Iatrogenic cause--what's that??? Biopsy put a HOLE in my artery!!

[Barbara Toman]

Hi! My name is Barbara Toman and I am 57 years old. I have pulsatile tinnitus due to a DIRECT HOLE that was put in my vertebral artery at the base of my skull. The Methodist Hospital in Houston, Texas told me that I had a 4 cm tumor in my upper cervical spine in 1990. They said I would DIE or be a quadriplegic in six months. This story is VERY long--soooo long--but for sake of reading--I will significantly shorten it. The biopsy put a DIRECT HOLE in the vertebral artery right outside the skull at the base. But, NO one knew--or NO one told me--I did NOT have a tumor--they thought it was an AVM--put me in hospital to repair the AVM--but catheter arteriogram showed all I had was an occluded left internal jugular vein and this "tumor" was really a group of collateral circulation veins working FOR or IN PLACE of the blocked jugular vein. BUT, they wanted to keep on scanning in A LOT!! I switch hospitals to UT Hermann cause by 1995 I was TERRIBLY DIZZY!!!!! And, after 18 months of going from doc to doc to doc--someone suggested I had MS---I found the top MS doc--he did another brain/neck scan and found that I had had a STROKE!!! So, for SIXTEEN YEARS I BELIEVED THAT I HAD A STROKE AT AGE 37 that caused me to be dizzy--why?? The "vascular malformation was causing vascular steal. Fast forward to 2010--I end up with pulsatile tinnitus --TWO different qualities of PT--one that is a clear whoosh to the beat of my heart--and the other is like that of crickets/locust to the beat of my heart----I ended up having another catheter arteriogram and Dr. Michel Mawad (excellent) found a direct HOLE in my vertebral caused by that biopsy and I have a base skull Arteriovenous fistula on the left. And, on the right I have a severely stenosed right internal jugular vein. Its been a LONG road---very LONG--I am a strong believer in God and I trust Him to give me the strength to carry on--I am NOT repairing the fistula for now. I have been SO many places--and have seen LOTS of top docs---NYU, Mayo Clinic, UT, Baylor, Beth Israel, etc. So glad to meet others!! Whoosh whoosh....

 

[Barbara Toman]

wait---forgot to define iatrogenic---it means doctor-generated---so basically goof-ups.... lol

 

[Karen]

Hi, Barbara,

My goodness; what a story! You have really been through a lot, but I'm glad you've finally gotten some answers.

Was Dr. Mawad (the last doctor you saw) also practicing at a hospital in Texas? He sounds like a very good doctor, who really worked hard to help you find out what was wrong. That's a wonderful thing! I don't blame you for not wanting to repair the fistula right now. As long as your problems are not life-threatening, I'm sure it won't do any harm to wait awhile before you decide what, if anything, to do about the fistula. Did I understand that you did not really have a stroke, that instead, the dizziness was caused by the vascular problem?

I can certainly sympathize with the "whooshing"; I'm a whooser, too. Except --- I haven't found any answers yet as to the cause of my pulsating.

Thanks for telling your story, and welcome to Tinnitus Talk! Please keep us posted on how you are doing and what you decide to do about any repairs.

 

[Barbara Toman]

Yes, Dr. Mawad is in Texas at St. Luke's Episcopal Hospital--he is chief of neuroradiology at Baylor College of Medicine. He is a true pioneer in this field and I trust him so much!! He did want to repair the fistula cause it does have danger to it--but so does the repair--he understood that for now I would rather do the watch and wait strategy. What tests have you had? PT is so hard to deal with--but, for now, I have adjusted to it as best as possible!

 

[Karen]

Barbara -- The tests I've had so far are: CT scan of temporal bone (no contrast);MRI/MRA of brain (with contrast); carotid artery scan. Nothing showed up on any of the tests. I've been to two ENT's and three neurotolgists in my area (Atlanta, GA). The doctors told me I have conductive hearing loss in my right ear, and have suggested stapedectomy surgery. However, I've heard that stapedectomy sometimes makes the ringing worse.

My pulsatile tinnitus started immediately after starting blood pressure medication (which I have since gotten myself off of), so I feel it is linked to that, rather than a vascular structure that is out of whack. I've tried various therapies since it started, and it has gotten much calmer, but is still there. I've adjusted to it, too, as best I can!

 

[Barbara Toman]

Well, if it is NOT from a known vascular cause, then learning to deal with it is a good thing!! Even though mine pulsatile tinnitus is from a known vascular cause, I am still choosing to do the same thing--deal with it---and of course, I need to do yearly MRA of head/neck to check for any growth. So glad you are experiencing a calmer PT! Is your PT able to be heard by the docs? Cause if it is, then often times doing a catheter arteriogram is a good thing. I also suggest a FB site called Pulsatile Tinnitus Whooshers Unite--it's great!!

 

[Karen]

Barbara,
My pulsatile tinnitus cannot be heard by the doctors. Can yours? I've often wished that someone else besides me could hear it, so they would know what I've been listening to for 2 1/2 years! (I have both a steady, high-pitched ringing, and a steady pulsating sound, often punctuated by other sounds). I'll check out the FB site; thanks for the suggestion!