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(CLICK EMAIL ABOVE TO SEND YOUR COMMENTS) Debbi Jean has been kind enough to share her experiences related to dental problems associated with Moebius Syndrome and possibly other factors. Comprehensive dental care is important for us all and seems to be even more important when Moebius is involved due to the typical smaller jaw size. Read Debbi's story below. Debbi sends in updates as the events unfold. I am not sure where you will put this query, but I have been going through a tough time, lately. I am a 43 year old woman with Moebius Syndrome. In 1998,
my teeth started chipping up and breaking off. I did not have dental insurance
and even the University of Iowa dental clinic refused to help me. I have gone
to four dentists trying to find someone to help me and nobody is willing to
try because of the Moebius and lack of ability to pay. FOLLOW UP EMAIL FROM DEBBI:
Hey T.V.,
Thanks for posting the dental problem I am having. I am afraid I may have
misstated how much money I am making, but it is $6.25 an hour at a day care
center and I am scheduled to work five hours a day. Sometimes, I am sent home
due to low child attendance and sometimes I work more hours, but it still is
not much of an income. Since I am married, my husband's income could be
counted too, but we are using everything he makes just to pay everyday living
necessities. Although not destitute, we have no money for dental care let
alone extensive dental care.
Just let families out there sign up for disability when their Moebius
children are little and get help with dental care early on. I really want this
next generation with Moebius to have a decent shot at adequate dental care.
Not many families have $26,000 laying around for one person's dental care.
I have had a good stroke of fortune, though. Texas Rehabilitation has
agreed to help me by paying for some dental work, but we have not been able to
find a dental provider yet. Most dentists are afraid to do anything. Problem
is, my teeth are falling apart and now I speak with a lisp and it made a bad
situation worse.
Thanks for caring T.V. Please stress to parents the need to push for
dental care that actually meets the need of children with Moebius. Dentist
even now tell me that the decay is my fault. The decay since 18 months of age?
Dentists need to be educated!:)
Thanks for being a great webmaster
Debbi FOLLOW UP EMAIL FROM DEBBI (3-26-04):
Hey T.V.,
I always thought my initials were great, but D. J. just doesn't compare
to T. V.
I was the one who wrote about dental problems and aging Moebius people. I
am forty-four years old.
Last April, my vocational counselor took pity on me (and a good look at
my bits and pieces of teeth) and sent me to a prosthodontist to be evaluated
for dentures.
Well, this week I went to an oral surgeon (appointment made by vocational
counselor) to be re-evaluated for surgical removal of 19 teeth.
The Vocational Rehabilitation counselor set up an appointment for me to
go back to the prosthodontist today for the first of two root canals on my
bottom teeth. These roots will be kept so that I will be able to get implants
in the future, using those two root canaled teeth as anchors for the implants.
Implants are too expensive for the government to pay for, so that will have to
wait until I get a job and can pay for it myself.
For the implants, I plan on begging the UTMB Dental School for
assistance. My hope is that some post-graduate student finds my need to be his
or her greatest desire to work on.
The reason I am looking ahead to get implants is that the prosthodontist
feels that the lower denture will slip and slide all over the place. He thinks
that the paralysis on the left side of my face will further exacerbate the
inability of the lower denture to fit correctly.
He is pretty sure that the dentures will cause my speech to be even more
garbled, but my teeth are in such disrepair that soon I shall have painful
abscesses and infections. In other words, time is not on my side in this
matter.
So, I go forward with dentures and pray that the result will be better
than this talented experienced (he once taught at UTMB's Dental School)
prosthodontist believes will occur.
You might want to add this to my update on your website. I definitely
will keep you posted as to how this turns out. I will probably send you a
picture then as it will be the first time I will have teeth without a giant
gap between the two front ones. :)
Thank you for this web site and the high quality information you provide
to people with Moebius Syndrome. Your little grandaughter is blessed to have
you in her life.
Debbi FOLLOW UP EMAIL FROM DEBBI (3-27-04): Dear T.V., The bad teeth are directly related to Moebius, something about lack of enamel and partial paralysis not moving germs in or through or something. I was born without the top two baby eye teeth or regular eye teeth, but I donot know if this is related to Moebius. I did have teeth removed when I was little because my mouth was too little for them and this is a Moebius issue. For me, it was probably the combination of Moebius and poor dental care. It did not help that I had sporadic dental care during my childhood (my first root canal was at age 14) and no braces as my parents could not afford tham. They did not want the government interfering in their lives, so I virtually received no help. The state's vocational rehabilitation department is helping to make me more "acceptable," for job interviews. The goal is to obtain a teaching position in Texas. Unfortuneately where I now reside thinks the best they can give me is an aide position. Very depressing since I have a valid five year teaching certificate for regular grades Preschool through Grade 8. I am fighting a steep uphill battle. Facial paralysis turns the educating world off and it is a shame since they have all types of children to teach. Diversity only counts if it is the child whois diverse, not the teacher, it appears. For your grandaughter, I am hoping that dental care is adequate during childhood. It will alleviate some of thep roblems I have had to face. I have, however, had several adults with Moebius write to me and they are having very similar problems with decaying, broken -down teeth and no where to find any help, unless they have five thousand dollars or more. Many Moebius Syndrome people do not qualify for governmental help as far as insurance is concerned. I know I didn't. Having five thousand surplus dollars is rare, also. The state of Texas has a very good vocational rehabilitative department and they found the prosthodontist who agreed to fit me for dentures. They also arranged for the oral surgery department on Galveston Island to pull the teeth in conjunction with the prosthodontist's instructions. The denture procedure is paid by the Texas Department of Rehabilitative Services. My next step with them will be to go out there and find a teaching position. What I have to do next is get a physical and have my regular doctor fill out an application form for UTMB's Dental School. If my case piques some student's interest, then I will get implants, but it does cost money and that will be my responsibility. In the best circumstances, the dentures will fit good enough for me to find a teaching job and then get implasnts after I am earning money. I will give the prosthodontist your website and see if he is interested in posting. I believe he is nervous about the procedure for dentures as he beleives they will not fit right, so maybe later he might post. I do know in order to accept government pay, he is asking only one third his normal charges, so he is doing me a favor. Since the dentures were ok'd by DARS, things will move more quickly. The implants may take a while, though. In any case, I will keep you posted. I just wish I could do more, like really get dental care to the many people like me who desperately need, but cannot afford it. The people who have personally emailed me are having problems and have little or no money, because of lack of or underemployment. Once, on televison I saw a sad statistic reagarding facial paralysis as being the biggest block to gainful employment (more so than deafness or blindness). I never forgot that, but wished I had never seen that. These days, far too many people shallowly judge by looks. Just having normal looking teeth is an improvement. Best get off my soapbox, huh? :) Since my first prosthodontic appointment , it was nearly a year wait for the money to be avaliabe for my dentures at DARS. Government does move slow. I hope this does answer some of your questions. I did not write this "post-ready," but can clarify more if you would like. Thank you for hosting this Moebius Site! You ara a life saver to more
people than you know! FOLLOW UP EMAIL FROM DEBBI (4-1-04): My next root canal will be next Monday. Then 19 teeth extracted and Dr.
Dominguez is sure the bottom denture will float hopelessly. You can post and or
edit any of the information I have given you. Quite frankly, the people
interested in this are adults anyway. Most children and teens do not as of yet
need to deal with dentures. This website has so helped me to not feel so alone
with Moebius and floating eyes and odd moving mouthand rotted teeth and this
masklike face and the voice that sounds foggy. Everybody used to say I would
always look young. The downside is that I garner no more respect with age, but
who does nowadays anyway? COMMENTS ON EMPLOYMENT (4-1-04):
I am 44 years old now. I obtained my teaching degree way back in 1982, but I
did not try to teach in a school grades K-8. I was pretty sure nobody would
ever hire me.
My first student teaching was with first graders. I did quite well, even
gave Spelling tests. My second student teaching assignment was a full nine
weeks in Hell. The teacher was a fluttering social butterfly too busy to tend
to her class. The class was wild and uncontrolled. I remember trying to read a
story to the class while she held an animated conversaton with another teacher
in the classroom. The most humiliating thing was when she brought the
Principal in and said,"Look, I told you that she cannot control the class!"
So when time to evaluate came around I went to the Principal and demanded
a fair assessment. The only minority she supported was the black minority. I
told her that she was prejudiced against people with disabilities. It did not
help that my first supervising teacher and this woman hated each other and had
been involved in public fights. By the time I had to fight for my assessment I
was exhausted emotionally.
I went to my Vocational counselor on campus. He never returned my calls.
I went to my high school vocational counselor and the campus counselor was
fired, but too late for me. I withdrew.
My daughter was three years old. I taught at a local small preschool that she
attended. I then worked in a day care center. The Director never let me work
with children older than three years old. Those fours and fives always went to
somebody else. He almost did not hire me to teach twos and threes.
I stayed in day care making very little money. Finally, my husband got a
new job in Texas and I went to the Texas Rehabilitation Commission to obtain
help in finding a job. Any job would do. I was willing to even work in
Wal-Mart.
My counselor insisted that I was worthy and able enough to go for my
original goal of teaching. Counseling for depression and low self-esteem was
given, I passed the tests first time to get my Texas Five Year Teaching
certificate. I had two rather unsuccessful eye surgeries to try to bring down
my hpertrophic left eye and am working on the last physical help, which is
dentures.
I tried a part time job at a day care center here, but found out that the
laws in Texas are worse than those in Iowa for day care centers (nobody should
be stuck with thirteen two year old children alone).
While waiting for dentures, I desperately needed money. I applied at the
local school district. A friend even helped me to get an interview. I blew it.
I clammed up. I did not say what I wanted. Three women spoke as if I weren't
there. They decided I could only get to substitue aide in special education
classes, but not be allowed to substitute teach in regular classes. I nodded
dumbly, thinking that it was a foot in the door atleast.
When the note for the substitute class came I made sure to attend. I have
been called to su as an aide and do the work, but it is killing something
inside me that I cannot define. I really wish the administration would have
given me a chance to teach.
I checked into another district farther away. They would let me teach,
but only in special education classrooms. It did not matter that I had only
one college class in special education and know next to nothing about it. I
haven't followed up on that.
So here is my dilemma. I am about to finish with Vocational
Rehabilitation and do not have any confidence that I will be allowed to teach
in a real school. Special Needs students are welcomed lovingly, but you just
try to enter a classroom as a regular education teacher and you'd best forget
it.
I am told to try other districts, but I lost my nerve the day Vocational
Rehab. sent me to a speech pathologist before getting dentures. She said she
used to work in a college and screened students before they were able to
student teach and she would not have allowed me to even student teach. She
told her younger assistant that I could not even enunciate a word like
configuration. She said I would say it, "contigoolaton," but she never asked
me to say the word and, as a matter of fact, I can enunciate this word. I left
in tears, feeling totally dejected. Just another,' holier than thou,'
administrator, but a shut out again.
Where is that one Principal who will really listen to me? Somebody who
sees me as a teacher who can teach values as well as regualar subjects? How do
I better handle interviews? Why do I get blindsided after all these years when
the interviewer puts on the, "Oh, I see you are less than me," attitude?
Is it true that the disabled can get an education, but it is nearly
impossible to attain employment? Where do I go from here?
Debbi DENTAL WORK A POSSIBILITY (8-7-04):
Hey T.V.,
The reason I have not updated you with my dental surgery is because I
have not had it yet.
The vocational counselor decidded to utilize my husband's United Health
Care Insurance and that meant getting an okay from my general practitioner for
teeth removal. All would have been welol, but for the acute anemia. So, I was
on double doses of iron for a month and scheduled for a pelvic ultrasound,
uterine cancer check, colonoscopy and endoscopy. The cancer word was used
frequently as they tried to determine where the internal bleeding was coming
from.
When all was said and done, it ended up only being perimenopausal
bleeding that caused the anemia. Great news considering I had been
anticipating cancer of some sort.
So, the okay has finally been given for a pre-op appointment on Tuesday
August 17, 2004, at U.T.M.B. After the thought of seriously losing my life due
to cancer, losing my teeth should pale in comparison. Yet, I am terrified of
being toothless.
Technically, what is happening is that they are pulling all but four of
my teeth, which will then be whittled down to stubs that will give my dentures
a little something to hold on to. The irony is that I must brush these little
stubs and treat them as the real teeth that they are.
Then I desperately need employment. The teaching profession seems to be
an impossible goal. All I really want is a job where I will belong.
I will write more of the exciting dental adventure as it unfolds,
Debbi Jean
TOMORROW IS THE DAY !!
Hello!
Today is Thursday September 9, 2004.
I went in to the prosthodontist this morning and had my four eye teeth
whittled to stubs. I am keeping these teeth so as to retain bone structure
and am glad this is the way it is being done. The four teeth in question
were root canaled (two recently and two several years ago) so they did not
cause me physical pain while Dr. Dominguez whittled them down.
Last week was the pre-op at Galvestons's Oral Surgery Clinic. Of course
they took blood as anemia has been such a recent problem for me. Evidently,
I have been cleared for this surgery tomorrow.
Aside from the physical, there have been some emotional ramifications I
had not anticipated.
My front teeth are spaced apart and have always reminded me of a Bucky the
Beaver type of look and I have hated them. My back teeth caved in and
crumbled years ago. My bottom teeth are chipping off bit by bit. Still, they
are mine and they were supposed to be "permanent," teeth. I am
mourning them a little today.
This morning I had my husband take pictures of my teeth. Unflattering
pictures. I intend to send them to you as attachments in addition to
pictures of the healing process.
I wish somebody had done this for me before smile surgery, because I
had no idea a head could swell so much! :)
Tomorrow, it is surgery day and the dentures will be placed. From what
I hear, the dentures remain in the mouth for 24 hours after surgery. I am
told the real fun begins three to five days after surgery, when the pain
sets in. I will be prescribed heavy duty pain killers and I intend to take
each and every one of them. So, i will be fuzzy mentally for a time. More
so than usual, that is. :)
I will update as soon as I am able.
Enjoy the day!
Debbi Jean
PAIN KILLERS ARE A GOOD THING: In two hours the good pain killers wear off. You know, the stuff they put in the I.V? :) I was scheduled to be at UTMB in Galveston by 7:00 A.M. By the time we reached theisland we thought we were pushing it for time. Should have known better. My husband checked the sign in sheet and ther had been seven people scheduled for the same time and we were the fifth to arrive. Accountants always count everything :0) . After a cursory urine sample, I hung out in a patient type waiting room, complete with cable television. My husband would wait in that nice little private room while I was being operated on. I like those little rooms as they are nice and homey. Around nine in the morning, a nurse came to get me with the operation room gurney to cart me away. My husband trailed along. They let him be with me until I was I.V.'d and rolled in the operating room. I overheard the staff calling this the hoding room, but I think of it more like a holding pen :). I had my note from the prosthodontist, Dr. Dominguez in my hand and was anxious to tell them to leave in teeth number 7, 10, 22 and 27. I really want to retain as much of my jawbone as possible, thank you just the same. Through the years I have found it best to be honest and up front with doctors about to give me an I.V. I tell them I panic and find it painful. I thank God that recently the nurses and doctors no longer pooh pooh my sentiments and tellme tha I am being silly. When I was thirteen and fourteen and getting my first and second eye operations that is exactly what I was told. The only result there was anger that they did not seem to care about how I genuinely felt. I.V. insertion has come a long way since then, but I still panic. Today, the numbing solution was given early enough to really do the trick and the I.V. was inserted with professional perfection. I made sure to tell the young doctors (Dr. Zwicke was my lead surgeon) that I had had the temporal muscle transplant and that if the muscle was sliced through then my left side would be totally paralyzed again. He reassured me that they would not even be by the cheek and would surely be careful. Once a dentist slipped with a drill in my mouth and sliced my left cheek on the outside and it bled. I told them that today, because it did happen to me once and that dentist always said my left cheek was just too tight to get in and work on adequately. In any case, Dr. Zwicke put his fingers in my cheek and said it was plenty pliable. Those kinds of words really made me feel I was in good hands. Ever wake up in a hospital room to disturbing news about yourself? The heart was pumping way too fast. a problem. I waved and motioned for them and pointed to my heart. They knew I had heard and told me not to worry. I tried no to, but then they shot some heart medication into my I.V. I was supposed to be gone for two hours, but after two hours the doctors went to my husband with good news. I made it through the surgery fine and the dentures fit well and sure looked pretty. I can thank Dr. Dominguez's talented touch for these beautiful dentures and fully intend to. The list of Thank Yous is a long one, with my vocational counselor, Robin Robbins and the DARS staff who have been working on this for so long. I am so very grateful. Four hours later the heart medication had been effective and I as wheeled into the cute little room to get ready to go home. I shouldhave told then I do not wake from sedation well. I want to sleep and sleep. The doctors came in and put the dentures in and reported they were happy with the surgery and there were no problems with it. I wrote a note about the heart thing, what about that? They said they checked with my other surgeries and found that this always happens to me. I have been sedated four times in thelast two year. Twice before today at UTMB for eye surgeries, so they had recent data. They said it was probably stress. Not hard to believe as I was very anxious. I had a mouth full of bloody gauze and no dentures when I was reunited with my husband. The sweet and kind nurse just wasn't sure when they would be put in as this is done differently by different doctors. I had the ice pack on one side of my jaw and then the nest for twenty or so minutes each and I dozed. And I dozed. Finally I went to the rest room and tried to drink ice water. It dribbled allover along with my blood. I hate to see my blood, knowing I have anemia and need to keep my blood inside of me (ha ha ha). Things were tight and things were wiggling (the gauze and dentures, respectively). I refused to drink for a while. I dozed ZZZZZZZZZZZZZZ. Well, enough was enough. I ate ice chips, put on my clothes and was wheeled to our car where my husband drove us to the store. I bought soft and cold food. That is it for 24 hours. Soft and cold. Should not have gone though. I looked down at the cart and blood flowed down to the floor. I mopped with the clean gauze in my hand and was embarrassed. Well, with the anemia stuff, at least I know there is nothing contagious in the blood (ho hum). I may be in intense pain tomorrow, so write I am while the good drug is in my system. I made it through and am now going to get another unflattering picture taken. :). Stay tuned for upcoming news from the Denture Front ;) Debbi Jean
DAYS THREE TO FIVE ARE THE HARDEST
Days three to five were supposed to be the hardest. I am eagerly
anticipating the end of this (the fifth) day.
By now my lips are dry and cracked and Blistex works only a short
time. The lower jaw swelling is going down a bit, but my eyes and the
bridge of my nose iare myriads of yellows, blues and purples. It hurts to
wear my glasses.
On Thursday I go back to the prosthodontist. By then, I am hoping
that I will have stopped bleeding from my upper gum. Just the thought of
going to any doctor to look at my gums is painful at the moment.
My Hydrocodone is nearly gone. The 600 mg. Ibuprofen doesn't cut the
pain much. Swallowing with swelling and dentures in my mouth has been a
challenge, also.
The swollen face has made it hard to talk, so I haven't found out
whether my enunciation is better or worse.
The hospital staff was right in asserting that the third through
fifth days are the hardest. Well, it is almost finished. Tomorrow is Day 6
:) .
Hurtin' near
Houston,
Debbi
DAY FIVE Dear T.V. Speaking of pictures, I should have my husband click off a few today. The swelling has gone down a bit and the stitches are beginning to fall out. Yecch! By Saturday I was too psyched out to write. The trip to the prosthodontist was wrenching whenit looked as if he flinched when he looked in my mouth. The trip to UTMB was no better. My blood pressure sky rocketed to 192/84. The second reading was high, but within reason. The prosthodontist wants me to revisit in one and a half weeks and the doctor at UTMB wants to see me in two weeks. Whatever denture liners are doesn't much matter as I do not get one until I visit the prosthodontist next. I left the prosthodontist armed with Orabase for mouth pain and I left the UTMB armed with a prescription for antibiotic mouth wash and a lidocaine mouth rinse. I am not sure if I am ready to use a total mouth numbing mouth wash and have not filled that one yet. I can talk and people do understand me, but I am still pretty swollen on the left side and numb in places. In the worst case scenario that numbness will not leave. I have decided that I am not going to be the worst case scenario :) . I guess I will go get a photo taken. FIFTEEN DAYS AND COUNTING
Dear T.V.,
It has been fifteen days and the swelling, although down, is still
present. When doctors say the stitches will dissolve on their own, what they
really mean is that stitches will dissolve from your mouth tissue on their
own and you will be spitting them out. It has been making me queasy for four
or so days now.
On Monday I go to the prosthodontist for denture liners. I am not sure
what those are, but I hope they make the dentures remain in my mouth when I
attempt to bite something, because right now I am healed enough to try to
bite, but when I do the dentures on the bottom just jump out with the food
and makes for a choking panicky experience, let alone how this must look.
I cannot get my computer to send attachments, so if you would give me
an address, T.V., I will mail you the duplicates of the pictures we have
taken. A few might be missing ,though, as we have taken some of our little
hedgehog, Fluffy. :0)
Thanks for your excellent website!
Debbi
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