMs or Headache/Migraine specialists?

My deficits are vision loss, memory problems, migraines/headaches. I do get tired out very easily still, and some times my gait is off.

Any advice you can give would be AWESOME. I live in MN so if there’s any neurologists known up here, feel free to offer up the name. I really am at a loss here as to what I’m supposed to be looking for.

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Hey K8te,
My name is Merl, I’m a member of the modsupport team here on Ben’s friends. I too have had a craniotomy along with a few other neurosurgeries. Here’s a bit of my experience in the ‘neuro world’:

Neurologists work on the theory of the brain. In really basic terms the theory is they operated, that’s corrected the issue. so there is no longer a physical issue with the brain. The brain itself has no pain receptors, it can’t feel pain. So it’s not the brain you can feel pounding.

Neurosurgeons surgically operate on the brain. If they can take a scan and see that there is an issue that can be surgically improved, then the neurosurgeon is the person to see. But often post surgery the opinion is ‘I operated, I fixed’. I was sent from neuropsychologists to dentists to physiologists to dietitians and everything in between, ‘Fixed’ isn’t quite the word I’d use.

I was then sent to a world renowned ‘Pain Clinic’. One of their things was ‘You’re addicted to the pain meds’, so I was trialled on all sorts of medications. It was not the medications that are the issue. I tried hypnotherapy, hydrotherapy, a TENS machine, acupuncture, manipulative physiotherapy and Bowen therapy. None of it worked. Then they came out with ‘Ohh you just have a low tolerance to pain…’ I have a low tolerance for know-it-all medicos. If they had to manage this for one day, just one single day, they have some idea of the realities of it all, but they never will.

My personal recommendation: Exhaust EVERY avenue open to you, someone may just have the ‘key’ you are searching for.
BUT
Go in with an open mind DO NOT be going in with any great expectations of obtaining answers. If the treatment plan works, that’s a HUGE bonus. But if you go, having an expectation of a cure and the ‘cure’ is not forthcoming it can be really soul destroying. I’ve had a neurologist profess to me he could ‘cure’ my headaches with Botox and because I’d heard of Botox as a treatment I decided to give it a go. I had a sexy wrinkle free neck, shoulders and face :wink: But it was not the miracle cure I was promised.

The closest I came to obtaining an ‘answer’ was from an ophthalmologist who fairly bluntly told me straight “Well, you’ve had brain surgery. What did you expect?” I didn’t expect THIS. My last neurosurgery, number 6, was back in 2013 and I still battle with all of those deficits you list today. I’ve learnt to manage the best way I can, be that rest, be that medication, be that meditation etc etc. Some days my symptoms are minimal and manageable. But some days it’s like “Stop the world, I want to get off this ride” and no 2 days are ever the same.

Merl from the Modsupport Team

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Merl,
Thank you for sharing your thoughts, but all I really wanted was some advice on what to look for in an neurologist. Is it pain/headache management experience we’re supposed to look for, or some one with experience with AVMs? Would a neurologist with specialties in aneurysms and stroke be okay if they are also vascular neurologists? Or would a general Neurologist be okay?

In short, what kind of neurologists generally work with AVM patients. I just want to know where to start, because there are many different specialties and kinds of Neurologists. Navigating all those specialities is tiring. And I wanted to know a place to start.

I very much understand the difference between a Neurosurgeon and a Neurologist, and what they do. I’m not looking for a be-all, end-all Magic drug. I am not expecting a “cure.” I’m on a pretty good med program now that is working- the typical good days-bad-days-but-mostly-good. I am pleased with my progress. What I am looking for is a good working relationship with my Doctor, and a good quality of life while I navigate the waters of life after a craniotomy/AVM resection.

@K8te Hello So I have 3 well actually 4 neuros if you count my marijuana dr. 1) So my avm neuro is the head and founder of neuro radiology at Stanford and he is older Here is the link so you can see what is exacting his titles etc Michael P. Marks, MD's Profile | Stanford Profiles

  • I personally dont want anyone young and inexperienced operating on my brain. I am worried like your dr that he is going to retire soon. If he does I will be flying to Arizona if I need surgery to go to Dr Michael Lawton who used to be in SF at UCSF.
    2)My Second neuro is head of stroke at Stanford and for some reason no one will do anything without his blessing…
    https://profiles.stanford.edu/neil-schwartz
  1. My third neuro who is see every 3 months or more is my pain neuro who is also an anesthesiologist and she is head of the headache pain clinic at Stanford. Meredith Barad, MD's Profile | Stanford Profiles
    So my neuros are no used to seeing people with pain - I also see a pain physio in the Stanford Pain clinic as well
    I saw a video with Dr Jay Joshi from the national pain center in IL say that in med school that they dont even a day of training on pain…so scary and sad…
    Hope this helps - You dont need to settle for just one -
    Hugs Angela
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Hey K8te,
After having a little think about your question here I do not believe there is a simple ‘one or the other’ sort of an answer here. Every medico I have seen has had their own opinion and when I say ‘every’ I’m including pcp through to surgeon. Personally, I think the relationship you have with the practitioner is very important. For example I had a pcp who made out he knew it all. In his opinion the surgeon had operated, the surgeon had fixed. So my pain was all a psychological thing. But upon having review with the surgeon he was furious as there was an issue which needed his intervention and according to the surgeon I should have been referred back to him as a priority. He recommended a change my pcp, which I have since done. My new pcp is much more open and freely admits he doesn’t ‘know-it-all’. If there’s a neuro question he’s more than willing to refer me onto a specialist. Because I’ve required multiple neurosurgeries he prefers to send me onto the neurosurgeon rather than a neurologist.

I have in the past been seen by a neurologist, but after years of misdirection and misdiagnosis, finally obtaining a definitive answer was a real ‘PHEW’ moment for me. Then the referral to the neurologists, for me, only served to confuse the whole situation. Some neurologists also have their own specialisations for example neuroradiologists or neurophysiology etc. As I’m fairly limited by location obtaining an appointment with a neuro-specialist (other than a neurologist or neurosurgeon) is difficult, although many neurologists say they cover the whole field anyway. It is my understanding that if you have access to a vascular neurologist they would certainly have experience with AVM’s, but there’s nothing to say that a neurologist wouldn’t have similar experience.

It really can be a case of ‘Hit or Miss’ with some neuro’s. If you find one you have a good rapport with and that you trust, then grab a hold and don’t let them go, because finding a good one can sometimes be very difficult.

Merl from the Modsupport Team

Thanks Angela, that was a really helpful overview of who you see and what they do. It gave me a starting place. :slight_smile:

I’ve narrowed it down to three Docs here where I live in Minneapolis. One a vascular neurologist; one a generalist that comes with a great recommendation from another AVM support group I belong to locally; and last a neurologist that specializes in headache/pain management here at Mayo. I think my chances are good with these three.

I understand what you said about neuros not understanding pain. I some times think my retiring neuro is clueless to the different kinds of pain we experience- from actual skull bone knitting back together, to the migraines and headaches, to just the every day ooompf tiredness we experience. That’s not even covering the vision issues, or speech problems, regaining walking or using our limbs. No wonder we see so many different kinds of Docs! >.<

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@K8te That is great you have narrowed it down tothree different neuros - I really like my pain neuro and she even now sees my little sister who has migraines and she almost died from the flesh eating virus. She also starting to see my mom after she had spinal surgery for a rare tarlov cyst and they didnt listen to us that she would get really nausea from surgery and to give her something stronger than zofran so she was throwing up after spinal surgery but had to lay flat- they think from twisting that it caused some nerve damage in her head so she gets occipital nerve shots that have been helping. She does seem to understand that my pain is different than my moms but cant seem to get it that it all made my migraines worse and the frequency more. I was super lucky with my neuros but it has taken me a time to build the rest of my medical team. I treat it like any other business if I am not happy I fire them - I am fortunate that I live in the Bay area and have two great teaching hospitals to choose from - I have had some weirdos one ent who my primary sent me to when I had lost my voice when my reg ent couldnt get me in right away asked me if I was wearing corsett? Then asked when I had my last child? I am thin and have a flat stomach what those things have to do with no voice I have no idea…he did not want to scope me or take a swab…nor give me antibotics…when I finally got into to see my reg ENT I still had no voice and he did scope me and take a swab and turns out I had a staph infection and another weird wheat bacteria and needed to be on bed rest for two weeks and strong antibotics…I told my primary never to send anyone to him again! Sometimes I feel like we are teaching the drs - Good luck with your picks and keep us updated-
Angela

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Hi K8te,

I was kind of in the same boat as you. I was assigned a neurologist after my first seizure. He was not great, but I never had any health problems before that so I didn’t know what to ask or how to make sure he was the right neurologist for me. He refused to have a neurosurgeon look over my case officially. He would claim that he spoke to them in passing about my avm, that my horrible headaches could be fixed by taking a few supplements, and finally that an angiogram was unnecessary for understanding my avm, I started the search for a new neurologist.

For me, I spoke to my GP and told him how I was treated by my neurologist as well as his refusal to get a second opinion from a neurosurgeon. I am very lucky that my GP took this seriously and helped search for a neurologist that had some experience with avms as well as brain trauma. I would definitely suggest speaking to your GP, if you have one, who could look over your medical record and is aware of your medical problems and can make suggestions on which neurologist would work for you. In addition, definitely look around and speak to different neurologists. Don’t stick with the first one you meet. Also, make sure you prepare a list of questions you make have.

I hope this helps!

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This is for you K8te:
I had my whole story typed out for you, but it disappeared, so here is the short version. I have been in 3 states, seen 4 doctors, had cyber-knife radiation treatment that did not shrink it. Doctors could not agree on whether my “episodes” were mini-seizures or mini strokes. I now live in TN and and just had more MRI’s and saw a neurosurgeon who put me on anti-seizure medicine to see if that will stop my “episodes” which consist of my left side of my face, left arm going numb and slurred speech. It doesn’t last long. We discussed the possibility of more radiation, he has to check the records from NC to see how much was given. Evidently there is a limit to how much your brain can take. I was hoping since it has been 16 years since my treatment in NC that we could try more radiation and see if it can shrink so I could possibly have it operated on. I researched by looking for doctors whose specialty is BRAIN AVM’s. It came down to here at Vanderbilt or the Cleveland clinic which is close to you. I make appointments and have discussions with the doctors and see if they appear to really care about my situation and show they are willing to have my care number 1. Do some researching, but you are close to Cleveland Clinic, so I would start there. Hope this helps and good luck. Just remember you are hiring them to do a job, so make sure YOU feel comfortable they are there and want to help YOU!

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Very helpful, thank you! I love my GP- she found the AVM originally. She’s a stubborn bulldog when things arise, and will figure things out. I was having issues with my neck swelling up, and right side numbness. She had ordered a CT neck scan, and just a little slice of the AVM showed up. She called me the same day, and ordered me in for a MRI the next morning. As you can tell, she doesn’t waste time. Lol. I’ll give her a call, see what she thinks, and if she has recommendations. Excellent idea, thank you!

EDIT Addon: can’t believe the cojones on that first neuro who thought you didn’t need to consult with a neurosurgeon. What a quack. Glad you had that GP in your corner.

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Q, good advice on Cleveland Clinic. Not sure I want to go down there quite yet. Thank you. :slightly_smiling_face:

Did they ever figure out the numbness? I still am getting right side (left side AVM) numbness, usually my face, arm, hands. It can be weird and painful. But always annoying as all get out. My current Neuro thinks its mini seizures. And upped my meds this week. >.<. I’m curious what your Docs came up with.

This struck a chord with me. I’d never had serious issues before this either. Headaches sure, every once in awhile. But no hospital stays, no seizures, certainly never had a migraine. I do not always know what questions to ask, or what to look for in care, but I’m learning very quickly, on the fly. :slight_smile:

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Hi,

The memory loss gets better over time, mine did, it’s early. Don’t over analyze, choose a neurologist that you feel comfortable talking to. The headaches can also be vascular too… Mine were vascular, after sex for example or types of exercise because of the rush. See all three if you like and pick the one you like talking to the most. Us AVM survivors like to talk. :slightly_smiling_face:

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Hi K8te
I just saw my new Doctor this week and he put me on Levetiracetam 500mg 1 2 times a day. It has to be taken at the exact same time every day. It is a 3 month trial on this medicine. I did have 2 “episodes” today, but in fairness to the medicine it is too early to say it is or is not working. We definitely need to stay in touch with each other to see how it goes and compare meds. It appears we have the same problem, just on opposite sides of our brains. Picking the right doctor is always hard. Hope to talk again soon.

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It can get so frustrating at times, but you have to stay positive and keep trying. You are your own best advocate for your care. I keep trying. So many doctors with different ideas out there. Hope we find the right one soon.

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Heya Q!
Nice to see your sunny voice. Some how I missed your last check in note about the Levetiracetam, but got a ping about your post today. Go figure.

How is the Levetiracetam going? That is one of the ones that did not work for me. It’s turned me into a sleepless mess, and I still had the headaches. What does seem to be working is Gabapentin. There is a trade off tho. No headaches, but I still get neural fatigue. But my mood is good. And I’m finally getting into a regular sleep schedule with the help of melatonin. The mela. was a big surprise- I’d heard of it all these years but always thought it was a hokey weird herbal thing. Turns out it works wonders for me.

Unfortunately I am still getting the right side numbness. I actually had an MRI on Thursday this week. They’re going to start looking at my neck (cervical spine) and see if there’s some thing up there with the nerves/spine/vascular. I hope it gets figured out soon. Nothing like walking around with half your face numbed out. Novocain has nothing on me!

But how are you doing? How’s the head? Any relief lately? Enjoying the summer?

I know this isn’t exactly helpful, but stuff like this is why I stay as close as possible to Barrow Neurological Institute now. . . I don’t know what made me so lucky to wind up in here in the first place.

But, these guys are top notch & I have a feeling I should stay within their vicinity for life.

They don’t mess around - it’s a one stop neurological shop. I’ve heard real good info on Mayo & a few other places also.

But, it’s all area specific. . . I remember when I was in ICU, I’ve heard a few patients say they had to make a move closer to their facility due to the frequency of them having to be admitted.

Try your best to look around where are you located.

My BMI folk, I wouldn’t trade in for the world.

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Hi K8te:

Good morning, the Keppra turned me into a raving maniac and a horrible “B”. I felt so sorry for my husband. They weaned me off it after 1 month and said they couldn’t do anything else for me without another angiogram (which I had just had 2 months ago). They are sending me to a neurologist now. I have been on Gabapentin

For about a year, but it was prescribed for the pain in my hip (which has just been replaced for the third time in 16 years) and my shoulder that was replaced after 3 surgeries on it before the replacement. So we will see what happens in my next appointment. We shall keep on plugging along. Have a great day.

QHraiser (Quarter Horse raiser lol) Need to change that since I am unable to do that now.

Q, Sounds familiar. Keppra did nothing. But the one that turned me into a raving nut was Topiramate. Oh my… it was so bad. I felt so jittery I was ready to jump out of my skin, and then just flat out insomniac. I think I was on it about a month before I begged them to let me taper down and off.

Seriously, find a good neuro team, and stick to them like glue. I’ve heard of Barrow, they’re supposed to be phenomenal.

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