Within 6 months tumors shrank by 50%, however pelvic pain continued to increase and new
areas of pain began in abdominal areas outside of pelvic region. 6 month CT Scan showed no
abnormality. One year post UAE, pain and fatigue became overwhelming and OB-GYN performed
laparascopy finding extensive abdominal and pelvic adhesions from embolic agents. In
addition, substantial endometriosis was found as well as adenomyosis of the uterus.
Surgeon removed left ovary, 1 calcified cervical fibroid and excision of endometriosis.
Pain continued to increase post laparascopic surgery; OB-GYN recommended 80% chance for
relief from pain if supracervical hysterectomy was performed. Supracervical hysterectomy
was performed one and a half months later. Pathology of both surgeries showed foreign body
giant cell reaction, focal fibrosis, granulomatous inflammation and focal calcification.
Surgeon's new resident physician stated there was infection in all pathology at follow-up
visit. Surgeon denied this stating the resident physician was new and did not understand
that there was not infection, but an adverse reaction indicated in the pathology. Pain continued to increase alarmingly post two laparascopic
surgeries. OB-GYN referred patient out of care and suggested consults with a pain
management specialist, a bowel surgeon and a therapist skilled at coping skills for pain.
Bowel surgeon had no experience with UAE complications and recommended patient to seek
intervention from a tertiary clinic such as the Mayo Clinic or the Cleveland Clinic. Began
methodone pain management and weekly therapy sessions while seeking interventional options
at the Mayo Clinic. Had to apply for disability benefits through employer, as pain and
symptom complex were so disabling that daily life had become a chore; an ordeal to get up
every day in horrible pain and fear of permanent disability.
Nearly a year after the last laparascopic supracervical hysterectomy, the Mayo surgeon
recommended another laparascopic surgery to determine if patient had gangrenous bowel due
to symptom complex (having a case report of another patient post UAE). Surgeon also
removed remaining cervical area where much of the embolic material remained due to
cervical fibroid embolization. Surgeon found multiple areas of clumps of white embolic
foreign body material, which had pooled into clumps throughout abdominal cavity; these
were excised (cut out). Surgeon also found additional adhesions from embolic material,
which were lysed (released), and a chronically inflamed appendix, which was removed at the
stump. The Mayo surgeon could not guarantee that this surgical intervention would get
patient well, however was worth performing in an attempt to reduce patient's debilitating
and disabling pain threshold.
Educational Medical Consult with Dr. Hufnagel:
After struggling with recovery for over a year post Mayo surgery, and still not getting
well, patient consulted Dr. Hufnagel at the Hufnagel Institute for an educational medical
consult.
After over 3 years post UAE and 3 interventional laparascopic surgeries in less than a
year, it was amazing that in just one hour, Dr. Hufnagel was able to finally give patient
definitive recommendations regarding health compromises. Dr. Hufnagel recommended silicone
antibody testing, a gallium scan, CA-125 testing, comprehensive blood labs and directed me
to find a holistic M.D. to assist me in sorting out the ongoing symptom complex related to
PES secondary to UAE. It is important to note that I found Dr. Hufnagel only through
exhaustive research on the internet, as 99.99% of UAE websites promote this procedure as a
non-invasive non-surgical procedure with very low risk and high success outcomes. She is
the only M.D. that understands and treats patients for post embolization syndrome (PES).
Testing Results:
Silicone antibody tests came back positive for silicone poisoning, with highest levels in
the blood and muscle. This is no joke. Incidentally, these tests were performed by
ImmunoSciences Lab, Inc., with high quality control and stringent quality assurance. The
Holistic M.D. stated there is still ischemia (lack of oxygen) in my tissues, blood and
organs secondary to UAE complications with embolic agent spill into my peritoneal cavity
through the fallopian tubes. He said my immune system is compromised with multiple blood
markers and that my cells are attacking themselves. They are "nucleolar" with a
ratio of 1:1280 when normal is 1:20. I also have a rheumatoid factor, associated with
arthritis, of 37 when normal is 0-20. I also have a skin condition typically associated
with systemic lupus called livedo reticularis.
In other words, I now have auto-immune disorder secondary to UAE complications, secondary
to silicone in the embolic materials. I was 39 when I had the UAE procedure and was very
strong physically and very active, having a solid 20 year history of engaging in weight
training, yoga and aerobic conditioning activities. I am currently disabled still trying
to regain my health through multiple "holistic" approaches including
acupuncture, osteopathic manipulation (OMT), histamine drops, blood builder and other food
supplements, hormone analyses, nutritional analyses, ion and other testing. All of this
has occurred only in the past two months, and only at the recommendation of Dr. Hufnagel.
Had I not found Dr. Hufnagel, I would still have no idea why I still have health issues
related to UAE post embolization syndrome. Many of the physicians preceding Dr. Hufnagel
passed me from one doctor to another, for multiple tests without any of them coming close
to putting together any sort of clinical picture based on my "rare
complications" from UAE. I was even told by one doctor that I was fixated on the idea
of the embolic materials migrating and causing the pain and that they don't migrate.
I'm not proud of the way I look today (below) after all that I have been through, but at
least I am beginning to have hope for improvement with Dr. Hufnagel's help. |
