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Name: Paul
Email: pfrumkin1@comcast.net
City: Bloomfield Hills
State: MI
Country: USA
Diagnosis: Anesthesia Dolorosa
Date: 01/30/07
Twenty-four years is a long time to have AD; a single day is. When it first occurred, I was 30 and moving up in my law career. That was ended instantly after the surgery—a complete trigeminal rhizotomy via the posterior fossa, plus sectioning of the VII nerve, which controls tearing in the eyes. Near-enucleation of eye occurred three months later … truly a case of the most staggering medical negligence at the Mayo Clinic.
I have been asked to speak to patients suffering chronic pain. Thus far, I have declined because there are still days when the pain gets the better of me. But I do consider myself a success, as I returned to the profession eight years later, after a year-long rehabilitation that I designed.
On not a few days, I do not “notice” the pain at all. It is interesting that the degree of pain rises instantly when I talk or write about it. It is rising now. I think I have trained my mind to not pay attention to the pain. I have to: I would never be able to do my work otherwise, and my work is being, literally, a lawyer’s lawyer. I do research and writing for my lawyer-clients, and they usually give me their most difficult cases. I spend my days reading legal texts and writing. Pretty high level stuff for someone with AD.
I have tried many off-label use drugs … or they have been tried on me. I currently take 10mg percocet four or five times a day. My body and mind are comfortable with percocet, as I’ve been prescribed since the fateful surgery in 1982. I also take 400mcg Fentoral for breakthrough pain. It is an effective drug, but lasts only a short time. And for me, it is also not as mind-friendly as the percocet,
so I take it with some reluctance and caution.
I could describe my immediately-post surgical state and the next
ensuing years in detail, but I think they are pretty much what you’d
expect: researching medical texts in the Wayne State University Medical
Library (in Detroit); months-long stays in a psychiatric unit; feelings
of helplessness and hopelessness. Also, a couple attempts to check out
of this world, not because I wanted to die (oh, no … I loved life), but
because it was the only way I knew of to stop the pain. I was not ready
for this kind of pain. I did not know an organism of any kind could
suffer this kind of pain and still live. I was angry when found and
revived, and today I am so thankful … beyond words thankful… for that.
The pain is difficult enough for anyone, but when it is caused by brutal
negligence, obvious deviation from the standard of care, and coupled
with lying to the patient, that pain joins anger, and they can be a
disastrous mix. It took me a long time to forgive the Mayo Clinic
physicians involved. I had to forgive them … not for them, but for me.
Resentment is a powerful tonic; it is best tolerated, if at all, in very
small doses, and I had to let resentment go before it consumed me.
Today I am a happy person, happier than most I know. It was not easy
to get to that place, but once there, I firmly believed that if you’re
happy with where you’re at, then it makes no sense to resent the path
that brought you there. Yes, I have severe pain. Yes I hope for a cure.
But I also have a life---with my family, with my friends, with my
hobbies (I’m a vinyl record nut) and with my work. I don’t think I could
have recovered without being able to work … it was that important to me.
My greatest victory in life is not achievement is law school (2d in a
class of 250); rather, it is that no one would know I’m in pain if I did
not tell them so. Well, I’ve shared enough, not having been asked to!
But I did want to tell you that recovery as a human being, as a
functioning person, as a family member and as a professional is still
possible despite this condition. AD takes enough away from us; the
remainder must be treated kindly and with nurture to grow. Later, I hope
to describe my recovery in greater detail.
More about My Recovery
I partially expand on my prior posting, hoping that
someone may benefit from it. My journey began with cluster headaches,
which eventually became chronic. In 1982, my neurologist (Joel Saper of
Ann Arbor) referred me to the Mayo Clinic in Rochester, Minnesota, where
he said they were doing a new surgery to interrupt the pain signal in
the relevant nerves. While I had been a fairly well read patient
concerning cluster headaches, this time I did not venture into the
medical texts—I felt that Mayo was the best of the best, and that I
should just trust them with my well-being. That fateful decision led to
unhelpful self-recrimination for many years; indeed it is still with me,
now some 24 years after the surgery.
Mayo presented an inexperienced resident as being
fully qualified. In fact, he had never done the surgery before
(trigeminal rhizotomy via the poster fossa); had never been on a team
that did it before; had never seen it done before; and didn’t read
anything about this very technical surgery before doing it. The
resident, W. Richard Marsh (who still practices at Mayo),
inappropriately cut all three sensory divisions of the trigeminal nerve;
cut the motor cord that controls mastication (chewing); and cut the 7th
nerve that controls lacrimation (tearing of the eyes). Generally, the
greater the destruction of the nerves, the worse the resultant pain can
be. When I visited Massachusetts General Hospital some six months
later, they physicians (including William H. Sweet) said they had never
seen so much destruction. It turned out that Mayo was not doing any
“new” surgery, but the opposite. In a study they did not tell patients
about, they wanted to use the old, dangerous, high-morbidity posterior
fossa surgery and see if bad results (chief among them, anesthesia
dolorosa) were still obtained even though modern surgical methods were
used. You can guess the result of that stupid study, and maybe only
contemplate on the pain they inflicted on the 12 patients, including me,
they intentionally subjected to the old surgery.
Anesthesia dolorosa is an affliction that occurs
secondary to damage to the trigeminal nerve. It is similar to ghost or
phantom pain after an amputation. Basically, the cut end of the nerve
on the brain side of the nerve gives off pain signals that the brain
interprets as coming from the (now numb) side of the face where the
nerve was cut. The face is without “real” sensation; a pin could be put
through my eye without my knowing it. Yet the face (including the eye,
tongue, cheek, teeth and gums, and forehead) feels these terrible,
constant pains … as if someone were pressing a massively heavy anvil
against my face; like a great weight were upon it; a terrible cramping
sensation in the teeth and gums; and like pepper had been thrown in my
eye. These pains are constant. Sometimes I’ll have short-lived pains,
and these are quite disturbing. It feels like some powerful insect is
eating my eye, nose or lips; these are the “hold your breath” pains
until they subside. The surgery (and more importantly, the amazingly
negligent follow-up care instructions) also caused me to become blind in
my left eye. A six-month long battle to save vision failed, and a
surgery was performed to cover-up and protect the blind organ … leaving
me with a ghostly, milky-white eye. I now use a contract lens-like
prosthesis for cosmetic reasons.
These pains were new to me. I didn’t know there
was pain that a sufficiently strong medicine could not take care of. I
didn’t know there could be pain without cure. I didn’t know that an
organism could endure such pain and not just cease to exist because of
it. And I didn’t believe that a person in such pain could live for
long. In the next two years, I would attempt exiting this world three
times, not because I wanted death (no, I loved life), but because I saw
it as the only way of ending the pain. When I was found, hospitalized
and revived, I seethed with anger: how dare you tell me how much pain I
have to live with. Now, and as I will tell you below, I am grateful
beyond words that I was kept alive.
The pain immediately ended my career. I had chosen
to become a lawyer. I graduated second in a law school class of 250,
and was selected by the law school dean as the Outstanding Law School
Graduate of 1978. I then clerked for a federal district judge in
Detroit (a prestigious appointment), and subsequently went to work for
the firm I chose to work for. These were matters of great pride to me,
as you might imagine. And now, in one moment, that was all gone. I
couldn’t even follow a magazine article, so great was my pain. Legal
work was out of the question. In the two years following the September
13, 1982 surgery, I spent one-fourth of the time on psychiatric wards …
because of depression from the pain. They told me they thought they
could treat the depression independent of the pain. I thought that was
ludicrous, because I knew the pain caused the depression. But time
would prove them right, and I am both lucky and grateful I stuck around
long enough to learn that.
I received Social Security disability as a totally
and permanently disabled worker. No one ever expected me to return to
work, no one including me. My life was miserable; I felt like a ghost
inhabiting a body wracked with pain. I become reclusive, fearing that
my now-facial asymmetry made me look monstrous. My house became the
full extent of my world. I sued Mayo. My first lawyers—Ed Stein of Ann
Arbor and Ty Bujold of Minneapolis—were bought-off by Mayo and its
then-in house legal crook James O’Hagan of Dorsey & Whitney, and they
tried to lose my case. I was able to show some of this and I got a
second trial. O’Hagan could not be Mayo’s lawyer at the second trial
because he was in federal prison on unrelated misconduct involving the
Mayo Clinic.
The second trial resulted in a jury verdict of more
than $1 million. But on appeal to the U.S. 8th Circuit Court of
Appeals, Judge John Gibson took it away. Using a procedure never used
before nor since, he concluded that some issues were properly determined
in the first trial, and some in the second … and so he picked and chose
between the two verdicts, always selecting the lower jury award. This
way, he came up with a verdict of $250,000, which was only enough to pay
off legal expenses and accumulated debt. A further request to appeal
was turned down by the 8th Circuit. Now, my anger and grave
disappointment was towards my own profession, and not just the medical
profession.
Over time, beginning about 1989 (7 years
post-surgery), a new type of anger came over me. This was not anger
towards the physicians involved, especially W. Richard Marsh, not was it
towards the legal profession, especially Ed Stein, Ty Bujold and Judge
Gibson. No, this was different. I began to refuse to accept that this
was the last chapter of my life. Damn it, this was not supposed to be
the way my life ended—as a recluse living a life of pain and nothing
else. I had worked too hard, had done too well, and wanted to do more
in my life than just sit … a blob of pain quivering in its misery,
hidden and alone.
I refused to accept my-then life as the remainder
of my life. I refused to accept the disability caused by the pain. I
refused to let anesthesia dolorosa be the total of my past and future.
I refused to accept that the “now” would become my “forever.”
Newer antidepressants had been lifting, even if
only somewhat, my depression. On this subject, a little was a lot.
This improvement in mood was sustained despite the pain, which was the
same as before. I also began athletic swimming: first one mile a day,
then two miles a day. My longest non-stop swim was five miles. This
helped a great deal. I had been unemployed for some seven years. I
contacted rehabilitation clinics and physicians, but no one knew what to
do for me—they were mainly geared toward helping manual labor. So I
designed my own course of rehabilitation. The key problem as I saw it
was that my confidence was shot; I didn’t know if I could perform
high-level legal work again, and I felt like the perfect legal
malpractice target. I could hear the would-be trial, and being asked
“You mean you took this case, so important to my client, even though you
could, by your own admission, barely concentrate?
Although my background was commercial litigation, I
contacted a friend who had a personal injury practice. I told him I had
good news and bad news. The good news was that I would work for him for
a year … free. The bad news was that I would need a lot of
hand-holding; that I might come in for ten hours or ten minutes, and
that when I said I had to go, that meant I had to go. Fortunately, he
accepted my terms, and thus began my rehabilitation and recovery, not
just as a lawyer, but as a human being.
I soon found that my fears were largely unfounded.
I could still do this work, even if I was slower than before. I wrote a
number of complicated briefs that won in court. I regained my
familiarity with the basic outline of civil law and recalled much of my
teachings in law school. By seven months into the year, I felt ready to
apply to a commercial litigation law firm, but I kept my word, and
stayed for a full year. I then applied to, and was accepted by, a
well-regarded commercial litigation firm. For the next five years, I
was the highest-ranked associate. Later, I would become an independent
contractor of legal research and writing services for other lawyers, and
that is the position I retain today.
How, exactly, did my recovery work? How could I
now concentrate and write well when before I could barely follow a
newspaper or magazine article? I wish I could tell you step-by-step
what I did and what you can do, but I cannot. My recovery evolved; it
was not sudden. One needs to nurture those parts that still have
ambition, that still want to work, that still finds excitement in this
world, that still want to have fun and still want to love … in short,
those parts inside us that still want to live as before … or better. It
took a great stubbornness not to let my pain be my entire existence, and
not to let it dictate to me what I could do, and what I could not do,
for the rest of my life. It took long-term therapy, and group therapy
was probably the most important.
The road to ongoing recovery was still not easy.
Although no opioid could touch the pain of anesthesia dolorosa, at least
alcohol could put me in a place where I didn’t care if I was in pain …
and that was a tempting place to go. Six years after returning to work,
I got two DUI tickets in one month. I realized I had a problem, and
went into long term rehab. It is now more than 10 years later clean and
sober: no alcohol, no “street” drugs.
And so I don’t anticipate my future will be without
bumps in the road. Perhaps I’ll start taking too many percocet; perhaps
I’ll become depressed; and perhaps I’ll even sneak a drink (and, God, it
hurts me to write that, but it’s one day at a time, and I have no
guarantees). But this does not sadden me, and I hope it does not sadden
you, because it is my, and perhaps your, reality. Believing the past is
prelude to the future, I feel I can wage a winning battle with whatever
comes my way now. I have to remain vigilant; my ongoing recovery is not
a certainty.
Most of all, I have to treat myself with that
degree of love and caring that my family and friends bestowed upon me,
and you must treat yourself with that degree of love and caring shown
you by your friends and family. This was, perhaps, the hardest
thing for me to learn. I don’t know why, but inside me somewhere is
this dark place where I blame myself for what happened at Mayo and for
my pain condition. It was a place I didn’t want to acknowledge, not to
anyone else, and not even to myself. Left in its dark and dank place,
it festers and bloats with self-loathing. It is a dangerous place that
must be exposed. To recover from it, I feel you must acknowledge its
existence, address it, and allow others to address it. Only by
acknowledging this feeling can you receive what you need to hear: that
no one blames you for your pain condition. It is a liberating
experience. It is an experience I so greatly needed, and I believe it
is an experience you need, too.
Your recovery from pain may not include a return to
work. It may be returning to a hobby (or beginning a hobby), or it may
be returning to enjoying your loved ones and your life. Whatever it may
be for you, the fruits of recovery and the joy of living still wait for
you. It begins with a decision that the current circumstances, and your
response to them, are simply unacceptable. Where you go from there will
be uniquely yours. Along the way, please stop to cherish each new
victory or step in your recovery. Upon these will your recovery find
its foundation.
God bless and best wishes,
Paul Bloomfield Hills, Michigan
Name: Lori H
Email: Private
City: Whitney Point
State: NY
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Medications....so far
Comments:
Date: 01/30/07
Hi.....I've actually had this TN since 1997.First,the lower right side of my face was weirdly painful numb and it just totally bothered me to the point that I really knew it wasn't normal for me at all. My regular doctor referred me to a neurologist,Dr S. She was hard to understand but we got through a few years together. She prescribed me Tegretol and when that wore off ,she tried Ultram.I had a terrrible reaction to this and went on Neurontine instead. Shortly after this, the painful numbness went away and I took myself off of any medication.THEN>>> in 2000 I started having sharp pain in my lower right jaw......thought it was because of bad teeth and saw a dentist....had a few teeth pulled. Didn't help. Saw a oral surgeon too because of this pain and that it might be because of a tooth. NIce xray but we weren't sure at all if the tooth in question was the problem-maker. Well.....after all that, went to my doctor and he sent me to a different neurologist ,DR R. Well, he isn't too promising even though I have had him since 2001. He doesn't really want me to ask questions of him it seems of late. The MEDS I am on are....Lyrica 100-50-100,Carbatrol 400-400,and Fluoxitine 40. THEY are starting to not work for me. I Hate this PAIN!!! It really ruins my life anymore. My poor family! They have to watch me in pain and can't help me at all! They hug me when they can and kiss me when they can. It has even ruined my sex life with my husband!!! It sucks and i don't ....anymore.Sorry about that!Had to get that off my chest. I WANT MY LIFE BACK! Will it get better can any one tell me?
Name: "Linda"
Email: Private
City: yorba linda
State: ca
Country: usa
Diagnosis: facial spasims
Treatments: MVD
Comments: May 05
Date: 01/29/07
Hi!
I was diagnosed with hemifacial spam in 02. I had a very stressful position as a special education administrator. My nuerologist said that the condition may be agravated by stress.I tried Tegratol and then Botox. The injections lasted only 3 months and I received about 40+ at a time. I changed jobs. I did research on line and discussed Microvasular Decompression with a local nuerosurgeon who scared my husband and I with his lack of knowledge of the procedure. 6 mo later I went to see Dr Alksene at UCSD. We were surprised to learn at that visit that continued Botox injections would permenatly damage my face, that I would eventualy loose motor control. He explained the possible side effects: continued spasms and possible hearing loss. We agreed to pursue the surgery.
I have had major surgery before but the pain of this was undiscribable. I remember waking after the surgery at dusk, my husband sitting next to my bed in the dark. I could moved my free hand to touch my hair,it was stiff with dried blood, my bandage was like a revolutionary soldier around my head. I knew he was crying. We had no idea that this was just the begining of the rest of my life in pain. I went home on schedule on the 3rd day after the surgery.
7 days after surgery I brushed my teeth and when I went to spit the water, I had no lip closure on the one side, the water sprayed all over. My husband called the Doc, he perscribed a steroid over the phone, we got it immediately. This was a Friday. By Monday my eye didnt close, my mouth didnt move. My husband called Doc. A. and told the Doc he was bringing me in. After an MRI a small bleed in the area of the MVD was found. I was admitted for IV steroids, then home for 3 weeks of oral steroids. I had congestive hearing loss. It finally cleared in late August (3 mo). I returned to teach, under the Doc's care. I had days that I couldnt go in, pain in my face, headaches, my eye ached. I forced myself to finish the sememster. I am now diagnosed with double vision, I have damage to my 5,7,9,11th craniel nerves. My speech is impaired, I cannot project my voice to a large group of people, I cannot read aloud for more than a few minutes. Since the surgery my blood pressure has been very high which lead my internist to more than double the meds. I went to U Pitt for a seccond opionion, They say I am lucky that my eye closes, that I am not drooling.They said they had no idea why I have double vision now. However I just read on line that Trimiraalga paients are told that a MVD can have the side effect of double vision.
I am on retirement disabiliy now. I am 52 yrs old. I feel cheeted and abused. The possiblity of these effects were not ever told to me. And it doesnt seem to matter, there is no recourse for this chain of events. So I say beware!
Name: hunter23
Email: tyrel1984@msn.com
City: Phoenix
State: AZ
Country: United States
Diagnosis: Trigeminal Neuralgia
GN:
Treatments: Gamma Knife
Comments:
Date: 01/26/07
Back in 2004 I posted a story about my dad and his battle with TN. TN is the worst thing that has ever touch the face of the earth. After I posted my dads story on this website, 2 months went by and those were the worst 2 months of my dads and my family's life. My Dad's TN hit the hardest it ever has. My Mom had to keep an eye on him at all times because he wanted to give up. He even asked our church leader if he think God will forgive him for taking his own life.
After hearing this I got on the internet and searched for hours. I came across a website that had an article about the Gamma Knife and how it was able to treat some cases of TN. I printed off the article and gave it to my Mom. She called around and found a doctor that had access to a Gamma Knife machine. Two weeks later my Dad had the Surgury. The doctors told us that the surgury might not take effect right away. And it didn't, the pain was still there for six months later. But now he is pain free! Sometimes he complains about the side of his face being numb, because that is the side effectsof the surgury. But I always ask him " Would you rather have the pain back or feel nothing?" And he'll just smile.
I urge anyone out there, that has TN, to fine a doctor and ask them about the Gamma Knife. And to never stop looking for a treatment. And I say treatment because TN has no cure yet. They say the pain could come back at any time. But there is a chance that it might not. And we pray that it won't.
Name: "fufu"
Email: private
City: El Mirage
State: AZ
Country: USA
Diagnosis: Trigeminal Neuralgia, Glossopharyngeal Neuralgia, Atypical Facial Pain
Treatments: minor axial adjustment
Comments: relieve the pain
Date: 01/24/07
On May 30th, I awakened at 2:00 a.m. with severe pain on the Left side of my face. No blisters or redness, just pain. MRI and MRA and CT were all normal, including the labs. I went the usual workup, LP, meds that made me very tired and didn't help much. The pain and symptoms progress to my throat and ear. When I had near unconsciousness x 4 times, my nurse friend felt it was due to my neck and not my head. He looked up a chiropracter that could adjust the neck without more problem. He found an Atlas Orthogonal Chiropractor that found sublaxian atlas that he could adjust and it relieved all my symptoms including increased spinal fluid headache. No more face pain, ear pain, tooth pain, throat pain, mouth pain, eye pain, or mid-brain pain since Dec 13th. FUFU
Name: Keisha
Email: pink.ribbon90@gmail.com
City: Richmond
State: Va
Country: United States
Diagnosis: Trigeminal Neuralgia
GN:
Treatments: Carbamazapine, Trileptal and Baclofen (currently taking) and Glycerol injection
Comments: Not pain free yet, but still hoping and praying!
Date: 01/24/07
Where shold I begin...... I have been dealing with TN for about 5 years. I remember the first shock of pain I had ( wshing my face ) . After a few weeks of not being able to take the pain I went to my primary care phyician. He priscibed me carbamazapine at it's highest dosage. It mad me feel like a zombie at work. Three years went by and one day the pain was so unbareable I went to the emergency room and i blessed to met a lady who had TN and was pain free and who actually understood what I was going through. She recommended a Dr. S. Sahni ( I am glad I met ). So I went to him and he changed my medication. It worked for a while but once again the pain started back. So we went for the Glycerol injection. After the injection I still had pain but it was at a minimum. As we speak only a couple of months later the pain is back with no ease!!!!!!! I have an appontment tomorrow to talk surgery. I am tired of this pain, tired of crying and being scared to eat, talk, drink, run, brush my teath, (which I love to do), wash my face and even move a certain way. It is like I don't know when or where it will happen again I am in constant fear all the time. I hope for the best with my appointment and I will keep you guys posted. I will keep all you in my thoughts and prayers because I know what you are going through.
Name: Kimberly M
Email: Private
City: Hoschton
State: GA
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: NEURONTIN-LYRICA-BACLOFEN-TEGRETOL-DILANTIN
Comments: HELP
Date: 01/24/07
I have tried several differnt treatments--It worked for over a year taking Neurontin and Baclofen. Then it stopped working, it was worse this time around than last. I am thinking about having the MVD operation, looking for anyone who has had it done. Also, looking for info on how many MVD operations a doctor should have performed in the last year.
Name: kim
Email: kimkimrowe@aol.com
City: athens
State: ga.
Country:
Diagnosis: Trigeminal Neuralgia
Treatments: tegretol,soon trying neurontin
Comments:
Date: 01/22/07
I've had this on and off for about 4 years. However it became unbearable last January. I feel as though I've lost my life, and am really hoping the neurontin will help. Does anyone have experience taking both at once. I'm currently maxed out on tegretol and hardly feel it. Also ,To the girl(lady) in Gainesville, the docs don't know much here in Athens either. They are sweet but I feel like I've educated myself far beyond what they know!!Maybe Atlanta??Hang in there!!
Name: Laurie
Email: crimsonpride2002@yahoo.com
City: Eureka
State: IL
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Neurotin, Lexapro, Ativan,
Comments: everyday is a struggle
Date: 01/21/07
I have had this for about three years. I have tried just about every avenue of treatment I believe. My most resent treatment(pain block) left me with increased pain, and severe dizziness.
I wonder how any of us manage to keep our jobs. I love my job but no one there can even began to
get it. I took a three week LOA in December because I was hospitalized with a complications from medications I was taking. Does it end? Will I ever feel better? Why can't we fix this? Is there anyone close to Central Illinois that has this? Feeling alone in Illinois, Laurie
Name: "MyPainisEVIL"
Email: kyblondie83@yahoo.com
City:
State: KY
Country: USA
Diagnosis: Trigeminal Neuralgia, Atypical Facial Pain
Treatments: I refuse to take anti-depressants/anti-seizure medicine
Comments: The devil's disease
Date: 01/15/07
I have chronic pain in my face, and I have been diagnosed with : trigeminal neuralgia,after a year dealing with non-stop mouth /facial pain ..
My history
As a baby, I was allergic to my formula, and was put on a medication that caused my baby teeth to come in black then crumble out. The dentist told my mother, that I would most likely suffer the rest of my life with dental problems. That dentist Dr. RT had a medical issue, and was no longer able to pull teeth., so I had to start seeing a new dentist.
I started seeing Dr.KM. As a teenager, my teeth killed me. I would get them pulled, and I got a dry socket. I would have teeth filled, the teeth would die- then have to be pulled. When I got pregnant with my daughter, my wisdom teeth started brothering me- since I was pregnant no dentist would touch me, and I understood. They referred me to a oral surgeon Dr. WA - he pulled a tooth next to the wisdom teeth, saying that may be the reason why I am hurting, and told me he did not mess with pregnant womens wisdom teeth. Again, I understood, and dealt with the pain because I had too.
2 weeks after having my daughter, I go to the oral surgeon,Dr. WA, and I have 3 teeth pulled that day, my 2 bottom wisdom teeth, and the tooth beside of the wisdom tooth on my right side.. Really thinking- finally I will be out of pain. Not even 2 weeks later, another tooth ache on my left side. I go see my dentist,Dr.KM- he fills it, saying the old filing had come out and Hoping to save it, because I was running out of teeth. Well days later, I go back in pain. The tooth had died. He refused to do anything else, he told me in a nice way I suppose, and told me he could no longer treat me. I needed to go back to the oral surgeon,and have all my teeth pulled.
And if I would have had insurance I would have. Anyways, so I was left to find a dentist that would at least pull that tooth. I wanted out of pain. And I found one Dr. DT. It was abscessed- he said, so I took a round of anti-botics, and lorcet, and then he pulled it- 2 days later I go back in bad pain, a dry socket he told me-I had to pay for this also. I kept having dental work, root canals, and fillings and teeth pulled, because I was always in pain.. Finally he gets around to the one tooth I had mentioned at every visit -because it was hurting,so He fills it, the tooth dies- (I had to pay for this also.) , he does a root canal on that same tooth-(I had to pay for this also.) because by this time I barely have any teeth. And believe it or not, the root canal did not work- Atleast thats why I thought I was still in pain . I don't think he believed I was still in pain, or I was just another drug seeker, and I started to get alittle depressed from this pain, and stress from thinking no one believed me, which I brought up at numerous dr. appts with him., He started writing me less stronger opiates(darvocets), that didn't help me at all, because I was use to lorcet,. Anyways, he filled my tooth on top of a root canal without numbing me, and said that would work.. And it didn't- I pointed exactly where the pain was in between my last 2 teeth on my right side.. So he assumes its the tooth next to the one which had the root canal filling(etc etc), and then he did a root canal on it and I was still in pain. He told me I had TMJ- so I purchased a $275 mouth guard like he referred me to do- and that did nothing. So he eventually just pulled the tooth(he charges me again)- because I just couldn't take the pain any longer. And 2 days later I go back thinking I have a dry socket, and he packs it as if it was a dry socket.. a week later, still in pain.. By this time, he was tired of me I assume, or just didn't want to believe me, and finally suggested I see someone else besides him. He made appt to the oral surgeon Dr.WA, but it was 2 months away, and he wrote me NOTHING for pain to help me until my appt..
So I even went to my family physicians assistant Dr.BR hoping she could refer me some where to get pain management- I was/am dying in pain.She told me they probably wouldn't do anything for dental problems, and she told me if she could she would have wrote me a opiate, because she believed me.She could only write Tramadol. But unfortunately tramadol made me very sleepy, and have bad headaches along with the facial pain.It was even harder doing my job, and being a mother etc etc with this medication.
So I was having to go to Dr.DT every week- because I was in bad pain, and needed relief-just so I could manage my pain until I could see this surgeon. , and I was paying office visits, to do this -more money, and he even tried a procedure during this time he cut my gum line open, and shaved the bone down, and that made it WORSE, and I paid for this also.I believe he was beginning to get scared, or tired of seeing me, all I wanted was pain management, at my last visit with he said he would try to get me in to a orofacial clinic- 2 hrs away- so I wouldn't have to wait so long to see Dr.WA, and he would call me about the appt. and he said he was writing me a different type of medicine, he believed depression was causing the pain,but he didnt tell me what this medication was for. He wrote Elavil. I told him depression was not causing the pain.. The pain was causing depression.So when I went to the pharmacy, I asked them what it was. She told me a anti-depressant. Well it didn't do a thing for me.
That following week or so I go to a orofacial clinic . Dr.Y,-they asked what medication worked? I clearly told them Lorcet/Lortab/. They diagnose me with neuropathic pain- and ruled out TMJ. And give me Elavil, he said he didn't prescribe pain medication, because it didn't help with the pain associated with neuropathic pain, and yet I told him it worked on me- he still prescribed Elavil. I know all about elavil, and told him I had a part-time job, and a 9 month old daughter- I couldn't take something to knock me in order to sleep off the pain. He even told me there was a good chance it wouldn't work- I already knew that.
So, I kept my appt. with the oral surgeon, for a 2nd opinion. I go see Dr.WA. He checks me for TMJ the same way Dr.DT checked me. He tells me I have a possibility of having neuralgia, and he referred me to a neurologist. Dr. NA. I had to wait 2 weeks to see him. So I asked the nurse to ask Dr.WA if I could have something for pain, until I seen him.. The nurse told me he said "Tell her to take some over the counter pain medication"--Ohh my life would be so much easier if those medicines worked.
So I waited in agony to see Dr.NA. Praying, and hoping he would listen to me, and listen to what actually gets me out of pain- so I can function some-what normally, and not depend so much on others to even help me do simple things like sweeping or feeding a crying baby. But like I suspected, he didn't quiet hear me. Because he said "Those types of medications (Narcotics) doesn't help Neuralgia"- After again I clearly said those helped me, I was able to function some-what normally. I was able to be a wife, and a mother- He then told me," well I writing 2 medications, that will make you sleep a lot, its up to you if you take them or not- it's your choice," and he ordered a MRI. Before I left his office I reminded him I worked part-time, and had a life- a baby- people who depended on me- I didn't want to sleep all day. He said "you'll just have to take the meds when you don't work".. and I didn't say anything because I am so tired of having to explain everything, and feeling like I am invisible, and ignored.
But I kept thinking what about my 9 month old baby, that I wanted so much, that I had been trying to conceive for a year- and had to endure 2 painful miscarriages for, having laparoscopy done to remove a cyst because I was diagnosed with PCOS during this time, all those meds and things I had to do while pregnant in order to substain my pregnancy, and being put in the hospital at 33 weeks pregnant and be told I could have a still birth due to heart deceleration. Then having her 6 weeks early.-What about her? I have been in facial pain her entire life, I haven't been a very good mother because of this pain, and when I was able to take care of her by myself was when I was receiving proper pain management that worked for me. Who wants to be the mother while your baby is crying your crying along with her because the pain is unbearable. I don't want her to see me cry, I am suppose to be strong, a care giver, a role model. And what about my family? My parents are always stressed out because of me. They have their hands full with my nephew and niece, because my sister died. So not only are they having to take care a 8 yr old, and a 6 yr old, but now raising a 9 month old, because my husband works- and has to pay the bills. But what about my husband, when he's waiting to go to work, or a day off. He doesn't get a day off, he has to clean the house, and he has to help me do my part-time job, and take full care of our daughter. He's so wore out, I keep him up most nights crying and screaming for God to help me.What about that part-time job I try to work, that is paying for all this medical treatment that is getting me no where but in debt from 3 maxed out credit cards. I just wanted to blurt all that out at him, when Dr.NA acted as though this was normal, and 'sleep off meds' were the best thing for me.
When I went to the pharmacy to get those medications Tegretol, and Baclofen, I had to pay $40 for them. $40 for pills that will make me sleep my life away, and be a zombie. Not to mention all these other dangerous possible side effects and warnings, that somehow he forget to mention to me.
I really don't know how much more I can take of this pain. I don't know how much more stress I can handle, or my husband, and parents can handle.
Name: Anonymous
Email:
City:
State:
Country:
Diagnosis: Atypical Facial Pain
Treatments:
Comments:
Date: 01/14/07
Hi,
I am now 22 yrs old. I have been having pain in the are where root canal was done for the past 1.5 years. I was annoyed with my dentist when he looked at my as if I am an hypochondriac trying to project pain which was not there at all!!
I tell you friends life has been like walking on fire for the past 1.5 years for me!!Yes I know that all of us have experienced such kind of pains and it seems worse when nobody understands us.
After diagnosing chronic myofascial pain in me, now doctors have diagnosed fibromyalgia also.
I have been in pain all over my body with fatigue right from my childhood days. But none listened to me when I complained about them. They even said it was all in my head since I am not a 'cool' person.
I am taking medications like prozac and also narcotics to keep me going.
But friends I still feel the root canal treatment that was forced on me had caused the pain in my face which was not there before.
But my dentist would not listen. Whenever I go to him with a complaint he does not understand my point. He wants to "finish off the procedure by fixing a cap over the root canal-done tooth" it seems. Is this not indifference to the core towards the feelings of the patient who is in pain??? (I had removed that cap earlier before since it hurt me more after fixing it)
Any suggestions friends?
Name: Steve
Email: steve_pattenden@yahoo.es
City: London
State:
Country: United Kingdom
Diagnosis: Trigeminal Neuralgia, Atypical TN, Atypical Facial Pain, Atypical odontalgia
Treatments: Gamma Knife/Alcohol Glycerol Injection
Comments: I want my life back!
Date: 01/12/07
Pain started August 1996 after having routine filling upper right incisor. Went back to dentist who took x-ray. Said nothing wrong with tooth. I insisted he do root canal. Still pain persisted. Was sent to GP/Doctor. He prescribed Tegretol and sent me to Neurologist. He said I was too young for TN. Did some tests. Sent me to a pain clinic. I had to wait ages to see someone. They said it might have been classic TN but I displayed some signs of Atypical TN. They really diagnosed Atypical Facial Pain. Since then I've had a Gamma Knife which took pain away completely for 6 Months and no meds. But pain came back suddenly like a bolt out of the blue! Then Alcohol/Glycerol injection in the ganglion of the V Cranial nerve. Again pain relief but slowly and it came back slowly after only 6 Months. I'm now taking Amitryptiline and Tegrteol together with Neurontin. I have been very depressed, became alcohol and drug dependant and was sent to see a pyscho therapist for 1 Year. I am still in excruciating pain and I'm just at my wits end and have been for many years! My pain is right side of face mainly upper jaw and face but it also goes completely over my whole head and lower jaw as well. Pain varies from prickling, shocking, sharp, pulsating, burning stabbing and crushing! If this rings any bells with anyone else I'd love to hear from you for support and some ideas on how to make life a little more bearable. Thank you.:)
Name: Helen
Email: pancner@hotmail.com
City: darien
State: il
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: epileptic medicine and vicodin
Comments:
Date: 01/12/07
My mom has been suffering from trigeminal nueralgia for sometime now and it breaks my heart. She has been to a specialist plus her normal physician. She is on epileptic medicine and vicodin. She used to be the most energetic and vibrant person I ever met in my life. With the disease she is so frustrated and aggravated. She is 72 years old and in good health except for the TN. I wish I had the pain instead of her. I heard about surgery but with her age, I don't know if its worth the risk. If anyone knows of a good doctor in IL, please let me know.
Name: Colleen
Email: colleen@ft.net.au
City: Queensland
State:
Country: Australia
Diagnosis: Trigeminal Neuralgia
Treatments: Pregabalin
Comments:
Date: 01/07/07
I have always suffered with sinus pain and I recently moved to a new city. I was living in the middle of the cane feilds and put my sinus problems down to the cane flower. I went through 3 courses of antibiotics and during the process noticed the pain I was getting on the right hand side of my face. Went to the dentist he said my teeth were fine. I was back at the drs with with a sore throat and sinus problems again the pain seemed to go away with a stronger antibiotic. I felt well for about about 6 weeks then last October I started feeling stuffy and sore and started downt he antiboiotic path again. I have been to 4 different doctors with perscriptions for 4 different antibiotics since then. I went to see a doc at my new suburb this week as I explained to him the pain I was in he put me initially on kick ass antibiotics arranged a CT scan. Had the CT scan Wed and by Wed Night I was starting to feel really sore on the right hand side of my face. My face was sensitive to touch and when I looked out my right eye it hurt like hell. Bombed myself out on some strong painkillers given by a friend by Thursday night the pain was so excrutiating every sound vibrated through my head and nothing seemed to releive it and light made me feel worse.
I went to the hospital friday morning because I thought my head would explode and after waiting several hours I was told by the Junior Dr that I need to go back and see my GP because she cant refer me to anywhere. I wanted someone to help me with pain not the sinus infection ad I had already suspected that I had a neuralgia. I am putting a formal complaint about the hospital when I am feeing better, but luckily I went back to my new GP who after seeing my CT scan and listening to my concerns decided it could possibly be a Trigeminal Neuralgia and that he wanted me to trial the Pregabalin to see if it would help.
I started the tabs with my meal Friday night. Its now Sunday night and I am already feeling better. I am still getting headaches and light sensitivity and have some numbness on my right side of my face but I have definatley improved on what I had during the week. I know I need to give it more time to see if it helps long term, but reading some of your stories made me realise that I am not alone here.
Reading your stories has made me realise the good and bad of it all.
Name: Kim
Email: Blackburn
City: Austin
State: Tx
Country: United States
Diagnosis: Atypical Facial Pain
VN:
Treatments: Root Canal Retreats Extraction Nerve Blocks
Comments:
Date: 01/04/07
About four years ago I began having sugar sensitivity in a tooth that had a large filling in it. I believe I let it go too long even before getting the filling years before. I went to the dentist who removed the filling and looked under it. He refilled it. The sensitivity to sugar continued. He decided to check the tooth behind it to see if there was referred pain. While he performed the procedure, I felt an unusually jarring jolt that felt as if he had hit a nerve. After he replaced the filling having found nothing notable, I have never felt the same. These two upper molars on the right side of my face have felt like live nerves ever since. BUt at first it was certainly manageable and not a life interrupting experience. But the sugar sensitivity would raise its ugly head at times giving me excruciating throbbing pain that would last hours or more.
I began to see an endodontist and the pain became more chronic and long lasting. Over the course of two years we did two root canals in these teeth. The pain subsided but returned.
In the last year, my pain again reached fever pitch. I was in tears all the time with screaming pain. In the last year I have had two retreats on these two teeth. - ugh. and finally an extraction of one of them.
The doctors have never seen anything wrong with these teeth, no infection, no bone issues. Of course they can only see so much. After the extraction they found a crack in the root of the tooth and inflamed tissue. they could see none of this on their x rays.
Now the back tooth continues to give me pain and my oral surgeon wants to classify it as neurogenic pain.
It is not that I don't believe neurogenic pain exists. I do. But I am willing to venture that there is another crack in the root of this other tooth - a result of a the procedure of my dentist oh so many years ago.
What's disappointing is that the oral surgeon who I am working with is very kind, but as he has been diagnosing me with neurogenic disorders, it is as if he hasn't done his homework. I finally looked up these disorder on teh net today and found that the terms he has been throwing around are clearly not appropriate in my case. There are others that fit more appropriately. I should not be surprised, but I am.
I am in life interrupting pain right now and have been for some months now. I am ready to say goodbye to this last tooth as I can barely function right now. It means the loss of significant biting surface on the right side of my mouth. but I am finally ready for this.
but the oral surgeon, not willing. I suppose it is second opinion time.
Luckily my oral surgeon is willing to do nerve blocks and they work for me.
I just have to avoid even the most remote trace of sugar in my life - I am talking even sugar substitutes.
At least my pain trigger has always been consitent. I have said good bye to sugar in my life in all its forms. Now if I could just say good bye to this pain. I am open to any and all support, suggestions, information.
Especially from folks who have experienced very similar issues. thank you.
Name: Della R.
Email: none
City: RockSprings
State: WY
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Neurontin, antidepressants, Ambier CR
Comments: so tired
Date: 12/27/06
I have had this for several years, but was just recently dignosed with TN, I was back in forth to the dentist,root canals, ENT, two surgeries, many treatments of antibiotics. I am doing better no severe pain right now. I do get eye pain vision problems and my top gum on right side throb. I have been so very tired and weak, so I am thinking that is from the medicine. I get really discouraged I feel good for a day or two and then all I do the next couple of days is lay around and sleep. Has anyone else experienced this lethargy??
Name: Jennifer C
Email: Private
City: Gainesville
State: GA
Country: usa
Diagnosis: Trigeminal Neuralgia, Atypical TN
Treatments: Lyrica, Neurotin, Tramadol,
Comments: anyone near GA
Date: 12/08/06
I am looking for anyone in the Atlanta area (within 200 miles of Atlanta, GA) that has TN. Please give me advice on any doctors you have used that have given you relief, etc... I am looking to switch doctors or try anything to help with my pain.
