Trillium has recently seen a top, former military oromaxillofacial surgeon from Walter Reed Hospital, who specializes in TMJ pain, and has said he can treat her using Botox. Here is a link explaining how this works: Using Botox to treat TMJ Disorders of the Masseter Muscle
The treatment isn't covered by Oregon Health Plan. It will cost $2500 out of pocket.
After living with extreme pain for over half her young life, 15 years of her 28 on the planet, and after being told about this chance to finally be pain free, only to learn she can't get it covered, Trillium is losing hope.
She wants to be able to be there for her little girl. Annabelle loves her Mommy, she just wants to be with her Mommy...but Trillium has trouble even spending time playing with her because of the pain she is in all the time.
Fifteen years ago, when she was 12 years old, after years of attempts to manage increasingly bad sinus and strep issues, she finally had recommended surgery to take out her tonsils and adenoids.
This surgery is literally done thousands of times a day all over the US, with little to no side effects, and only rather mild post-surgical pain for a week or so.
But something was wrong...
Though Trillium seemed to have had no complications from the surgery, once the anesthesia fully wore off and they started regular pain meds, she started complaining of being in great pain well before the time for another dose.
The hospital staff tried everything, but nothing really helped.
The dawning realization...
Trillium was left with extreme, ongoing head pain...similar to a migraine...except that it NEVER stopped! At 12 years old, Trillium retreated to her room, covered the windows with blankets because the shades didn't darken things enough, and couldn't stand the slightest noises, most food, or stimulus.
We tried everything...
The assumption was that this was hormonal, and we tried every care provider from allopathic to homeopathic...they tried medications, they checked her thyroid, they changed her diet, they gave her herbs, a neurologist put her through a protocol of 3 week trials for each of 7 migraine medications...and not one thing helped. Finally, a chiropractor noticed her jaw was terribly misaligned. And we learned that, during the surgery, it was likely that they had dislocated her Temporal Mandibular Joint. Also, once we got her to a TMJ specialist, we learned that Trillium's earlier apnea had probably caused her upper palate to be misaligned with her lower jaw. This specialist was the first to notice that Trillium's masseter muscles--literally "massive" muscles that hold all the jaw movement and also interact with supporting the head and neck, connecting with every other part of the body through the spine and shoulders--were intensely clenched and never releasing.
So...extreme pain. Not a "migraine" and certainly not hormonal.
When you're the mom...
Watching your once healthy, laughing daughter, suffering constantly, trying desperately every possible thing, hoping every time that THIS will be the thing that helps. Feelings like, "It's been three WEEKS! How could this still be going on!" moved to "It's been three MONTHS!" and even worse...."It's been THREE YEARS!!!" And still...nobody could "fix" this.
When you're the one going through this...
How to even imagine? Not. One. Day. without this terrible pain. No more "normal".
Fifteen years later...
For Trillium's entire adolescence, and now her young adulthood, through attempting college (she is brilliant and did well for awhile), jobs, and pregnancy, giving birth, and mothering her now 2 1/2 year old daughter, Trillium has been in near constant pain. When your jaw muscles are constantly very tense, this causes your entire nervous system to send pain signals everywhere. Headache, neck, arms, down the back, every part of her experiences radiating pain. She has developed fibromyalgia, odd sensitivities and auto-immune issues. Her body is always on "high alert". And this has affected every aspect of life.
Trillium has tried diet, pain killers, physical therapy, yoga, braces, acupuncture, herbs, exercise, chiropractors, massage, if it's possible to try, she's tried it. Though some things do help, and things are definitely somewhat better in the summer, their effectiveness is limited and with the latest crack down on the "opiate addiction epidemic",(which is very real), Trillium's doctors have been less and less willing to help with even small amounts of pain medications to give much needed breaks occasionally.
It's hard to be friends, care for your child, hold down a job, or finish a degree when you can't predict from one day to the next whether the pain will allow you to even move.
One then develops anxieties, fears, traumatic responses to relatively slight challenges that remind of extreme pain that might come again. That WILL come again. Depression sets in. It's hard to go on.
Trillium is one of the bravest people I know...
It takes huge courage just to stay alive some days. To keep going and keep trying. Somehow, Trillium has done that. Always seeking some way to get through, to cope, to hopefully cure. But, she's having more trouble having hope.
Now, there is a chance!
Three weeks ago, Trillium saw a very special orthodontic maxillofacial surgeon, Dr. Matthew Jacks, one who worked for many years at Walter Reed Hospital as a facial reconstructive specialist for war veterans, and who is possibly the leading expert on TMJ issues in the nation.
He prescribed Botox injections to the muscles. Not just your standard "wrinkle remover", he has used massive doses of this treatment medically for those with terrible TMJ issues, and it has been successful much of the time.
He says that, because Trillium did finally get orthodontics in her late teens, her structural alignment is good.
So, using Botox on the muscles can finally cause them to break the feedback loop that holds constant tension. This, in turn, will allow relaxation for the first time in, really, 15 years.
What we NEED....$3000
$2500 for the Botox treatment:
Though this orthodontist can take Trillium's Medicaid based Oregon Health Plan, the Dental plan won't cover this treatment.
The Medical plan might be convinced, but this orthodontist isn't able to take it.
He says, because she must be anesthetized for this treatment, and the Botox itself is very expensive, the out-of-pocket expense is $2500.
$500 for living expenses:
In addition, Ever since Fall began--bringing with it, colder weather, constant dampness, and lowered light levels, Trillium's pain has been so extreme she has had to quit her two jobs that she had been doing. She's been completely unable to work. She gets some rental assistance and food stamps, but needs another $500 in living expenses right away.
Who is handling this money?
Any contributions will be direct deposited to a savings account in Trillium's name that is attached to my credit union account (I am Trillium's mother). I will transfer money as needed to Trillium in the ways she directs, specifically for her treatment costs and living expenses we have built into this campaign. I will also keep a record of any expenditures so that contributors may request information about where the money is going.
So, we are asking for your help raising $3000. We know this is a LOT. We know this is much to ask. But this is urgent. Trillium was given something to hope for, and then told she couldn't reach it. She's been giving up.
But we've seen what can happen when lots of friends each give a little.
We've seen miracles before....
Please, will you help give Trillium and Annabelle a miracle?
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