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AVM Survivors Network

GP's that don't know what an AVM is


#1

I have just been to my GP, regarding my treatment for my AVM. In June I had a seizure, was rushed to hospital, where I had a CAT scan. For a few days I struggled with speech, my eyesight was affected, especially by light. I had trouble with balance and feelings of nausea and severe head aches. After spending time in hospital, for what I was told, was an AVM that had bled, was finally discharged with a bag full of meds. Despite receiving care at home, over a couple of months suffered 3 further collapses. After a cerebral angiogram, was diagnosed with an AVM in the left partial lobe and what they thought was a bleed, actually turned out to be an aneurysm. communication between the hospital and my GP has been terrible, where I have had letters, my doctor did not receive. I have been told my condition is inoperable, but now my GP has heard it did not bleed, thinks a lot of my symptoms are because I may be depressed. Stating some people don’t know they have an AVM and are fine. I’m so confused by this, as I only found out I had an AVM when I had a seizure and have suffered since. I am awaiting to see a neurosurgeon who is going to work out a management plan with me. I’m just wondering if my GP actually knows what an AVM is. Has anyone else had any similar problems…??
Mick


#2

I’ve had completely mixed responses.

One doctor (comes across as) hasn’t a clue and just refers me to hospital. One doctor has made it her business to take an interest and has been absolutely great. And a junior doctor I saw was completely intrigued: I had an audible bruit so she asked if I would mind her having a listen to it, clearly determined to learn. Apparently it was a textbook bruit.

So they vary completely, even within a practice. I think the majority of it is the GP’s self motivation to understand a rare condition (and I would think give them a real break from the monotony of usual stuff) versus having a long day, an awkward patient in the queue before you and all of the other human distractions we all have. I made two obvious mistakes at work today – neither of any consequence – but a clear signal that I was not doing a thorough job to my usual standard.

The other thing I’ve found is a tendency, nay a determination, to ascribe symptoms to something more common. 90% of the time, guessing at the more common ailment gives the right answer and trying to persuade the doc you might be one of the 10% or 1% or 0.0001% gets more difficult.

… in my view…


#3

Given that AVM is a rare condition whose symptoms mimic other diseases such as MS, Lupus and others, it’s not surprising that it can be misdiagnosed or plainly not recognized by a GP. who may never have come across another patient with AVM in many years of practice. I was very fortunate in that my GP sent me the very next day after I had an emergency appointment with her because my physiotherapist recognized that I was in crisis after I fell twice in front of him, to a neurologist in another city. He gave me a 90-minute examination and questioning, got me a CT scan within 2 days and an MRI in another two days when the scan was inconclusive. I was diagnosed with a tumour on my spine because my spinal cord was protruding through my vertebrae. I went into surgery for a dye angiogram and came round being told I’d had an AVF which had been treated by embolization. I was totally incontinent, couldn’t move my legs without help, hallucinating from the morphine but so grateful not to have cancer and to have three Bandaids rather than stitches and facing chemo or radiation. I was told that I’d had a particularly rare form of AVM. Yes, apparently people can go through their entire lives without any problems from AVMs which are formed in utero. I have done my own research and have gotten more information on this site than from all the hours I spent on the Internet looking for answers. In Canada GPs get to spend 10 minutes only with each patient and one complaint only at each visit. That doesn’t allow time for needed research. I’m just so grateful that my doctor was so well connected to a neurological specialist who’d been in practice for decades. Even he was not able to diagnose the AVF. The neurological surgeons were the ones who made the correct diagnosis through a dye angiogram and went ahead and treated it.


#4

Doctors can just be a roll of the dice. (Just because they went to medical school - doesn’t mean they graduated in the top of their class:). We were lucky, in that my granddaughter’s pediatrician would not prescribe meds for what we felt were hormonal migraines WITHOUT doing a brain MRI (or CT - can’t remember for sure). That is when her AVM was discovered at the age of 14. Knowledge is power and as long as you research medical sites (Mayo Clinic and others), do NOT be afraid to ask questions and listen to that gut feeling. Sites like this one, give insight to real people going through similar circumstances - which is very helpful. Example: Recently my granddaughter has had break through seizures and as they kept upping her meds, she started experiencing facial numbness. We felt it was due to the med dosage being too high as they were upping it weekly. That symptom is NOT listed as a side effect of the drug. But after checking that symptom through an internet search engine, we discovered that many people were experiencing that symptom. The doctor was called and told that we were reducing her mg as she was not tolerating it well. He completely agreed. After 2 ER visits in 10 days - I would have thought he would have been calling us. :woman_shrugging:t3: We are checking out other doctors. But that’s ok. We’ll find the doctor that feels right.


#5

@Mickeboy wow I am so sorry. Your GP does sound terrible. Even if you did not have a bleed you can still have symptoms from an AVM. I was just at my pain neuros office who has been with me post AVM - brought in a fellow and another pain neuro to share my rare stroke and my AVM/DAVF and yet another rare thing we are working on.
now in the past my primary has been great but the last few years years has blown me off when I asked her to fill out paper work etc and missed my husbands COPD even though he has been complaining for 3 yeaa rs and I had him see my ENT who sent him to a lung dr right away.
Go with your gut and get a new one.
I just told my pain neuro some info about recent weight and hair loss and she is sent my primary a note and that was a few days ago and I still have yet to hear from my primary and my neuro advice is to find a new primary.
we have enough to worry about than managing our drs
I just met with an allergy dr where my pain dr both at Stanford - wanted me allergy tested since I had a bad reaction to a shot she gave me-
another pain dr wanted her to also test me for a drug he wants to use.
the allergy dr doesnt want to test me for the drug because its a heavy duty drug and I could tell by her face she was uncomfortable, but she instead said it would be very rare for me to have a reaction the first time I had a drug…I said I just got through telling you this JUST Happened!
I made another appt with a different dr- I can tell we are not going to click.
She also never called me to scheduled testing and my pain dr did get back to her so unprofessional.
Hugs
Angela


#6

Thanks for the message Danielle, think a change of doctor is my next move…
Mick…


#7

Thanks Angela, was just telling Danielle, thing a change of doctor is needed…
Mick…


#8

Boy! Scarey, but true. My AVM bleed and same day, emergency craniotomy was +25 years ago. Many doctors and nurses would give me that puzzled look when I would explain. But, up until that point, I had not known. (And, I was a critical care R.N.). With AVMs being more frequently diagnosed, one would think most doctors would be more attuned. SEIZURES are the #1 sign of cerebral AVMs. My AVM was cerebellar…no seizures. But, the suddenness of my headache, and my age (39), had my doctor sending me to have a CT scan then an angiogram! Surgery immediately followed. A sudden headache is one of the hallmarks of a stroke, and that’s what an AVM bleed is…a hemorrhagic stroke! It demands investigation.


#9

Hi Mick, doctors don’t know everything about every part of the body. And they do make mistakes.

I would advise getting at least a second opinion even if you have to pay out of pocket as I did. If you’re bored read my story in my profile. The short version is this: I was in a head-on collision resulting in a lot of injuries including trauma to my head and brain. Once up and around I underwent some therapy and quite a few tests that included an MRI. The doctors reviewed my MRI images and determined all was fine.

I wanted a second opinion for no other reason than piece of mind-it’s my head after all! The second doctors found the AVM the first ones missed. So get another opinion.

All of us here have been where you are right now in some form or another. Keep us apprised and reach out anytime. We’re here to help.

Bill


#10

Thanks Bill, will check out your profile. Will keep site updated.
Many Thanks
Mick


#11

I too had a problem with my doctor telling me I had an inoperable avm. I suffered terrible headaches and anxiety for 5 years. My daughter finally convinced me to get a second opinion, including a new mri. SO GLAD I DID! I had a different neurosurgeon read my new mri results and told me the first dr. was mistaken in his readings. It WAS operable, but the biggest surprise of all was that my body had ‘self-healed’ by cutting off the blood supply to my avm. The new mri showed a ‘ghost’ of the former rather large avm, just a shadow of where it had been before. I thank God for this miracle, but my message to you is to get a second mri and a second opinion from a DIFFERENT neurologist. Maybe it is operable after all?


#12

Thanks Janet,
Will be my next move, thanks for your support…
Mick


#13

Unfortunately not many unskilled professionals can recommend appropriate action. Second opinions are vital.


#14

I’m sorry you’re having these issues. Having an AVM and/or aneurysm is harsh enough itself.

Not to worry, that Angio will depict everything and then some.
It’s the gold standard for diagnosis, measurement, and to see if something even has a slow bleed.

From one left parietal survivor to another, hang in there. Like Cookster said above, never worry about getting that second opinion. This can help you see how a surgeon’s plan of attack sounds to you and how comfortable you may be working with that person.

Take care,
Sincerely,
Dick


#15

Thanks very much for your reply. Will keep everybody informed what’s going on. really appreciate the reply…
Mick


#16

Hi, Mikeboy,
Dick and the others have the best advice. Seek a second opinion. It’s YOUR life. You need to feel that your doctor is interested and competent. And, if you haven’t had an angiogram, ask about it. As Dick says, it is the gold standard for diagnosing AVMs. I wish you the best in your personal journey. We are here for you.
:heart:


#17

I’ve had an Angiogram, after CAT scans revealed the AVM. That is when they found the Aneurysm. After first being told I would be sent to Sheffield for Gamma Knife, after a review of the Angiogram, it was decided that it was inoperable. The referral that has taken so long is the one to the Neurosurgeon, to discuss a management plan and to work out any future surgery or treatment. The delay has left me feeling insecure about my future, scared, upset and anxious. To top things off, the Doctors and my GP, don’t really seem that bothered. I wonder sometimes, is it me, am I over reacting. Or am I the victim here…


#18

Mick,

It’s a little confusing. I’m assuming you’re saying your AVM is inoperable, but then you go on to say that the referral you’re waiting for is for a combination of management plan and/or treatment. So I’m assuming that since you’ve got two things going on – the AVM and the aneurysm – the AVM is inoperable but maybe the aneurysm is operable.

In this case, I can see that you’d be keen to understand the possibilities for the aneurysm and it ought to be somewhere on a neurovascular specialist’s list of things to do.

On the other hand, if both are inoperable, it is more a matter of working through a “management plan” (and I assume that means how we help you to lower your risk, plus how we get you into a better “mental” space, i.e. how to cope with the threat that you’ve got. I am inclined to think that if it is about a management plan only, they will not rush out to book an appointment to see you if my neurosurgeon is anything to go by. He is a very pragmatic fellow whose view of the world is that he will fix things that are physically wrong with me that he can see on a scan. If there’s nothing physically that he can do to fix it (or it’s so bloody small you can’t see it on a scan) then he’s not the slightest bit interested.

So. You obviously need the referral to go through and it is worth chasing that to make sure it gets there.

Then there are two strands: any possible surgery (which you’ll need to rely on the neurosurgeon / interventional radiologist to advise on); and a “management plan” and how to cope.

All of this will take time but in terms of “how to cope” I do think that is a question you could take up with your GP. In one of the conversations, we’ve talked about Cognitive Behaviour Therapy and that may have a role. Equally, there are some sensible self-help things you can do to lessen your risk of a bleed. This boils down to reducing your blood pressure / avoiding spikes (I think) and the advice I was given was to avoid stimulants of all kinds. e.g. not to smoke, not to drink alcohol, no chocolate, no coffee / caffeine and things like that.

Does any of this help?

There are a number of people here with untreated AVMs and often combination AVM and aneurysm, just like you, or where the AVM has been partly treated but there is a residual risk. All of these folk have the same concern as you, that their overall stroke risk is higher than average and somehow need to carry on through life.

Hope some of these thoughts help. Do explain further what appears to be operable and what not, if that would help us help you in the right things.

Very best wishes

Richard


#19

Sorry Richard, it is a management plan I am waiting for. I thought or hoped is a better word, that I could be fixed at some stage…
Mick


#20

Ok. Well that helps a lot.

I think that’s why they are being so slow / uninterested. It still feels worth pushing to get that appointment through but it may be equally worth a chat with your GP as to what services there are that would best help you to cope with your diagnosis. CBT may be a good start and doing the self-help stuff is definitely good.

I’m feeling a bit jaded myself at the moment, overweight, unmotivated and struggling to concentrate in some ways at work. I’ve taken the bold step of discussing that with my boss (but only after I’ve determined a bit of a plan myself). Obviously, when you talk to work about this sort of thing, itscquite worrying. Will it affect my prospects long term? Will I get sidelined or shuffled off? That sort of thing.

When I talked to him, we touched on a few things like: we have support services as part of work, consider talking to them. Maybe you should talk to your GP. Maybe I should refer you to occupational health. And I thought, if I go to the GP, what would I be looking for? Honestly I don’t know. What do I think he would say to me? “How are you eating?” “How are you exercising?”

So I thought what I need to do is sort out some of the basics – get some exercise and eat sensibly. Some of the challenge of that is fitting it all into the day (and getting permission to be missing from home actually: that’s a big one chez nous). So I’ve agreed at work that I’m going to significantly reduce my hours and get some “me” time into the day. Get some exercise and get on top of some of the things at home that never get done. By this means I’m hoping to make steps to feeling better. Indeed I do feel better. I’m taking baby steps but I’m keeping it up. I need to keep keeping it up.

I’m quite sure my GP would have said nothing to start with than about what I’m actually doing towards my health. Some very basic things. The very best medicine can be the simplest things that we know we should do. It’s just a matter of starting.

I’m not saying you’re in as simple a position as me. I’m just trying to say that the apparently simple things like CBT and the things your GP is suggesting do have a place.

Hope it helps. Equally happy to shut up if I’m not really helping. I’m only ever here to help.

Best

Richard