Donna
I feel the same. The only thing is that my symptoms are much lighter than you describe. I only occasionally put a foot out to steady myself, not struggle to walk 4-6 days of the week! I think you’re brilliant just struggling on. As you say, it makes sense that there must be something driving it, which we would all think should be visible.
Lets stick together and see what works for you and what I find out about me.
Richard
Yes! Let’s definitely stick together and compare notes. Thank you for your support!
Just to clarify, I don’t want something wrong with me and I certainly don’t want to undergo any type of brain surgery procedure and I’ll do whatever I can to avoid that. I went from being a very active, busy person to overnight (literally) hardly being able to leave the house and now rarely by myself.
I do have something wrong with me and I want to fix it so I can get back to my normal life. I’m now realizing that I need to find a new normal. Which is hard to do if you don’t know what problem needs to be overcome so I can find a version of normal.
I am a very God loving person and I do believe there is a reason for everything. I know we don’t always know the plan but an occasional glimpse at the blueprint would be nice.
I can imagine God looking at my life 8 months ago and saying “oh girl…you need to slow down” and Shazam! I wake up dizzy and have to force myself to slow down and rely on others; as a wife and a mother that was a foreign concept (I’m used to being the mother and not being mothered). My family has been great and have never complained about picking up the slack.
I have found that I have an artistic side to me that I never knew existed. I started taking some on-line painting classes and I realized I’m pretty darn good. I’ve made some really beautiful pieces!
I do realize things could be worse…Much MUCH worse and I really am thankful that it isn’t. I just need to get over my pity party and keep putting one foot in front of the other and be ok with my steps not making a straight line. 
Well, out of adversity come some great things!
I’m having an interesting time. I have had my symptoms since my embolisation. Initially my view was “this cannot be what fixed feels like” but the doc was adamant that all looked ok and I should expect it to take some time to get used to the new pressures in my head. As I stand today, I have to say I’m better than I was pre op or for that matter post op. In October just gone I felt that rather than getting better month by month, I had slipped back. Then in Nov I had a pretty dizzy week and felt unsafe to drive. So I went back to the doc and the appointments I’ve had in March were as a result of going back in Nov.
I’ve had a week or two by now of still having my symptoms but for some reason feeling more positive about it all. The angiogram on 27th showed nothing significant and I had a confirming letter from the interventional radiologist that there was nothing to see, so take heart from that. Maybe I have done so, which is good. But I’m completely with you that you don’t get symptoms without a cause, so there must be something driving it.
I have to say I suspect a little something going on with either pressures playing upon some part of the balance mechanism in my ears or it being cerebellum related. I learnt the other day that there is a vein called the straight sinus that drains from the cerebellum and Vein of Galen area into the transverse sinus, then sigmoid sinus, past the ears and so on. My DAVF was in the area of my right transverse sinus so I’m wondering if there is some consequential connection or impact from mucking about with that upon the other veins or arteries thereabouts.
Rather than you not wanting to undergo more surgery, I have been keen, if there was something not too intrusive to do that I’d happily do it. The idea of a craniotomy for no big reason would not be right but a bit more glue in some necessary place would be fine by me. I’ve got through that fine once. I could do it again.
Reading your position and that of @TJ127 has been interesting as I feel I share much less onerous symptoms with you guys but am keen to share with you and see how our pooled experience with the doctors might inform each other.
So… Keep up your positivity as best you can, I’ll try to mention anything that happens to me and let’s see if there’s anything we can learn between us.
Very best wishes
Richard
Get yourself to a high volume center or hospital that specializes in these things. There are many on the east coast, but I’m not sure what’s on the west coast. I’ve heard UCSF is very good and they aren’t terribly far from you.
How do you find one? And the million dollar question, how do you get into one? My doctor wrote me a referral to Barrows in Phoenix but I’m having problems getting them to accept me as a patient. I think not having a solid diagnosis is part of the problem. There’s a lot of doctor chart notes that say the patient is complaining of dizziness but there’s no tests that point to a cause.
I guess that partially depends on your insurance. You’ll likely need a cerebral angiogram at some point for definite diagnosis. But don’t just have anyone do this. It’s invasive, and the doctor needs to know what they are doing, plus their skill level affects how well the angiogram is performed. After that, you can send those images to doctors in Phoenix or otherwise. In your area, University of Washington Medical Center seems to be rated well for neurosurgery. MRI or MRA doesn’t provide a clear enough picture of what’s happening, often times.
I have good insurance and I’m double covered And my insurance doesn’t require preapproval for referrals so I think I’m good there. University of Washington Medical Center is where I was yesterday and had my MRI & MRA. I saw an Otolaryngologist there who told me there wasn’t anything physically wrong with me and when I asked him if I should follow up with a neurologist he told me there would be no point since there’s nothing physically wrong with me. In order to get to a neurologist (and the right neurologist is important) I have to have a doctor’s referral. That’s why I had my primary care physician refer me to Barrows. It’s the only place I knew of that specialized in AVM’s. At this point, I don’t even know if the vascular formation in the cerebellum is the problem but the symptoms seem to be consistent with my ongoing problems.
The most important thing I can say to you is DO NOT GIVE UP. You know what’s wrong with you, the doctors are not in your body feeling what you’re feeling. Many times it can look like nothing is physical wrong with you when something is actually brewing. As an example that is not related to AVM but is related to being asymptomatic, I have actually been sick and gotten into the clinical prior to the “rails” needed to be heard to diagnois bronchintis have developed (the way your lungs sound). But they know me there and put me in an exam room to keep checking me periodically. About a hour later they started hearing the “rails” they needed to hear. We all knew it was coming, I just got there before it had fully developed. Which is proof that we know our bodies, after all, we live in them.
Do not let a doctor decline to give you a referral – I can tell you the majority of American insurances do not require referrals, the specialist may still require one from you to make an appointment. Always remember YOU are paying a doctor for a service. That service may very well be a referral to a different doctor of your choice.
Good luck! Keep us posted!
azurelle
Hi Richard!
You had a fistula, is that correct? How was it diagnosed? Is that something that could hide from an MRI or MRA?
Mine was diagnosed with cerebral angiogram. It was barely visible on mra, and not at all on mri.
I think “fistula” is just a specific term for an AVM, i.e. that it is a tangle of vessels, rather than a more straightforward “shunt” or direct connection from artery to vein. It was first detected because I could hear it. Then it was detected using a stethoscope. Then it was confirmed on an MRI which just showed white high-flow blood where it should have been lower flow veinous activity only.
Could it be missed on an MRI? I think so. Using an MRI to look for these things is like looking through fog or like looking at an ultrasound scan of a baby. Quite indistinct to my eyes, though obviously the professionals know better what they are looking at. The contrast views often help.
Both MRI’s I had showed the “vascular malformation in right cerebellum” but they’re still saying it was an incidental finding and not clinically significant, BUT I continue to have all these problems with dizziness and balance and I definitely hear the whooshing sound in my left ear. I can take my heart rate by listening to my ear. I’ve told that to every doctor I’ve been to and they push aside like it doesn’t mean anything. The doctors’s “fix” is to send me to vestibular therapy to work on my balance. I still feel like there’s something more that they’re not seeing or hasn’t showed up or hasn’t been seen by a professional who knows what to look for. I go back to my primary care doctor next week. I’m going to ask him to refer me to an Interventional Radiology Clinic. There’s one in the next building from where my doctor is. I strongly feel that they’re missing something. I don’t feel this lousy for no reason. It’s so maddening!!
I agree with you. If you’ve still got the drive to get to the bottom of it, go for it. I’ve had a couple of weeks when actually, I’ve felt pretty good. That has led me on to feeling like maybe I just need to be patient and my residual issues will go away but today and perhaps yesterday I’m more dizzy than I was and I feel more like there is something to sort out. It’s such a difficult thing to know what to do. You just have to follow your own drive.
Good advice! Thank you for your words of support.