Hi New Here

[Guest guest]

Lolly, have they tested your T3?

Celia

Scotland

[Guest guest]

Hi Celia,

Yes, I have to do my own FT3 labs with NPTech I get the FT4 and TSH

tested at my own surgery, I had them taken at the same time and posted

the FT3 to the private labs,they should be back either tomorrow or

Friday and my others should be here around the same time.

>

> Lolly, have they tested your T3?

> Celia

> Scotland

>

[Guest guest]

Hi Dudley,

I think I will do it at the rate 1.5mg for a month see how that goes

and then try increasing it to 2.5mg's and then 3.0mgs over monthly

period.

I spoke with a pharmacist today about mixing it with distilled

water,she said there was no need to do that as we can use tap

water,she said she makes up babies medication straight from the tap.

so I am really not sure what I should be doing.I couldn't get

distilled water at the supermarket,p[icked up de-Idonised water for

car batteries and Irons,I was advised not to consume that as it could

contain chemicals,there was no writing at all on it to read any

instructions,good job I thought to checked first with the pharmacist

at the store, heaven forbid.LOL

What I have done is split the 50mg tab into half and have made up

25mg's and now have it refrigerated I am starting tonight.

I will let you know how it all goes.

I will be sure to keep an eye on my symptoms by checking pulse and BP

also getting labs earlier than normal.

Lolly

>

> Hi Lolly,

>

> I suggest increasing the dosage at a slower rate until you see how

LDN affects you. Also, you may need to adjust the dosage of your

medication to compensate for the influence of LDN on your system.

>

> For more information about LDN, visit

>

> http://tinyurl.com/2boot2

>

> Best regards,

>

> Dudley Delany

>

> dudley_delany

>

>

> [low dose naltrexone] Hi new here

>

> Hi all,

>

> I am new to this site, I have been reading up on LDN and ordered

some

> a

> couple of weeks ago from River Pharmacy in Canada.

> They arrived sooner than I expected, shipping arrival date was

> between 16th-23rd Feb they arrived on the 11th

> I live in the UK.

> I have Graves Disease with Thyroid Eye Disease.

> I had a Total Thyroidectomy last year, but since then have had a

> rollercoaster ride,at one point they thought I just wasn't

absorbing

> Levothyroxine my current dose is 200mcg's.

>

> I wanted to try LDN to see if it would help with the eye disease as

> that have flared up since my surgery.

> I've been having some help,by other graves disease suffers

regarding

> LDN.

> My question is...

> I was reading about River Pharmacy's,the Tablets I

> received (looks like mine came from India), generic name is Revia

> 50mgs X30 tabs, I opened one to see if it is, how you described

them

> on one of the posts here,tablet is light orange colour,

scored,round

> no writing on it at all, expiry date 2010.

> Came in 10 tab blister packets

> with Nordic and Naltrexone Hydrochloride,there were no inserts with

> it or leaflets explaining the medication, although I know to make

up

> my own with distilled water, I will be doing only 25mg's at a time

> have a pill cutter and keeping it refrigerated starting on 1.5mg's

> the first week, increasing to 2.5mgs's the second and going up to

> 3mg's, not sure if I should be going any higher than this,so any

> input wtll be appreciated.

> I haven't started them yet as I am waiting on lab results,Thyroid,

> Liver panel, and full blood count I had labs on Monday, plus I have

a

> stinking cold.

>

> Thank you

>

> Lolly

>

[Guest guest]

Hi Celia,

Yes, I have to do my own FT3 labs with NPTech I get the FT4 and TSH tested at my own surgery, I had them taken at the same time and posted the FT3 to the private labs,they should be back either tomorrow or Friday and my others should be here around the same time.

That's good Lolly, and have you done an adrenal test? Would be good to know the results of your T3....

Cheers

Celia

[Guest guest]

Hi Celia

I have never done an adrenal test, been trying to get one for sjogrens

my GP is not very accommodating but thats another issue.

The last time I had my FT3 done was back in November, it has hardly

moved from the lower part of the range FT3 3.8(3.0-6.2).

Last labs I had were done in January, just over a month ago FT4 11.8

(7.0-16.0) TSH 0.31(0.20-5.50) FT4 has dropped this time around from

13.8 I am still taking 200mcg Levothyroxine.

So I wantd to have earlier labs this time, make sure they are not

declining towards Hypo after my surgery TSH was 19.4 FT4 6.4 no FT3

So it's been a year long struggle to get my levels above water with

slow titration of thyroxine.

My eyes have suffered as a consquence of hypo as they were not too

bad before surgery I am still in the active stage of TED(Thyroid Eye

Disease).

May I ask if you have a thyroid disease?

I see you are from Scotland,well I am half Irish not sure if thats a

good thing though, but I am proud to be a descendant.

Lolly

>

> Hi Celia,

>

> Yes, I have to do my own FT3 labs with NPTech I get the FT4 and TSH

> tested at my own surgery, I had them taken at the same time and

posted

> the FT3 to the private labs,they should be back either tomorrow or

> Friday and my others should be here around the same time.

>

>

>

> That's good Lolly, and have you done an adrenal test? Would be

good to know the results of your T3....

> Cheers

> Celia

>

[Guest guest]

Where do you live Lolly? I know a good private endo over in England who can arrange adrenal tests, had them done myself as I am hypo because of thyroid surgery I had years ago, found I had adrenal exhaustion, and both the adrenal and thyroid need to work in tandem, the strange thing is, that when I got the big 'C' they found a small 1cmm growth on my adrenal, they think benign.... I know this is off topic here but think we need to look at the whole system, so my aplogies to others if I offend....... Albeit to say, the LDN has cured my eyes - wahoooooo!!

Best

Celia

[Guest guest]

Hi Celia,

I live in Buckinghamshire inbetween London and Birmingham.

I do think this relates to LDN because all I want to do is see an

improvement in my eyes,and symptoms without the aid of steriods or

surgery.

I had my results back to today FT3 3.9 (3.0-6.2) FT4 14.1 (7.0-16.0)

TSH 0.38 (0.20-5.50) still awaiting my other labs FBC and LFT's

Well I started LDN last night at 1.5mg's didn't like the taste much

but drank some water straight after I sleep fine once I had gone to

bed.

If you wish you can e-mail me with the doctors details.

Lolly

>

> Where do you live Lolly? I know a good private endo over in

England who can arrange adrenal tests, had them done myself as I am

hypo because of thyroid surgery I had years ago, found I had adrenal

exhaustion, and both the adrenal and thyroid need to work in tandem,

the strange thing is, that when I got the big 'C' they found a small

1cmm growth on my adrenal, they think benign.... I know this is

off topic here but think we need to look at the whole system, so my

aplogies to others if I offend....... Albeit to say, the LDN has

cured my eyes - wahoooooo!!

> Best

> Celia

>

[Guest guest]

Hi , reading your lines felt as I was reading my mind a month ago.I also noticed that my 2 months old sons face is a bit asymetrical and his right cheek was a bit fuller. I also freeked out when I saw that his left eye was a bit smaller - but nobody else could see that. My doctor said that it is a very, very mild plagio and that I should start with repositioning. I bought Sassy positioner - you can buy it on-line - and it helped a GREAT DEAL. I think the sleep positioners are a good start to avoid sleeping on the prefered side. My son got much better after 2 weeks sleeping in the positioner. I also changed all the routine regarding sides - feeding, playing, moved all the toys to the "good side". He turnes his head normaly to both sides now and both cheeks are the same. I cant even see the "smaler eye". The only thing I can still see is that one ear is a bit smaller. Good luck a 3 and 1/2 month

old Prague, Czech Republicginatieman <ginatieman@...> wrote: Hi all,I am so glad I have found this support group. I have a baby girl, 4 months old (Kaylie) & she was born 1 month early. We have an appointment with her pediatrician in 1 week but are pretty sure she will be diagnosed with toricollis & plagiocephaly. When she was born it was obvious that she had been laying on one side in the womb as her right ear was floppy & had been folded over. We figured as she grew she would "grow out of

it". Recently since she has gained alot of control over her head & is able to hold it up, we have been noticing her holding her head to the right much of the time. We have started stretching exercises recommended by me pediatrician's nurse & in just a week she is holding her head much much straighter! So glad about that. But.... here is my biggest concern. It is very hard to see straight on and actually I don't think we noticed, but when holding her in the mirror, her face is a bit asymetrical, down around her jaw line on the right side & her left cheek is just a bit fuller than the right. The back of her head shape seems to be fairly even, but again it may be mild enough that we aren't really seeing it. I need some advice on what to ask the pediatrician, I don't want to miss any question that I should be asking. I also don't want to be brushed off and told "oh she'll grow out of it, the more she

holds her head up" (which may be the case I am not sure?) Any advice on where to start would be so helpful to me. Again, I am so glad I found you all!Thanks! & Kaylie

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Thank you so much! I am hoping that Kaylie's is mild enough for the

Doc to say that repositioning will do the trick, I just at the same

time don't want her Doc to take it too lightly. I will talk with

him about the sleep positioner & see if he thinks that will help

too. Thanks again!

& Kaylie

> Hi all,

> I am so glad I have found this support group. I have a baby girl,

> 4 months old (Kaylie) & she was born 1 month early. We have an

> appointment with her pediatrician in 1 week but are pretty sure

she

> will be diagnosed with toricollis & plagiocephaly. When she was

> born it was obvious that she had been laying on one side in the

womb

> as her right ear was floppy & had been folded over. We figured as

> she grew she would " grow out of it " . Recently since she has gained

> alot of control over her head & is able to hold it up, we have

been

> noticing her holding her head to the right much of the time. We

> have started stretching exercises recommended by me pediatrician's

> nurse & in just a week she is holding her head much much

> straighter! So glad about that. But.... here is my biggest

> concern. It is very hard to see straight on and actually I don't

> think we noticed, but when holding her in the mirror, her face is

a

> bit asymetrical, down around her jaw line on the right side & her

> left cheek is just a bit fuller than the right. The back of her

> head shape seems to be fairly even, but again it may be mild

enough

> that we aren't really seeing it. I need some advice on what to ask

> the pediatrician, I don't want to miss any question that I should

be

> asking. I also don't want to be brushed off and told " oh she'll

> grow out of it, the more she holds her head up " (which may be the

> case I am not sure?) Any advice on where to start would be so

> helpful to me. Again, I am so glad I found you all!

>

> Thanks!

> & Kaylie

>

>

>

>

>

>

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

> Looking for last minute shopping deals? Find them fast with

Search.

>

[Guest guest]

- Welcome!

What you describe sounds alot like my daughter when she was born. She has left tort and right plagio. My dd looked to the right all the time too. I didn't notice the plagio at first - I was looking at her facial asym too much. After time though it became more pronounced. Do you see jaw asym? My dd's jaw is higher on the left and it slants down to the right.

Anyway - not to bore you with my dd's details... I just wanted you to know that you are not alone, your child is similar to other out there, etc.

OH, and the drs said she would grow out of it... but she hasn't yet. It may just be a character trait, she may need jaw surgery if it effects her later on... it something we will just have to wait and see. The helmet did not help that part of her face... it did help her forehead and some of her ear asym. My dd's tort is not fixable... she has spinal/neurological abnormalities that are causing her tort.

Jen and Luli - 27 months

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babiesonline.com/babies/j/jens5th/

Hi new here

Hi all,

I am so glad I have found this support group. I have a baby girl,

4 months old (Kaylie) & she was born 1 month early. We have an

appointment with her pediatrician in 1 week but are pretty sure she

will be diagnosed with toricollis & plagiocephaly. When she was

born it was obvious that she had been laying on one side in the womb

as her right ear was floppy & had been folded over. We figured as

she grew she would "grow out of it". Recently since she has gained

alot of control over her head & is able to hold it up, we have been

noticing her holding her head to the right much of the time. We

have started stretching exercises recommended by me pediatrician's

nurse & in just a week she is holding her head much much

straighter! So glad about that. But.... here is my biggest

concern. It is very hard to see straight on and actually I don't

think we noticed, but when holding her in the mirror, her face is a

bit asymetrical, down around her jaw line on the right side & her

left cheek is just a bit fuller than the right. The back of her

head shape seems to be fairly even, but again it may be mild enough

that we aren't really seeing it. I need some advice on what to ask

the pediatrician, I don't want to miss any question that I should be

asking. I also don't want to be brushed off and told "oh she'll

grow out of it, the more she holds her head up" (which may be the

case I am not sure?) Any advice on where to start would be so

helpful to me. Again, I am so glad I found you all!

Thanks!

& Kaylie

Supercharge your AIM. Get the AIM toolbar for your browser.

[Guest guest]

Hi Jen,

Thanks for the welcome! I am sorry that your dd is having such a

hard time. I do notice jaw asymetry, that is where we 1st saw it &

then we noticed 1 cheek being a tiny bit fuller. You really have to

look & know what you are looking for to see it though. I am

wondering if her jaw will come out of it with repositioning

treatment? It does have a slant that the other side does not have.

It could very well be a birth defect & unrelated to plagio? At this

point I am not sure, but I will try everything I can to get it

corrected! I will post & let you all know what we find out at her

appointment on Tuesday.

& Kaylie ( 4 months)

>

> - Welcome!

> What you describe sounds alot like my daughter when she was born.?

She has left tort and right plagio.? My dd looked to the right all

the time too.? I didn't notice the plagio at first - I was looking

at her facial asym too much.? After time though it became more

pronounced. Do you see jaw asym? My dd's jaw is higher on the left

and it slants down to the right.

> Anyway - not to bore you with my dd's details... I just wanted you

to know that you are not alone, your child is similar to other out

there, etc.

> OH, and the drs said she would grow out of it... but she hasn't

yet.? It may just be a character trait, she may need jaw surgery if

it effects her later on... it something we will just have to wait

and see. The helmet did not help that part of her face... it did

help her forehead and some of her ear asym.??My dd's?tort is not

fixable... she has spinal/neurological abnormalities that are

causing her tort.?

>

>

>

> ?Jen and Luli - 27 months

> Left tort - Right Plagio - Hanger Band Grad - CA

> http://www.babiesonline.com/babies/j/jens5th/

>

>

> Hi new here

>

>

>

>

>

>

> Hi all,

> I am so glad I have found this support group. I have a baby girl,

> 4 months old (Kaylie) & she was born 1 month early. We have an

> appointment with her pediatrician in 1 week but are pretty sure

she

> will be diagnosed with toricollis & plagiocephaly. When she was

> born it was obvious that she had been laying on one side in the

womb

> as her right ear was floppy & had been folded over. We figured as

> she grew she would " grow out of it " . Recently since she has gained

> alot of control over her head & is able to hold it up, we have

been

> noticing her holding her head to the right much of the time. We

> have started stretching exercises recommended by me pediatrician's

> nurse & in just a week she is holding her head much much

> straighter! So glad about that. But.... here is my biggest

> concern. It is very hard to see straight on and actually I don't

> think we noticed, but when holding her in the mirror, her face is

a

> bit asymetrical, down around her jaw line on the right side & her

> left cheek is just a bit fuller than the right. The back of her

> head shape seems to be fairly even, but again it may be mild

enough

> that we aren't really seeing it. I need some advice on what to ask

> the pediatrician, I don't want to miss any question that I should

be

> asking. I also don't want to be brushed off and told " oh she'll

> grow out of it, the more she holds her head up " (which may be the

> case I am not sure?) Any advice on where to start would be so

> helpful to me. Again, I am so glad I found you all!

>

> Thanks!

> & Kaylie

>

[Guest guest]

Hi Helen,Just wanted to say welcome. I'm Mina, mom of two PDD-NOS boys, ages 4 and 3, and two other NT children. I understand the strong impulses and running...my 4 year old is the same way, and we've dealt with elopement basically from the time he could walk! We just had both my boys dx'd over the summer, and are still working on getting proper interventions within our school system. The 4 year old in in a standard pre-K class right now because the school refused to do testing at the end of last year, so NOW they are trying to get it all done so he can get what he needs. (They didn't believe me when it was just MY say-so without a dx. and without having a teacher who'd worked with him verify his issues. Now with the pre-K teacher saying "Yes, he needs more than this, and these are the issues" they are running around trying to get all the testing done in a timely manner.) Dealing with the school system to get appropriate educational intervention can be a big pain. We actually had to go ahead and get a dx. before they'd really listen to us, because most often they'd rather wait until the child is in K so they can experience the problems, rather than being proactive to figure out what the problems might be and how to avoid having them! Ugh. We were fortunate that (4 year old) was getting speech once a week last year, and the speech therapist really pushed for him to get into our county's pre-K program, even though we didn't meet the income requirements. So, he's in the system a year "early" to figure out what he needs in order to be successful in school.One thing we did, that I kind of wanted to throw out there as a suggestion, is to see if there is anywhere you can get an evaluation sooner. We're in land, and we had made appointments at various ASD research hospitals, which had HUGE waiting lists. But...because we were having such a struggle with the schools providing appropriate intervention for , it was suggested to us to go see a pediatric neurologist at Sinai, because being an independent practice he would be able to see my boys sooner. And, in fact, we were able to get in to the office the week following my initial call. Will we still try to get the kids in to see someone at, say Kennedy Krieger? Sure, we've kept ourselves on the waiting list, because I know they will be more thorough in their evaluation. But, I at least have a diagnosis with which to say "Here, this is what we're dealing with...so deal with it!". )So, that's just an idea that I'm throwing out there that you may want to consider. In any case, welcome to the list!Mina -------------------------------Mina SmolinskiMommy to: 9/25/02 - NT 5/13/04 - PDD-NOSOwen 7/1/05 - PDD-NOS/HyperlexiaLila 3/3/07 - NT On Oct 7, 2008, at 7:06 PM, heavenlybulldog wrote:Hi, I just joined your group today. I am a mom to 2 children, a son who is 4 1/2 yrs and a daughter who is 2 1/2 yrs. We are in the process of getting my son diagnosed with possible Aspergers or other ASD. I just got an appointment made today but won't be until possibly next summer until they are able to evaluate him. This past summer he was diagnosed with ADHD but other people who work with him and myself think that there may be a little more to the story. There is autism in my family as my sister has classic autism (she is 27). I am currently trying to work with my school district to get some help for my son at school (he is in preschool). He is known to have meltdowns where he will throw himself to the ground while screaming, hitting, kicking, spiting, etc. He has very strong impulses including the most common being running away from people especially during transitions.I am looking forward to learning more from this group.Thanks,Helen

[Guest guest]

Welcome to our group, Helen!

RoxannaYou're UniqueJust like everyone else...

( ) Hi New Here

Hi, I just joined your group today. I am a mom to 2 children, a son who is 4 1/2 yrs and a daughter who is 2 1/2 yrs. We are in the process of getting my son diagnosed with possible Aspergers or other ASD. I just got an appointment made today but won't be until possibly next summer until they are able to evaluate him. This past summer he was diagnosed with ADHD but other people who work with him and myself think that there may be a little more to the story. There is autism in my family as my sister has classic autism (she is 27). I am currently trying to work with my school district to get some help for my son at school (he is in preschool). He is known to have meltdowns where he will throw himself to the ground while screaming, hitting, kicking, spiting, etc. He has very strong impulses including the most common being running away from people especially during transitions.I am looking forward to learning more from this group.Thanks,Helen

No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.173 / Virus Database: 270.7.6/1712 - Release Date: 10/7/2008 9:41 AM

[Guest guest]

Hi and welcome to the group!

Here is an archived message about speech therapy for apraxia...it

will help you decide if your son is getting appropriate speech

therapy through your local school district.

/message/18599

Since you are new to apraxia, I am going to refer you to the link

section where there are many folders by subject that you can read

through instead of bombarding you with so much information at once.

/links

you might be interested in reading through the folder called therapy

ideas - for at home. There are a lot of ideas from people from this

group and other links that might be helpful to you.

Apraxia takes a lot of patience, repetition, and hard work for you

and your child. Keep working with him everyday on sounding out

sounds/words and talking about everything and anything that is going

on during the day or what you see while in the car. My son did his

best speech practice in the car...

Feel free to ask more questions...there are many members here that

can help answer your questions.

HTH,

Tina

>

> Hi my name is , I am a single parent going through a

difficult

> time in my sons life. He is 4 years old. He was diagnosed with

apraxia

> in October, finally after 2 years of family telling me he is

autistic

> or something else was wrong with him and all his drs saying no he

is

> not and then we took him for his second hearing test we learned

about

> apraxia and then we got him into speech therapy where he got his

> hearing test done and they confirmed it was apraxia. Hes been going

to

> speech and at day care he has started to talk a whole lot more. He

has

> started to get some of the syllables in some words out, we have

been

> practicing words and sounding them out to help him out and I am

going

> to go today to get him a reading book that helps teach to read to

see

> if that will help him say words more clearly. Does anyone know what

> works good to help children with apraxia. I am still new to all

this

> and dont know what all works and what all doesnt work. Thanks and

hope

> to get to know all of you.

>

> in PA.

>

[Guest guest]

Hi We just watched Dr G's presentation done in March 09 and found it amazing.

We live on Long Island and our son is + for HHV6. Does Dr G would Dr G work

with us as far as doing phone consultations? Do you think my son should start

the protocol - although I am not sure what it is - is it Valtrex and Diflucan?

My son is 4 and weighs 33 lbs - never vaccinated and dx HF PDD-NOS.

Any help is greatly appreciated!!!!!!!

Ginette

[Guest guest]

>

> Hi We just watched Dr G's presentation done in March 09 and found it amazing.

We live on Long Island and our son is + for HHV6. Does Dr G would Dr G work

with us as far as doing phone consultations? Do you think my son should start

the protocol - although I am not sure what it is - is it Valtrex and Diflucan?

My son is 4 and weighs 33 lbs - never vaccinated and dx HF PDD-NOS.

> Any help is greatly appreciated!!!!!!!

> Ginette

>

I think the rule is that you have to fly to CA for an office visit at least once

a year and then follow up with monthly phone calls.

[Guest guest]

please be careful a lot of sitting is not good for you either. It

promotes scar tissue to form the more active you can be ( up to a point) The

better off you are. I have had 5 back surgeries and each time except the

fourth and fifth I couldn't do much walking because I was left in so much

pain. Just do what you feel is comfortable to you but no matter what make

time for a little walk each day if you can.

Janice

Hi New here

>

>

>

>

>

>

> Hello All,

>

> Just had surgery on Oct 5. C6-7 fused and spur on C5. Still wearing Miami

> J brace(awfully uncomfortable)24/7 and alternate Philadelphia.

>

> I guess some of you have had this type of surgery and I wanted to get

> feedback about success/failure, pain after surgery, how to beat boredom!

> LOL, and how not to gain weight for 6weeks of inactivity. Walking up the

> steps and out the parking lot doesn't cut it.

>

> Also, I just started sleeping on my back. More comfy b/c I'd wake up with

> jaw pain with the Miami J diggging into it.

>

> My follow up went well, got to see the xrays. My doc did a great job

> (Ratliff at Jefferson, Philadelphia). It looks perfectly normal. Going

> back for more xrays Nov 15. Doc's P.A. said it would get worse before it

> gets better. Left seems fine but gettin pain on my right in my arm(C5 was

> the bone spur)

>

> Did anyone of you get word when you can go back to work. I work part-time

> at a cafe and there's lotsa reaching, bending, etc. I'm also a petsitter

> and losing lots of money. I just want to be back to normal again. I've had

> brain tumors/cancer and those surgeries were nothing compared to this!

> Less nerves in the brain, I'm sure.

>

> Any help and encouragement would be appreciated

>

> Dana:-)

>

>

>

>

>

>

[Guest guest]

When I was laid-up after fracturing my pelvis, I did a LOT of loud singing... I

wanted to get aerobic exercise and it was the only thing I could think of that I

could actually do for the first few months. I would sing as loud as possible and

it really got the blood pumping. I wonder if that would be OK after neck

surgery? I found that singing a lot also lifted my spirits as well. Sometimes I

would play music with YouTube and just sing along. My neighbors probably got

sick of me singing but I do think it helped me.

- Peg

>

> Hello All,

>

> Just had surgery on Oct 5. C6-7 fused and spur on C5. Still wearing Miami J

brace(awfully uncomfortable)24/7 and alternate Philadelphia.

>

> I guess some of you have had this type of surgery and I wanted to get feedback

about success/failure, pain after surgery, how to beat boredom! LOL, and how not

to gain weight for 6weeks of inactivity. Walking up the steps and out the

parking lot doesn't cut it.

>

> Also, I just started sleeping on my back. More comfy b/c I'd wake up with jaw

pain with the Miami J diggging into it.

>

> My follow up went well, got to see the xrays. My doc did a great job (Ratliff

at Jefferson, Philadelphia). It looks perfectly normal. Going back for more

xrays Nov 15. Doc's P.A. said it would get worse before it gets better. Left

seems fine but gettin pain on my right in my arm(C5 was the bone spur)

>

> Did anyone of you get word when you can go back to work. I work part-time at a

cafe and there's lotsa reaching, bending, etc. I'm also a petsitter and losing

lots of money. I just want to be back to normal again. I've had brain

tumors/cancer and those surgeries were nothing compared to this! Less nerves in

the brain, I'm sure.

>

> Any help and encouragement would be appreciated

>

> Dana:-)

>

[Guest guest]

My throat was barely even sore. It wasn't even as bad as strep throat or

tonsilitis. I did have a little trouble swallowing for a few days, but again,

nothing worse than a typical sore throat. The incision pain wasn't too bad

either. My voice was no more hoarse than it would have been with head

congestion. The first day I remember I was hoarse and talked quietly but looking

back I think most of that was from fear of messing something up.

Just know that the disks above and below to weaken after this surgery and if you

do not absolutely have to have a surgery, don't!

Good Luck.

> > I wonder if that would be OK after neck surgery?

>

[Guest guest]

I TOTALLY AND COMPLETELY agree with Janice. Walk, walk and more walking. I think

that goes for anyone with any type of back problems. The longer you are still

the worse it gets. I know it is painful to keep moving and active sometimes, but

if you can push through the first part of the pain it will help you in the long

run and actually help reduce the pain in most cases. Also, watch your posture.

Be careful to actually pay attention to your posture. The last time I checked

back when I had my neck surgery there were various videos on YouTube that show

you how to practice your posture when you are sitting. I haven't been doing this

as well as I should and my last surgery is showing I am developing kyphosis

(fancy term for hump back). I am only 45 so I need to go search for those

video's again myself and hire someone to kick my butt when I slouch over! (Like

I have money to do that!! ROFL)

>

> please be careful a lot of sitting is not good for you either. It

> promotes scar tissue to form the more active you can be ( up to a point) The

> better off you are. I have had 5 back surgeries and each time except the

> fourth and fifth I couldn't do much walking because I was left in so much

> pain. Just do what you feel is comfortable to you but no matter what make

> time for a little walk each day if you can.

> Janice

> Hi New here

> >

> >

> >

> >

> >

> >

> > Hello All,

> >

> > Just had surgery on Oct 5. C6-7 fused and spur on C5. Still wearing Miami

> > J brace(awfully uncomfortable)24/7 and alternate Philadelphia.

> >

> > I guess some of you have had this type of surgery and I wanted to get

> > feedback about success/failure, pain after surgery, how to beat boredom!

> > LOL, and how not to gain weight for 6weeks of inactivity. Walking up the

> > steps and out the parking lot doesn't cut it.

> >

> > Also, I just started sleeping on my back. More comfy b/c I'd wake up with

> > jaw pain with the Miami J diggging into it.

> >

> > My follow up went well, got to see the xrays. My doc did a great job

> > (Ratliff at Jefferson, Philadelphia). It looks perfectly normal. Going

> > back for more xrays Nov 15. Doc's P.A. said it would get worse before it

> > gets better. Left seems fine but gettin pain on my right in my arm(C5 was

> > the bone spur)

> >

> > Did anyone of you get word when you can go back to work. I work part-time

> > at a cafe and there's lotsa reaching, bending, etc. I'm also a petsitter

> > and losing lots of money. I just want to be back to normal again. I've had

> > brain tumors/cancer and those surgeries were nothing compared to this!

> > Less nerves in the brain, I'm sure.

> >

> > Any help and encouragement would be appreciated

> >

> > Dana:-)

> >

> >

> >

> >

> >

> >

[Guest guest]

Dana - forgot to tell you I had immediate recovery from the loss of strength in

my let hand and arm immediately after the surgery - also contrary to many these

days I had POSTERIOR fusion - which does not have any of the throat

complications that anterior fusion does. I have noted talking with many who

have had the anterior surgery that many docs do not use the neck brace as long -

my surgeons opinion and he has extraordinary success - is that you need to wear

a neck brace while the bone fuses - it is after all like a fractured bone, now

the hardware holds it in place, but the discomfort for a short time will assure

that the bone is in place while it fuses...make sense to me.

I pray for a quick and full recovery for you!

mark

________________________________

From: AuntK <savvyblest@...>

spinal problems

Sent: Thu, October 21, 2010 3:56:35 PM

Subject: Hi New here

Hello All,

Just had surgery on Oct 5. C6-7 fused and spur on C5. Still wearing Miami J

brace(awfully uncomfortable)24/7 and alternate Philadelphia.

I guess some of you have had this type of surgery and I wanted to get feedback

about success/failure, pain after surgery, how to beat boredom! LOL, and how not

to gain weight for 6weeks of inactivity. Walking up the steps and out the

parking lot doesn't cut it.

Also, I just started sleeping on my back. More comfy b/c I'd wake up with jaw

pain with the Miami J diggging into it.

My follow up went well, got to see the xrays. My doc did a great job (Ratliff at

Jefferson, Philadelphia). It looks perfectly normal. Going back for more xrays

Nov 15. Doc's P.A. said it would get worse before it gets better. Left seems

fine but gettin pain on my right in my arm(C5 was the bone spur)

Did anyone of you get word when you can go back to work. I work part-time at a

cafe and there's lotsa reaching, bending, etc. I'm also a petsitter and losing

lots of money. I just want to be back to normal again. I've had brain

tumors/cancer and those surgeries were nothing compared to this! Less nerves in

the brain, I'm sure.

Any help and encouragement would be appreciated

Dana:-)

[Guest guest]

Thank you Janice...no I mean more in that first couple weeks. I've got a spine

fusion coming up end of Dec. How soon do you think I'll be able to walk? I

hate to sit still to be honest and as soon as I am able go go without narcotics

it will be hard to keep me in bed. The TV is the only thing that works. I keep

hoping that I'll be able to work up to walks around a mile long lake...dont know

if that is unrealistic.

" Without rabbits a rabbits foot would be nothing but a disembodied

hand full of unidentified toes. " -Pogo

spinal problems

From: faraway1@...

Date: Thu, 21 Oct 2010 20:15:18 -0700

Subject: Re: Hi New here

please be careful a lot of sitting is not good for you either. It

promotes scar tissue to form the more active you can be ( up to a point) The

better off you are. I have had 5 back surgeries and each time except the

fourth and fifth I couldn't do much walking because I was left in so much

pain. Just do what you feel is comfortable to you but no matter what make

time for a little walk each day if you can.

Janice

Hi New here

>

>

>

>

>

>

> Hello All,

>

> Just had surgery on Oct 5. C6-7 fused and spur on C5. Still wearing Miami

> J brace(awfully uncomfortable)24/7 and alternate Philadelphia.

>

> I guess some of you have had this type of surgery and I wanted to get

> feedback about success/failure, pain after surgery, how to beat boredom!

> LOL, and how not to gain weight for 6weeks of inactivity. Walking up the

> steps and out the parking lot doesn't cut it.

>

> Also, I just started sleeping on my back. More comfy b/c I'd wake up with

> jaw pain with the Miami J diggging into it.

>

> My follow up went well, got to see the xrays. My doc did a great job

> (Ratliff at Jefferson, Philadelphia). It looks perfectly normal. Going

> back for more xrays Nov 15. Doc's P.A. said it would get worse before it

> gets better. Left seems fine but gettin pain on my right in my arm(C5 was

> the bone spur)

>

> Did anyone of you get word when you can go back to work. I work part-time

> at a cafe and there's lotsa reaching, bending, etc. I'm also a petsitter

> and losing lots of money. I just want to be back to normal again. I've had

> brain tumors/cancer and those surgeries were nothing compared to this!

> Less nerves in the brain, I'm sure.

>

> Any help and encouragement would be appreciated

>

> Dana:-)

>

>

>

>

>

>

[Guest guest]

I've been in the position you describe many times and came to the same

conclusion you have. My discs started disintegrating when I was 26 and I now

have L2-S1 fused and C1-C7 fused. I recently went to an orthropod at Duke who

told me " You know it isn't normal to have this many discs fused " and I thought,

if you were in my shoes you would have done it too. The alternative is

disability and agony. My discs have been fused at s Hopkins so it isn't

like I've gone to shysters. I would do every one of them again.

I wish you the very best of luck!!!!! Kate

From: A.

Sent: Friday, October 22, 2010 10:31 AM

spinal problems

Subject: Re: Re: Hi New here

At this point the pain is so bad there isn't any other option. If they

told me strapping my butt to a rocket and shooting me over the moon

would help, I'd say, sign me up! Its been 7 months since my MVA and I

have NO quality of life like this. I can't work, I can't do any

housework for more than 10-15 minutes without being in terrible agony

the rest of the day, I can't even hold my macaws for more than a few

minutes due to the pain. I tried conservative treatments and nothing

even touched the pain. So I am willing to take the risk that the discs

above and below will go out because at worst it would be several years,

at best 10+ years so if I get 3-4 up to 10 years of relief then I will

be pleased.

And in any case, my discs look pretty good except the injured one so my

NS said the risk is slighter than if I had severe DDD or even moderate

DDD. He actually brought up that possibility without being prompted so

I feel pretty good about having the surgery.

and the gang -- jacdobe@...

Birds: Sadie (GW) Cookie (MMxBuffons) Jaderbug and Nissa (LJs) Sylvie

(RB2) ie (CAG)

Cats: Sully(DSH) Shadow(DMH) Sanouk & la(Siamese) Dogs: Skye

(Dobe/Husky) Reece (Dobe)

Bridge kids: Flirt, Tia, Munchkin, Jasmine, Chuckles, Angel, Indi,

Kayla, Sabien and our heart, Bubba.

Pics of the gang: http://community.webshots.com/user/jacdobe

Allparrots: http://pets./group/allparrots

The Coalition of PA Aviculturists: TCOPA

On 10/22/2010 10:10 AM, Me wrote:

> Just know that the disks above and below to weaken after this surgery and if

you do not absolutely have to have a surgery, don't!

--------------------------------------------------------------------------------

No virus found in this incoming message.

Checked by AVG - www.avg.com

Version: 9.0.862 / Virus Database: 271.1.1/3212 - Release Date: 10/22/10

02:34:00

[Guest guest]

Thanks everyone for the information and the encouragement.

" Without rabbits a rabbits foot would be nothing but a disembodied

hand full of unidentified toes. " -Pogo

spinal problems

From: faraway1@...

Date: Fri, 22 Oct 2010 10:49:07 -0700

Subject: Re: Hi New here

they will get you out of bed within 24 hours you don't have to do

much more than stand up but it cuts down the risks of blood clots forming.

As you lay in the bed move those legs around as much as possible. Once your

home walk as much as you feel comfortable with. The more you walk the faster

you will heal with a minimum of scar tissue forming. I have a disease caused

by scar tissue it is called Arachnoiditis you can look it up in fact you

should look it up because anyone who has ever had spine surgery or epidurals

are subject to this disease. I got it from to many surgeries but it was

necessary for my health and sanity. I would hurt my back by doing something

dumb and have to have surgery. My fusion was a miracle to me it helped me so

much although the pain after the third operation was terrible this is how we

found the Arachnoiditis. Anyway walk as much as you can or lay flat don't do

not sit a lot it is bad for the fusion.

10 years ago I was walking 5 miles a day 7 days a week. I started slow and

worked up to it. I lost 100 pounds that I desperately needed to lose to many

years of inactivity poured on the weight. But I took it off and I have kept

it off and at 60 I dont' think I have to worry about it coming back. You

will be able to walk that mile it just takes time and patience. When you

feel like it walk a block or two and every few days or as you feel

comfortable walk a little further. You will be able to do that mile in no

time. Please stay in touch and keep me apprised of how things are going.

Janice

Hi New here

>>

>>

>>

>>

>>

>>

>> Hello All,

>>

>> Just had surgery on Oct 5. C6-7 fused and spur on C5. Still wearing Miami

>> J brace(awfully uncomfortable)24/7 and alternate Philadelphia.

>>

>> I guess some of you have had this type of surgery and I wanted to get

>> feedback about success/failure, pain after surgery, how to beat boredom!

>> LOL, and how not to gain weight for 6weeks of inactivity. Walking up the

>> steps and out the parking lot doesn't cut it.

>>

>> Also, I just started sleeping on my back. More comfy b/c I'd wake up with

>> jaw pain with the Miami J diggging into it.

>>

>> My follow up went well, got to see the xrays. My doc did a great job

>> (Ratliff at Jefferson, Philadelphia). It looks perfectly normal. Going

>> back for more xrays Nov 15. Doc's P.A. said it would get worse before it

>> gets better. Left seems fine but gettin pain on my right in my arm(C5 was

>> the bone spur)

>>

>> Did anyone of you get word when you can go back to work. I work part-time

>> at a cafe and there's lotsa reaching, bending, etc. I'm also a petsitter

>> and losing lots of money. I just want to be back to normal again. I've

>> had

>> brain tumors/cancer and those surgeries were nothing compared to this!

>> Less nerves in the brain, I'm sure.

>>

>> Any help and encouragement would be appreciated

>>

>> Dana:-)

>>

>>

>>

>>

>>

>>

[Guest guest]

I hope everything works out well for you and you are able to get back to a

semi-normal life. I had 3 surgeries in 3 years and wound up with arachnoiditis

and my life will never be the same. I am always happy to read of the success

stories where people do get to go back to normal. I did keep going back to

normal until the last surgery and it was such a relief after I had healed from

the surgeries and the pain would be minimal for awhile. Awesome feeling.....

Good luck!

> > That is soooooooooooooooooooooooooo funny because I think most of us or

at least I know I have been in the position of feeling the " sign me up " and

don't even let them finish saying what they want to do, just anything to make

the pain stop, including blasting my a$$ into outerspace! haha

> >

>