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AVM Survivors Network

Is it worth seeing a neurologist


#1

I had my avm surgically removed via craniotomy last March. I’m doing pretty well, but still have issues with balance, headaches and being “lightheaded”.
It seems that many of you are seeing a neurologist. I have not been followed by one and after the six month angio the neurosurgeon is out of the picture.
Would it make sense for me to see a neurologist? Could they help with my issues or do I just wait and hope things improve on their own?
Thanks


#2

I have one more appointment with my neurologist after my next CT angiogram if nothing’s changed I’m pretty much done seeing her; she hasn’t been able to help with the lightheadedness and the balance issues, I’m pretty much seeing her for my partial simple seizures I get occasionally; there isn’t much she can do for the other stuff but I would think it’s worth seeing a neurologist to get an opinion to see if they actually can do something for your issues.


#3

The only thing you will miss out on by seeing a neurologist is the money you will have to spend. What harm could come from a professional except for your wallet. I still see many different doctors, especially the mental ones, because I’m not an expert and they can usually help. A wiseman always seeks advice from others more knowledgeable than himself. I always have felt that I became better on my own but I’m not an expert. The experts say it was the therapy. Yes I did a lot of therapy because the experts said it would help and listening to wise counsel can’t hurt, it’s just words.


#4

A couple of thoughts to throw in the mix…

I am currently seeing a neurologist. So far, the meds that he has prescribed for my headaches have changed the headaches - but have not come anywhere near solving them. It’s sort of like, using a baseball analogy, I was standing out in left field and now I’m standing in right field. A different view, a different place but I’m still in the outfield.

The neurologist that I’m seeing is the one who wanted to do Botox even though it can cause difficulty swallowing - to a guy who only has one functional vocal cord. He also wanted to prescribe a new drug that has no history older than 2 years and hasn’t been prescribed for the type of headaches I have. Will I continue to see him? Unless we go to the other side of the state, he’s the doctor with the best reputation for headaches. And he’s the one monitoring my amitriptyline and propranolol, and my attorney said that it is crucial while appealing disability benefits to go to every doctor’s appt and so, I go.

For balance, the neuro doc has done nothing. However, my ENT doc was able to find people in the hospitals PT group who were therapists who specialized in vestibular rehab. We just finished approximately 3 months worth of pretty much once a week appts and it was all focused on getting the vestibular balance working again. I would say that they took me from a failing grade to about a 75% score. Can I walk down steps without a railing? Very very carefully. Can I walk the “you’ve had too much to drink” line? No, I’d probably still fail it. Are there times where my body wants to turn around farther than I do? Yes. Are there times where I have to consciously tell my right leg what to do? Yes.

Is it complete? Nope, not a chance. But they got me to the point that my balance was no longer a huge impact on my life from a quality of life standpoint.

So my recommendation - don’t look to a neuro doc to solve the balance issues, look for vestibular rehab therapists.

And that, along with $1.75 adjusted for inflation, will get you a cup of coffee…

TJ


#5

TJ – before botox what about a muscle relaxant? they work the same way only differently, they impact how your muscles work but instead of freezing them for up to 90 days they relax them for 8-12 hours. Much fewer side effects for a much smaller amount of time.

Just a thought, I’m coming at this from 30+ years of neurologically complicated migraines, feel free to reach out to me for more headache info and ideas.

azurelle


#6

Hi, Cancard,

I had a crani over 25 yrs. ago for a ruptured cerebellar AVM. I experienced many of the same things you describe, and more. I’d say you are very early in your recovery, judging by my own experience. I think it wise to maintain a relationship with your neurologist for a little more time…maybe the interval between visits can increase, if things are stable. I still have balance problems, “lightheadedness”, and migraine headaches. Still, most of these have eased up, I have adapted, and learned to cope better. (The migraines…not so much!). I, like TJ127, cannot walk a straight line, but I can hula dance! In fact, I credit hula for improvement in my balance and movement.

Thanks for reaching out,
Lifeisgood


#7

I have had all sorts of issues, with balance and headaches etc. Even though i’m still wating for surgery, I have been getting help from the community rehab team. It is my understanding that every area has one of these, they have been very helpful. I am surprised this has not been mentioned. But worth a try. Best of luck…
Mick


#8

If I might chime in, a neuropsychologist may be helpful here. Based on what you’ve described, a neuropsychologist can help you acclimate to the new normal. Blessings!


#9

The rehab team comprise of a neuropsychologist and a physiotheropist, They visited together at first to evaluate, then both turn up on different days every week. As I say for me they have been a great help…
Mick


#10

That does sound ideal,but I don’t believe we have anything like that here. I live in a fairly small town.


#11

I am thinking I’ll try and find someone to see. i feel like I’ve been “dropped” by the medical community. A got a little bit of physical therapy after the surgery and have had to muddle along on my own for the last ten months. I’d just like to be sure I’ve done everything I can before I settle in a and accept my “new normal”. I think I need it for my own peace of mind


#12

If you’ve had the AVM removed it couldn’t hurt to still see a neurologist if you still have even mild symptoms. I still see mine because my AVM/Anuerysm is still active and I’m on medication.