I feel totally lost. I just saw my tmj
surgeon in boston on monday and he
informed me that I needed both my joints
replaced with artificial ones - this was
not what I was expecting to hear. I had
my first surgery about 20 years ago - the
doctor removed the miniscus on one side
and on the other - sewed it in place.
About 10 years ago I had my second surgery
- I had temporal lobe tissue implanted as
discs. This surgery has since failed - I
believe, due to the 3 auto accidents i've
been in the past 6 years. The doctor
will not redo that surgery, noting that it
failed, but I can't help wonder if the
accidents caused the failure and that
maybe a 2nd attempt should be given
consideration. I'm in the process of
seeking 2nd opinion and am sick to my
stomach. I have two small children and I
just feel like the future is so bleak.
Any thoughts out there?
Lisa
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catswolds
Experienced User , Rather EHEALTHy
Joined: 28 May 2006 Posts: 62 Location: Michigan
Posted: 02-15-07 22:04pm
Hi lisa,
i so understand where you are at and feel
for you. I have felt the same way too
many times over the 27 years of this tmj
nightmare and mostly because of
doctors/dentists who have all had
different opinions. I do believe you
should go for 2nd and 3rd opinions,
though, but not all should be surgeons.
Seek opinions from different kinds of tmj
specialists - regular dentists,
orthodontists, oral surgeons and from
teaching colleges.
Probably the one thing that kept me
together a couple of years ago is the
internet. I wished I had checked it out
earlier, and, that it had been around 27
years ago. I highly recommend doing all
the research you possibly can. You will
find lots of interesting and differing
information. I do believe the smarter
you are, the easier it will be for you to
know what to do.
What are you doing to manage your tmj at
this time? What have you done other than
surgery to help you? I must admit to
being very much against surgery as it is
irreversible and seems to do more damage
than good. I did check into
arthrocentesis a couple of years ago and
that's when I began my internet quest.
In visiting tmj support sites, I just
couldn't find anyone who had been helped
and there were many, too many, who had
been harmed by surgery. You have already
had surgery so it makes it harder for me
to know what to recommend.
Research and visit support sites. Do not
make any decision while you are emotional.
Anything you do decide should be
rational and make sense. Please take
care and let me know how you are doing or
if there is anything else I can help you
with.
God bless...
Carol
|
sexyscot76
Experienced User , Rather EHEALTHy
Joined: 01 Oct 2005 Posts: 66 Location: SCOTLAND
Thanks: 1
Thanked:0
Hi Lisa Posted: 02-16-07 07:55am
I know how you feel I have had 4 failed
surgeries, and will be having my 5th and
6th in the next few months. I had a
failed rib graft and failed titanium
implants, I am now having the lorenz
implants, first one within the next few
weeks and all being well the right hand
side soon after. I feel depressed a lot
of the time but my daughters and my
husband keep me smiling :d I feel I
have no option now but to have these
operations, as I am in despair most of the
time. Good luck with whatever you
decide.
Samara
|
abba
New User, Becoming EHEALTHy
Joined: 29 Oct 2006 Posts: 18 Location: York, North Yorks. England
Contemplating Surgery. Posted: 02-16-07 19:34pm
Lisa,
i cant add anything else that carol and
sam have not already said. Do not rush
into anything that you are not happy with,
a second opinion is always good, you have
to do what you feel is right for you. I
to have had a number of surgerys and the
last one was a total replacement which
failed and caused me a lot of trouble, so
don't rush into anything. I am having
another replacement in the near future but
that is because it is best for me, I am in
so much pain and am unable to work so this
is my only way forward.
My daughter was only one when I had my
first surgery and she is now 13 and its
amazing how small children adapt, it
becomes a norm to them, so dont worry
about the effects that this will have on
them.
How are you managing at the moment do you
have much pain?
Take care.
Lorraine
|
LisaV
New User, Becoming EHEALTHy
Joined: 15 Feb 2007 Posts: 17 Location: RI
Thank You Carol, Samara, Lorraine Posted: 02-23-07 15:45pm
I have been doing alot of research and am
quite certain I will not have the
replacements at this time. I've scheduled
an appt. with my orthodontist who
specializes in TMJ - I've been seeing him
since I was 19, so we are growing old
together - he just can't get rid of me! I
want to get his take on the situation.
I've also started taking glucosamine
sulfate which, from what I've read, is
supposed to stop further deterioration. I
had tried a glucosamine/chondroitin combo
a few years ago but it killed my stomach,
and having suffered from ulcers in the
past, I stopped taking it. So, far, this
is not bothering my stomach. I've also
switched to a soft diet and have really
altered my lifestyle - I try to chew
without opening my mouth too much and I
don't bite into anything or have anything
chewy, crunchy, etc...From what I've read,
after surgery you should never go back to
normal eating, however, my surgeon told me
I could and that the last surgery should
last me a life-time - what a crock. I'm
sure the three auto accidents didn't help
either. In the meantime, I've decided to
make the most of each day. I had my
little pity party - but things really
could be much worse - I'm quite certain a
person dying from cancer would change
places with me in an instant! So, I am
grateful everyday that I wake up and my
name isn't in the obituaries! I've also
stopped yelling as that bothers my jaw and
I've taken to blowing a whistle to get my
kids attention when they're acting like
animals and ignoring me.
Now I will be deaf also. Oh well, gotta
laugh - when life tosses you lemons or
limes - make a margarita and smile. Talk
to you all soon and will let you know what
I find out as I go along. Best wishes
with any treatments you have going on. I
pray for all of us.
Lisa
|
catswolds
Experienced User , Rather EHEALTHy
Joined: 28 May 2006 Posts: 62 Location: Michigan
Posted: 02-26-07 22:24pm
Lisa, your attitude could end up being the
best treatment for your TMJ. I know it's
a bummer that we have to change our
lifestyle for such a disorder. I have had
to do so and it has made a world of
difference. Working at changing my
posture, especially the shoulders, is
helping. Not yelling at the brothers is
probably good. Can you get some
good ear plugs? (And stay away from
cars!)
Keep up the research. It does help. You
might want to consider physical or massage
therapy to relax and retrain those
muscles. If you ever want to talk TMJ or
anything else, we'll be here.
God bless...
Catswolds
(and I got back my name Catswold)
|
catswold
Supporter
Joined: 10 Oct 2005 Posts: 404 Location: Flint, Michigan
Posted: 03-07-07 10:44am
Lisa,
How are you? Please let us know.
God bless...
Carol
(now Catswold)
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LisaV
New User, Becoming EHEALTHy
Joined: 15 Feb 2007 Posts: 17 Location: RI
Latest Update Posted: 03-15-07 20:43pm
Hello Everyone.
Well, today was interesting. I went to my
orthodontist, who I've been growing old
with, and he didn't have much to say
except "I wouldn't let them do that (total
joint replacement) unless I was totally
unable to function and in unbearable
pain." Then I spoke to my surgeon and
asked how long I could wait without making
it impossible to "fix" and he said I can
wait as long as I can stand it - so,
hellooooooooooooooo mushy foods for life!
I've changed my eating and have put on
some weight because of it - nice excuse -
it still hurts everyday, but not enough to
make me go under the scapel - yet. I'm
praying for a miracle. I've started
taking glucosamine sulfate and I'm hoping
I can just stop this in it's tracks for a
while. Why do today what you can put off
until tomorrow?! - my TMJ mantra. My
physical therapist can't really go crazy
with the TMJ issue until he gets my back
and neck in order - you know how it goes -
the jaw bone's connected to the neck bone,
the neck bone's connected to the back
bone, the back bone's connected...well you
all get the picture. I don't know if this
will be helpful to anyone, but in my
research, I found a night guard called NTI
- I cannot use it because of my surgeries,
but, it may be helpful to someone out
there who hasn't had surgery yet - google
it! My dentist swears by it, but I am not
a candidate. So, I spent $165 on a
hypnotist yesterday to make me stop
clenching in my sleep - guess how I woke
up...CLENCHING...UGH! Soooooooooo, I
called the little dubey and told him it
didn't work. He's having me come in again
next week, but I think he is over his head
on this one and should stick to weight
loss and smoking cessation. I also spoke
with a pshychotherapist who has a
doctorate in hypnotherapy - I've been a
very busy girl today - and she feels that
she could help me - however, insurance
will not pay for it - of course. I am
probably going to hook up with her - she
talked to me for about an hour on the
phone - free - very unusual for that
profession - seems to be very caring. So,
my advice to everyone is BE GOOD TO
YOURSELVES! I felt a little guilty about
the $$$ but I'm worth it and I've made
things worse by not doing these things a
long time ago. So, if you can do
alternative therapies go for it. So,
let's pray for each other - I do every
night for all suffering with this and
worse and then I get grateful for all that
I have and each day I get up and see my
little ones smile. They don't understand
all mommie's boo-boos, but someday they
will, and I hope they will understand that
I did my best under the worst
circumstances. Well, I definitely have
diarhea of the mouth tonight! Good night
to all! Keep on posting! God Bless.
Lisa
|
catswold
Supporter
Joined: 10 Oct 2005 Posts: 404 Location: Flint, Michigan
Posted: 03-18-07 09:57am
Hi Lisa,
You have been busy. Good for you! I
wanted to recommend that you include with
the Glucosamine/Chrondroitin lots of
Vitamin B12 Super Complex 100 or 50 and
Magnesium. The magnesium is supposed to
be particularly useful in combating
clenching and/or grinding. I think I read
once where you should take some calcium
with the magnesium and someone wrote on
here that you can take up to 1200 mg a day
of the magnesium. Oh, if you're not on
an anti-depressant, you might consider
taking St. John's Wort before bedtime. I
can't take it because I'm already on an
anti-d. I hope this is helpful
information.
Let us know how the hypnotherapy works.
That's an interesting subject. And I'm so
impressed with your attitude as I said
before. That really is the best
medicine.
Take care and God bless...
Carol
P.S. How did you get the capital letters
in your posting? Thanks.
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LisaV
New User, Becoming EHEALTHy
Joined: 15 Feb 2007 Posts: 17 Location: RI
Posted: 03-18-07 11:12am
Hi Carol.
Thanks for the support. I am only taking
the glucosamine sulfate right now, because
I read that it is superior to the "HCL" (I
believe that's the other form). I also
take it alone, because I was told by
someone very knowledgeable in the
supplement/natural health business, that
they should be taken separately because
taking the glucosamine with the
chrondritin inhibits absorption. I also
find that alone, the glucosamine does not
upset my stomach...yet. I do take a
calcium/magnesium supplement - you need
magnesium to absorb the calcium. It also
contains vitamin D which you need for the
calcium absorption also. I alternate that
with a regular multi-vitamin and I take
fish oil several times a week - it's
supposed to help keep the joints
lubricated. I'm doing more research on
the whole joint issue - some interesting
stuff - will update you when I've
completed my research. Pretty soon, I
will be ready for my degree in this stuff!
As far as the capital letters - I'm not
getting what you mean there. I just type.
I hope all is well with you.
We got hammered with snow this Fri. here
in RI. I thought spring had sprung - my
flowers were starting to sprout - mother
nature can play some terrible jokes on
us!
Take Care and God Bless.
Lisa