So I’m just wondering if anyone has read the book “finding balance” by sue hickey?
I have only just started it but she says on the cover that it covers her journey battling vestibular disorders ( hydrops, bppv and perilymph fistula.)
She doesn’t mention MAV at all (I scanned the book) yet in chapter one she describes her visual migraines and chronic headaches with the dizziness!
She also describes a week long headache followed by positional vertigo that is diagnosed as a “hydrops event.”
I’m looking forward to reading it and I by no means know her whole story. It’s great someone published their experience to increase awareness of vestibular disorders. I just started reading her diagnosis then second guessing mine lol!
Just curious if anyone has read it?
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Yes I have read it, and honestly I would NOT recommend it. I may have/had a fistula that healed plus MAV, and her story is incredibly depressing. I agree with you- throughout the book she talks about classic MAV symptoms that didn’t respond to treatment (fistula surgeries, diuretics, epleys, etc.). In the end she basically resigns herself that this is how she is going to be forever and understandably so. It is confusing because in the book she says she is going to get a second opinion but never does- not even for her surgeries. Her dr. wasted YEARS of her life doing pointless bedrest when all along he discovered at least one of her fistulas never healed. The fact that this dr. who is supposedly famous missed her MAV diagnosis is criminal. I hope for her sake she did get another opinion and at least tried MAV meds. Sorry I am really passionate about her story- but honestly unless you want to be incredibly depressed, I would NOT read it. I actually threw my copy out after and was pissed I read it because it made me even more depressed.
Was MAV not recognized at that time- I don’t even know how old the diagnosis is? I just find it strange that she never got a 2nd opinion in the entire time of the book- years…Her dr. literally wasted years of her life with this supposed bed rest which likely doesn’t even work. Later in the book one of her fistulas supposedly “re-opened” when she moved a dresser so her dr. decided to do surgery. He went in and found this genetic defect that probably prevented it from ever healing in the first place…so yea. I hope for her sake she has gotten other opinions- its hard to say what role her other issues played but she for sure had MAV. It is probably the most depressing thing that someone with balance issues can read- not really what I was looking for.
Yeah I’m not sure how old the diagnosis is but it’s seriously bad!
Second chapter she says she takes in all her main symptoms to specialist and they are - " headaches, vision problems including light sensitivity and scotoma that block patches of vision. She then says on bad days the room may spin or move back and fourth.
She then has tests and they say they can’t categorise her into one vestibular disorder and mention everything but MAV! They mention CFS also and bed rest and she is overjoyed by their wisdom.
I can’t find a date! This has to be 20 years ago surely. Or actually… Maybe not!
I think she said it all started for her in 1998??? At one point in the book she was doing bed rest for her fistulas and she started having headaches, and her dr. thought this was a sign that her fistulas reopened…um no!!! At the end of the book she is basically still left with hydrops that supposedly won’t respond to treatment, BPPV that supposedly won’t respond to treatment, mal de barquement after riding in a car, and “crowd motion sickness” where she gets sick from being with too many people. These can all be migraine symptoms- her dr. really let her down- I hope that she did get a 2nd and a 3rd opinion.
Its like I understand her wanting to publish that and raise awareness of vestibular problems but at the same time she really isn’t doing patients any favors or instilling any sort of hope in anything. In another part of the book she writes about meeting another lady with a fistula, and she says something like the other lady “still believes she can get better with treatment- I didn’t have the heart to tell her that that is not the case.” So for someone reading that who thinks they have a fistula, they will be soul crushed by that statement. The reality is I do think there are people who get better with treatment for fistulas (especially if they only have 1)- but this lady never got better because a great chunk of her problem- migraine- was never treated. So the average person reading this is going to think there is no hope for them… so again, this lady isn’t really doing readers any favors. There is no message of hope for getting better- just of acceptance- which is BEYOND disheartening of course to read. I actually threw my copy out and was pisssed I bought it.
I forgot we already talked about that earlier. This book just really got me riled up as I likely have/had a fistula along with MAV- I suspect I had a fistula that healed but now bc of the MAV I am not compensating for the damage.