Andrea Carlomusto is a fitness trainer in great physical shape, but it has been a tumultuous road to get her body in peak condition, with a detour through anorexia where she weighed as little as 55 pounds and doctors had given up and sent her home to die.

Due to her own research efforts, Andrea survived anorexia, but is now dealing with years of pain, looming bankruptcy, and crushing stress due to repeated dental errors that caused a stroke and pain so intense people commit suicide to escape it. Andrea has tried every avenue to get her teeth fixed, but meets successive roadblocks and dead ends.

It turns out dentists have little oversight and less accountability - some of them are going for a weekend course to learn dental procedures from  dubious dental teaching organizations, and then start practicing on unsuspecting patients, charging tens of thousands of dollars and causing permanent damage. 

Andrea is one of an exploding number of people coming forward to share their dental nightmare experiences.

Opera and Anorexia

0:05:30 Andrea grew up in Livonia, Michigan, a suburb of Detroit - family of 6, Dad an Italian immigrant - happy, artistic, encouraged to sign and dance, school a big focus, involved in sports - no coddling, and Andrea appreciates that - very straightforward family - after high school, Andrea moved to California with her band, but they decided to be actors instead - Andrea was homesick and returned to Michigan 0:07:30 Andrea considered the military - Andrea is also a singer and got a scholarship to college for opera singing and attended it in downtown Detroit, but lost the scholarship due to health issues - from age 8 Andrea had an eating eating disorder - in her early 20s she was as low as 55 pounds - it caused a lot of damage to the body - she couldn't walk, her family was waiting for her to die 0:08:30 Since she didn't have health insurance, she was put in the 'nutty bin', but they couldn't do much and sent Andrea home to die - but Andrea started researching to get herself better because she did not want to die - Andrea thinks it was a lack of control that caused her eating disorder, but it is complex 0:09:30 Focusing on the obsessive compulsive aspect rather than the 'I'm fat' aspect as Andrea never thought of herself as fat, she was playing mental games with herself that she took to far - she uses that insight to help her clients in her fitness biz - control issues, perfectionism, making every one happy, people pleasing are aspects 0:10:30 Poor diet, lack of calories plays with hormones and neurotransmitters contributes to mental health issues in eating disorders with a perfectionist attitude - Andrea has done a lot of research since because health care providers don't understand - they try to help, but there is not enough research - Andrea says there is a lot of lying and manipulating by patients, but people don't want to tackle that 0:11:30 Key to recovery is focusing on something healthy to obsess about - for Andrea it was research - and she loved fitness - and she loved life and wanted to experience as many things as she could, and that was the key to her recovery - eating healthy is easy now 0:12:30 Andrea doesn't have the same urges to diet, or the same thoughts when she looks in a mirror - since she's been at the edge of death, she never wants to go back there - the eating disorder for 20 years caused a lot of systemic effects in her body: hypertrophic heart, weak esophageal sphincter and scar tissue on her esophagus, anemia, endometriosis, can't have children - Andrea stopped going to doctors when she got herself better because they didn't understand eating disorders or the systemic effects     Botched surgery   0:14:30 Andrea was doing well until her body stopped urinating and passing bowel movements, very painful, went to ER and they said she had IBS, Andrea said she knows she has that, and these symptoms were not IBS - then they said she was constipated - Andrea told then no, her muscles were frozen down there, they won't move - she suffered for a year with many tests and they said they couldn't figure it out - they decided to give Andrea a hysterectomy 0:15:30 Sometimes endometriosis can 'strangle' organs in the abdomen - they said they would do 3 procedures but it was botched and Andrea experienced extreme pain, she thought she was in Hell - out of surgery, the stitches had already broken - they didn't remove all they said they would - they didn't give her antibiotics so she had multiple infections but they said Andrea was crazy, until they saw green oozing out her wound 0:16:30 Very difficult and painful - Andrea uses comedy to cope, make fun of herself, focus on clients to deal with pain - Andrea needs to keep it light, but it did affect her a lot - her weight lifters needed her for their safety, so Andrea had to refer a couple of clients to others - Andrea went to the gym to get her heart stronger as part of her recovery from the eating disorder - she had osteoporosis so started lifting weights and doing her own routine at the gym 0:18:30 The gym owner asked if she would like to teach a class - she liked it and went to school to become a Certified Personal Trainer - initially helping people with eating disorders, or rehab - then got into body builders as clients - now Andrea is known as the 'problem solving rehab chick' - she does a holistic approach to training 0:20:00 The day after surgery, Andrea had a healing abutment come out of her mouth - when she had recovered from the eating disorder, Andrea had her teeth looked at as they were damaged and had jaw pain that was misdiagnosed in multiple trips to the ER - turns out she had an abscess in her jaw, so had that taken care of - they implanted cadaver bone in her face because the bone deteriorated 0:21:30 Andrea was also given a full set of braces - fast forward again to just after abdominal surgery, when the implant abutment came out - Andrea contacted a dentist to just fix that and was back in surgery for the abutment - the dentist asked if she had considered getting more work done, but Andrea said 'no' 0:22:30 But Andrea's best friend worked for the dentist and they said they would develop a care plan to protect her teeth - Andrea agreed but the dentist only worked on 1 tooth instead of 4, but adding 8mm to it and sent her home - Andrea couldn't eat, her jaw hurt, she couldn't speak, she was swallowing air and that would cause vomiting - the next day she asked the dentist to remove it and he refused, saying her symptoms were in her head, come back in a week

Getting dental work done

0:24:30 She lost 7 pounds that week - he removed it but made a snide remark to her - since her best friend worked for him, and Andrea had already paid a lot of money, she ended up apologizing to the dentist - that calmed him down and he said he'd replace the old fillings in her mouth, even though they weren't a problem - but he dug too deep and Andrea needed root canals from a different dental provider, and paying for that 0:26:00 Andrea asked dentist (her best friend's employer) to put crowns on the abatements (little screws that hold an implant, then they put an artificial tooth on the abatement) - he said he wouldn't do that, but would correct the chip he caused on her front teeth when he used a material that broke her tooth, in spite of Andrea asking it it was safe 0:27:30 Andrea declined, she didn't want the risk of him correcting it 'wrong', causing more expense - but she did allow him to close the gap between her front 2 teeth, but then he said she needed 6 teeth done - Andrea was nervous and asked for a temporary mock up so she could ensure it fit properly so she could eat 0:29:00 The mock up felt great so she went in for the permanent procedure - it took 6 hours - as a result her bite was a bit elevated, but no swallowing or other problems - but she was spitting when she spoke because of little spaces, she reported it to the dentist and he laughed about it - Andrea asked for a retainer to hold her teeth in place because they shift quickly (result of eating disorder) - he spoke down to her, saying he'd do it, but she didn't need one 0:30:30 A week later she was back at the dentist so he could do las 10% of work and stop the spitting when talking - but he sanded down her teeth, therefore eliminating all the occlusion (little bumps on teeth that help with chewing and 's' sounds) - that caused her lower jaw to shift back in her head and her muscles had to hold her face forward so she could function - she couldn't chew properly and this caused digestion pain 0:31:30 When he eliminated her bite, things went really wrong - she was berated for a month - Andrea had her best friend (his employee) sit in on Andrea's appointments to witness - Andrea had excruciating pain, and was like biting a car battery, metal on metal - she couldn't sleep, headaches, jaw pain and still couldn't eat 0:32:30 Andrea asked him to reverse the procedure, and he said he couldn't, it was gone - Andrea was dumbfounded and asked him what he did - he left saying he had emergency at home and would see her in a few days, leaving Andrea in a bad condition - for the next month she had many procedures while being belittled by the dentist - he had Andrea thinking she was crazy, insinuating everything was in her head     Suspicions confirmed: Dental damage   0:33:30 Visits to the dentist caused distress, fear of what he was going to say to her - after a month, Andrea went to get a 2nd and 3rd opinion, and her suspicions were confirmed: the dentist has screwed up and it would take $30k to fix her teeth - the dentist didn't want to take responsibility for destroying her bite, denying she even had a bite - it was a huge slap in the face 0:34:30 Andrea plays dumb with dentist and doctors in spite of doing her own research because she's aware of the ego that sometimes goes with these professions - Andrea likes when her clients come to her with questions, but she's never encountered that in health care - with her eating disorder past, she is discounted as a hypochondriac, that's why she avoids doctors and dentists 0:35:30 Andrea went to a couple of other dental providers, but they didn't know what to do - in December 2016 Andrea severed contact with that dentist - but she got back into the university dentistry in May 2017 - so she had to wait months while in pain, unable to eat, couldn't sleep, and had a nervous breakdown 0:37:30 Dental and health care providers were not listening to Andrea about the systemic effects of her past eating disorder - same with the folks at the university dentistry, they ignored all the health records Andrea brought - Andrea told them her jaw was unstable, but it took them 6 months to run the test to inform her that her jaw was unstable - so she had to needlessly endure pain for 6 months - she also told them her teeth were shifting, they ignored her, her teeth shifted so they had to remove more teeth, another $2,000 procedure 0:39:30 The university dentistry provided great service in 2008 - 09, but not this time - they retracted her gums and whittled away bone to try to make room for adjustments - Andrea had many stitches, another extraction and implant, and they put that in crooked - they whittled more away from her teeth, but that failed to allow product to fit and they tried to force it, hitting exposed nerves - so they put on temporary 'horse teeth' and Andrea can't eat or close her mouth 0:41:00 Andrea demanded they revert back to the original mold of her teeth - Andrea's fiancee took her to a dentist in Minnesota, and that dentist was appalled and told Andrea to see a specific specialist with specific skills in Michigan 0:42:30 Andrea found a specialist, who was also an instructor - 'occlusion' is how your teeth fit together in a bite - 'TMJ' dysfunction can happen when the joint is under stress - a complex condition - Andrea is in contact with organizations doing this type of research - and is very outspoken about her experience 0:45:00 Andrea met with the expert specialist in her area and he listened to her experience, or so she thought - he assured Andrea that he had a fool proof way to help her using a computer to measure her mouth - Andrea was thorough and asked a lot of questions - insurance would not cover the cost     'Suicide neuralgia' and stroke   0:46:30 The 1st step was to put a fixed retainer on her lower teeth to relieve TMJ pain, it was not removable - the computer was supposed to actually measure her mouth for the retainer, but it failed multiple times to find Andrea's natural mouth position - they finally took a measurement and she was told to come back in a week for the upper teeth 0:48:30 But the lower retainer was turned out to be twice as large as supposed to be, she could not shut her mouth, or eat, or talk - Andrea is still trying to work during all this - over next 8 months she had many procedures, told she had 2 root canals, but found out later it was only 1, and that would explain the pain - she was charged for x-rays they never turned out, so they missed the infections - ended up in ER for dental pain, hard to breathing, seeing, dizzy and was diagnosed with transient Ischemic stroke 0:50:30 Andrea went to the specialist 2 days later and they said she needed a root canal - Andrea had immense pain from the lower retainer and they had to rip it out - then Andrea developed searing pain up into her head, her eye wouldn't open - the dental specialist repeated the procedure, causing even more pain, causing another trip to the ER when it felt like she was being stabbed in the brain 0:52:30 Andrea went to a neurologist and was diagnosed with trigeminal neuralgia, a cranial nerve that controls feeling and movement in the face - also called 'suicide neuralgia' - the pain was constant and no medication had any effect - but the dental specialist then said the there is no such thing as trigeminal neuralgia, and that her pain was TMJ - Andrea couldn't eat so had to get calories from liquids, soft foods - it was torture 0:54:00 Andrea convinced him to use her original mold, but that didn't work - he kept making and ripping out retainers, causing intense nerve pain, but she couldn't take more pain meds because of her heart problems due to prior eating disorder - if only they would listen to patients - but she had over 2 dozen teeth ripped out with lots of pain - the neurologist then also diagnosed occipital neuralgia 0:55:30 As a result of all these botched procedures, Andrea's spine had become misshapen causing more pain - Andrea is managing pain and working - Andrea returned to the dental specialist many times and asked him to confer with Minnesota dentist, with neurologist, but he refused - Andrea was left with jagged metal in her mouth, puncturing her cheeks, making her gums bleed, and excruciating pain     Box of teeth   0:57:30 Andrea emailed the dentist and demanded a refund - a week later she got a box of teeth in the mail - Andrea called the dental manufacturer but they refused to release her records, only the dentist could get that info - she would have to sue to get her records - in the box of teeth was also a letter saying she would not get a refund as her case is finished - Andrea took the box of teeth to the Minnesota dentist who recommended the dental specialist 0:59:00 The Minnesota dentist was empathic, shocked by the box of teeth, showed it to his colleague - they gave Andrea 4 root canals - whereas the dental specialist in Michigan wanted to put permanent dentures on top of the dead teeth he caused - the box of teeth is evidence, this is going to court - Andrea is trying to figure out the ethics of health care professionals 1:01:30 The take away from her experience, is that health care professionals need to listen, and treat people how you want to be treated - but the egos, and fear of lawsuits get in the way - a lot of professionals act like what they say is law - it was 3 solid years of misdiagnosis, fail to diagnosis, unnecessary procedures and surgeries - the number of medical errors she's endured is insane 1:03:00 Andrea didn't go to a doctor for years, just listened to her body - the best doctors Andrea ever had were the ones who said 'I don't know, but I'll figure it out' - that instilled trust and more like a team - one of the doctors said he knew very little about eating disorders, that Andrea would have to teach him - she trusted and opened up to him - more team work is needed in health care - informed consent is important, but Andrea wasn't afforded that 1:04:30 Patients lose time, money, energy - dentists don't - they should concentrate on patient care, not covering up their mistakes - Andrea has spent close to $100k and is still no closer to being better - the Minnesota dentist has helped so Andrea can eat and sleep - but the last procedure it the hardest - Andrea had worked hard to go from anorexic and homeless to a healthy gym owner and had no money left, but the dentist wanted $50k to fix her 1:06:30 The manager of the dental office applied for a $25k loan for Andrea without her knowledge - they had her sign some papers, later found out it allowed them to take the $25k in one day without doing any work - 8 months later Andrea is worse and the work still not done and Andrea is facing bankruptcy - recently an entire dental board resigned over corruption, and a lot of those dentists trained at the same place as Andrea's harmful dentist 1:08:30 Andrea is in contact with other dental victims, some with worse experiences - but they are teaching these procedures to over-drill and over treat healthy teeth - dentists fly in from all over the world to learn these uncredentialled procedures - the boards and powers that be know this and need to take action 1:10:30 These experiences have turned Andrea into an advocate - speaking at Washington DC and recognized in Michigan on Eating Disorders Awareness week - Andrea has a small group of folks with dental injury who support each other     Connect with Andrea Carlomusto:   Twitter: @AndeCarlomusto   Website: http://rx-training.com   Instagram   Facebook ______________________________________________________________

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I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.

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Scott Simpson: 

Counsellor + Patient Advocate + (former) Triathlete

I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.

I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.

Thanks to research and access to medications, HIV is not a problem in my life.

I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.

 

Counseling / Research

I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. 

Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.

 

Patient Advocacy

I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.

Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.

My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.