Torticollis

[Guest guest]

There is a tort group that you might want to check out:

Torticolliskids/

But my take on this is that it will not resolve itself. I'm not sure what your

PT is doing if she's not doing stretches. Mine did mostly stretches with a tiny

bit of massage (we went once a week). But it's absolutely vital that you try to

do stretches 4-6 times a day. It doesn't sound like stretching is being done

often enough, and it really needs to be a priority. It literally consumed my

life for about 3 months, but I believe my dilligence with the stretching and

other exercises helped my son's tort resolve by the time he was 6 months old.

And it's never come back (I took him for a follow up at 18 months just to be

sure and his PT gave him the all clear). I've read posts on the tort message

board and if left unresolved, there are gross motor issues (running crooked or

not being able to jump, etc.) and some kids need " release " surgery, where they

actually cut the muscle/scar tissue to release the tightness. Honestly, if your

PT isn't doing stretches, I would consider switching to a different one. That

seems very odd to me.

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5

>

> My son has torticollis in addition to mild plagiocephaly and moderate

brachiocephaly. He has been in his Boston Band for almost 2 months. The

numbers show improvement, but I am not sure if I agree. He has grown a lot of

hair and I think it is misleading.

> He has been in PT for months. My PT does not do typical stretches, she often

massages and elongates the muscle in his neck. My nanny stretches him 2 times

during the 2 days that she is there and I try to do it when I remember. He is 11

months old and I feel like his torticollis is not resolved. It really seems to

come and go. Last night he sat in his highchair for dinner and was so lopsided

that I felt like crying looking at him. I don't want him to stay this way

forever. Has anyone had a child with torticollis that lasted this long and came

and went. What did you do? Did it eventually resolve itself?

> Missy

>

[Guest guest]

Stretching and stregthening is key to resolving torticollis. Doing them "when you remember" is not enough. If you want the tort to resolve then you need to make it a part-time job to do all the things you can help so your child the tort has the best chance at resolving. Sometimes even those who do everything they can still have to do things such as surgery. From everything i know, massage should not be the only thing the pt is doing. Most tort does not resolve itself-and i sure wouldnt want to be the one who is hoping it does, and then come to find out it doesnt. My son is 10 mth and has been in pt since 5 mths, and his tort has improved greatly but is still there. we attend phys therapy 1x/week where she does numerous strecthing, and even more so strethening exercises (since he has full ROM). We also do both several times a day,

and incorporate them into his play throughout the day. Everyday with no exceptions for the last 5 mths. Your best chance at seeing results is to be more stringent with getting these done, and probably finding a better pt.

From: <nwilkens2275@...>Subject: Re: torticollisPlagiocephaly Date: Friday, April 17, 2009, 6:48 PM

There is a tort group that you might want to check out:http://health. groups.. com/group/ Torticolliskids/But my take on this is that it will not resolve itself. I'm not sure what your PT is doing if she's not doing stretches. Mine did mostly stretches with a tiny bit of massage (we went once a week). But it's absolutely vital that you try to do stretches 4-6 times a day. It doesn't sound like stretching is being done often enough, and it really needs to be a priority. It literally consumed my life for about 3 months, but I believe my dilligence with the stretching and other exercises helped my son's tort resolve by the time he was 6 months old. And it's never come back (I took him for a follow up at 18 months just to be sure and his PT gave him the all clear). I've read posts on the tort message board and if left unresolved, there

are gross motor issues (running crooked or not being able to jump, etc.) and some kids need "release" surgery, where they actually cut the muscle/scar tissue to release the tightness. Honestly, if your PT isn't doing stretches, I would consider switching to a different one. That seems very odd to me. Jake-2.5 (DOCBand Grad 9/08)Jordan-5>> My son has torticollis in addition to mild plagiocephaly and moderate brachiocephaly. He has been in his Boston Band for almost 2 months. The numbers show improvement, but I am not sure if I agree. He has grown a lot of hair and I think it is misleading. > He has been in PT for months. My PT does not do typical

stretches, she often massages and elongates the muscle in his neck. My nanny stretches him 2 times during the 2 days that she is there and I try to do it when I remember. He is 11 months old and I feel like his torticollis is not resolved. It really seems to come and go. Last night he sat in his highchair for dinner and was so lopsided that I felt like crying looking at him. I don't want him to stay this way forever. Has anyone had a child with torticollis that lasted this long and came and went. What did you do? Did it eventually resolve itself?> Missy>

[Guest guest]

thank you. I have started stretching him MANY times a day this past week bc I am so worried. right now his PT is through early intervention and works at a highly recommended place but I am going to make him a PT apt through my insurance on Monday to get more services.i know that torticollis comes and goes sometimes and reoccurs during teething, growth spurts etc...I am hoping that is all it is and I can resolve it with aggressive stretching over the next few months.

From: <nwilkens2275>Subject: Re: torticollisPlagiocephalyDate: Friday, April 17, 2009, 6:48 PM

There is a tort group that you might want to check out:http://health. groups.. com/group/ Torticolliskids/But my take on this is that it will not resolve itself. I'm not sure what your PT is doing if she's not doing stretches. Mine did mostly stretches with a tiny bit of massage (we went once a week). But it's absolutely vital that you try to do stretches 4-6 times a day. It doesn't sound like stretching is being done often enough, and it really needs to be a priority. It literally consumed my life for about 3 months, but I believe my dilligence with the stretching and other exercises helped my son's tort resolve by the time he was 6 months old. And it's never come back (I took him for a follow up at 18 months just to be sure and his PT gave him the all clear). I've read posts on the tort message board and if left unresolved,

there

are gross motor issues (running crooked or not being able to jump, etc.) and some kids need "release" surgery, where they actually cut the muscle/scar tissue to release the tightness. Honestly, if your PT isn't doing stretches, I would consider switching to a different one. That seems very odd to me. Jake-2.5 (DOCBand Grad 9/08)Jordan-5>> My son has torticollis in addition to mild plagiocephaly and moderate brachiocephaly. He has been in his Boston Band for almost 2 months. The numbers show improvement, but I am not sure if I agree. He has grown a lot of hair and I think it is misleading. > He has been in PT for months. My PT does not do typical

stretches, she often massages and elongates the muscle in his neck. My nanny stretches him 2 times during the 2 days that she is there and I try to do it when I remember. He is 11 months old and I feel like his torticollis is not resolved. It really seems to come and go. Last night he sat in his highchair for dinner and was so lopsided that I felt like crying looking at him. I don't want him to stay this way forever. Has anyone had a child with torticollis that lasted this long and came and went. What did you do? Did it eventually resolve itself?> Missy>

[Guest guest]

Hi Swana,

Hang in there. Pain and pain medications do wild things to our emotional

health.

Even if you are 'trapped' in a moldy environment, there's hope for improvements.

Do you have the money to get a quality air filter for your bedroom? Spend more

of your waking time OUT of the house...

Massage is one avenue...Personally, I love it.

Additionally, I have had lots of my healing from acupuncture.

I've had a lot of healing happen due to shifts in my food choices.

Have you tried any days/weeks of raw veggies and fruits?

There's a lot to explore on the subject.

YouTube is a great resource. Good search words; Juice Feasting, CSA,

Raw Food World, Arnold's Way, detox...

Books and websites by Dr. Fuhrman and Dr. Cousens are helpful.

Hugs of support,

M.

>

> hello all! it's been probably two years since i wrote on here. i had my

explant by dr kolb april of 08. she diagnosed me with hypothyroidism and an eye

test proved positive for mold exposure. unfortunately it wasn't from my

implants. the mold is in my parents house, where i HAVE to live right now. i

can't afford to live on my own for having to pay for my surgery and other bills.

so i know consistent exposure to unclean air is probably a lot of my problem. i

have also had worsening neck pain and widespread pain since the surgery. as well

as, fatigue, depression, memory loss, off balance, lightheaded, dizzy, problems

getting thoughts together and speaking them, numbness and tingling. i was

trying to get massage 2x a month and the chiropractor 1x but massage started to

irritate more than relax. i am an ex licensed massage therapist, so to me,

massage fixes almost everything. in my case, i'm very disappointed. i had seen

my family dr and told him of all my symptoms i had been having all my blood work

came back ok. he suggested i see a neurologist. with a $50 co pay i waited. i

started having numbness and burning pain in my right forearm and my chiro said

may be a slipped disk and he also said see a neurologist. i had one more visit

with him one eve after work and by the 11 the next morning i could barely move

my head. that's when i finally went to the neurologist. through NO extensive

testing at all he diagnoses me with fibromyalgia and mild cervical dystonia (aka

torticollis or wryneck). i had feared the fibro sense i had read that it often

coexists with hypothyroidism and generally if you have one autoimmune disease

your risk is higher of developing another. i recently read that they think

torticollis may be autoimmune related as well. when i told him about my implants

and my experience with dr kolb and the eye test for mold he rolled his eyes and

shook his head and said he didn't believe it. that it didn't even matter because

we're all exposed to mold. yeah, i get that but a certain amount CAN BE too

much. it grows on my clothes, shoes, and anything paper in my bedroom. so after

TOTALLY dismissing the eye test for mold he does a little test of his own. i sit

in a chair and he asks me to close my eyes (yall are gonna love this) he then

asks me who the current president is. now, i'm not very political but i'm not

THAT stupid either. but i'm sure most of you on here can relate. when put on the

spot, my mind went completely blank (as it so often does) and i couldn't think

of anything. i felt so STOOOOOPID! lol then it came to me and i told him. then

he asks me who the president was before that. i told him. then he asked the one

before that. i told him. he then asks me to open my eyes. he steps back and says

" you have mild cervical dystonia. " i'm like..... " uhhhhhhhhhh......and how is it

exactly you came to that conclusion? " and he said " when you answered the

questions your head pulled to the left " . it was all i could do to not bust out

laughing. here's a guy that don't believe in an eye test for mold exposure but

yet he's gonna ask me about stupid presidents to diagnosed me with a disease

that could possibly leave me disfigured in the future? i don't get it. he also

said he didn't believe that the environment had any connection to the demise of

our immune system. that the human immune system was strong enough to fight off

almost anything. i was dumbfounded by his stupidity. had i not paid 50 bucks i

would have walked out of his office but i figured i'd hang out and see what else

he had to say. so from what i understand my only other option besides oral meds

is botox injections in my neck. which i DO NOT want to do. i just received an

FDA botox warning last wk in my inbox about what its doing to people when it

travels away from the injection site to other areas of the body. how do they get

away with doing this crap to us? he gave me a prescription for a low does of

muscle relaxer and an antidepressant used for fibro pain. one of which i

recently read on the spasmodictorticollis.org website is on the " medications to

avoid " list saying it may cause or worsen the condition. so either this dr wants

me to get worse or he just hasn't really educated himself very much on the

condition. either way it's aggravating. i've only been taking the medication for

about a month. it seemed to help with the pain but the side effects are just

ridiculous and it's making me more depressed. has anyone on here had the same

experience with dystonia or know someone who has or is? i haven't been able to

sleep on my right side in months. i wake up every morning and the pain in my

neck is so bad. it hurts to stretch my shoulder away from my head. i'm showering

in the eve and then again in the morning JUST to try and relax my muscles. i am

currently reading a book some of you may have heard of or would like to read.

it's called " the autoimmune epidemic " by donna jackson nakazawa. it talks mainly

about how our environment and the things (chemicals,heavy metals etc) we come

in contact with are killing us. i am currently doing a heavy metal detox. i am

desperate. 34 yrs old and i barely care about anything anymore. i rarely leave

the house or care to talk to anyone. i'm in so much pain and in such a bad mood

all the time i don't want to be around anyone. any advice from anyone?

>

>

>

[Guest guest]

Hi ,

After your visit with that doctor, I'd say get a 2nd opinion on anything he said. When he asked you the presidents you should have said Lincoln . LOL. I'm not really laughing, he sounds like most of the rest I hate to say.

Educating yourself is your best defense. You're on the right track with the book. I'm not familiar with the dx he gave you but I don't buy into most conventional assessments anymore unless it's a clear cut dx by a test result. Eat healthy, try to live in a non toxic environment, learn about chemical exposures and the body aka: alternative medicine style.

Massage is great. I think they're very therapeutic and healing. Usually one modality doesn't fix everything. Our bodies are complicated and once damaged takes really cleaning up our act to help us heal.

When people detox then can feel sick too, it's a shock to the system, so perhaps your depression are part of that too, I don't know. Take it one day at a time and just start the day with one foot in front of the other with a goal each day. Don't feel you have to conquer the world. You need to heal your body and spirit.. so be kind to yourself with that challenge. It's a tough fight, but diligence has it's own rewards. Even though my health is very challenged, I can do things today I couldn't do before the implants were removed, and the suffering level is not the same at all. There were times I couldn't walk...lor sit in the car from pain. I don't have that anymore. Keep the faith...and keep expressing your feelings. I'm a firm believer in not holding in what troubles you.

I hope you feel better

Hugs,

There would be nothing to frighten you if you refused to be afraid. Gandhi

From: swanna <od_1488@...> Sent: Mon, October 18, 2010 10:01:19 AMSubject: Torticollis

hello all! it's been probably two years since i wrote on here. i had my explant by dr kolb april of 08. she diagnosed me with hypothyroidism and an eye test proved positive for mold exposure. unfortunately it wasn't from my implants. the mold is in my parents house, where i HAVE to live right now. i can't afford to live on my own for having to pay for my surgery and other bills. so i know consistent exposure to unclean air is probably a lot of my problem. i have also had worsening neck pain and widespread pain since the surgery. as well as, fatigue, depression, memory loss, off balance, lightheaded, dizzy, problems getting thoughts together and speaking them, numbness and tingling. i was trying to get massage 2x a month and the chiropractor 1x but massage started to irritate more than relax. i am an ex licensed massage therapist, so to me, massage fixes almost everything. in my case, i'm very disappointed. i had seen my family dr and told him of all

my symptoms i had been having all my blood work came back ok. he suggested i see a neurologist. with a $50 co pay i waited. i started having numbness and burning pain in my right forearm and my chiro said may be a slipped disk and he also said see a neurologist. i had one more visit with him one eve after work and by the 11 the next morning i could barely move my head. that's when i finally went to the neurologist. through NO extensive testing at all he diagnoses me with fibromyalgia and mild cervical dystonia (aka torticollis or wryneck). i had feared the fibro sense i had read that it often coexists with hypothyroidism and generally if you have one autoimmune disease your risk is higher of developing another. i recently read that they think torticollis may be autoimmune related as well. when i told him about my implants and my experience with dr kolb and the eye test for mold he rolled his eyes and shook his head and said he didn't believe it. that it

didn't even matter because we're all exposed to mold. yeah, i get that but a certain amount CAN BE too much. it grows on my clothes, shoes, and anything paper in my bedroom. so after TOTALLY dismissing the eye test for mold he does a little test of his own. i sit in a chair and he asks me to close my eyes (yall are gonna love this) he then asks me who the current president is. now, i'm not very political but i'm not THAT stupid either. but i'm sure most of you on here can relate. when put on the spot, my mind went completely blank (as it so often does) and i couldn't think of anything. i felt so STOOOOOPID! lol then it came to me and i told him. then he asks me who the president was before that. i told him. then he asked the one before that. i told him. he then asks me to open my eyes. he steps back and says "you have mild cervical dystonia." i'm like....."uhhhhhhhhhh......and how is it exactly you came to that conclusion?" and he said "when you

answered the questions your head pulled to the left". it was all i could do to not bust out laughing. here's a guy that don't believe in an eye test for mold exposure but yet he's gonna ask me about stupid presidents to diagnosed me with a disease that could possibly leave me disfigured in the future? i don't get it. he also said he didn't believe that the environment had any connection to the demise of our immune system. that the human immune system was strong enough to fight off almost anything. i was dumbfounded by his stupidity. had i not paid 50 bucks i would have walked out of his office but i figured i'd hang out and see what else he had to say. so from what i understand my only other option besides oral meds is botox injections in my neck. which i DO NOT want to do. i just received an FDA botox warning last wk in my inbox about what its doing to people when it travels away from the injection site to other areas of the body. how do they get away

with doing this crap to us? he gave me a prescription for a low does of muscle relaxer and an antidepressant used for fibro pain. one of which i recently read on the spasmodictorticollis.org website is on the "medications to avoid" list saying it may cause or worsen the condition. so either this dr wants me to get worse or he just hasn't really educated himself very much on the condition. either way it's aggravating. i've only been taking the medication for about a month. it seemed to help with the pain but the side effects are just ridiculous and it's making me more depressed. has anyone on here had the same experience with dystonia or know someone who has or is? i haven't been able to sleep on my right side in months. i wake up every morning and the pain in my neck is so bad. it hurts to stretch my shoulder away from my head. i'm showering in the eve and then again in the morning JUST to try

and relax my muscles. i am currently reading a book some of you may have heard of or would like to read. it's called "the autoimmune epidemic" by donna jackson nakazawa. it talks mainly about how our environment and the things (chemicals,heavy metals etc) we come in contact with are killing us. i am currently doing a heavy metal detox. i am desperate. 34 yrs old and i barely care about anything anymore. i rarely leave the house or care to talk to anyone. i'm in so much pain and in such a bad mood all the time i don't want to be around anyone. any advice from anyone?

[Guest guest]

thanks

actually i when i went to the spasmodictorticollis.org website the diet they

suggested is very much like the fibromyalgia diet. no sugar, coffee, chocolate

(stimulants), alcohol, and starches such as pasta and bread. and yes, lots of

fruits and veggies and lean protein. this diet is actually a lot like the blood

type diet for my blood type (O neg) so it will actually be pretty easy for me to

follow. the hardest part will be the chocolate of course. ='(

i'm trying to restrict a lot of fruit because of candida issues. the candida

diet is also very similar to the other diets. so i'm hoping by eating good,

detoxing and trying to maintain some sort of physically activity it will help. i

had acupuncture one time at my old chiropractors office. i liked it except for

the " clinical " environment i was in. i'd have much rather been in a more serene

setting like for massage. i'll just have to look around and find one in the

event i can afford it. money is a huge issue. i don't want my only alternative

to end up being the pain clinic. i hate taking meds. my thyroid medication is

enough.

my dad actually bought an air purifier for like $500 thats bed in my room for

awhile and i have still found mold growing on stuff. i run fans as well while

i'm gone to keep the air circulating. and i don't sleep in my room anymore

either. i sleep in the extra bedroom upstairs. but my parents also found mold

under the carpet upstairs when they had the kitchen floor redone. my mom gets

onto my dad all the time about it but he's such a " tightwad " he refuses to spend

any money to take care of the problem. GRRRRRRRRRRR!!!!!! MEN!

thank you for the suggestions and the reply.

swanna

=)

> >

> > hello all! it's been probably two years since i wrote on here. i had my

explant by dr kolb april of 08. she diagnosed me with hypothyroidism and an eye

test proved positive for mold exposure. unfortunately it wasn't from my

implants. the mold is in my parents house, where i HAVE to live right now. i

can't afford to live on my own for having to pay for my surgery and other bills.

so i know consistent exposure to unclean air is probably a lot of my problem. i

have also had worsening neck pain and widespread pain since the surgery. as well

as, fatigue, depression, memory loss, off balance, lightheaded, dizzy, problems

getting thoughts together and speaking them, numbness and tingling. i was

trying to get massage 2x a month and the chiropractor 1x but massage started to

irritate more than relax. i am an ex licensed massage therapist, so to me,

massage fixes almost everything. in my case, i'm very disappointed. i had seen

my family dr and told him of all my symptoms i had been having all my blood work

came back ok. he suggested i see a neurologist. with a $50 co pay i waited. i

started having numbness and burning pain in my right forearm and my chiro said

may be a slipped disk and he also said see a neurologist. i had one more visit

with him one eve after work and by the 11 the next morning i could barely move

my head. that's when i finally went to the neurologist. through NO extensive

testing at all he diagnoses me with fibromyalgia and mild cervical dystonia (aka

torticollis or wryneck). i had feared the fibro sense i had read that it often

coexists with hypothyroidism and generally if you have one autoimmune disease

your risk is higher of developing another. i recently read that they think

torticollis may be autoimmune related as well. when i told him about my implants

and my experience with dr kolb and the eye test for mold he rolled his eyes and

shook his head and said he didn't believe it. that it didn't even matter because

we're all exposed to mold. yeah, i get that but a certain amount CAN BE too

much. it grows on my clothes, shoes, and anything paper in my bedroom. so after

TOTALLY dismissing the eye test for mold he does a little test of his own. i sit

in a chair and he asks me to close my eyes (yall are gonna love this) he then

asks me who the current president is. now, i'm not very political but i'm not

THAT stupid either. but i'm sure most of you on here can relate. when put on the

spot, my mind went completely blank (as it so often does) and i couldn't think

of anything. i felt so STOOOOOPID! lol then it came to me and i told him. then

he asks me who the president was before that. i told him. then he asked the one

before that. i told him. he then asks me to open my eyes. he steps back and says

" you have mild cervical dystonia. " i'm like..... " uhhhhhhhhhh......and how is it

exactly you came to that conclusion? " and he said " when you answered the

questions your head pulled to the left " . it was all i could do to not bust out

laughing. here's a guy that don't believe in an eye test for mold exposure but

yet he's gonna ask me about stupid presidents to diagnosed me with a disease

that could possibly leave me disfigured in the future? i don't get it. he also

said he didn't believe that the environment had any connection to the demise of

our immune system. that the human immune system was strong enough to fight off

almost anything. i was dumbfounded by his stupidity. had i not paid 50 bucks i

would have walked out of his office but i figured i'd hang out and see what else

he had to say. so from what i understand my only other option besides oral meds

is botox injections in my neck. which i DO NOT want to do. i just received an

FDA botox warning last wk in my inbox about what its doing to people when it

travels away from the injection site to other areas of the body. how do they get

away with doing this crap to us? he gave me a prescription for a low does of

muscle relaxer and an antidepressant used for fibro pain. one of which i

recently read on the spasmodictorticollis.org website is on the " medications to

avoid " list saying it may cause or worsen the condition. so either this dr wants

me to get worse or he just hasn't really educated himself very much on the

condition. either way it's aggravating. i've only been taking the medication for

about a month. it seemed to help with the pain but the side effects are just

ridiculous and it's making me more depressed. has anyone on here had the same

experience with dystonia or know someone who has or is? i haven't been able to

sleep on my right side in months. i wake up every morning and the pain in my

neck is so bad. it hurts to stretch my shoulder away from my head. i'm showering

in the eve and then again in the morning JUST to try and relax my muscles. i am

currently reading a book some of you may have heard of or would like to read.

it's called " the autoimmune epidemic " by donna jackson nakazawa. it talks mainly

about how our environment and the things (chemicals,heavy metals etc) we come

in contact with are killing us. i am currently doing a heavy metal detox. i am

desperate. 34 yrs old and i barely care about anything anymore. i rarely leave

the house or care to talk to anyone. i'm in so much pain and in such a bad mood

all the time i don't want to be around anyone. any advice from anyone?

> >

> >

> >

>

[Guest guest]

I agree, .

YouTube clips about Faster EFT have helped me with a lot of emotional issues.

Hugs,

M.

  Keep the faith...and keep

> expressing your feelings. I'm a firm believer in not holding in

what troubles

> you.

[Guest guest]

,

i agree and i thought that (second opinion) as soon as i left the office. and i

intend to when i can afford it. what i am afraid of is getting MRI's and so

forth and getting this big surprise bill in the mail. i can't afford any extra

bills right now. my insurance said i havent met my $1000 deductible. after that

they would pay 80%

and yes, i should have said abe. or george HA! i am usually pretty quick witted

but i was in so much pain that day i guess i was off my game. LOL i can be quite

sarcastic. so many times in his office i had to bite my tongue. i think it

irritated him that i had actually educated myself about certain topics and asked

him so many questions in detail. now i'm angry he gave me a medication i

shouldnt even be on. if there is any risk a medication could make it worse i

don't want it. why would i want to risk being more miserable than i am now? who

in their right mind would want that for them self? i'm weaning myself off of it.

i also want to wean myself from the muscle relaxers as well. i'd like my body to

be as " chemical free " as possible.

thanks for taking the time to reply. love the quote at the end of your message.

i notice the older i get the more fears i develop. is it normal to feel as

though you've lost yourself along the way? like " if i could just get back who i

used to be. " and unless you personally know someone else who's in as much pain

and discomfort as you are no one else understands. and they blow you off as if

you're being too melodramatic.

i pray all of us find comfort and wellness on our journeys.

swanna

=)

>

> Hi ,

>

>   After your visit with that doctor, I'd say get a 2nd opinion on anything

he

> said. When he asked you the presidents you should have said Lincoln . LOL.

I'm

> not really laughing, he sounds like most of the rest I hate to say.

>

> Educating yourself is your best defense. You're on the right track with the

> book. I'm not familiar with the dx he gave you but I don't buy into most

> conventional assessments anymore unless it's a clear cut dx by a test

result. 

> Eat healthy, try to live in a non toxic environment, learn about chemical

> exposures and the body aka: alternative medicine style.

>

>

> Massage is great. I think they're very therapeutic and healing.  Usually one

> modality doesn't fix everything. Our bodies are complicated and once damaged

> takes really cleaning up our act to help us heal.

>

> When people detox then can feel sick too, it's a shock to the system, so

perhaps

> your depression are part of that too, I don't know. Take it one day at a time

> and just start the day with one foot in front of the other with a goal each

day.

> Don't feel you have to conquer the world. You need to heal your body and

> spirit.. so be kind to yourself with that challenge. It's a tough fight, but

> diligence has it's own rewards. Even though my health is very challenged, I

can

> do things today I couldn't do before the implants were removed, and the

> suffering level is not the same at all. There were times I couldn't

walk...lor

> sit in the car from pain. I don't have that anymore.  Keep the faith...and

keep

> expressing your feelings. I'm a firm believer in not holding in

what troubles

> you.

>

> I hope you feel better

>  

>  

> Hugs,

>

>  

> There would be nothing to frighten you if you refused to be afraid. Gandhi

>

>

>

>

> ________________________________

> From: swanna <od_1488@...>

>

> Sent: Mon, October 18, 2010 10:01:19 AM

> Subject: Torticollis

>

>  

> hello all! it's been probably two years since i wrote on here. i had my

explant

> by dr kolb april of 08. she diagnosed me with hypothyroidism and an eye test

> proved positive for mold exposure. unfortunately it wasn't from my implants.

the

> mold is in my parents house, where i HAVE to live right now. i can't afford to

> live on my own for having to pay for my surgery and other bills. so i know

> consistent exposure to unclean air is probably a lot of my problem. i have

also

> had worsening neck pain and widespread pain since the surgery. as well as,

> fatigue, depression, memory loss, off balance, lightheaded, dizzy, problems

> getting thoughts together and speaking them, numbness and tingling. i was

trying

> to get massage 2x a month and the chiropractor 1x but massage started to

> irritate more than relax. i am an ex licensed massage therapist, so to me,

> massage fixes almost everything. in my case, i'm very disappointed. i had seen

> my family dr and told him of all my symptoms i had been having all my blood

work

> came back ok. he suggested i see a neurologist. with a $50 co pay i waited. i

> started having numbness and burning pain in my right forearm and my chiro said

> may be a slipped disk and he also said see a neurologist. i had one more visit

> with him one eve after work and by the 11 the next morning i could barely move

> my head. that's when i finally went to the neurologist. through NO extensive

> testing at all he diagnoses me with fibromyalgia and mild cervical dystonia

(aka

> torticollis or wryneck). i had feared the fibro sense i had read that it often

> coexists with hypothyroidism and generally if you have one autoimmune disease

> your risk is higher of developing another. i recently read that they think

> torticollis may be autoimmune related as well. when i told him about my

implants

> and my experience with dr kolb and the eye test for mold he rolled his eyes

and

> shook his head and said he didn't believe it. that it didn't even matter

because

> we're all exposed to mold. yeah, i get that but a certain amount CAN BE too

> much. it grows on my clothes, shoes, and anything paper in my bedroom. so

after

> TOTALLY dismissing the eye test for mold he does a little test of his own. i

sit

> in a chair and he asks me to close my eyes (yall are gonna love this) he then

> asks me who the current president is. now, i'm not very political but i'm not

> THAT stupid either. but i'm sure most of you on here can relate. when put on

the

> spot, my mind went completely blank (as it so often does) and i couldn't think

> of anything. i felt so STOOOOOPID! lol then it came to me and i told him. then

> he asks me who the president was before that. i told him. then he asked the

one

> before that. i told him. he then asks me to open my eyes. he steps back and

says

> " you have mild cervical dystonia. " i'm like..... " uhhhhhhhhhh......and how is

it

> exactly you came to that conclusion? " and he said " when you answered the

> questions your head pulled to the left " . it was all i could do to not bust out

> laughing. here's a guy that don't believe in an eye test for mold exposure but

> yet he's gonna ask me about stupid presidents to diagnosed me with a disease

> that could possibly leave me disfigured in the future? i don't get it. he also

> said he didn't believe that the environment had any connection to the demise

of

> our immune system. that the human immune system was strong enough to fight off

> almost anything. i was dumbfounded by his stupidity. had i not paid 50 bucks i

> would have walked out of his office but i figured i'd hang out and see what

else

> he had to say. so from what i understand my only other option besides oral

meds

> is botox injections in my neck. which i DO NOT want to do. i just received an

> FDA botox warning last wk in my inbox about what its doing to people when it

> travels away from the injection site to other areas of the body. how do they

get

> away with doing this crap to us? he gave me a prescription for a low does of

> muscle relaxer and an antidepressant used for fibro pain. one of which i

> recently read on the spasmodictorticollis.org website is on the " medications

to

> avoid " list saying it may cause or worsen the condition. so either this dr

wants

> me to get worse or he just hasn't really educated himself very much on the

> condition. either way it's aggravating. i've only been taking the medication

for

> about a month. it seemed to help with the pain but the side effects are just

> ridiculous and it's making me more depressed. has anyone on here had the same

> experience with dystonia or know someone who has or is? i haven't been able to

> sleep on my right side in months. i wake up every morning and the pain in my

> neck is so bad. it hurts to stretch my shoulder away from my head. i'm

showering

> in the eve and then again in the morning JUST to try and relax my muscles. i

am

> currently reading a book some of you may have heard of or would like to read.

> it's called " the autoimmune epidemic " by donna jackson nakazawa. it talks

mainly

> about how our environment and the things (chemicals,heavy metals etc) we come

in

> contact with are killing us. i am currently doing a heavy metal detox. i am

> desperate. 34 yrs old and i barely care about anything anymore. i rarely leave

> the house or care to talk to anyone. i'm in so much pain and in such a bad

mood

> all the time i don't want to be around anyone. any advice from anyone?

>

>

>

[Guest guest]

~

I highly suggest a sleep study, http://en.wikipedia.org/wiki/Polysomnography

When I had mine a few months ago, it not only

showed I was having 80 oxygen sats, but it

showed that my brain was also not sending

signals for me to breathe several times a night !

They can also tell if you need pain management

at night and all kinds of things......

I highly suggest everyone get one that has

chronic illness..... ! !

When the power of love

overcomes the love of power

the world will know peace.

~ Jimi Hendrix

Re: Torticollis

ohh noooo bev! i hate to hear that about the capsules. will they have to go in and do another surgery? from everything i've read it seems thats always the case because they cause so many problems. what a mess we get ourselves into just to look better and feel more accepted. it's still hard after two years to accept what i see in the mirror after what i was so used to seeing for like 8 yrs. i'm so angry at myself because after i had them put in i had a lot of nerve damage on my right side. my right nipple is numb and can only feel sharp shooting pains when touched or squeezed to hard. i even have numbness in my left arm ever since. but i am thankful they're no longer in my body doing more damage. i used to be really close friends with a naturopath (debbie). when i got my massage certification her and i worked together. in one building she had her herb shop and done muscle response monitor testing and put programs together for people and i had my massage business. she helped me and my family with so much and i learned A LOT from her about natural medicine. she got me into aromatherapy as well so i incorporated it into my business. she died of cancer years back and now i really need her and miss her. she saved me so many dr visits with her knowledge. it IS true that everyone comes into our life for a reason. if it weren't for her i wouldn't believe in herbs as much as i do. she was a nature's sunshine distributor so that's where i get most of my stuff. i'm doing their heavy metal and yeast/fungal detox now. i stopped taking the antidepressant. i've had a couple of headaches but it's probably my body ridding itself of other crap too. not to mention i haven't had coffee, chocolate, white starchy carbs or sugar for a week now. i'm currently weaning myself from the muscle relaxer. the withdrawl symptoms are more severe being, seizures and hallucinations. so i'm gonna be careful with that. it's just irritating to do all this good for myself an d still have to live in a toxic environment. not to mention i work in a very old, very dusty warehouse that use to be a stroh's brewery. every time it rains there are puddles of water everywhere. so i can only imagine what i breath here as well. we have heat but the other side is not heated so the doors are lifted frequently for the forklifts and the heat escapes. so naturally what does the body do to heat itself? shiver. muscles contract which aggravates my neck and shoulder condition. i'm sitting here now w a space heater under my desk at my feet. but my hands and nose are freezing. see what i gotta deal with here? LOL GEEEZ!

well the dr said all my problems were coming from the fibromyalgia and me not getting enough restful sleep. so the combo of the antidepressant and muscle relaxers at bedtime were helping with that also. i've always been a light sleeper. now i'm back to waking in the middle of the night and tossing and turning. Grrrrr...

i'd like to do more relaxation techniques and get back to the things i learned in massage therapy school. BEFORE the implants. meditation, yoga and tai chi. but it's kinda pointless and doesn't feel very healthy to pull out my little mat and take in all these deep breaths of moldy air. LOL i'm lying there the whole time imagining all these little mold spores being sucked up into my nose. and that reminds me of what you said about mold being linked to cancer. i read sometime back about that roman oncologist that discovered cancer IS fungus and he's curing it with baking soda and ticking off all these drs. i watched him on this video and i couldn't believe it. but it does makes sense. then i get paranoid thinking as many issues as i had with yeast all my life i'm probably eat up with cancer and don't know it yet. my friend debbie had tested me on the muscle response monitor and she said i had systematic candida worst than anyone she had ever seen. and a lot of it was probably f rom all the ear infections i had as a kid and all the stupid antibiotic i had to take. i haven't had chocolate in a week. i'm bout to go nuts. my mom fixed oatmeal chocolate chip cookies last night and then broke out all this chocolate candy making halloween baggies for the little kids. i could have choked her with all the temptation. LOL what's real funny is wed we had a benefit fair at our company and i won the door prize from sam's club. guess what the prize was? a christmas sled full of ghirardelli dark chocolates (MY FAV!) and hot cocoa mix. LMAO! i was like "WHAT is goin on here? it's like a conspiracy to ruin my life." but i was estatic at the same time because i have the worst luck and never win anything. i almost stopped at the store on the way home and bought a lottery ticket. but i was too tired and lazy so just drove home. LOL

i gotta get back into working out again. the meds made me so tired all i wanted to do was go home and go to bed. hopefully i'll start getting some energy back soon. thanks bev for the reply. guess i'll shut my mouf now. lol i wish you well.

swanna

=)

>

> hi swanna- i'm 32 and can totally relate to all the things you said you feel.. i too have your symptoms and was explanted about a month ago but my ps left in the capsules, even though i wanted them out. i went from a happy, healthy, social person to well, the opposite in a nutshell.. i was a successful hairdresser booked 5 days a week supporting my husband and i while he got his new career off the ground, to all the sudden sick as a dog and barely able to feed myself.

> i am continually blown away when i read the things doctors say and do.. he perscribed you the anti depressants not for pain but because he thinks you're depressed and all the other symptoms come along with it. he is obviously clueless. people can DIE of toxic mold exposure, why can't they understand...they have linked mold to cancer for goodness sake...i am so sorry you have to live around it and especially being a massage therapist. you used to make people healthy! so did dr kolb have any advice on why you're still ill? did you take the anti fungals after explant? and do the whole detox program? i am not familiar with hers but i've heard it's pretty successful. i am on my own detox with my chiro. here in CA . and as i was telling another girl on here. my new attempt is thanks to dede's message about some people having or not having i should say, the genetics to get rid of biotoxins in their liver so the toxins are recirculated in our bodies thru the bl oodstream. there is a medication to help, but i'm sticking to the natural stuff which my doc translated to Chlorella. it binds the biotoxins and then pulls them out of the body . any prescription medications have some sort of chemicals that our liver and kidneys have to strain to get out and they're already under enough stress. it sounds like you still have a lot of toxicity going on...of course you're in a bad mood poor thing... i would definitely not focus on taking prescriptions to help the pain, but continue to detox to get rid of the root of the problem. i've learned from these girls that nothing is a quick fix we just have to persevere so stay close for support. i think it's always good to share what's working and what's not because we are all on the same path and that is to regain our health!

> hopes of healing

> bev.

>

> ----- Torticollis

> Date: Mon, 18 Oct 2010 14:01:19 -0000

>

> hello all! it's been probably two years since i wrote on here. i had my explant by dr kolb april of 08. she diagnosed me with hypothyroidism and an eye test proved positive for mold exposure. unfortunately it wasn't from my implants. the mold is in my parents house, where i HAVE to live right now. i can't afford to live on my own for having to pay for my surgery and other bills. so i know consistent exposure to unclean air is probably a lot of my problem. i have also had worsening neck pain and widespread pain since the surgery. as well as, fatigue, depression, memory loss, off balance, lightheaded, dizzy, problems getting thoughts together and speaking them, numbness and tingling. i was trying to get massage 2x a month and the chiropractor 1x but massage started to irritate more than relax. i am an ex licensed massage therapist, so to me, massage fixes almost everything. in my case, i'm very disappointed. i had seen my family dr and told him of all my symptoms i had be en having all my blood work came back ok. he suggested i see a neurologist. with a $50 co pay i waited. i started having numbness and burning pain in my right forearm and my chiro said may be a slipped disk and he also said see a neurologist. i had one more visit with him one eve after work and by the 11 the next morning i could barely move my head. that's when i finally went to the neurologist. through NO extensive testing at all he diagnoses me with fibromyalgia and mild cervical dystonia (aka torticollis or wryneck). i had feared the fibro sense i had read that it often coexists with hypothyroidism and generally if you have one autoimmune disease your risk is higher of developing another. i recently read that they think torticollis may be autoimmune related as well. when i told him about my implants and my experience with dr kolb and the eye test for mold he rolled his eyes and shook his head and said he didn't believe it. that it didn't even matter because we're all expo sed to mold. yeah, i get that but a certain amount CAN BE too much. it grows on my clothes, shoes, and anything paper in my bedroom. so after TOTALLY dismissing the eye test for mold he does a little test of his own. i sit in a chair and he asks me to close my eyes (yall are gonna love this) he then asks me who the current president is. now, i'm not very political but i'm not THAT stupid either. but i'm sure most of you on here can relate. when put on the spot, my mind went completely blank (as it so often does) and i couldn't think of anything. i felt so STOOOOOPID! lol then it came to me and i told him. then he asks me who the president was before that. i told him. then he asked the one before that. i told him. he then asks me to open my eyes. he steps back and says "you have mild cervical dystonia." i'm like....."uhhhhhhhhhh......and how is it exactly you came to that conclusion?" and he said "when you answered the questions your head pulled to th e left". it was all i could do to not bust out laughing. here's a guy that don't believe in an eye test for mold exposure but yet he's gonna ask me about stupid presidents to diagnosed me with a disease that could possibly leave me disfigured in the future? i don't get it. he also said he didn't believe that the environment had any connection to the demise of our immune system. that the human immune system was strong enough to fight off almost anything. i was dumbfounded by his stupidity. had i not paid 50 bucks i would have walked out of his office but i figured i'd hang out and see what else he had to say. so from what i understand my only other option besides oral meds is botox injections in my neck. which i DO NOT want to do. i just received an FDA botox warning last wk in my inbox about what its doing to people when it travels away from the injection site to other areas of the body. how do they get away with doing this crap to us? he gave me a prescription for a lo w does of muscle relaxer and an antidepressant used for fibro pain. one of which i recently read on the spasmodictorticollis.org website is on the "medications to avoid" list saying it may cause or worsen the condition. so either this dr wants me to get worse or he just hasn't really educated himself very much on the condition. either way it's aggravating. i've only been taking the medication for about a month. it seemed to help with the pain but the side effects are just ridiculous and it's making me more depressed. has anyone on here had the same experience with dystonia or know someone who has or is? i haven't been able to sleep on my right side in months. i wake up every morning and the pain in my neck is so bad. it hurts to stretch my shoulder away from my head. i'm showering in the eve and then again in the morning JUST to try and relax my muscles. i am currently reading a book some of you may have heard of or would like to read. it's called "the autoimm une epidemic" by donna jackson nakazawa. it talks mainly about how our environment and the things (chemicals,heavy metals etc) we come in contact with are killing us. i am currently doing a heavy metal detox. i am desperate. 34 yrs old and i barely care about anything anymore. i rarely leave the house or care to talk to anyone. i'm in so much pain and in such a bad mood all the time i don't want to be around anyone. any advice from anyone?

>

>

>

>

>

> ------------------------------------

>

>