I wanted to share the information that my family and I gathered from Sept-Dec 2012 during our daughter's suffering of chronic appendicitis.
During this crazy period of countless visits to many doctors, we discovered that there is a debate in the medical community about the existence of chronic appendicitis. Our experience is that chronic appendicitis does exist. There are at least two conditions that create chronic pain in the RLQ, neurogenic appendicopathy and appendiceal torsion that will not show up on any of the typical tests that are done for appendicitis. Ultrasounds and CT Scans are NOT able to completely rule out appendicitis, despite the fact that I was repeatedly told this by the staff at ACH. The ONLY way to completely rule out appendicitis is to remove it.
It is possible that appendectomy would not have fixed the problem however, we were willing to accept the 20-30% chance that she didn't have appendicitis in order to rule out appendicitis once and for all, but we were not given that option by anyone at Alberta Children's Hospital.
We also discovered that many doctors are unable to make a decision without 'paper' confirmation from a large array of tests. We believe that it is critical that the people who know the patient (family, GP, friends) be listened to and if you are in that position it is important to advocate for the patient. This is incredibly difficult in the face of often arrogant doctors, but it is worthwhile in the end.
Here is a copy of the letter of complaint we sent to Alberta Health Services over the treatment of our ten year old daughter for intense right lower quadrant (RLQ) pain for 3 months in the fall of 2012.
The following excerpts from our complaint explain further and I have also attached back up medical citations that my father kindly found.
Excerpt:
We are filing this complaint both as parents and taxpayers. The complaint is that no one at ACH believed our daughter, us (her parents), our GP, or Radiologist that has studied chronic appendicitis that she had appendicitis for almost 3 months.
We were told repeatedly by ACH that chronic appendicitis does not exist. As a result of this, our daughter lingered in intense pain for this entire time. Not considering the option of treating her symptoms with an appendectomy resulted in thousands of dollars of unnecessary tests and prescriptions of unnecessary drugs. Our complaint boils down to the fact that the only way to completely rule out appendicitis in patients with these symptoms is to remove it. The solution is that patients or their guardians be given this as an option.
The physical, emotional and financial toll of this ordeal was huge. Our daughter missed almost 3 months of school; her mother is self-employed and missed almost 3 months of work in order to home school our daughter, while acting as nurse as well. Her sleep patterns remain disrupted, she has lost all muscle tone and she has lost her natural self-confidence. Our family struggled to maintain a semblance of normalcy, our other child suffered the worry and stress that permeated our household. One parent slept with her every night during this time because she would wake in intense pain. We were afraid that her appendix may rupture, which is then a medical emergency.
We have attached the journal (Schedule A) that we kept through the ordeal which gives the chronology and treatment during that time. The short synopsis is that she had a night of vomiting on Sept. 21 and this was followed by constant, intense, pain in her RLQ. Over the ensuing weeks we took her to Emergency at Alberta Children’s Hospital 6 times. They issued and treated her for numerous ‘diagnoses of exclusion’ including mesenteric adenitis, irritable bowel syndrome, FAB (Functional Abdominal Pain), and despite the fact that her pain never moved from RLQ or changed in intensity, appendicitis was ruled out due to negative blood tests, ultrasounds and CT scan. Two ACH surgical residents refused to removed her appendix, while at the same time were unwilling to give us assurance that it wasn’t appendicitis. At no time was she seen by a fully licensed surgeon at ACH. From the outset, we were treated with suspicion instead of compassion by staff at ACH ER. At no point were neurogenic appendicopathy or appendiceal torsion raised as possible diagnoses, despite the fact that these fit her symptoms and test results far better than any of the diagnosis’ of exclusion offered by ACH.
In our dealings with ACH the following issues arose and were never satisfactorily addressed:
Why would the appendix be immune to chronic conditions when the rest of the organs are not?
Why do test results cause ACH Physicians to ignore the patient’s physical symptoms? On the third surgical consult the surgical resident didn’t even examine her abdomen.
How is a colonoscopy/endoscopy under general anesthetic less invasive than a laproscopic appendectomy?
Why, in an otherwise healthy child with no history of mental problems, would the ACH Physicians default to psychosomatic or neuropathic pain when her symptoms were so clearly physical?
Since the only way to completely rule out appendicitis is to perform an appendectomy and in the face of such clear physical symptoms, why was this not the first diagnosis of exclusion? Why were we told that ultrasounds, CT scan and colonoscopy could rule out appendicitis when they are clearly not able to do so?
Why are they willing to leave a 10 year old (or anyone) at risk of her appendix going acute and bursting when this possibility can be eliminated with a 30 min day surgery?
Why is the use of ‘off label’ drugs condoned and even promoted when they don’t even know how/why/if these drugs work and the drugs really weren’t indicated? Why, when these drugs didn’t work for Quinn was an appendectomy not considered?
With the help of our GP and a radiologist, we found a surgeon who has studied chronic appendicitis, diagnosed our daughter with it and removed her appendix on Dec. 19 at Peter Lougheed Hospital. She has been pain free since her recovery from the surgery. Although the pathology results were negative, the therapeutic result of the appendectomy obviously indicates that there is something missing in AHS testing for appendicitis. I have attached a list of medical citations (Schedule B) for two diagnoses that were never mentioned and/or tested for, appendiceal torsion and neurogenic appendicopathy.
Through our discussions with friends, neighbors and acquaintances we have met 4 other Albertans (3 adults and 1 child) with this same story - months of pain (in one case 3 years) followed by either acute or ruptured appendix. They are willing to be contacted if you are interested.
In our rough estimate (Schedule C attached), her ‘treatment’ cost over $25,000 when a rule out appendectomy would have cost about 20% of this or $5000. As tax payers we find this to be wasteful and unnecessary.
ACH appears to have an unhealthy monopoly on pediatric care in Calgary that has resulted in an ivory tower mentality that disregards the actual patient, their physical symptoms, their GP and any other, outside medical professionals. The GP’s role should be considered crucial when dealing with patients and in our experience, this is not the case.
Medical citations - neurogenic appendicopathy and appendiceal torsion
Medical Citations Concerning Appendiceal Torsion and Neurogenic
Appendicopathy
January 2013
Appendiceal Torsion
Google
search of this phrase resulted in 285,000 hits of which the following 11 were
selected as representative of cases in which the appendix removed showed signs
of contortion. Many of these hits referred to the torsion of other abdominal
organs and not the appendix.
Item 1
Title: Torsion
of the Vermiform Appendix: a Case Report.
Author: Bestman,
T. et al - (Dept. of Surgery, Middelares Hospital, Antwerp, Belgium)
Source: Acta
Chir. Belg.. - Vol. 106
Date: 2006
Item 2
Title: Torsion
of the Vermiform Appendix: A case report.
Authors: Wani,
I et al - (Dept. of Surgery, SMHS Hospital, Srinagar, India)
Source: Internet
Journal of Medical Update - Vol. 4, Issue 2
Date: July
2009
Item 3
Title: Torsion
of the Appendix.
Author: Carter,
A - (Surgeon, St. Mary's Hospital, London, England)
Source: Postgraduate
Medical Journal - Vol. 35
Date: December
1959
Item 4
Title: Secondary
Torsion of the Vermiform Appendix with Mucinous Cystadenoma.
Author: Kitagawa,
M - (Dept. of Surgery, Kyoto
Hospital, Japan)
Source Case
Reports in Gastroenterology - Vol.1 Issue 1
Date: June
2007
Item 5
Title: Laparoscopic
Management of a Torted Appendix.
Authors: Rajendram,
N et al -
Source: Annals
of the Royal College of Surgeons of England, Vol. 88, Issue 6
Date: October
2006
Item 6
Title: Primary
torsion of vermiform appendix mimicking acute appendicitis.
Authors: Marsden,
E et al - (Dept. of Surgery, Horton Hospital, Oxford, England)
Source: BMJ
Case Reports 2011
Date: October
2011
Item 7
Title: Torsion
of vermiform appendix: value of ultrasonographic findings.
Authors: Uroz-Tristan,
J et al - (Dept. of Pediatric Surgery, Las Palmas Hospital, Grand Carary,
Spain)
Source: European
Journal of Pediatric Surgery, - Vol. 8, Issue 6
Date: December
1998
Item 8
Title: Cecal
eplploica appendix torsion in a female child mimicking acute appendicitis: a
case report
Authors: Christianakis,
E - (Pendeli Children's Hospital, Athens, Greece)
Source: Case
Journals 2009, 2:8023
Date: January
2009
Item 9
Title: Primary
acute torsion of the vermiform appendix.
Authors: Val-Bernal,
J et al - (Pathology Dept, Cantabria University Hospital Medical Faculty,
Santander, Spain)
Source: Pediatric
Pathology & Laboratory Medicine - Vol. 16, Issue 4
Date: July
1996
Item 10
Title: Torsion
of a mucocele of the vermiform appendix: a case report and review of the
literature.
Authors: Lee,
CH et al - (Dept. of Surgery,
Chonbuk University Medical School, Jeonju, S. Korea)
Source: Journal
of Korean Surgical Society - Vol. 81 (Suppl.1)
Date: December
2011
Item 11
Title: Torsion
of the Vermiform Appendix - Report of 2 cases
Authors: Somogyi,
R et al - (Dept. of Pediatrics, University of Pecs, Hungary)
Source: Journal
of Pediatric Surgical Specialies - Vol. 4, Issue 1
Date: April
2010
Neurogenic Appenicopathy
Google
search of this phrase resulted in 4330 "hits" of which the following
ten are indicative of information
available on this disease.
Item 1
Title: Neurogenic
appendicopathy: Clinical presentation in a paediatric population
Authors :: Sesia,
Sergio et al - (University of Basel, Children's Hospital, Switzerland)
Source: Deutsche
Gesellschaft fur Chirurgie -
Proceedings of 128 th. Congress.
Date: May
2011
Item 2
Title: Neurogenic
appendicopathy - A common disorder, seldom diagnosed.
Author: Hofler,
H - (Technical University of Munich)
Source: Langenbecks
Archiv fur Chirurgie - Vol. 351, Issue 3
Date: 1980
Item 3
Title: Neurogenic
appendicopathy - A clinical disease entity?
Author: Franke,
C et al - (Dept. Of Surgery, H.H.
University, Dusseldorf)
Source: International
Journal of Colorectal Disease - Vol. 17, Issue 3
Date: May
2002
Item 4
Title: Multi
detector CT findings of neurogenic appendicopathy
Authors: Tatakawa,
H et al - (Dept. of Radiology, Kyoto Hospital, Japan)
Source: European
Journal of Radiology Extra - Vol. 77, Issue 2
Date: February
2011
Item 5
Title: Evaluation
of Neurogenic Appendicopathy in negative appendectomy in pediatric patients.
Authors: Melnikov,
I et al (Serbia)
Source: Health
Med, Vol. 6, Issue 2
Date June
2012
Item 6
Title: Neurogenic
Appendicopathy
Author: Doberauer,
W - (Surgeon, Geriatric Hospital, Vienna,
Austria)
Source: Journal
of Gerontology, Vol. 12, Issue 4
Date: 1957
Item 7
Title: Neurogenic
Inflammation in Chronic Pain Condition
Author: Janicki,
T - (Director, Pelvic Pain Centre, University of Cleveland, Ohio, USA)
Source: International
Pelvic Pain Society, Vol. 11, Issue 1
Date: 2010
?
Item 8
Title: Vermiform
Appendix Disease
Author: Pathology
Associates of Lexington, West Columbia, SC.
Source: Publication
of Pathology Associates of
Lexington.
Date: October
2010
Item 9
Title: Neurogenic
appendicopathy: A frequent and almost unknown disease
Authors: Guller,
U et al - (Dept. of Surgery, University of Basel, Switzerland)
Source: Chirurgie,
Vol. 72 Issue 6
Date June
2001
Item 10
Title: Pathology
of the appendix in children: An institutional experience and review of the
literature
Author: Rabah,
R. - ( Children's Hospital of Cleveland, Ohio, USA)
Source: Pediatric
Radiology, Vol. 37 Issue 1
Date: January
2007
