March 06, 2008
Q: I need to know more about cholesterol granuloma
Q: I need to know more about cholesterol granuloma, especially diagnosis and treatment.
A:
This question was unusual in that it concerned a common condition, a not unusual type of benign growth, and that there does not seem to be many patient support groups related to the condition. Normally, we like to offer both consumer health and professional information about a condition, as well as helping people find other "real folk" who have some experience or concern related to the condition. For this topic, there was little quality consumer health information, so we are sharing mostly information for doctors, hoping that this will be helpful.
TERMS:
cholesterol granuloma
This is also known as or distinguished from: cholesteatoma, petrous apicitis, Gradenigo syndrome, Gradenigo's syndrome, giant cholesterol cyst of petrous apex, cholesterol granuloma of petrous apex, petrous apex schwannoma, clivus chordoma, clivus chondrosarcoma, as well as other names and conditions.
SEARCHING:
Here is a sample search for more information performed both in Pubmed (for articles for doctors) and Google (which also brough back mostly articles for doctors).
(cholesterol granuloma OR cholesteatoma) (head OR cranial OR cranium OR facial OR face OR aural OR auditory OR ear) "differential diagnosis"
Pubmed: http://tinyurl.com/3xjyn9
Google: http://tinyurl.com/2tcqa8
CONSUMER HEALTH INFORMATION:
American Academy of Otolaryngology-Head and Neck Surgery (AAOHNS): Cholesteatoma: http://www.entnet.org/healthinfo/ears/cholesteatoma.cfm
EarSite: Tumors: Cholesteatoma: http://www.earsite.com/tumors/cholesteatoma.html
MedlinePlus: Medical Encyclopedia: Cholesteatoma: http://www.nlm.nih.gov/medlineplus/ency/article/001050.htm
SUPPORT GROUPS / PATIENT FORUMS:
Cholesteatoma.net: http://www.cholesteatoma.net/
LINKS FOR HEALTHCARE PROFESSIONALS:
eMedicine: Cholesteatoma: http://www.emedicine.com/PED/topic384.htm
eMedicine: Middle Ear, Cholesteatoma: http://www.emedicine.com/ENT/topic220.htm
eMedicine: Skull Base, Petrous Apex, Infection: http://www.emedicine.com/ent/topic243.htm
eMedicine: Skull Base, Petrous Apex, Tumors: http://www.emedicine.com/ENT/topic244.htm
Posted by pfa at 06:39 PM | Comments (1)
May 01, 2007
Finding a Summer Camp for Your Child
This time of year, many parents are looking for summer activities for their schoolage children. What about those children with special needs who for one reason or another can't go to regular summer camps? Or what about the ever present question of, "How do I find more people like me?" at the childs level? Here is a great resource that collects information on summer camps for special needs children, and they even have a section specifically for children with craniofacial concerns.
BraveKids: Resources = Camps: Condition = Craniofacial: http://tinyurl.com/3774tq
In Europe, EuroRDis is collecting information on this. You can contact them or find information about their activities here.
European Organization for Rare Disorders (EuroRDis): Rare disease news in Europe: http://www.eurordis.org/secteur.php3?id_rubrique=1
Want to explore more on your own? Here is a web search to which you can add other specifications such as your location.
Posted by pfa at 06:50 PM | Comments (0)
January 23, 2007
Q: Soft Spot Closed Too Soon?
Q:
My 5-month-old daughter's soft spot has already closed. This was brought to the attention of her pediatrician; he had a cat-scan done and said that there is nothing to worry about. Everything that I have read states that the soft spot should be re-opened. Do we need a second opinion?
A:
I would like to refer you to some resources that confirm what had already been heard from the pediatrician.
(1)
Family Practice Notebook: Fontanelle: http://www.fpnotebook.com/NIC25.htm
According to this excellent (although abbreviated) resource, normal closure of the fontanelle happens between 4-26 months, with a median of 13.8 months. Closure at 5 months is unusual, but not necessarily abnormal. The pediatrician did the completely correct thing in evaluating whether this was a normal or abnormal closure.
(2)
The Abnormal Fontanel / Joseph Kiesler, MD, and Rick Ricer, MD
Am Fam Physician 2003;67:2547-52. http://www.aafp.org/afp/20030615/2547.html
This article also says that early closure can be normal, and describes how to diagnose whether or not it is a problem.
"The diagnosis of an abnormal fontanel requires an understanding of the wide variation of normal."
"Fontanel closure that occurs as early as three months of age can be within normal limits, but careful monitoring of head circumference in such cases is essential to exclude a pathologic condition."
(3)
Pediatric Education / Donna M. D'Alessandro MD. When Should the Anterior Fontanelle
Close? (Monday, April 17, 2006): http://www.pediatriceducation.org/2006/04/17
This article intended solely for doctors -- clinicians and students of pediatrics. It provides a learning example of a child with early closure and no evidence of craniosynostosis, who is closely monitored rather than being treated.
I hope this is helpful. If your family continues to be concerned, or observes an odd shape to the baby's head, you might want to return to her pediatrician with notes of any changes, or ask for a second opinion.
Posted by pfa at 10:31 AM | Comments (0)
January 21, 2007
Q: Finding Dental Treatment for Medicare Patients
Q:
I have a patient who needs to have dental treatments after head and neck cancer. The patient has medicare only, and they will not pay for this specific treatment. Do you have any funding for patients like this? Do you know who else may have a foundation dedicated to these patients?
A:
Let's Face It is an information service only, and does not have funding for clinical care or treatment. However, we do provide information on how to find funding or care.
For the first step, please check the Let's Face It section on financial matters:
http://www.dent.umich.edu/faceit/lifestyle/financial.php
Secondly, another thought would be to contact a nearby dental school. Many dental schools have community support programs or can provide low cost treatment from students or graduate students for patients with special needs.
Last but not least, there is an organization that provides support specifically to patients who have or are recovering from head and neck cancers.
Support for People with Oral and Head and Neck Cancer, Inc (SPOHNC):
http://www.spohnc.org/
Many times, even if the organization does not provide funding, they will provide support groups or ways to talk with other patients. For many questions, other patients can be a rich and powerful resource for information on questions related to practical matters, such as this. Often, someone else may have been in the same situation and discovered a solution.
Posted by pfa at 10:12 AM | Comments (0)
November 09, 2006
Need information for family of infant with severe oral and facial hemangioma ...
Q: Need information for family of infant with severe oral and facial hemangioma ...
A: Here is some information on planning dental care, finding financial resources, and more information.
Dental Care
It may not be an issue right now but the oral involvement of the condition may be significant. This will depend on the location and severity. It is strongly recommended that the child should receive an oral evaluation at age 1. Any dental work requiring block or infiltration anesthesia may be a problem for this child. Therefore, prevention is the key. Please consider tooth brushing using wash cloth or soft brush daily as soon as teeth are present. Give special attention to oral hygiene for this child.
Financial Information
Having a child with special needs can be overwhelming. The family should discuss their concerns and needs with a social worker who will likely know of resources. If help is needed to care for the baby or its medical treatments, the family should be able to get on Children's Special Health Care Services (a medicaid program). If the services are not covered, they should talk to Patient Relations who can assist them in obtaining charitable status. The child may also be eligible for Children Special Health Care insurance provided by the state, if they live in the United States. Typically, the physician who made the diagnosis submits the application on behalf of the patient. It takes 8 weeks or longer for review and approval. Family will be contacted to provide additional information during the review process.
For more information about financial resources, please see our web page on this topic.
Let's Face It: Financial and Insurance Information: http://www.dent.umich.edu/faceit/lifestyle/financial.php
More Information
First, take a look at the Let's Face It page on Vascular Birthmarks. (FYI, the recommended book, Gianna's Wild Strawberry, is about to be released in a second edition. Watch Amazon for more information!) If you want more information for patients, you might want to also look at the Resource page from the Hemangioma Treatment Foundation.
Posted by pfa at 07:31 PM | Comments (0)
October 25, 2006
I want to know the number of facially disfigured in the US ...
Q:
Can you direct me to a website or publication that gives the statistic of how many Americans are facially disfigured? I would like to have this number for a paper that I am writing for my elective class.
A:
There are so many different ways to answer this question, I am not sure even where to start! It really depends on how you define "facial differences", which is potentially a broad concept.
There is a huge range of genetic conditions that can result in facial differences. There are also oral or head/neck cancers, trauma, and skin conditions that may or may not effect the face. There may be statistics for each of these individually (which would be a huge project). If there is a source that gives an overall estimate
of incidence or frequency, you would want to first find out how they were defining the concept.
To begin with, please look at the Let's Face It page on General Information > Reference, which includes a section on Statistics. This is the mostly likely place to find the sort of information you want for your paper.
Next, let's look at some strategies you could use to find answers for this question.
STRATEGY #1:
There are overall stats for birth defects, but you have to remember that not all of these involve the face.
CDC: National Center for Health Statistics: FASTATS: Birth Defects: http://www.cdc.gov/nchs/fastats/bdefects.htm
Edmonds, Larry D.; James, Levy M. Temporal Trends in the Prevalence of Congenital Malformations at Birth Based on the Birth Defects Monitoring Program, United States, 1979-1987. MMWR December 01, 1990 / 39(SS-4);19-23.
http://www.cdc.gov/MMWR/preview/mmwrhtml/00001892.htm
Rolv Terje Lie et al, "A Population-Based Study of the Risk of Recurrence of Birth Defects," NEJM 31(1) 1994:1-4.
STRATEGY #2:
You can look for statistics for diseases or conditions that effect a specific part of the face. Here are a couple examples.
Here are statistics for cancer of the eye:
National Cancer Institute: Surveillance Epidemiology and End Results (SEER): Cancer Stat Fact Sheets: Cancer of the Eye and Orbit:
http://seer.cancer.gov/statfacts/html/eye.html
Statistics for oral cancers:
National Cancer Institute: Surveillance Epidemiology and End Results (SEER): Cancer Stat Fact Sheets: Cancer of the Oral Cavity and Pharynx: http://seer.cancer.gov/statfacts/html/oralcav.html
National Cancer Institute: Surveillance Epidemiology and End Results (SEER): Cancer Stat Fact Sheets: Cancer of the Tongue: http://seer.cancer.gov/statfacts/html/tongue.html
STRATEGY #3:
You might also want to look for statistics on specific conditions known to effect the face.
Stanford Craniofacial Anomalies Center: Hemangiomas: http://craniofacial.stanford.edu/HemangiomaPAGE.html
"The incidence of hemangiomas is 10-12% in Caucasian children."
Stanford Craniofacial Anomalies Center: Cleft Lip / Palate:
http://craniofacial.stanford.edu/CleftLipPalatePAGE.html
"One in every six hundred births a cleft occurs in some form."
Stanford Craniofacial Anomalies Center: Craniosynostosis: http://craniofacial.stanford.edu/CraniosynostosisPAGE.html
"Plagiocephaly occurs the most often. It happens in approximately 1 out of 2500 births."
International Craniofacial Institute: Cleft Lip and Palate Statistics: http://www.craniofacial.net/sf/cleft_lip_and_palate.htm
eMedicine: Plastic Surgery: Craniofacial: Craniofacial, Cleft Palate Repair, by Pravin K. Patel MD: http://www.emedicine.com/plastic/topic168.htm
"Frequency: The incidence of cleft lip/palate (CL/P) by race is 2.1/1000 in Asians, 1/1000 in whites, and 0.41/1000 in blacks."
Posted by pfa at 08:58 AM | Comments (0)
October 19, 2006
I am looking for a group or anyone who has Oral Facial Digital Syndrome ...
Q:
I am looking for a group or anyone who has Oral Facial Digital Syndrome.
A:
There are several different names for this condition. Searching by the various names might help you find more information.
Orofaciodigital syndrome
Oculo-dento-digital syndrome
Oculo-dento-digital dysplasia
oral facial digital syndrome
Cranio-Oro-Digital syndrome
Digital-Oro-Cranio syndrome
Juberg Hayward syndrome
We found one support group that seems to be related.
Oculo-Dento-Digital Dysplasia Support Group
8810 Orchard Road
Pikesville, MD 21208
Phone: 410.580.0882
URL: http://www.odddsupportgroup.com
Contact: aboutus@odddsupportgroup.com
Here is a selection of links to information that might be helpful.
FaceIt: Juberg Hayward: http://del.icio.us/faceit/juberg.hayward
Posted by pfa at 10:26 AM | Comments (0)
I am looking for a video or audio tape ...
Q:
I am looking for a video or audio tape about image, behavioral skills, or self-image and persons with facial differences.
A:
The organization Forward Face has digital videos online at their website.
Forward Face: Video: http://www.forwardface.org/video.html
One of the videos I found there tells the story of a musical called "Let's Face the Music."
"Meet a group of courageous and creative young people, the Inner Faces, who were born with craniofacial differences. Face: A Portrait is a documentary portraying their participation in the creation and production of an off-Broadway theater piece that is also the story of their lives."
http://www.vpw.com/educational/results.asp?SEARCH=HIGH
This video does not appear to be available for purchase at this time, and is only available from the Forward Face website.
Posted by pfa at 10:04 AM | Comments (0)