Persistence and a Diagnosis: Fibromuscular Dysplasia (FMD)
There's no better way to finish off the year than a story about persistence that paid off. Here is a story submitted
by Donna, the latest Whoosher who listened to her gut and to her whoosh.
As she writes, her story isn't over - this
isn't a cured whoosher story. But it's inspirational nonetheless. Even those of us with different diagnoses can relate
to many of the ups and downs she describes. Now Donna is on the path to proper treatment, which is a great thing.
more information about Fibromuscular Dysplasia, see the FMDSA web site.
"I want to write this before the year is over in case it can help anyone out there that
perhaps is experiencing anything similar to the frustration and helplessness I felt in dealing with this condition in my body.
I apologize for the length of the story now, it was a long process, and I will try and keep it as brief as I can.
I am a 65 year old woman and consider myself a healthy, active 65. I eat mostly fresh food, exercise and have
rarely been sick until this episode. My home has been on the Big Island of Hawaii for the past 30 years.
all started in early November of 2012 when out of the blue I had a horrible toothache in the top back left side of my mouth.
I had had that last tooth repaired some years ago and the dentist told me if it goes again it will have to be a root canal.
I made a dental appointment only for them to say the tooth was fine and maybe I was grinding my teeth at night and it was
affecting the nerves and they could do a tooth guard to the tune of $300-500. No thanks.
the dentist on the 17th of Nov. and she x-rayed my sinus and said the left side was cloudy and to go to my regular doctor
which I did and he thought a sinus infection and gave me antibiotics. By the end of November I was experiencing a loud
pulsation in my left ear, headaches on the left side especially an area above and to the left of my ear, extremely tight muscles
around my ear in front, pressure inside my ear with popping and crackling noises on occasion, pain around my jaw, sinus, eye
and face on the left side only, you could draw a line down the center of my head and everything on the left side was sore.
I began experiencing migraine headaches often with visual lightning bolts before my eyes and was experiencing a definite increase
in post-menopausal hot flashes. All my symptoms were worse when lying down, especially hearing the heartbeat in my head.
Felt totally debilitated by everything.
In early December when I revisited the doctor complaining of all these
symptoms, he gave me another round of antibiotics and recommended taking Allegra D and a nasal wash daily. I did that
for a month to no avail. Each time he looked in my ear, he would comment on the fact that he was seeing a lot of fluid.
Dec. 2, 2012: 3rd day of antibiotics, had a terrible night, left ear was pounding, intense headache and was up
at 1:30 and 3am, had to sit up and sleep and still had a headache this morning.
I had an eye check and was
told all was okay. Returned to the dentist at the end of December and again they said it was not the tooth.
Went to the other side of the island and saw the original dentist that fixed the tooth and he also said the tooth was fine
and it was all caused by TMJ.
At the end of December I began to experience high blood pressure readings in the
180s/100s. My physician said they would just keep an eye on it as I never had BP problems before.
I went back to my primary doctor and he recommended a third round of antibiotics which I refused as I felt the other two doses
had little effect on what was happening. I was now having a very difficult time sleeping, the left side of my head between
my ear and eye was consistently very tight with pressure and the pulsating heartbeat I heard in my head was very loud throughout
the day and more intense at night. I had to continually say to the doctor that it was not tinnitus or ringing in the
ear but a pulsation like my heart beat.
I would sit for hours with a hot compress on the side of my head for relief.
In February, I had the pressure in my eyes checked and the eye doctor recommended eye drops for the high pressure.
I refused the recommendation as my regular doctor was on vacation and I felt that all that was going on in my head was involved
and I did not want to add this to the mix.
I again returned to my primary physician in a frustrated state, at the
end of my rope and weepy. He called in a prescription for the high blood pressure, ordered a cat scan of my sinus and
gave me information to read about sinus infections and recommended I see the staff psychologist.
came back with a polyp on the right sinus which he thought could be causing the problem and he would refer me to the ENT.
Really??? I have had not one symptom on the right side but okay it will get me another doctor’s opinion.
In the beginning of March the pulsation in my head seemed to get quieter….I referred to it as though it had moved
to another room. By the end of March I was still awaking with headaches, could not lie comfortably on either side of
my head without pain, discomfort, or loud pulsing noise. I would bunch pillows under my neck so I could lie down without
my head touching the pillow. I also had begun to exercise on a daily basis on a treadmill at home. It seemed to
make me feel better on the days I would exercise.
In April of 2013, I was at the point I didn’t even
want to talk about what was going on. I had never had anything serious regarding my health and considered myself a person
with a healthy life and eating style. And I certainly had never experienced symptoms in my body for this long a period
of time. I decided I would try acupuncture and see it I got some relief. In the meantime my regular doctor had
agreed to a head scan and new blood pressure meds.
The acupuncture was very helpful in relaxing my body and helped
me sleep better as I continued treatment throughout April.
The head scan came back normal.
At the end of May, I had the ENT appointment and before she even looked in my ear, her diagnosis of what was happening was
all blood pressure related.
At this point I decided I was just grateful that it seemed to get better daily so
rather than worry about it anymore I would just be grateful it is healing and go with that. In the meantime the pulsation
sounds were fainter, and I was still feeling pressure and pain in my head.
June 1st found me on the mainland visiting
my daughter. She wanted me to go to a doctor there and see what they said. Due to family circumstances, I did
not see Dr. Kylstra until August of 2013. She was incredibly supportive and ordered an MRI of my head. The MRI
came back no obvious problem but the radiologist noted fluid on the mastoid on the left side. I had talked to the doctor
about referring me to a neurologist but after the MRI she was hesitant and wanted me to go back to an ENT. I was again
feeling very discouraged when I left the office. My daughter was waiting for me in the car. She had searched on
the Internet with fluid on the mastoid and palpitations. What came up was an article about brain fistulas and
she was like, “Mom, this is exactly the symptoms you have been having this year.” After reading the
article, it was the first time I actually had a possible cause for all of this and I forwarded the article to Dr. Kylstra.
She was again very receptive and agreed that it sounded similar to what I was experiencing. I made an appointment to
see her and get a referral to the neurologist. The article also mentioned that if it was possibly a fistula that by
putting the stethoscope over the mastoid, the doctor should be able to hear the palpitations and she was anxious to listen.
It was a wait until the end of September to see the neurologist and then was again disappointed to hear him say he
does not even treat conditions such as this but he did have another patient with the exact same symptoms and hers was indeed
a brain fistula. He then referred me to UCSF to see Dr. Van Halbach, a neurointerventional radiologist.
The end of September found me sleeping better and I could actually lie on the side of my head for short periods of time.
I would still be awakened by head pain and pulsations sporadically during the night.
The day I was to visit
Dr. Halbach, I had my doubts about following through now that I was feeling better in all departments. But I proceeded forward
to possibly get some answers. From the time Dr. Halbach walked into the room, he was better than all my expectations.
He was incredibly informative, humble and instilled confidence in his ability to find out what was going on in my head.
I agreed to schedule the angiogram and his staff was very helpful and efficient in doing so for the next week. When
Dr. Halbach left the examining room, I cried. Finally someone said it is not normal to hear your heartbeat in your head
and understands what I have gone through for the past eleven months. The angiogram was scheduled for Oct. 3rd at UCSF.
The whole process was very strange but they couldn’t have been more professional and kind at UCSF. It
felt like I was submitting my body to some very strange science experiment.
I recall parts of the procedure and
I remember Dr. Halbach telling me that it was not a brain fistula, not something he could fix and that it was fibromuscular
dysplasia…the term would not stick in my brain, I had to ask several times that day. Since then I have
learned so much about the disease thanks to the Society of Fibromuscular Dysplasia and their website, webchats and chat groups.
It took almost the whole month of October to recover from the angiogram as it seemed to make the palpitations
at night worse, more intense headaches and fatigue.
The diagnosis came back with FMD in both carotid arteries,
and several other arteries and a healed dissection in the vertebral artery on the left side. I believe that the past
year was the healing process for the dissection.
This holiday season finds me very grateful for the health
I am experiencing. I still have palpitations in my head and neck at night though much fainter and not all the time.
I can actually sleep with my head touching the pillow though certain positions still cause discomfort and pulsatile tinnitus.
I realize it is something I will have to monitor the rest of my life.
I am returning to the mainland to
be evaluated for a possible angioplasty of my renal arteries in February.
In the meantime I am extremely
grateful for knowing what is happening in my body and that what I was experiencing that whole year had some basis for it and
it was not all in my head (though literally it was). I have learned much from the experience and know that if this should
happen again, I would be much more of an advocate for myself this time around. I know my body better than anyone and
if something this unusual is happening there is a reason and I would now demand further testing or another doctor’s
My journey here is not over, I will follow my intuition in caring for myself and wish you
all the best of health."