| Related sites for http://home.att.net/~jnozum/Goldenh.htm |
| BloodGivers FAQs about blood donation, examples of how it is used, basic facts and blood types and compatibility. | | Cells_of_the_Blood Click on any of the cells to identify the cell type and get further information. | | Cryoglobulinemia Types I, II, II, treatment and information, cryofiltration apheresis. | | NHLBI Information and resources on blood from the National Heart, Lung and Blood Institute. Provides links on publications, fact sheets, and related diseases information. | | Pediatric_Oncall-_Routine_Blood_Test Brief description of the complete blood count. | | Project_Red_Flag The National Hemophilia Foundation’s (NHF) public awareness campaign to reach women with undiagnosed bleeding disorders. | | XLP_or_Ducans_Disease_Resource_Site X-linked Lymphoproliferative Syndrome (XLP) or Duncans syndrome. A family site with resources and news for 4 sons who suffer from this disease. | | XLP__X-Linked_Lymphoproliferative_Disorder Explains this rare condition which affects only males. Includes personal accounts and offers contact information for sufferers. | | Information_on_Trisomy_13 Discusses medical information on this chromosome abnormality, including the doctor's personal experience with this rare disease. | | What_malformation_did_El_Greco_paint? El Greco’s faces are modelled on a child with a distinctive malformation. But what condition is it? | | Brainnet_org Provides links to research, therapies, legislation and news related to the central nervous system and brain disorders. Requires registration. | | Central_Nervous_System_Diseases An online tutorial from the Virtual Hospital collection, on infectious diseases of the CNS. Includes diseases which involve primarily the meninges and those which are confined primarily to the parench | | CNSV_Network A resource for people with Central Nervous System Vasculitis (CNSV), their families and the health care community | | EEGinfo_-_The_Complete_Neurofeedback_Resource_ Information and resources for the public, children and professionals. Learn about this procedure which entails direct training of brain function. | | eMedicine_Health Consumer health resource center providing information on multiple causes of dizziness. | | Hardin_MD__Neurology_&_Neurosciences Lists of Internet sources in neurology, neurosurgery, neurosciences and nervous system diseases. | | Neurological_Disorders_-_MCW_HealthLink Information on neurological disorders from physicians of the Medical College of Wisconsin. | | Neurological_Disorders_Resources Good descriptions of common neurological disorders from the University of Washington. | | Neurology_and_Neurosurgery_Forum Online medical forum, questions and answers about neurological diseases and conditions. Located at Cleveland Clinic Foundation. | | American_Association_of_Clinical_Endocrinologists AACE is a professional organization devoted to the field of clinical endocrinology. | | BMC_Endocrine_Disorders Provides original research articles on the prevention, diagnosis and management of endocrine disorders, as well as related molecular genetics, pathophysiology, and epidemiology. For physicians. | | Case_Studies_in_Endocrine_Disorders Covers evaluation of pituitary, thyroid, parathyroid, adrenal, and reproductive endocrinology topics. Aimed at physicians. | | Endo_Leaders An educational resource which discusses the diagnosis, treatment, and long-term complications of untreated growth hormone deficiency. | | Endocrine_and_Metabolic_Diseases Patient information on a variety of endocrine disorders. | | The_Endocrine_Society Active professional endocrinology organization that promotes understanding of hormone, metabolism and gland communication through research to diagnose, treat, and prevent endocrine disease. | | Endocrine_Today Clinical news on diabetes and endocrine disorders. Login required. | | EndocrineWeb Provides easy to understand pages on endocrine disease, conditions, hormone problems, and treatment options. Intended for the education of patients and their families. | | Endocrinology OHSU Health presents on a variety of endocrine disorders. Includes a glossary and resources. | | Endotext_org Covers clinical endocrine practice, including current information on the manifestations of endocrine disease, diagnosis, and treatment. Directed to physicians. | | Hypothalamic_Hamartoma_Support_Page Resources for children and families dealing with this rare endocrine tumor. Information about the function of the hypothalamus, symptoms, treatments, and personal stories. Includes MRI images. | | The_Merck_Manual__Endocrine_and_Metabolic_Disorders Chapters on a variety of endocrine problems such as hyperlipidemia, polyglandular deficiency syndromes, the porphyrias, amyloidosis, and others. | | Pathophysiology_of_the_Endocrine_System Presents a tour on the mechanisms of hormone action. | | Health_iafrica_com Basic questions and answers about various cardiac diseases. | | University_of_Michigan_Cardiovascular_Center Information for patients and families concerning congenital diseases, surgery, and preventive programs. | | Atlantic_Clinic_For_Communication_Disorders A private clinic dedicated to providing a full range of individualized speech-language pathology services to children and s. | | Central_Florida_Speech_and_Hearing_Center Details about CFSHC's and their mission which is to provide the highest quality speech, language and hearing services. Includes news and events, services and FAQs. | | Communication_Disorders_and_Sciences A metaguide to internet resources about communication disorders, designed for professionals and students in the fields of speech-language pathology, audiology, speech science, persons with communicati | | Communication_Disorders_and_Sciences_at_the_University_of_Oregon Coursework in the CDS program includes classes in speech, language, hearing sciences and disorders, as well as classes in counseling, cognitive rehabilitation, research methods, and service delivery. | | Communicative_Disorders_Assistants_Association_of_Canada A resource for CDAAC members, persons interested in information about communication disorders, and for those wanting career and membership information. | | HearingVision Introduces new methods of communication assessment and therapy for people with age-related sensory losses and their communication partners. Textbooks, evaluation/rehabilitation materials and simulati |
|
John and Goldenhar's Syndrome About Goldenhar's Syndrome Causes of Goldenhar's Syndrome Goldenhar's Syndrome has been blamed on at leastthree culprits. The main one is exposure to hazardous chemicals,particularly in the workplace. Some instances are blamed on virusesduring pregnancy. Still, others appear (RARELY) to be hereditary.Cause of MY case of Goldenhar's Syndrome My case of Goldenhar's Syndrome appears to be causedby my mother's exposure to chemicals in the workplace. She workedat a chemical plant at the time of my conception (1966). She doesnot wish to disclose the name of the plant that she worked at. Also,she can't remember what chemicals were dealt with at that time.Prevalence of Goldenhar's Syndrome inthe United States Goldenhar's Syndrome is a rare disorder. In1967, the year that I was born, there were only about 200 cases in theU.S. However, after the Gulf War in 1991, this increased due to thechemicals and such that these veterans were exposed to.Likelihood of Malformed Offspring Thank God, this condition is not passed on easily. The likelihood of an affected parent passing this on to the offspring isabout 1 in 200.Symptoms of Goldenhar's Syndrome Symptoms can vary widely. However, two commonfeatures that doctors look for when diagnosing this disorder is facialasymmetry (the two sides of the face not being equally developed) and oneor more small ears or ear canals. In some cases, there may be breathingdifficulties, sleep apnea, mental retardation, and other physical abnormalities. Also, such people are also much more likely to develop allergies, particularlyunusual ones. Here is a list of allergies that I have: Eyelubricants (probably all of them) Aspirin Right-Guard antiperspirant Penicillin Zest bar soap Ancef and/or Demerol Black Flag insecticide (even if I'm not using it) Sulfa drugs Roach Motels Paxil Chocolate (only in large amounts) Possibly Scotch Guard (even if I'm not Surgi-Lube using it) Symptoms That I Had The initial symptoms that I had included severe facialdeformities, which included double cleft lip, cleft palate, missing eyelidsin the left eye, flattened nose, misaligned jaws, and a couple abnormalitiesof the right ear. The right ear is slightly out of alignment andhad a VERY SMALL canal. I also have impairments of my speech, hearing,and vision. As for my speech, I had extensive speech therapyand did get to where the majority of people can understand me. Itis mainly those with moderate or severe nerve deafness that have the greatestdifficulty with me. HOWEVER, I can kick some butt with my singing,THANK GOD! I was also plagued with stuttering through much of mylife. When I was a kid, it was intermittent and short-term. However in 1978, it became chronic, but involved the letter 'B'. In 1982, it got MUCH worse and involved letters such as CH, D, F, K, P,Q, W, T, and Y--in ADDITION to 'B'. In early 1984, I had professionalspeech therapy from a therapist that was qualified to deal with stuttering. The odd part is that in 1996 when I went to West Virginia University (WVU),most of my stuttering was cured practically overnight. I think thatthe reason for this was because when I started going to WVU, I startedto live much more independently and was "let out of the cage." My hearing was affected by a couple of things--Goldenhar'sSyndrome and also a slew of infections in my left ear (otiitis media). Right now, I can hear about 40-45 decibels on most frequencies. However,I have a substantial impairment on very low frequencies (below 100 Hz). As a result, I have an awful time hearing thunder in a closed up house,unless it is practically on top of me. In my right ear, it takesaround 55-65 decibels for me to hear anything. I wear a Telex in-the-ear(ITE) hearing aid in my left ear, which normally does wonders for me. As for my vision, my left eye is basically blind,although I can see objects and color to a certain degree. My righteye is usually around 20/70, sometimes 20/60. However, this is aproblem with RESOLUTION, not focusing. Even when fitted with idealglasses, I am hard pressed to get much better than 20/60. However,my color vision and night vision are pretty good. My color visionis so good that a 256-color display looks kind of yucky to me. Ihave to have at least 16-bit color (65,536 possible colors) on my computer. As for reading books, computer screens, or instruments, I just have toget closer than most people. Due to my vision and other problems, I have beenunable to drive a car safely. HOWEVER, I do fine in small vehiclesor in certain situations, such as driving a tractor to mow grass. My biggest handicap when driving a car is reading road signs. WhileI was fitted with a couple pairs of bioptics (glasses that have a miniaturetelescope in one or both lenses) and can drive with these, my sleep apneaand possibly my allergy medicine made me a hazard on the road. Oddlyenough, I am able to drive a large (250 cc) gas-powerd two-wheeled scooter,which is much like a motorcycle. However, I seem to have problemswith speeds beyond about 45 MPH or so. I also have a STUBBORN case of sleep apnea. It has defied many treatments, such as CPAP machines, BiPAP machines, nighttimeoxygen, and more. My nighttime oxygen saturation has been known togo down as low as 59%, and this should not be below 90%, and DEFINITELYnot below 85%. I was also known to quit breathing 70 times in ONEHOUR! However, a tracheostomy with a Montgomery cannula put a swiftend to this, but not without some backlashes by "Mr. Sleep Apnea'. Needless to say, I had some psychological problemsdue to this mess. I have had problems with stuttering and later withdepression. Surgical History It is believed that I had about 35-40 surgeries sofar in my life. Most of the surgeries from 1967 to 1980 were doneat Riverside Methodist Hospital in Columbus, Ohio. In 1981 to 1983,I went to the Ohio Valley Medical Center, which is in Wheeling, West Virginia. This move was prompted by a school speech therapist and for convenience. However, after a failed jaw surgery, they backed off a ways. In 1985to the present, I have been going to Pittsburgh, PA to get things done. There, I was in Presbyterian University Hospital, Eye & Ear Hospital,and Montefiore Hospital. These are all connected together in onelarge complex, which also ties in Children's Hospital, Faulk Clinic, andthe Kaufmann Building. Also, here is what I CAN ACCOUNT FOR MYSELFwhen it comes to surgeries:1972 or 1973 -- Had left eye opened -- partial recollection of thissurgery1973 -- Having my left eye grafted over with skin due to very rapiddrying1973 -- Had drainage tube implanted into left ear (under general anesthesia)1974 -- Possible repair of pharyngeal flap (at least some sort of mouthsurgery)1978 -- Had left side of lips sowed closed, for opening extended toofar to the left1979 -- Part 1 of removal of excessive lip mass and adding it to theupper lip--required a lip tissue in MIDDLE of mouth for about THREE WEEKS!1979 -- Part 2 of this surgery1980 -- First nose surgery1980 -- Smoothing out of lower lip1981 -- Tumor removal from right eye1981 -- Opening of left eye1982 -- Had first eyelid repair done on left eye1982 -- Jaw surgery #1 -- 7 hours -- A FAILURE! I was reluctantto have it done. So much so that I had thoughts of cutting off my mother's circulation inat least one of her arms in order to impair her ability to take me to the hospitalfor this surgery. I even had thoughts of placing a bunch of cicada shellsin her 1977 Grand Prix to scare her away from driving me to the hospital!1982 -- Jaw surgery #1's SECOND INFECTION! This required a 2-3inch tube to implanted into my chin.1982 -- Undoing of much of jaw surgery #1! Bone graft was DISSOLVING!1983 -- Had second eyelid repair done on left eye1987 -- Had graft taken from right eyelid to better match the colorfor the left upper eyelid1987 -- Jaw surgery #2 -- 9 hours AND spent a night in HELL (ICU recovery).I darn near DIED due to suffocation due to problems caused by an ENDOTRACHEAL TUBE! I was light-headed AND the alarm went off on the pulse oximeter(which also measures oxygen saturation)!1987 -- First infection of jaw surgery #2. Right side of my facewas opened up to drain the pus.1987 -- Had to surgically drain out pus from the above infection makinga bad comeback.1989 -- Jaw surgery #3 -- came close to losing three good teeth afterwards!1989 -- Had to get a new canal for my right ear (taken from right leg),due to an anaerobic infection, which stemmed from the infection from jaw surgery #2!1989 -- Had periodontal surgery done1990 -- Repair of pharyngeal flap, in addition to attempt to repaira hole or two in the roof of my mouth (hole(s) opened back up)!1992 -- Second nose surgery -- GOT INFECTED!1992 -- Had segment taken from left lower eyelid1999 -- Had tongue advancement surgery done to help with sleep apnea--justreduce snoring2000 -- Had a tracheostomy with a Montgomery cannula. This isa last resort treatment for severe sleep apnea2001 -- Had left eye sewed closed due to it drying out severely ANDbeing allergic to every brand of eye lubricant, including the preservative-free variety2001 -- Second attempt at sewing left eye closed, for it partially openedback up after the first attempt Note that does NOT account for the many surgeries that I had prior to1972! Click HERE to see a spreadsheetconsisting of all my surgeries since 1972 and even a few beforethat! You'll also see a 3-D pie chart showing what percentageof my surgeries occurred on whichdays of the week! That's what you call an O.R. special! Below is a list of surgeries that I may face in thefuture: Another attempt to patch a hole in the roof of my mouth in order toprevent food from getting up into my nose. While this type of surgery is minor, ithas a high failure rate. To make a long story short, I can't seem to keep my hind end out ofthe operating rooms! Needless to say, I have been an "O.R. special!" School History In 1972, I was first sent to Crippled Children'sSchool in Elm Grove, West Virginia. However, a teacher by the nameof Sue Langmyer transferred from there to Limestone Elementary, which isin Limestone, West Virginia. She felt that I had more academic potentialthan other children at Crippled Children's School and sought to have metransferred to Limestone also. This permission was granted by theMarshall County Board of Education. From 1973 to 1980, I prospered at Limestone ElementarySchool and performed about average to slightly above average among otherkids. My only academic deficiency that I had was in reading comprehension. My biggest problem that I had in grade school was a significant numberof enemies. However, I caused much of this problem due to squealingon kids needlessly. This was a lesson that I learned the hard way. Below is a picture of this school. In 1980 to 1983, I went to Sherrard Junior High,which is in Sherrard, West Virginia. I was granted permission togo to this school because I went all those years through Limestone Elementary. My performance was about average to slightly above average. As forthe problem with reading comprehension, this was alleviated by a remedialreading class that I had to take in the seventh grade. When I wentinto Sherrard, my reading comprehension was comparable to someone in thetail end of the fourth grade! When I finished up this class in theseventh grade, I was functioning on a ninth grade level! In the ninthgrade, I majored in Computer Literacy and Industrial Arts and got A's inboth. Luckily, the number of enemies dwindled as I continued to tryhard not to be known as a tattle-tale. Below is a picture of thisschool. From 1983 to 1986, I went to John Marshall High Schoolin Glen Dale, West Virginia. I did not have to have special permissionto go there, for this school is local for Moundsville, Sherrard, Limestone,and Glen Dale students. Again, I did about average to slightly aboveaverage--EXCEPT IN AMERICAN LITERATURE! My grade point average (GPA)was 2.675 for my high school years. As for America Literature, Ihad three nails in my "coffin." The first one was due to the contentnot interesting me; Even though I read the stuff, it went "in one eye andout the other!" The second problem was that we were tested on thelittle details a lot. The third problem was that a tough gradingscale was used; You had to have a 70% to even get a 'D'. I majoredin computer programming and woodworking. From 1986 to 1989, I didn't go to college or workdue to the many problems that I had. With two or more surgeries ayear on average, I would have not been able to sustain much when it comesto steady employment and such. However, I did do a lot of computerprogramming and such for enjoyment. In 1990, I finally started going to college. I went to Belmont Technical College to be a medical assistant. Igraduated in 1992 with a whopping GPA of 3.72. However, even afterlooking for work in FOUR STATES, I could not get a job even close to whatI wanted. I so badly wanted to be an EKG technician. Belowis a picture of this college. In 1993, I went to Belmont Technical College againto be a practical nurse. However, I was having some problems thatI didn't realize that I was having. Instead of my instructors lettingme know my faults, they told West Virginia Vocational Rehabilitation (whowas paying my way) about this! As a result, WV Vocational Rehabilitationquit paying my way! From 1994 to 1995, I was running around with hardlyany sense of direction. WV Vocational Rehabilitation did say thatI could go for schooling in one of four areas that they said I tested wellin. These included computer programming, nuclear medicine, biomedicaltechnician, and electronics repairs. Shortly afterwards, I decidedto go for biomedical technician. However, I almost lost $35 on anapplication fee to Penn State when they lied to us about the outlook inthis field being good. In reality, the outlook in the northern panhandleof WV and western PA was POOR! After finding this out, I was reallylosing sense of direction. In 1996, I started going to WVU. In early 1996,I could not decide whether to go into Computer Science or Computer Engineering. After some interviews with several professors, I found that Computer Engineeringwas more my speed, due to my inventiveness, creativity, and taste for unusualprogramming. My GPA normally ran around 2.5 until my depression andburnout really got out of hand, and then it DROPPED--BIG TIME! Inthe Fall of 1999, my semester GPA was 0.93! When I started goingto WVU, I had my own apartment and was able to live independently. Below is a picture of West Virginia University's downtown campus. It was shot from Arnold Apartments, Apt. 810. Recommendations for Others withGoldenhar's Syndrome If you or any of your children (if you have any)have Goldenhar's Syndrome or suspect that you have it, PLEASE find a GOODplastic surgeon. Don't fart around with some "local guy" just becausehe's across the street or even a few miles away from home. WhileI live in Moundsville, West Virginia, the best choice for me was Pittsburgh,PA--about 65 miles from home. Also make SURE that your doctor isfrom a Christian background, for you don't want some money-hungry or scalpel-hungrydoctor ripping you open. Please be aware that while a local plasticsurgeon may have gotten very good results on a friend or neighbor, treatingproblems due to Goldenhar's Syndrome is MUCH more difficult and requiresmuch more artistic surgical skills, as opposed to someone that has beenin an accident or horrible crime. It is IMPERATIVE that the facedoes not appear as if the person is retarded. I have had some instanceswhere people thought I was retarded, simply because of my facial deformities. This even happened at a local flea market when my mother and I were sellingthings. Some slime-ball thought he could rip me off, thinking thatI could not even count!My Current Standing As of May 18, 2003, I FINALLY graduated from WVU,but not without a hard struggle due to continuing depression (due to severeand ongoing loneliness) and continued problems with allergies. Iam currently looking for suitable employment. I fired up my own computerbusiness on January 11, 2005. I do PC repairs and other computerservices. The name of my business is Knoz'em Computers, LLC, whichis based in West Virginia (USA). Go to My Photo Gallery Return toMain Menu |
|
