My name is Hailee. I am 26 years old and I teach 3rd grade. I am still in the diagnosis seeking phase. I have had a deep low vibration/buzz on the right side of my head for 7 and half months which I now know is pulsatile tinnitus. I can turn it off by craning my neck, holding my breath, or pushing hard on the veins across my wrist. I have a headache that is getting more and more severe every day in the exact same two spots every day (base of my neck behind my ear and just above my temple near my eye) I also have a lot of pain in my ear. It feels like I have dove down into some deep water and my ears will pop every time I pull on them. My right eye will go through phases of twitching constantly. I also have different times when I will get tingling just on my right side by my eye, my nose or my lip. I am a very active person but I haven’t been able to truly workout since January because the workouts make the buzzing and headaches so much worse. When the buzzing first started happening I thought it was due to stress. I’m a teacher and I had a rough group of kids. I made an appointment with the massage therapist and a few appointments with my chiropractor to see if I could get any relief. After a month and a half the appointments were doing no good so I decided to stop . I made an appointment with my regular doctor she told me it sounded like it was stress and offered anti-anxiety medication. I told her I wasn’t interested and left feeling defeated and like everything was in my head. I decided to call a physical therapist and see if maybe I could go that route to try and get some relief. After month and a half of physical therapy there was still no relief and my anxiety was starting to rise. I made an appointment with an ENT and after five minutes she told me that I have TMJ and said that it should get better on its own with anti-inflammatory. Things weren’t getting better so I went back to my regular doctor. She decided to send me to a pain doctor. The pain doctor did some needling in my neck and the buzzing/whooshing was worse than it had ever been for a few days. After I finished physical therapy my physical therapist felt like I was having a lot of muscular issues and suggested seeing a spine specialist to check things out so I made an appointment with the spine specialist. The spine specialist or ordered an MRI of my neck and spine and the results came back unremarkable. He offered to do some injections or put me on gabapentin but said it really wouldn’t work. I left the office in tears. Upon leaving the office I decided to make an appointment with a different ENT. At this next appointment the ENT at least seemed very interested in what is going on and decided to do a temporal CT scan with contrast. The results came back showing that I had severely diminutive transverse sinuses on my right side. He was unsure what any of that meant so he sent me to a neurosurgeon. When I met with the neurosurgeon he told me that there was nothing he could do to help me but that he wanted to do an MRV to get a better look at things. When we got the results back from the MRV he called one of his friends that was a radiologist interventionist and got me an appointment the next day. My neuro surgeon told me that he thought I had pseudotumor cerebri and that he wanted to do a spinal tap but he also wanted someone else’s opinion. I met with the radiology interventionalist last week. He seemed very interested. He said he does not think that I have pseudotumor cerebri at all but that I may have a dural vascular fistula. He says that it is a possibility that it could have formed from a potential blood clot that went away on its own. I started birth-control last June and was training for a half marathon as well. He says there is a potential that I was very dehydrated and in conjunction with the birth-control it could’ve caused a blood clot that dissipated on it’s own but made room for the fistula to start. I am waiting for them to call me to schedule a CTA. This has been going on for such a long time that I am almost desperate for a diagnosis. It makes me feel a little bit crazy! I am supposed to have my CT scan sometime this week and I am praying that something comes up on it!
Welcome to the site Hailee, sounds like you’ve had a tough go of it seeking diagnosis. A wide range of experiences on this site, with a wide array of various AVMs. I personally had no symptoms, that I knew of, until mine AVM bleed last May. I do now realize I had some symptoms, and have become very in tune with what is going on between my ears! Seeking other opinions if uncertain is always a good thing as well. I look forward to hearing how your follow up goes and hopefully you can get a solid diagnosis soon. Take Care, John.
Hailee I feel your pain! Your story brought back so many memories of my “journey”. From the time I first experienced PT until surgery was over 5 years, many, many doctors and tests and so many different opinions of what was wrong. It took a bleed to finally be taken seriously and with one look, the neurosurgeon knew exactly what was wrong. Finally. What a relief! I get it, I live in a small town and most doctors here have no experience with this. I saw specialists in nearby towns as well with little result. It took the expertise of a top neurosurgeon in a large city hospital to recognize my symptoms. I owe him my life. So the moral of the story is “don’t give up”. You may have to travel to get the help you need. Keep seeking answers and second and third opinions. It shouldn’t have to be like that but you must advocate for yourself. Sounds like you’ve finally got on the right track now. Good luck to you and I hope you have a successful outcome.
Hi John! Thank you for your words of encouragement. I will keep you updated!
Hi Jenny! It’s strange how comforting it is to know that there are others who have experienced this type of thing. Thank you for your response. I will keep you updated!
@haileend
Hello and Welcome
I see you are in Idaho- I too have a DAVF but on my left side. I had a unrelated massive rare stroke in March of 2011 from 5 blood clots in my brain . I was in a coma for 5 days and had brain damage. In June I felt very strange and we estimate at that time from the pressure in my head due to the blood clots it blew out my left transverse sigmond vein. Then the DAVF started to grow. Same systems as yours. I was unable to sleep and was passing out. Mine was discovered in October, confirmed in Nov and scheduled for my first procedure in Jan -
It got worse in the few months waiting for my procedure.
You need to see a dr who specializes in these . My doctor is Dr Michael Marks at Stanford. He is the founder and head of Neuro Radiology at Stanford, Please contact them to see if he can see you. People come from all over the world to see him.
His nurse is Mary and tell them Angela Giannini referred you.
Do not work out to where your heart rate is increasing! I cant believe no doctor told you this.
I never had a CT Scan I had a MRA, & MRV. PLease contact Dr Marks!
Address: 213 Quarry Rd, Palo Alto, CA 94304
Phone: (650) â– â– â– â– â– â– â– â–
I am sending you a PM with my phone number
Hugs
Angela
Hi! I (25/F) also had a DAVF most likely caused by birth control pills. I feel horribly cheated that something i thought was safe caused this.
But now onto the good news. After two embolizations i am now pulsatile tinitus free and pretty much back to normal.
Its been a month since my last surgery and i’m waiting on an MRA result to tell me if everything is all good, for good.
I wish you good luck with yours and i’m here if you want to talk.
Nina
Hi Nina! Thank you so much for taking the time to respond! How long did it take you to get the actual diagnosis? What was the process you went through after you found out you actually had a davf?
Hi Hailee,
I had a dural cerebral AVF and it was successfully embolized in September of 2010. I had one follow up angiogram the following December but was subsequently released and declared AVF-free and haven’t been back to the doctor since! I just tested for my recommended black belt in Kempo karate and I am a regular at Rock Quest, a local rock climbing gym. So there is hope! While I did not have all of the symptoms you describe, I did have twitching in my left eye and also visual field deficits and tinnitus. That’s what led to the diagnosis. My doctors homed right on on the CT and MRI of the head and discovered the AVF the same day I went to my GP complaining of visual problems. My embolization was performed endoscopically. It took six hours.
Anyway, I am very interested in your diagnosis and treatment. Please keep me posted and feel free to ask me anything! Ih
All the best,
John
I had a subdural AVF that was diagnosed in 2015. I had no symptoms but my internist sent me to a neurologist because my knees were shaking when I was sitting. I had a series of MRIs with and without she over the prior couple of years on my spine and neck. The dr noticed a “spot” in my head which he monitored for about a year. It wasn’t changing, he sent me to Emory to see a neurosurgeon. He did further tests via an angiogram and determined it was an AVF. I went to their interventional radiologist who diagnosed it as a level 3 AVF, the most serious. I went back and he injected Onyx and said he got it all. Upon a 6-8 week followup angiogram, he found that it was growing back at about 20%. I went back to the neurosurgeon who did a craniotomy to remove it. I’ve had no further problems and he released me a few months later.
After talking to the surgeon, he asked me if I had any symptoms and I explained the whole knee shaking problem. That was unrelated and I still have that. Turns out I did have a symptom that I didn’t know was one. That was a whooshing noise in my ear, which was a blood flow noise. It is scary that there are really no symptoms, at least early on. The surgeon, who is an AVF expert said they really don’t know what causes them. Unlike an AVM, they form on their own.
I hope you can get this taken care of. Mine was severe enough that I would have had a major stroke in 3-5 years. So scary. God was watching over me.
My journey is a bit different from any of yours it seems. I noticed in March what I thought was a large vein in the back of my throat (been there for a few years) covered with a thin amount of tissue developing a weak spot so off to the doctor, who referred me to an ENT, CT scan run, they thought it was a medially deviated internal carotid artery. Referred to a specialist in Chicago in May since it took nearly 3 weeks to find a specialist that even took my Medicaid coverage in the first place. Another CT scan run for clearer pictures resulting in a hemangioma diagnosis in my tonsil (it had grown to the size and shape of a small raspberry dangling in my throat by then), then an MRI (which showed it a different size than the CT did) and also found a tiny tumor in my thyroid, then a CT-Angio last month to confirm the hemangioma size prior to surgery. THAT found the DAVF in my head, about 2" behind my right ear being fed off two major arteries and few smaller ones. Borden type 2, 2A. The symptoms I had prior to this I thought were from other things: migraine headaches which run in the family, constant variable tinnitus, low blood pressure causing dizziness.
Had my first embolization on Aug. 4th and told when I woke up “we didn’t get it all”. He used a catheter and the “surgical superglue” and I was put completely under, a small miracle since I’m anesthetic resistant. First hospitalization I’ve had in my entire life too. Now I have the whooshing sound even louder, problems with my balance, and a near constant mild headache that nothing will touch. I was supposed to go back next Tuesday for another embolization to finish closing off the DAVF but now that is on hold.
My insurance company is now refusing to pay for my entire hospitalization, embolization, CT-Angio…everything. Called it “elective surgery”. How is any form of brain surgery for this even remotely elective? Because it didn’t bleed first, causing a massive stroke or death? I was lucky they found it before it could do that AND I found a surgeon who took my insurance and had enough years of experience to know what he was doing (unlike most doctors I’m allowed to see with this insurance). Now this doctor and I are appealing that decision before we can proceed with the second embolization. I’m also under a deadline due to the hospital itself not taking my coverage after Sept. 3rd. There is no one else qualified to treat this anywhere in my state that will take Medicaid. I have no other insurance and can’t afford it anyway.
I’m feeling quite depressed as I type this knowing that I’m over a million dollars in debt, with only a little hope the insurance will relent and pay for this. And this DAVF could still bleed and possibly kill me. My niece is going to make me a great-aunt in December and I don’t know if I’ll even still be here or what condition I’ll be in.
Forgot to mention: I’m going to the University of Chicago Medical Center. Dr. Lee is my neurologist/surgeon and Dr. Awad has been helping him in my case. If the second embolization doesn’t do the job, Dr. Awad will be deciding if I need targeted radiation of full on craniotomy. Both have awards for excellance a yard long, and several decades of experience under their belts.
Wow Lori- I cant believe your insurance - Can someone at the hospital help you with your appeal? Standard of care sounds like is not being followed. I am so sorry you have this added stress- Keep us updated. Who the heck would want to elect to have an angio and embolism…
Sending positive thoughts
Hugs
Angela
Thanks Angela. I don’t have anyone here who really understands what it’s
like to have this condition. Nobody has even heard of it before so
explaining it has been hard sometimes. Only family that seems to care if I
live or die is my mom…and a few friends. My insurance, or should I call
it crapsurance, is Illinicare Medicaid (state of IL). My caseworker
sounded so unfeeling about the whole thing I just wanted to reach through
the phone and strangle her.
My doctors office called today to tell me their billing department screwed
up and used the wrong code. They are fighting with the insurance company
to get it all straightened out so I go in next Tuesday after all (leaving
at 4am to get there in time!). Third hole to be cut into my femoral artery
in a months time. Hope this embolization finishes it off this time so I can
get the hemangioma done too before the months out. Where they’re going to
find a place unbruised to put in IVs and all those other tubes with these
tricky veins of mine I have no idea. I never knew they put a line inside
an artery in your wrist to take your blood pressure during surgery. They
took so much blood while I was in the hospital my hematocrit dropped 4%,
which is a lot! I used to work in a plasma center so I know just how much
that is. Asked them twice if they were going to leave me any to work
with… I also really hope I don’t develop another one like a few
people in the forum have. Bad enough to have glaucoma/cataract surgery to
look forward to in the future. And staving off diabetes…I’m on the edge
and what did the hospital give me? Tons of glucose, giving me a blood
glucose level of 146 without having to eat anything. Haven’t had a reading
like that in 3 1/2 years, after I ate a plate of spaghetti.
Got a doctors excuse today to mail in for the jury duty notice I got 3 days
ago. With all this going on who has time for that? And with my asthma,
arthritis, disintegrating discs, hip dysplasia, and my brain problems who’d
want me on their jury anyway?
Copying this to the forum so other folks know what’s going on. There’s a
bit of hope yet for me.
Lori
They also gave me a lot of glucose so as a prediabetic I wasn’t happy about my BGL reading before I had dinner at the hospital: 146. Haven’t had a reading that high for 3 1/2 years after I’d had a plate of spaghetti and found out my system can’t handle it. Planning on reading them the riot act over that. NO glucose this time, I won’t need it. Plain ol’ saline will do to raise my blood pressure for them. And remind them I run on the low side, I’ve had a 90/50 several times in the past and I was barely awake. I know it drops a bit more when I’m sleeping. Their alarm went off when I dropped to 101/45, I was nearly asleep at the time.
Hailee,
Hi! Welcome to the forum!
I also have / had a dural AVF with what turned out to be a narrowing of my right transverse sinus, which my doctor concluded I had probably had a thrombus at some point and that had led to the development or aggravation of my DAVF. See my story here. You sound a bit similar to me.
I had an embolisation in April and I’m feeling better month by month (rather than day by day).
I found that cutting out stimulants (e.g. smoking, coffee/caffeine, chocolate,…) took the pressure off significantly, though my AVM was clearly busily growing or something over time.
Keep us posted as to how you get on!
Richard
It’s difficult to remember time scales. But ive been dealing with all this since October 2015 and have only finished with it this month. Appointments can take months on the NHS and the waiting was agony, just not knowing what was wrong with me. I do remember i was first diagnosed in December 2015 because i recall crying on christmas day because i had no idea what the medical talk in my letter meant!
I think if i can recall correctly my first surgery was around april/may 2016. I did have to wait a while. I had an MRI to first diagnose, then an Angiogram and then an embolization. And then unfortunately another angio and embo when the first one reopened.
Got my letter this week and i’m all clear now! It says no need to come back unless i get symptoms, and no sign of more fistulas!
Best wishes
Nina
I am so sorry you had to go through that twice but I am soooo glad they got it all! I think some of the reason why they went straight to surgery instead of trying a second and a third embolization is that the hospital stopped taking my medical coverage as of today. A second embolization wouldn’t have gotten all the small feeders and I have two arteries feeding into the one vein so very high risk it would have burst and bled within 3 months. The doctors wanted to make sure it was taken care of before the deadline AND before it could burst. I still have pulable tinnitus in my right ear and they’re going to look at that in a CT next month.
It’s been quite awhile since I’ve posted here but I thought I would shoot out an update. I ended up getting referred to a Dr at the University of Utah. Within 5 minutes of looking at scans that all of my other drs had access to, he noticed a blood clot in my left transverse sinus. I was diagnosed with secondary intercranial hypertension. I had a brain pressure of 345. I had a brain stent placed Thursday and I’m working on a gradual recovery. The pressure in my head has already alleviated. Thank you for all of the kind thoughts and experiences shared on here.
Hailee, it’s great to hear from you! How wonderful to have found the right doctor: it’s like that sometimes. You search and you search and there are no answers or solutions. And then you meet the right doctor and … everything turns around.
We’re so pleased that things are looking up for you now, and we’re glad that being here, with all of the thoughts and experiences that we share, helped.
Please stay with us to support and encourage others! That’s the best form of thanks that we can think of.
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