New member introduction

Report post · May 16, 2007

At 04:24 AM 5/16/07, you wrote:

>I have horrible pain in the shoulders,as well as my arms and of

>course my neck.

>I also have a lot of pain in my low back[bulging disc at

>L4-5,ruptured at L5-S1] and very bad sciatica in both legs.

Larry when you say Shoulders where do you mean. My pain is a

constant gnawing to full blown pain under the shoulder blade. I had

neck surgery that cleaned out bone spurs and fused 2 levels, but it

did nothing but increase the pain. Countless test have not found the

root cause of this pain. Where in your shoulders is your pain? Thanks, Dave

Report post · October 1, 2007

Hi Lee,

Well I have a few non-specific symptoms: slight depression, fatigue,

loss of libido, mood swings, some menstrual fluctuations, and I am

generally overweight. I've had these for a while now though, ever

since I lost my baby Son 3 years ago when I had severe pre-eclampsia

and he was born premature.

None of my symptoms were severe enough for me to worry, and the

goitre is only slightly visible on the outside, so I put it down to

having extra weight around my neck.

It's been there for at least two years. The breathing trouble was

down to smoking I was told, by my GP, when I went to him about a

restricted feeling in my throat!!

It was only on a birthday trip in July to a spa where I had a

shoulder and neck massage that the girl told me the lump wasn't

normal. 3 days later I saw another GP who immediately referred me.

I had a thyroid blood test at the GP surgery, then a ultrasound and

CT at the hospital.

They have never discussed any other options with me, just booked me

in for surgery....

>

> Hi ,

>

> Welcome to this group! It's a brilliant bunch!

>

> Did you have any other symptoms along with the goitre? DId your

doctor

> prescribe anything for you or run tests in the interim?

>

> Lee

>

> > My name is , I'm 28, married, Mum to Evie 2.5.

> > I have a large benign Goitre which is restricting my airway, so

I am

> > facing a total Thyroidectomy in the next few months.

> > I joined this group to hopefully meet people who have been

through

> > similar, and for support post surgery with my medication etc.

> > I look forward to being part of your community.

> > Regards,

> >

>

Report post · October 1, 2007

****I had a thyroid blood test at the GP surgery, then a ultrasound and CT at the hospital. They have never discussed any other options with me, just booked me in for surgery....

Hello , and welcome to this wonderful list. I am not one of the most experienced members on here, and can't give much advice ... but what you just said above is causing me concern. Please do not let anybody with a knife anywhere near your neck until and unless the porposed surgery has been explained in detail to you as well as the plan for treatment after the operation.... and, most of all, the necessity for surgery in the first place. I am not saying it's not necessary - I am no judge of that - but you need to be put fully into the picture of what to expect - risks and all - before a possible operation. I would also highly recommend for you (and anybody) to read Dr. Barry Peatfield's book "Your thyroid and how to keep it healthy" [ ISBN 1-905140-10-X ]. Dr. Peatfield also has to say a word or two about goiter operations. The book is not expensive , only around £ 10, but it gives you an invaluable inside and understanding about the functioning of the endocrine system and the thyroid in particular. Please don't accept a GP's verdict about an operation without fully understanding what is going on... and in good time. It's no good talking it all through on the eve of the operation, when you are already sitting in the hospital bed in your nighty, waiting for the Anaesthetist to come along with the consent form....

Best wishes,

Report post · October 1, 2007

Hi ,

I think that has raised an important point here. I've

heard that some goitres can shrink with treatment by thyroid hormone

replacement. I had a visible (to me and my family) lump in my

throat before self treating with armour which has disappeared as far

as I can discern. Of course my GP never spotted anything and wasn't

interested when I mentioned it.

I certainly wouldn't be happy to get rushed in to have such an

operation without a thorough explanation of the operation and the

risks it carries with it.

Google thyriodectomy risks and see what you come up with. Here's

one link I found:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1496889

Luv Bella

>

> Hello , and welcome to this wonderful list. I am not one of

the most experienced members on here, and can't give much advice ...

but what you just said above is causing me concern. Please do not

let anybody with a knife anywhere near your neck until and unless

the porposed surgery has been explained in detail to you as well as

the plan for treatment after the operation.... and, most of all, the

necessity for surgery in the first place.

Report post · October 8, 2007

Ask your GP to test to see if you have antibodies to your thyroid. If you have , they can gradually destroy your thyroid tissue and you will not be able to produce the thyroid hormones your body needs. Having antibodies can cause a goitre and the majority of doctors fail to test for antibodies. Also ask to have your Ferritin level (stored iron) checked.

Luv - Sheila

----- Original Message -----

Hi Lee,Well I have a few non-specific symptoms: slight depression, fatigue, loss of libido, mood swings, some menstrual fluctuations, and I am generally overweight. I've had these for a while now though, ever since I lost my baby Son 3 years ago when I had severe pre-eclampsia and he was born premature.None of my symptoms were severe enough for me to worry, and the goitre is only slightly visible on the outside, so I put it down to having extra weight around my neck.It's been there for at least two years. The breathing trouble was down to smoking I was told, by my GP, when I went to him about a restricted feeling in my throat!!It was only on a birthday trip in July to a spa where I had a shoulder and neck massage that the girl told me the lump wasn't normal. 3 days later I saw another GP who immediately referred me.I had a thyroid blood test at the GP surgery, then a ultrasound and CT at the hospital.They have never discussed any other options with me, just booked me in for surgery....

..

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Report post · November 11, 2007

Hi callie, welcome to the group. Marsha

Sent via BlackBerry from T-Mobile

New member introduction

Hello

I have just joined this group and would like to introduce myself. I

am a thirty something woman who was diagnosed with DDD and neuropathy

4 yrs back after several years with constant pain and weakness in the

neck and arms. After meeeting with several dr's and trying many

alternative treatments I finally had a Anterior Cervical Diskectomy

and Spinal Fusion in the C5-6 and C6-7 due to ruptures a little over

a month ago. Have several more that are degenerating and are pre-

rupture but the ones that were operated on were the worst. I have

been looking for a good support group for years and finally stumbled

across this group a few days ago.

I just want to say I am looking forward to being a member, getting to

know you all and understanding, learing and giving/receiving support.

Thanks and God Bless!

Callie W.

Report post · November 12, 2007

Hello

Thanks you so much for the welcome, Marsha. I am grateful to become a

member of this group. It helps to know I am not alone in this, that

there are others who are experiencing the same spinal issues I am -

even if they are/have different experiences, symptoms, meds,

treatments, levels of pain or side effects. I look forwrd to gleaning

much helpful and useful information on my condition from past,

present and future emails and look forward to maybe helping someone

else as well - even if it is only words of encouragement. We all need

lifting up once in a while during this struggle, and a kind word,

thought or deed can go a long way into changing someones day. You

helped change my day, thanks so much!

Blessings,

Callie

>

> Hi callie, welcome to the group. Marsha

Report post · February 25, 2008

Well Joan, you are a woman after my own heart. I love assertive women, and assertive you definitely have been and look what you have got for it. Congratulations.

There are several conditions that reduce the conversion of T4 to T3 such as aging, obesity, disease, stress, exercise, malnutrition, etc., that reduce the efficacy of a T4 alone treatment. There are toxic substances such as phenols, cadmium, and mercury, etc, and medications such as propranolol, amiodarone and several others may interfere by inhibiting the T4 to T3 conversion. Deficiencies in hormones, such as T3 itself, TSH, growth hormone, insulin, cortisone and certain trace elements such as selenium, iron, zinc, copper, iodine, that partially block this essential conversion step for thyroid function. On the other hand, excess hormones such as glucocorticoids, ACTH, oestrogens and some trace elements may slow down the conversion of T4 to T3. The absorption of oral T4 can be variable (50 to 73%), contrasting with that of T3 that is more constant and efficient (95%).

You can send this information (with references) and lots, lots more to both your GP and endocrinologist when we have completed the paper on Armour thyroid and T4/T3 combination therapy that have been written in response to the BTA Statement on their Website about these. It's time our doctors did a little light reading, and if, after we send these papers to them all, they STILL come out with the statements that your GP and endocrinologist have, you can hit them where it hurts.

Luv - Sheila

Saw GP who had not even noticed the PTO on his letter from consultantand I had to point it out to him. I told him I did not like him andwould be canceling my hospital appointment as I had no confidence inthis person.My GP hates to discuss Armour and will have nothing to do with it.How ever I managed to convince him that I knew it would help me and Iwould buy it my self and asked him to test me some time in April whichhe has reluctantly agreed to do.For the past 3 weeks I have been taking 1 grain a day in 2 separatedoses and now think I shall add another half grain. Please could you advise? I am feeling much better even on this low dose!I am so thankful to have found this group and all the information here.Thank you so much.Please accept my apologies for my very wordy introduction.Just one month ago I could not be bothered to type any thing LOL!Best Wishes to all,Joan

Report post · February 25, 2008

-Dear Joan, i just want to say that i found your message inspiring. I

too have had a similar experience to your just recently. I have this

evening ordered armour - i am so excited! whatch this space! I am also

speaking with Dr P. on Monday - i hear he is wonderful! Gail x

-- In thyroid treatment , " merlymoodle "

<joan.scorer@...> wrote:

>

> Hi Sheila and all,

>

> Thank you for welcoming me to this fantastic group. I have taken your

> advice Sheila and now have message digest.

>

> I have been hypo. for over 30 years, Hashi.

>

> Over this time I have experienced many highs and lows and all the

> usual problems which we all get from this condition.

>

> I will just tell you about my latest experience if I may.

>

> I have been on 100 mcg. Eltroxin for a few years. I have had all the

> usual problems during this time which my GP dismisses as he says my

> results 'show that it is not thyroid related'

>

> In August 07 my result was TSH 0.19 Free T4 17.3. My GP has been

> insisting for years that I must have depression as my husband has

> cancer and heart failure and our son has just gone into remission from

> cancer after having many tumours over the past 8 years.

> How ever I know I am not depressed and I have been asking for a T3

> test as I have suspected that I am a poor converter.

> He said that was rubbish and they do not do T3 testing these days and

> if I started with antidepressants I would feel much better.

>

> I refused and asked to be seen by an Endo. I saw a consultant at our

> local hospital in November. He had a very unfortunate manner and he

> had a letter from my GP which he was reading. He hardly looked up and

> the only question he asked was,'What kind of cancer does your son have'?

> He said the results from August were fine and if any thing I was over

> medicated.

> We then had a 'heated discussion'.

> He also refused to believe my theory of low T3.In the end he said that

> to prove he was right and I had no idea what I was talking about he

> would test T3 and I should forget about my thyroid and accept that I

> had depression!

> I am so glad that I requested a copy of the letter he sent to the Gp

> to be sent to me also.

> He had dictated this right after seeing me and said he would not need

> to see me again and he agreed with GP. Also said that HOW EVER he had

> agreed to test T3!

> Well at the bottom of the letter was PTO and a new date as he had

> results from T3 blood test. TSH 0.42 T3 3.8 which he said as

> slightly low.He said rather than give T3 he should increase T4 to

> 125mcg as this would increase T3 level and possibly my symptoms!He

> said he would see me in his clinic in 4 months. I don't think so!

>

> Saw GP who had not even noticed the PTO on his letter from consultant

> and I had to point it out to him. I told him I did not like him and

> would be canceling my hospital appointment as I had no confidence in

> this person.

> My GP hates to discuss Armour and will have nothing to do with it.

> How ever I managed to convince him that I knew it would help me and I

> would buy it my self and asked him to test me some time in April which

> he has reluctantly agreed to do.

> For the past 3 weeks I have been taking 1 grain a day in 2 separate

> doses and now think I shall add another half grain.

> Please could you advise? I am feeling much better even on this low dose!

> I am so thankful to have found this group and all the information here.

> Thank you so much.

> Please accept my apologies for my very wordy introduction.

> Just one month ago I could not be bothered to type any thing LOL!

>

> Best Wishes to all,

> Joan

>

Report post · February 25, 2008

Hi Gail,Thank you. I feel lucky to have found this group as we can often feel so alone with our problems.I really do hope that you will feel better with Armour and I am very interested in Dr. P. I have read his book and every one says how wonderful he is.I shall indeed 'watch this space' Gail.Good luck and I shall be thinking of you. Joanxgaildavies94 <gail_davies@...> wrote: -Dear Joan, i just want to say that i found your

message inspiring. I too have had a similar experience to your just recently. I have this evening ordered armour - i am so excited! whatch this space! I am also speaking with Dr P. on Monday - i hear he is wonderful! Gail x -- In thyroid treatment , "merlymoodle" <joan.scorer@...> wrote: > > Hi Sheila and all, > > Thank you for welcoming me to this fantastic group. I have taken your > advice Sheila and now have message digest. > > I have been hypo. for over 30 years, Hashi. > > Over this time I have experienced many highs and lows and all the > usual problems which we all get from this condition. > > I will just tell you about my latest experience if I may. > > I have been on 100 mcg. Eltroxin for a few years. I have had all the > usual

problems during this time which my GP dismisses as he says my > results 'show that it is not thyroid related' > > In August 07 my result was TSH 0.19 Free T4 17.3. My GP has been > insisting for years that I must have depression as my husband has > cancer and heart failure and our son has just gone into remission from > cancer after having many tumours over the past 8 years. > How ever I know I am not depressed and I have been asking for a T3 > test as I have suspected that I am a poor converter. > He said that was rubbish and they do not do T3 testing these days and > if I started with antidepressants I would feel much better. > > I refused and asked to be seen by an Endo. I saw a consultant at our > local hospital in November. He had a very unfortunate manner and he > had a letter from my GP which he was reading. He hardly looked up and > the only question he asked

was,'What kind of cancer does your son have'? > He said the results from August were fine and if any thing I was over > medicated. > We then had a 'heated discussion'. > He also refused to believe my theory of low T3.In the end he said that > to prove he was right and I had no idea what I was talking about he > would test T3 and I should forget about my thyroid and accept that I > had depression! > I am so glad that I requested a copy of the letter he sent to the Gp > to be sent to me also. > He had dictated this right after seeing me and said he would not need > to see me again and he agreed with GP. Also said that HOW EVER he had > agreed to test T3! > Well at the bottom of the letter was PTO and a new date as he had > results from T3 blood test. TSH 0.42 T3 3.8 which he said as > slightly low.He said rather than give T3 he should increase T4 to > 125mcg as

this would increase T3 level and possibly my symptoms!He > said he would see me in his clinic in 4 months. I don't think so! > > Saw GP who had not even noticed the PTO on his letter from consultant > and I had to point it out to him. I told him I did not like him and > would be canceling my hospital appointment as I had no confidence in > this person. > My GP hates to discuss Armour and will have nothing to do with it. > How ever I managed to convince him that I knew it would help me and I > would buy it my self and asked him to test me some time in April which > he has reluctantly agreed to do. > For the past 3 weeks I have been taking 1 grain a day in 2 separate > doses and now think I shall add another half grain. > Please could you advise? I am feeling much better even on this low dose! > I am so thankful to have found this group and all the information here. >

Thank you so much. > Please accept my apologies for my very wordy introduction. > Just one month ago I could not be bothered to type any thing LOL! > > Best Wishes to all, > Joan >

Report post · February 26, 2008

H Joan

Where about in the UK do you live and have you considered an appointment with Dr Peatfield. The one thing I cannot emphacise strongly enough is that if you remain ill within the NHS and you know you are wasting your time, then, if possible, do please see a private doctor who specialises in thyroid rather than those who only give a diagnosis of depression because they cannot find out what's wrong with their patient. Get your life back as soon as possible. Let me know and I will see if I can find you such a doctor in your area.

Luv - Sheila

Hi Gail,Thank you. I feel lucky to have found this group as we can often feel so alone with our problems.I really do hope that you will feel better with Armour and I am very interested in Dr. P. I have read his book and every one says how wonderful he is.I shall indeed 'watch this space' Gail.Good luck and I shall be thinking of you. Joanx

..

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Report post · February 26, 2008

Hi Sheila,I live in the North East between Sunderland and Newcastle-upon-Tyne. I have been thinking of seeing a private doctor as I really am wasting my time with in NHS.As I said in my introduction I am trying Armour and hoping that it will make a difference which it seems to be doing already. After 3 weeks I have increased my dose to one and a half grains a day.Considering the results I gave in my introduction could I have your opinion on this please?If there is no change in how I feel I will certainly consider your suggestion.I really appreciate your help Sheila, thank you so much. Best

wishes, Joanxsheilaturner <sheilaturner@...> wrote: H Joan Where about in the UK do you live and have you considered an appointment with Dr Peatfield. The one thing

I cannot emphacise strongly enough is that if you remain ill within the NHS and you know you are wasting your time, then, if possible, do please see a private doctor who specialises in thyroid rather than those who only give a diagnosis of depression because they cannot find out what's wrong with their patient. Get your life back as soon as possible. Let me know and I will see if I can find you such a doctor in your area. Luv - Sheila Hi Gail,Thank you. I feel lucky to have found this group as we can often feel so alone with our problems.I really

do hope that you will feel better with Armour and I am very interested in Dr. P. I have read his book and every one says how wonderful he is.I shall indeed 'watch this space' Gail.Good luck and I shall be thinking of you. Joanx . No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1297 - Release Date: 25/02/2008 09:22

Report post · February 26, 2008

Hi joan,

Sadly a common story- the refusal to believe that T3 is really

important and that conversion does exist does untold damage.

Are you taking the Armour in addition to your T4 or instead of?

Subject: New Member Introduction

He had dictated this right after seeing me and said he would not need

to see me again and he agreed with GP. Also said that HOW EVER he had

agreed to test T3!

Well at the bottom of the letter was PTO and a new date as he had

results from T3 blood test. TSH 0.42 T3 3.8 which he said as

slightly low.He said rather than give T3 he should increase T4 to

125mcg as this would increase T3 level and possibly my symptoms!He

said he would see me in his clinic in 4 months. I don't think so!

Saw GP who had not even noticed the PTO on his letter from consultant

and I had to point it out to him. I told him I did not like him and

would be canceling my hospital appointment as I had no confidence in

this person.

My GP hates to discuss Armour and will have nothing to do with it.

How ever I managed to convince him that I knew it would help me and I

would buy it my self and asked him to test me some time in April which

he has reluctantly agreed to do.

For the past 3 weeks I have been taking 1 grain a day in 2 separate

doses and now think I shall add another half grain.

Please could you advise? I am feeling much better even on this low dose!

I am so thankful to have found this group and all the information here.

Thank you so much.

Please accept my apologies for my very wordy introduction.

Just one month ago I could not be bothered to type any thing LOL!

Best Wishes to all,

Joan

Messages are not a substitute for professional medical advice. Always

consult with a suitably qualified practitioner before changing medication.

Report post · February 26, 2008

Hi Sheila,Thank you so much for this wonderful opportunity. I would love to come but unfortunately due to the health problems of my husband and son who are cancer patients I am unable to accept at this time.I am over whelmed by the kindness and support on this site. Joan xxxsheilaturner <sheilaturner@...> wrote: Could you get down to North Yorkshire (my cottage) at the end of March? I have a cancellation for Dr Peatfield's clinic on Friday 28th March. If you could, perhaps you could stay over for our TPA-UK Yorkshire Get Together on the Saturday. We have B and B in the village if this is something that would interest you. Both Dr Skinner and Dr Peatfield are coming to our Get Together which is a very informal and fun time. So far, we have 30 people coming and we have booked a Chinese/Thia Restaurant in Keighley which we are taking over from 12.30p.n. until 4.00p.m. This is our third Get Together and everybody enjoys it. It is so nice to put a face to the member, if you know what I mean. Anybody else who would like to come to our Yorkshire Get Together, please let me know as I need to know how many to book in at the

restaurant. The 3 course buffet costs £6.50. If you are bringing a partner with you let me know this too., Anyway, if you would like to take up this appointment, please let me know as soon as possible. Luv - Sheila Hi

Sheila,I live in the North East between Sunderland and Newcastle-upon-Tyne. I have been thinking of seeing a private doctor as I really am wasting my time with in NHS.As I said in my introduction I am trying Armour and hoping that it will make a difference which it seems to be doing already. After 3 weeks I have increased my dose to one and a half grains a day.Considering the results I gave in my introduction could I have your opinion on this please?If there is no change in how I feel I will certainly consider your suggestion.I really appreciate your help Sheila, thank you so much. Best wishes, Joanxsheilaturner <sheilaturnertpa-uk (DOT) org.uk> wrote: H Joan Where about in the UK do you live and have you considered an appointment with Dr Peatfield. The one thing I cannot emphacise strongly enough is that if you remain ill within the NHS and you know you are wasting your time, then, if possible, do please see a private doctor who specialises in thyroid rather than those who only give a diagnosis of depression because they cannot find out what's wrong with their patient. Get your life back as soon as possible. Let me know and I will see if I can find you such a doctor in your area. Luv - Sheila Hi Gail,Thank you. I feel lucky to have found this group as we can often feel so alone with our problems.I really do hope that you will feel better with Armour and I am very interested in Dr. P. I have read his book and every one says how wonderful he is.I shall indeed 'watch this space'

Gail.Good luck and I shall be thinking of you. Joanx . No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1297 - Release Date: 25/02/2008 09:22 No virus found in this incoming

message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.21.1/1297 - Release Date: 25/02/2008 09:22

Report post · February 26, 2008

Hi ,I am taking Armour instead of 100 mg Eltroxin. Best wishes, Joanxjenny stenning <jennystenning@...> wrote: Hi joan, Sadly a common story- the refusal to believe that T3 is really important and that conversion does exist does untold

damage. Are you taking the Armour in addition to your T4 or instead of? Subject: New Member Introduction He had dictated this right after seeing me and said he would not need to see me again and he agreed with GP. Also said that HOW EVER he had agreed to test T3! Well at the bottom of the letter was PTO and a new date as he had results from T3 blood test. TSH 0.42 T3 3.8 which he said as slightly low.He said rather than give T3 he should increase T4 to 125mcg as this would increase T3 level and possibly my symptoms!He said he would see me in his clinic in 4 months. I don't think so! Saw GP who had not even noticed the PTO on his letter from consultant and I had to point it out to him. I told him I did not like him and would be canceling my hospital appointment as I had no confidence in this person. My GP hates to discuss Armour and will have

nothing to do with it. How ever I managed to convince him that I knew it would help me and I would buy it my self and asked him to test me some time in April which he has reluctantly agreed to do. For the past 3 weeks I have been taking 1 grain a day in 2 separate doses and now think I shall add another half grain. Please could you advise? I am feeling much better even on this low dose! I am so thankful to have found this group and all the information here. Thank you so much. Please accept my apologies for my very wordy introduction. Just one month ago I could not be bothered to type any thing LOL! Best Wishes to all, Joan Messages are not a substitute for professional medical advice. Always consult with a suitably qualified practitioner before changing medication.

Report post · February 26, 2008

Hi Joan,

GP’s are usually reluctant to discuss Armour as it is not on the NHS

list, however this does not apply to private docs who have different insurance

( and often different opinions).

Some folk do perfectly well on T4/T3

combo if they don’t do OK on T4 alone, so this may be a way to go to keep

in GP’s good books

Now 125 T4 isn’t really that

high a dose so might provide enough for T3 conversion if you can do it. 3.8 is

a reasonable figure ( about the same as mine) but some folk can need

ridiculously large amounts of meds to get where they need to be. T3 is NHS

prescribable as liothyronine sodium.

‘how to’ with Armour is

detailed on the website so best check there- I’d think that more than 1

grain would be needed.

The other possibility is adrenal

insufficiency which often accompanies the stress of poorly managed hypo.

–again see website.

PS could you please snip the post

you are replying to to a minimum so it doesn’t clog up inboxes- thanks

Subject: RE:

New Member Introduction

Hi

,

I am taking Armour instead of 100 mg Eltroxin.

Best wishes,

Joanx

TSH 0.42 T3 3.8 which he said as

slightly low.He said rather than give T3 he should increase T4 to

125mcg as this would increase T3 level and possibly my symptoms!He

My GP hates to discuss Armour and will have nothing to do with it.

How ever I managed to convince him that I knew it would help me and I

would buy it my self and asked him to test me some time in April which

he has reluctantly agreed to do.

For the past 3 weeks I have been taking 1 grain a day in 2 separate

doses and now think I shall add another half grain.

Please could you advise? I am feeling much better even on this low dose!

Report post · July 14, 2008

Hi nne,

We're new to Masgutova also, are planning to attend the 10 day camp

in BC later this summer and I'll be sure to post about our

experiences, once we've had them!

There is another group which you might also find helpful,

NEUROnetwork/

where there are a number of adoptive parents supporting their

children with issues that sound very similar to what you've

described. The primary therapies they are discussing are

neurotherapy and neuro-reorganization -- the neuro-reorg concepts are

new to me, but it sounds like it is derived from the Doman stuff.

Alison

>

> Hi,

> My name is nne and I am here primarily as a parent of a

challenged child. I live in South Central Wisconsin. My son is 7

years old and was adopted from a Russian " baby hospital " at 14 months

of age. The neglect he suffered during his first year was severe,

and geneticist evaluation suggests that he was also exposed to

alcohol prenatally. While he is quite bright, he has

definite " holes " in his thinking, global developmental delays, and is

very emotionally delayed. He is extremely aggressive at this time

which interferes with his education/therapy and the ability for our

family to function. Primary diagnoses include RAD, PTSD, pFAS.

> I am also an occupational therapist and extremely interested in

learning more about Masgutova's techniques for professional as well

as personal reasons. However, I am currently out of the work force

because my son is too violent/anxious to be in school full time or to

be in any sort of respite or day care. We have tried all sorts of

therapies with him including physical, occupational, attachment and

speech therapies. He is on several scary medications at this time,

with disappointing results. A year ago, he seemed to be making nice

progress as we began to focus on some basic brain gym and movement

patterns with a vision therapist. However, his aggressiveness became

so severe at that time that we decided to discontinue. We have

been " stuck " in this place ever since.

> I am looking forward to learning more here.

> Thanks,

> nne

>

Report post · July 14, 2008

Hi nne,

Welcome and bless you for taking on such a challenge. Your son is lucky to have you. I am a mother of an 11 y.o. son with challenges also, although he outgrew his agressiveness fortunately. I am not as experienced as others on this list, but I think there might be some Masgutova exercises that will help your son. I thought of the "bonding" one, but there might be others that would be better to do first. My guess is that it would definitely be worthwhile to find a Masgutova intro class or someone in your area who is doing it and get some exercises to try.

When Alison posted about neurotherapy I don't know if she meant neurofeedback or something else, but neurofeedback did help my son a great deal. He became more focused and social with it. It may be helpful for agression. You can find more info here:

http://www.eeginfo.com/

Best wishes,

Report post · July 19, 2008

hi all i did look at the web site on nuerofeedback, it has emphasized more on add rather than cp. my daughter is phyiscally immobile does anyone know if it improves the mobility? thanks <susanwald@...> wrote: Hi nne, Welcome and bless you for taking on such a challenge. Your son is lucky to have you. I am a mother

of an 11 y.o. son with challenges also, although he outgrew his agressiveness fortunately. I am not as experienced as others on this list, but I think there might be some Masgutova exercises that will help your son. I thought of the "bonding" one, but there might be others that would be better to do first. My guess is that it would definitely be worthwhile to find a Masgutova intro class or someone in your area who is doing it and get some exercises to try. When Alison posted about neurotherapy I don't know if she meant neurofeedback or something else, but neurofeedback did help my son a great deal. He became more focused and social with it. It may be helpful for agression. You can find more info here: http://www.eeginfo.com/ Best wishes,

Report post · September 24, 2008

,

I had my original scoliosis fusion in 1975 at the age of 12 with a

Harrington rod from T4-L4. I developed flatback and severe degenerative

disc disease below the fusion. I was in extreme pain, couldn't stand for

more than a few minutes, or walk very far. I went to 2 adult spinal

surgeons for opinions. I opted to have surgery last May 2007. The

Harrington rod was left in place and I was fused from L1-sacrum with rods

down both sides of my spine and cages at L4/L5 and L5/S1. The surgeon

restored my natural lordosis, and it was an anterior/posterior procedure.

He also put screws into my pelvis for stability of the fusion.

I know my situation is different from yours but I don't regret having the

surgery for a second. I have been pain free since my surgery and my quality

of life has greatly improved.

Peggy

On Wed, Sep 17, 2008 at 10:46 PM, <ladams9200@...> wrote:

> Hi everyone,

> I am a new member to this group but not to the Scoliosis world. I feel

> like mine will keep haunting me forever.

>

> I originally had spinal fusion surgery in 1995 at 16. Then another

> surgery to fix a minor problem in 1996. Did fine these past years. Did

> fine during a pregnancy then a few months after that, I developed

> Sciatica. Wow...what terrible pain!!!

>

> After the sciatica, I have been having problems sleeping, moving, just

> plain functioning in everyday life. Then I realized, by way of

> numerous people telling me, that I was tilting again. I guess I didn't

> want to believe it but I couldn't ignore it anymore. So, after no

> local docs would agree to see me, I turned to my ped ortho surgeon who

> then referred me to an adult surgeon. Well, I came out of that appt.

> feeling totally defeated.

>

> I thought I would have to have a minor surgical procedure placing a

> spacer. Oh no. I have developed a 25 degree curve in my L4-S1 region

> and he wants to fuse that, then screwing it all into my pelvis. Cages,

> screws, specially made hardware to tie into my ancient stuff, etc.

> etc. etc. Anyway, after totally getting sick of the description of it

> and the inevibility of nerve damage and a " measurable rate of

> mortality " I decided that this surgery was not for me. He said that it

> may or may not improve my pain. The only thing it would really do stop

> the progression of the curve. I'm eventually going to be crippled. He

> didn't sugar coat a thing.

>

> Anyway, I guess I was just wondering what anyone else would do or if

> anyone has had this type of surgery?

>

> Any help would be great!

>

> Thanks,

>

Report post · September 29, 2008

Warmest Greetings, ! What a jam packed delightful intro!

And welcome to this forum too!

Thank you for sharing!

Adelaide, Co-Moderator

Dwarfism Group

**************Looking for simple solutions to your real-life financial

challenges? Check out WalletPop for the latest news and information, tips and

calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001)

Report post · October 8, 2008

Dear , If I was you, I'd make sure I had the best surgeon and go through

with it. You really don't have anything to lose. If it dosn't work, you'll be

'crippled,' just as you would be if you did nothing. But, it COULD work, and

that's my bet.

lj

From: <ladams9200@...>

Subject: New Member Introduction

Scoliosis Treatment

Date: Wednesday, September 17, 2008, 10:46 PM

Hi everyone,

I am a new member to this group but not to the Scoliosis world. I feel

like mine will keep haunting me forever.

I originally had spinal fusion surgery in 1995 at 16. Then another

surgery to fix a minor problem in 1996. Did fine these past years. Did

fine during a pregnancy then a few months after that, I developed

Sciatica. Wow...what terrible pain!!!

After the sciatica, I have been having problems sleeping, moving, just

plain functioning in everyday life. Then I realized, by way of

numerous people telling me, that I was tilting again. I guess I didn't

want to believe it but I couldn't ignore it anymore. So, after no

local docs would agree to see me, I turned to my ped ortho surgeon who

then referred me to an adult surgeon. Well, I came out of that appt.

feeling totally defeated.

I thought I would have to have a minor surgical procedure placing a

spacer. Oh no. I have developed a 25 degree curve in my L4-S1 region

and he wants to fuse that, then screwing it all into my pelvis. Cages,

screws, specially made hardware to tie into my ancient stuff, etc.

etc. etc. Anyway, after totally getting sick of the description of it

and the inevibility of nerve damage and a " measurable rate of

mortality " I decided that this surgery was not for me. He said that it

may or may not improve my pain. The only thing it would really do stop

the progression of the curve. I'm eventually going to be crippled. He

didn't sugar coat a thing.

Anyway, I guess I was just wondering what anyone else would do or if

anyone has had this type of surgery?

Any help would be great!

Thanks,

Report post · October 8, 2008

I agree. If you're going to be that bad off anyway, why would you not go ahead

with anything that could be better? Anyway, I did have that sort of surgery. I

was fused from T4-L5 and the rods broke. So I had a 2 part surgery, 8 months

ago, where first my surgeon made a 4 in incision right above my pelvic bone to

fuse me to S1, and also a 2 in incision in my side, waist level, to go in and

fuse from the front the levels that didn't fuse the 1st time, L2-L4. Then 5 days

later he made an 8 in cut in my back, along my other scar, removed the broken

rods from below and attached new ones to the big one remaining. Then he also did

some more fusing and put screws in my pelvis. The surgery was not so terrible. I

was in the hospital 10 days and in rehab 5. I lost a lot of weight which for me

was not good, but I sure am straight. I'm having problems with the screws in my

pelvis and so I'm still on pain meds. That's the worst part of the whole thing.

I guess 25% of

people do have pain from those screws. I can have them removed in an outpatient

procedure after a year. I've heard from another woman on this site that she also

had her hardware removed and she's been pain-free for 2.5 years now. That's very

hopeful. Just make sure you have a very good surgeon because revision surgery

can be complicated.