GP's and AVM....:(

What is it with GP’s and AVMs. Having suffered with my speech and headaches over the weekend, woke up this morning very disorientated, severe headache and very nausious. I could not get out of bed and was quite alarmed at the pain. When the DR came out, he suggested that I might have been dehydrated, causing my symptoms, despite me explaining about the AVM. He said if it gets worse, he will come back. I am worried if it gets worse, he won’t have to come back, as it will be a ride to hospital. I think there should be more awareness about AVMs and how they affect people…
Mick

Mickeboy, so common to hear that, which is unfortunate. I was so lucky in who I dealt with, primary care was a nurse practitioner who is off the charts good, and the neuro surgery department who completely get it. My drs were great but hats off to the nurse who really took care of my overall health, if she didn’t know. no pretending. A medical person who says I’m not sure but will find out builds my confidence to no end. I agree in the education side, need a chapter in the medical books! Take Care, John.

I’ve been told, if I drink enough water to make me wee every ten minute, I will feel better in no time… :frowning:

One doctor told me to get a pedicure and I’d feel better about myself; another told my husband to take me out on the town and have fun and try to forget about my “symptoms”. These doctors got paid by the Medical System for their learned opinions! Scary…

This makes me so angry. I had to get a new PC a year ago and she would not even talk about finding someone to follow me, said my last embolization was long enough ago that I didn’t need to worry - even though I still have symptoms. I have decided to find a new PC.

I can’t say enough how happy I am with a nurse practitioner for my primary care provider! I had hernia causing grief, boom referral to the surgeon. Who fixed three…and then next visit was back to the NP. I have a full physical coming up with her, anything beyond her scope and its a referral, and she follows up. No getting run through the spin cycle and bounced around all over the place! I am really happy with the way this works for me. I wish there were more NPs available for people who are numbers to the big machine.

I have to agree. My pc didn’t even ask how I was doing at my annual physical, six months post craniotomy and hydrocephalus. When I brought up my issues she also seemed uninterested. I was never followed by a neurologist and now at one year post I still have a bunch of little issues that I would like answers to. I called the nurse practitioner for my neurosurgeon and she is referring me to someone. She’s been fantastic. Now I’ll have to travel two hours to see this neurologist, but maybe that’s for the best since he’s at a major teaching hospital and is an expert in balance and vertigo which are my biggest issues.

Be wary of the old “vertigo” diagnosis. Trouble with balance? Must be vertigo. Dizziness? Must be vertigo. Do these exercises and it will be better. Not so. Finally referred back to my neurosurgeon and his quick diagnosis was a blocked artery which was restricting blood flow and it was backing up. Like shooting a hose thru a pinhole was his analogy. He inserted a stent to open the artery and problem solved. All those recommended exercises would have made it worse.

That’s a good point, and why I am going to the head of the balance and dizziness (vestibular) department. My avm was on the cerebellum which is rare. That area of the brain manages balance and coordination. The most common symptom of a stroke in the cerebellum is vertigo. So it’s very possible it is due to the avm surgery, but I want to be sure that’s what it is and not something else. Also, is there anything I can do about it. So frustrating that I haven’t been followed adequately so far and I have had to find this guy on my own. Hoping for some answers

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Hey Cancrd,
Best of luck in obtaining the answers you are searching for
BUT
I’d recommend you do not go into this with any great expectations. If you get the answers you seek, fantastic. But if you don’t it can be rather soul destroying. I say this because I too went looking for answers for my ongoing symptoms and every medico I saw had a differing opinion. The closest I came to an ‘answer’ was from the ophthalmologist “…well, you’ve had brain surgery. What do you expect?..”

It was explained to me that our brains are the body’s computer system. If we were to open up our computer box and throw in a handful of aluminium foil flakes, there would be short circuits over all parts of the system. Neurosurgery does exactly the same thing. No two brains are wired exactly the same way and no two injuries are exactly the same, add the two together and no two outcomes are going to be exactly the same either.

I do hope that they maybe able to give you some strategies to be able to manage a bit better, but please do not go in hoping for some miracle cure, because when the say ‘No, there is no such thing’ it can be rather devastating. I say this as initially I had high expectations only to come crashing back to earth with a thud.

As for the follow up, sorry, but I’m not surprised. I had issues and hunted for answers with no joy. In the end I gave up and simply ignored and minimised symptoms, to my own detriment as it has turned out. I went to an appointment a few weeks back only to be told I need further surgery, so around we go again.

Merl from the Moderator Support Team

I’m so sorry to hear that you need more surgery. That’s my worst nightmare.
Believe me my expectations are low. I’m mostly hoping to put the little voices in my head to rest. The one that keeps saying”maybe there is some therapy or something”. And the other one that says “ is this it or is there more recovery coming my way” and finally the one that says “ seems unlikely, but maybe I have some kind of inner ear issue”.
I’ve been dragging my feet to see anyone and I think it’s the fear of hearing that this is it and I’ve got to learn to live with it. But , then I’ll know and can start to move on to the next step of finding some strategies and accepting this rotten thing that happened to me.
I’ve been getting some counseling and she’s been encouraging me to do it. I suspect for a little closure.
Best of luck going forward. I hope your surgery and recovery go well
Carol

Hey Carol,
This surgical ‘nightmare’ (as you call it and I concur) started for me in '96. Prior to that I still had the nightmare but it was more a disbelief by medical professionals that there was an issue, then when they finally admitted I wasn’t crazy and there was an issue the surgical rollercoaster started and in 96 I had 2 surgeries. I was then told ‘All fixed’ only things weren’t fixed at all. I learnt to manage the best way I could forced myself along. Then 10 years later I had another ‘little blip’ on the radar requiring more surgery, but recovered from that, not too badly.

Then come along 2013, ohh dear, that was a bad year for me. I ended up requiring 3 operations that year and that REALLY screwed me up and I’ve been unable to work since. None have been ‘easy’ to deal with psychologically nor physically. For the psych side, initially I took the typical caveman male view ie I man, I strong (Ha, who was I kidding), but eventually I had to admit I needed help. I had to see a counsellor.

Neurosurgery is very isolating, there aren’t many people (thank god) who have to go through this, so talking about it all can be really foreign, others outside this reality honestly have no clue and I needed help to do it all. I will say each surgery has been a little easier than the last, but none of them have been simple to accept. If you can identify that you need assistance, then GET IT. Get the assistance you need, I only wish I could have seen it sooner. I made this journey a whole lot harder for myself (and ultimately my family) than it needed to be by not seeing it sooner.

As for the physical side, I didn’t do myself many favours their either. I pushed too hard too soon and did myself more harm than good. I’d had surgeries before and treated neurosurgery the same, it’s not. This is not like a broken bone where 8weeks later and it’s all healed. This is a L.O.N.G term recovery and it takes patience and time. The reality for me is that I’ve basically been in recovery since '96, no sooner have I adapted and moved on than I come crashing back to earth.

Some people talk of ‘acceptance’ and that’s been one of my biggest obstacles. I don’t want to accept ‘this’ is as good as it gets, but what I have learnt is that I need to be grateful for ‘this’ because tomorrow I may need further surgery. Each surgery has knocked me harder and harder, so be thankful for what I can do today, because in the blink of an eye I could easily lose it all. It’s a reality no one ever wants to have to face, but the reality is we have no choice in the matter, we have to accept or we stagnate and that’s no good for anyone.

Merl from the Moderator Support Team

A little update about my dizziness. I saw the specialist yesterday and left there feeling pretty encouraged. He thinks there is still time for improvement and feels some specialized vestibular physical therapy would help. He was very clear and concise with his explanations and seemed to really listen to me. So although he is two hours away it seemed worth the visit. He was also clear that I will have some deficits due to the brain surgery, but at least now I feel like I will have tried everything.
Carol

Unfortunately this is the harsh reality and most GP’s dont know much about them and the odd few do have some knowledge… keep in mind they are rare and only i am starting to see now so many more are discovered as the years go by, which is the growth in technology… God bless!

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