Symptoms

March 20, 2004

I agree w/ Elissa to the extent that my films showed flatback and docs mentioned

it in notes (but NOT to me) long before I was actually diagnosed. The resulting

back pain lingered for years, but in the last year it got significantly worse

and over the course of a few months I started really leaning forward. So for

me, at least, the onset of the " typical " leaning symptom was very rapid. I

throw this in because you CAN wait for any revision surgery but in my case my

body made it very clear that i needed to go ahead.

BTW I am now 8 weeks post op and feeling better - I THINK I can see light at end

of tunnel and have not taken Percocet for 2 days altho have taken muscle relaxer

for muscle fatigue.

>

> From: " ekm1220 " <elissajunk@...>

> Date: 2004/03/19 Fri PM 06:25:52 EST

>

> Subject: Re: Symptoms

>

> I have only one minor quibble with the description of flatback

> below. In early stages of flatback, I don't think one necessarily

> has visible symptoms. Before my revision surgery, I looked normal to

> everyone but a trained orthopedist, and my knees weren't bent to

> compensate -- my symptoms were only that I had horrible back pain

> from the fact that I was bending backwards on my unfused disks to

> accommodate for the missing lordosis, which is what caused my

> terrible pain (facets grinding together from bending backwards on

> each other, as well as disk deterioration). I certainly had

> flatback -- any number of orthos diagnosed my problems as resulting

> from the long fusion without lordosis correction in the lumbar

> spine -- but I still had my head balanced for the most part, I only

> leaned over when I was terribly exhausted, and my knees have always

> been fine.

>

> As noted in 's introduction to this site, the biggest

> obvious thing for me was a total inability to lay on my back (which

> flexed my spine even more)or on my stomach (same problem).

>

> Also, the biggest factor for me in having the revision surgery

> before I started leaning over was simply so that I could avoid

> leaning over, and eventually wearing out my hips, knees, and

> remaining disks. I certainly understand why people put this surgery

> off as long as they can, but I was too depressed to live with

> increasing pain and THEN have a really difficult operation; for me,

> it was a better idea to just get the operation over with since I was

> clearly going to have it eventually and if it was going to save me

> some suffering to do it sooner, sooner was fine with me.

>

> Hope everyone has a great weekend.

>

> Elissa

>

> > , have you read Suzy's web page about flatback, and her

> links, especially the article by Mina?

> >

> > I think the most important sign/symptom of flatback is an

> inability to stand erect with the knees completely straightened.

> The head is not balanced over the hips as it should be, but sticks

> out in front, throwing the whole body and all body mechanics off

> balance.

> >

> > The most important risk factor for flatback is a Harrington rod

> fusion which extends into the lumbar region.

> >

> > We scoliosis surgery vets are all screwy in different ways,

> though, so we all have different sets of symptoms.

> >

> > Only a spine specialist MD (preferably a surgeon familiar with

> adult scoliosis issues) can give you an official diagnosis, but if

> you have it, it can be pretty easy to spot in the mirror while

> standing with knees straightened. (We tend to stand with knees and

> hips bent all the time to compensate.)

> >

> > Which reminds me of one more useful sign. Hip flexion

> contractures. If you can't swing your straightened leg behind you

> much beyond 180 degrees (a roughly straight line between head and

> foot), they call this " hip flexion contractures " , and this is

> typically seen in patients with flatback. When I was diagnosed with

> this I said, " You mean I'm supposed to be able to do that?! " , and

> the doctor showed me how he could. My mouth was hanging open.

> >

> > I hope you don't have it, but given your surgical history, there's

> a good chance you have at least a mild case.

> >

> > Sharon

> > Symptoms

> >

> > Evening All

> > I have read this site a lot and contributed virtually nothing

> for

> > which my apologies.

> >

> > I have used it as a source of symptom gathering information.

> >

> > Being unsure if i have early signs of HARMs flay back what ever

> i

> > have tried to review others issues to decide. And you know, I am

> > still not sure.

> >

> > Something is going on, but what, is unclear

> >

> > Could anyone spend a couple of minutes just advising on what the

> > general symptoms I should be looking for are?

> >

> > General history is idiopathic scoliosis from 13 then Harringtons

> from

> > 16 and fusion down to L3. Gen Long Fusion to middle of shoulder

> > blades.

> >

> > Been static and good for many years, then 2 years ago thought

> perhaps

> > shape changing. Rib hump increasing perhaps rotation, and

> curvature

> > perhaps below fusion.

> >

> > Some slight unsteadyness on feet and easily tired with walking

> and

> > long periods of standing.

> >

> > No excessive pain, but some shall we say pressure on and in

> chest

> > especially on concave side.

> >

> > Any thoughts

> >

> > Thanks

> >

> > (York UK)

> >

> > Support for scoliosis-surgery veterans with Harrington Rod

> Malalignment Syndrome. Not medical advice. Group does not control

> ads or endorse any advertised products.

> >

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

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

> >

March 20, 2004

Evening All

Or Afternoon in the States

Thanks for your messages and information. Very helpful indeed.

I have seen an ortho surgeon, and the advice so far is lets see what

happens and your getting older so your body shape will change.

No recognition of the rib hump increasing and x rays that are taken

in the standing position alone.

Sure the man is a very competent surgeon but not a spine specialist.

Anyway, from the symptoms mentioned, i may have early signs but

nothing that matches the bent knees to maintain posture and no

inability to lie flat, and so far no bad pain on the levels you

mention. It may come but not yet.

So if its starting, then its early doors.

Re the balance, I am told I have good trunkel balance (sounds like

some elephant) and my head is directly above the lumber spine, so

again good balance. If anything I slightly lean back (normally

worsens after about 3 beers so I am told)

I did try the leg at 180 degrees. Did you really mean 180 degrees?

I get the impression I can do some of that but perhaps not all.

My symptoms are more perhaps related to increasing curve maybe as a

result of the unfused bits wearing which perhaps may exagerate my rib

hump.

This site has been really helpful. I have learned phrases for things

I knew but did not know the name I.e. the body plaster cast (Risser)

I had one for 12 months, and had no idea it had a name.

What ever happend to stryker frames too, tell me they are still not

on the go.

thanks again for your information.

I promise to contribute more in the future, although your all light

years ahead of me in terminology and knowledge

in York (UK)

(very wet, very windy, and for once the river is not flooding)

> > Evening All

> > I have read this site a lot and contributed virtually nothing for

> > which my apologies.

> >

> > I have used it as a source of symptom gathering information.

> >

> > Being unsure if i have early signs of HARMs flay back what ever i

> > have tried to review others issues to decide. And you know, I am

> > still not sure.

> >

> > Something is going on, but what, is unclear

> >

> > Could anyone spend a couple of minutes just advising on what the

> > general symptoms I should be looking for are?

> >

> > General history is idiopathic scoliosis from 13 then Harringtons

> from

> > 16 and fusion down to L3. Gen Long Fusion to middle of shoulder

> > blades.

> >

> > Been static and good for many years, then 2 years ago thought

> perhaps

> > shape changing. Rib hump increasing perhaps rotation, and

curvature

> > perhaps below fusion.

> >

> > Some slight unsteadyness on feet and easily tired with walking

and

> > long periods of standing.

> >

> > No excessive pain, but some shall we say pressure on and in chest

> > especially on concave side.

> >

> > Any thoughts

> >

> > Thanks

> >

> > (York UK)

March 20, 2004

Sharon

Thanks for the information.

I keep trying those hip flex and end up in a head on the floor.

I can do about a 90 degree but 180, surley only a contortionist!!

York

UK

> , have you read Suzy's web page about flatback, and her

links, especially the article by Mina?

>

> I think the most important sign/symptom of flatback is an inability

to stand erect with the knees completely straightened. The head is

not balanced over the hips as it should be, but sticks out in front,

throwing the whole body and all body mechanics off balance.

>

> The most important risk factor for flatback is a Harrington rod

fusion which extends into the lumbar region.

>

> We scoliosis surgery vets are all screwy in different ways, though,

so we all have different sets of symptoms.

>

> Only a spine specialist MD (preferably a surgeon familiar with

adult scoliosis issues) can give you an official diagnosis, but if

you have it, it can be pretty easy to spot in the mirror while

standing with knees straightened. (We tend to stand with knees and

hips bent all the time to compensate.)

>

> Which reminds me of one more useful sign. Hip flexion

contractures. If you can't swing your straightened leg behind you

much beyond 180 degrees (a roughly straight line between head and

foot), they call this " hip flexion contractures " , and this is

typically seen in patients with flatback. When I was diagnosed with

this I said, " You mean I'm supposed to be able to do that?! " , and the

doctor showed me how he could. My mouth was hanging open.

>

> I hope you don't have it, but given your surgical history, there's

a good chance you have at least a mild case.

>

> Sharon

> Symptoms

>

> Evening All

> I have read this site a lot and contributed virtually nothing for

> which my apologies.

>

> I have used it as a source of symptom gathering information.

>

> Being unsure if i have early signs of HARMs flay back what ever i

> have tried to review others issues to decide. And you know, I am

> still not sure.

>

> Something is going on, but what, is unclear

>

> Could anyone spend a couple of minutes just advising on what the

> general symptoms I should be looking for are?

>

> General history is idiopathic scoliosis from 13 then Harringtons

from

> 16 and fusion down to L3. Gen Long Fusion to middle of shoulder

> blades.

>

> Been static and good for many years, then 2 years ago thought

perhaps

> shape changing. Rib hump increasing perhaps rotation, and

curvature

> perhaps below fusion.

>

> Some slight unsteadyness on feet and easily tired with walking

and

> long periods of standing.

>

> No excessive pain, but some shall we say pressure on and in chest

> especially on concave side.

>

> Any thoughts

>

> Thanks

>

> (York UK)

>

> Support for scoliosis-surgery veterans with Harrington Rod

Malalignment Syndrome. Not medical advice. Group does not control ads

or endorse any advertised products.

>

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

----------

>

March 21, 2004

, I guess I didn't explain the hip flexion contractures very well. It's a

bit hard without an illustration. " Normal " people can bend their hips backward

(opposite of the way they go when sitting)with legs extended. My hips go easily

forward, but little or not at all to the rear, thus rather severely limiting my

stride. I do work on stretching the hips back as far as they can go, but it's

not very far.

Anyway, you may or may not have some degree of flatback, but you do need to see

the right kind of doctor to find out. If you think your curve is worsening, a

scoliosis specialist really should be following you. If you're like most of us,

you don't have old x-rays to compare to your new ones, and this is in my opinion

an enormous fault on the part of the medical profession.

Sharon

Re: Symptoms

Evening All

Or Afternoon in the States

Thanks for your messages and information. Very helpful indeed.

I have seen an ortho surgeon, and the advice so far is lets see what

happens and your getting older so your body shape will change.

No recognition of the rib hump increasing and x rays that are taken

in the standing position alone.

Sure the man is a very competent surgeon but not a spine specialist.

Anyway, from the symptoms mentioned, i may have early signs but

nothing that matches the bent knees to maintain posture and no

inability to lie flat, and so far no bad pain on the levels you

mention. It may come but not yet.

So if its starting, then its early doors.

Re the balance, I am told I have good trunkel balance (sounds like

some elephant) and my head is directly above the lumber spine, so

again good balance. If anything I slightly lean back (normally

worsens after about 3 beers so I am told)

I did try the leg at 180 degrees. Did you really mean 180 degrees?

I get the impression I can do some of that but perhaps not all.

My symptoms are more perhaps related to increasing curve maybe as a

result of the unfused bits wearing which perhaps may exagerate my rib

hump.

This site has been really helpful. I have learned phrases for things

I knew but did not know the name I.e. the body plaster cast (Risser)

I had one for 12 months, and had no idea it had a name.

What ever happend to stryker frames too, tell me they are still not

on the go.

thanks again for your information.

I promise to contribute more in the future, although your all light

years ahead of me in terminology and knowledge

in York (UK)

(very wet, very windy, and for once the river is not flooding)

> > Evening All

> > I have read this site a lot and contributed virtually nothing for

> > which my apologies.

> >

> > I have used it as a source of symptom gathering information.

> >

> > Being unsure if i have early signs of HARMs flay back what ever i

> > have tried to review others issues to decide. And you know, I am

> > still not sure.

> >

> > Something is going on, but what, is unclear

> >

> > Could anyone spend a couple of minutes just advising on what the

> > general symptoms I should be looking for are?

> >

> > General history is idiopathic scoliosis from 13 then Harringtons

> from

> > 16 and fusion down to L3. Gen Long Fusion to middle of shoulder

> > blades.

> >

> > Been static and good for many years, then 2 years ago thought

> perhaps

> > shape changing. Rib hump increasing perhaps rotation, and

curvature

> > perhaps below fusion.

> >

> > Some slight unsteadyness on feet and easily tired with walking

and

> > long periods of standing.

> >

> > No excessive pain, but some shall we say pressure on and in chest

> > especially on concave side.

> >

> > Any thoughts

> >

> > Thanks

> >

> > (York UK)

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

March 21, 2004

By 180 degrees, I meant a straight line, head at 12:00, feet at 6:00. For me,

just achieving that straight line is an effort. If your hips can go backward by

90 degrees, I'd say they're pretty flexible!

Symptoms

>

> Evening All

> I have read this site a lot and contributed virtually nothing for

> which my apologies.

>

> I have used it as a source of symptom gathering information.

>

> Being unsure if i have early signs of HARMs flay back what ever i

> have tried to review others issues to decide. And you know, I am

> still not sure.

>

> Something is going on, but what, is unclear

>

> Could anyone spend a couple of minutes just advising on what the

> general symptoms I should be looking for are?

>

> General history is idiopathic scoliosis from 13 then Harringtons

from

> 16 and fusion down to L3. Gen Long Fusion to middle of shoulder

> blades.

>

> Been static and good for many years, then 2 years ago thought

perhaps

> shape changing. Rib hump increasing perhaps rotation, and

curvature

> perhaps below fusion.

>

> Some slight unsteadyness on feet and easily tired with walking

and

> long periods of standing.

>

> No excessive pain, but some shall we say pressure on and in chest

> especially on concave side.

>

> Any thoughts

>

> Thanks

>

> (York UK)

>

> Support for scoliosis-surgery veterans with Harrington Rod

Malalignment Syndrome. Not medical advice. Group does not control ads

or endorse any advertised products.

>

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

----------

>

March 21, 2004

Sharon,

I had a real shock the other day in the office of my internist (PCP). He was

very concerned that my pain was not being well taken care of and willing to

chat about that. However, after he agreed that my knees were suspect, I asked

him if I had " flatback " . He looked at me rather blankly. I said, " Do you

know about flatback? " and he still looked puzzled. I tried to explain that he

is

always telling me to watch my posture and to stay as agile as I can. I even

told him about our internet meetings, etc., and I think I introduced him to a

new area of scoliosis! It was actually quite disheartening, even though he is

very eager to combat the pain. I'm just passing this along, because I was

flabbergasted. He's a great guy, otherwise.

As soon as I have my hands taken care of, I'm back to Dr. Rand!

Sincerely,

Carole M. (the elder)

March 21, 2004

Hi Everyone,

I would just like to add about our internists knowing about flatback. My Dr.

had no idea what flatback was so I also printed many articles for her to read

and educate herself on it. She is fighting for me to have our HMO cover my

revision surgery when I need it. I am going to see Dr. Hu in San Francisco on

March 31st for my first appt with a revision surgeon. Kind of getting

nervous to hear what she has to say but I kind of know what I am in for. I know

I

do not post very often but I do appreciate all the info I receive from everyone

on this site! It is very helpful and I have saved so many emails in my

folder for future reference!

If there is anyone in southern California are that would like to get together

for lunch, etc., please let me know! It would be great to talk with fellow

members who are going through or went through a revision!

Take care everyone and thanks for all the valuable info I have read!

March 21, 2004

Sharon,

Thanks for the quick reply! Almost an IM! I tried to print out an article

on flatback, and do plan to snail mail it to my internist. Yes, I do have a

" good one " and know that he will study up, too! At least, I think so! Take

care! BTW, you mentioned a big garden project. Since you are further north

than

I, I'm curious. Wanna tell what it is?

Sincerely,

Nosy Carole M.

March 21, 2004

Hi Loriann,

Thank you for taking the time to respond to my flatback post! I actually met

my PCP shortly after my Harrington/Luque rod surgery. He is a dedicated

" people " physician and has always tried to find the right " cocktail " as he calls

it, for me. That, of course, is after he had me attend many Pain Clinics and

get many treatments, and after it ended up that I would be on some strong

medications. He is very good about being on top of the newest treatments for

pain,

etc. However, it was because he kept telling me that I had arthritis in my

knees that I began to think he may not be equating the knees with my back

problems. My insurance is such that I don't actually need a referral to see Dr.

Rand. I'm not sure if Dr. Rand sent his findings to my PCP, although I should

check that out! I do plan to see Dr. Rand in the near future, but have to get

these hands taken care of first, or I'll be unable to even get there! I shall

keep in mind what you have said, and certainly will be asking my PCP those

very questions. Thank you so much!

Sincerely,

Carole M. (the elder)

March 21, 2004

Carole, I'm not at all surprised at the idea that flatback was previously

unknown to your internist. I introduced it to mine. I didn't even assume she'd

heard of it. I just printed out a couple of good articles by revision

specialists and left them for her prior to my appointment. She's very

supportive of my seeing Dr. Rand (gently reminds me that I should make an

appointment) and is interested in helping me control my pain.

Sounds like you've got a good one, too.

Re: Re: Symptoms

Sharon,

I had a real shock the other day in the office of my internist (PCP). He was

very concerned that my pain was not being well taken care of and willing to

chat about that. However, after he agreed that my knees were suspect, I asked

him if I had " flatback " . He looked at me rather blankly. I said, " Do you

know about flatback? " and he still looked puzzled. I tried to explain that he

is

always telling me to watch my posture and to stay as agile as I can. I even

told him about our internet meetings, etc., and I think I introduced him to a

new area of scoliosis! It was actually quite disheartening, even though he is

very eager to combat the pain. I'm just passing this along, because I was

flabbergasted. He's a great guy, otherwise.

As soon as I have my hands taken care of, I'm back to Dr. Rand!

Sincerely,

Carole M. (the elder)

March 21, 2004

Carol,

In my experience, flatback syndrome caused by old-style fusions is

not a well known ailment outside of the orthopedic and more

specifically, the spine or scoliosis sub-fields. I've ranted and

raved about how I could have made better choices in my life if my PCP

had been aware of flatback syndrome and warned me about it years ago

when I first started exhibiting symptoms, and had no idea what was

causing them.

I'd be curious - if you've seen Dr. Rand before, has he sent reports

to your PCP? Did the reports specifically indicate that you have

flatback syndrome? I haven't seen my PCP in 5 or 6 years - last time

I saw him, instead of referring me to a spine doc, he told me to try

a different pair of shoes. If I ever do go back to him I know I will

feel compelled to ask him if he has become any more familiar with my

diagnosis and its seriousness.

Anyways, just wanted to tell you of my experience. I'm at least glad

to hear your doc will help you sort out the pain issues and hope that

you can get some relief.

Best wishes,

loriann

March 21, 2004

Well, Carole, I'll tell you, at the risk of my being banned from the group for

being insufficiently disabled! LOL

I have a 10' X 15' lily/goldfish pond that I built 9 years ago. The PVC liner

is shot, and since I'm replacing the liner with longer-lasting EPDM rubber, it's

only natural that I should go for a bigger, better pond (well, natural to a

confirmed pondaholic, anyway :^)

So I'm planning to make it at least twice as big, and, with the help of my

pondkeeper buddies on my other favorite forum, I'm looking at building much of

the filtration system myself. I'll have someone in with a backhoe to do the big

digging, then fine-tune the hole and lay the plumbing. Then I plan to have a

" liner party " with pizza and a bunch of able-bodied friends & neighbors to help

lay the big, heavy liner. Then I'll finish the installation and landscaping,

including a stone waterfall. Before any of this happens I do have to remove the

old pond, including netting out the fish and tadpoles. Not a job for the faint

of heart, or even for the entirely sane, I suppose. But I plan to pace myself

and not to accomplish much of anything else while I'm at it.

I guess my rationale is that the exercise of both body and spirit will do me

good, and I want to do things like this while it's still possible for me. Doing

this thing right will allow for much lighter maintenance chores in the future,

and hopefully I'll have this place of beauty to enjoy in my later years.

Re: Re: Symptoms

BTW, you mentioned a big garden project. Since you are further north than

I, I'm curious. Wanna tell what it is?

Sincerely,

Nosy Carole M.

March 22, 2004

Sharon,

I love your project! We keep looking at little starter things like that, but

haven't really begun. Whoops! Not quite true. We do have a little " well "

with a pump watched over by St. Francis in a little wooded area in the

backyard. I think that your project is so great! I also think that you are

right.

When we can accomplish things, we feel better. Later you will feel better

just gazing at it! Not too long ago, I suddenly developed a clot in my leg

while

working in the backyard. The ultrasound person asked me what I was doing

when I felt it. I had to tell her I was chopping down trees! I can still see

her face! People must think I veg out on the couch all day, but I cannot do

that!

Thanks for sharing your project! I'll be anxious to hear how it turns out!

Carole M.

March 22, 2004

Thanks for the kind words and encouragement, Carole! If you do go for a little

pond (or a not-so-little one), be sure to ask for pointers. Better to learn

from others' mistakes than your own.

I'll be happy to keep you updated, and even bore you with pictures. LOL

Sharon

Re: Re: Symptoms

Sharon,

I love your project! We keep looking at little starter things like that, but

haven't really begun. Whoops! Not quite true. We do have a little " well "

with a pump watched over by St. Francis in a little wooded area in the

backyard. I think that your project is so great! I also think that you are

right.

When we can accomplish things, we feel better. Later you will feel better

just gazing at it! Not too long ago, I suddenly developed a clot in my leg

while

working in the backyard. The ultrasound person asked me what I was doing

when I felt it. I had to tell her I was chopping down trees! I can still see

her face! People must think I veg out on the couch all day, but I cannot do

that!

Thanks for sharing your project! I'll be anxious to hear how it turns out!

Carole M.

March 24, 2004

Gee, Cheryl,

I just read your post about the house deal! What a great idea! I wish we

could work out something like that, but the kids are too far away. Our town

does have a new zoning variance which allows people in residential areas to add

on in-law apartments (only way they can expand double occupancy).

At any rate, I wish you well in your new arrangement! It sounds so great!

Carole M. (the elder)

March 24, 2004

Thanks for reminding me, Carole. I think that sounds great, Cheryl! Best of

luck with the new arrangement.

Re: Re: Symptoms

Gee, Cheryl,

I just read your post about the house deal! What a great idea! I wish we

could work out something like that, but the kids are too far away. Our town

does have a new zoning variance which allows people in residential areas to

add

on in-law apartments (only way they can expand double occupancy).

At any rate, I wish you well in your new arrangement! It sounds so great!

Carole M. (the elder)

May 8, 2006

Hi,

in my opinion everyone may end up on this list eventually, from what my

understanding here at the gates of heaven is..

yeah chi machine, rock or sea salt soaks and wraps, intuit, pay attention..

Love

--------------------------------------------------------------------------------\

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

Bow, come on baby let Me see your tailfeathers, hands up, surrender to Love//

No (karma)strings attached, easier said then done, it can be done, hang in

there

Judy <taylorjm@...> wrote:

I would like to know if you on the list have found retaining of fluid in

the body is a symptom of electrosensitivity?

My mother is retaining fluid, it started in her legs (but not her

ankles) and has moved up to her hips and stomach.

It is not pitted edema. The skin just bounces back after being touched,

doesn't turn white either.

Doctor doesn't know what is causing it. Not heart or kidneys. For

her age she is in pretty good health.

A large communications tower (internet) has recently been built near

where she lives.

Thanks for your thoughtful comments.

Judy

May 8, 2006

I can't say for certain if when I was doing that at the worst it was

related or not, although my feet felt like they squished with water

in the mornings when I first got up for a long, long time. I have

heard other people say they have had that. I suspect it is part of

the bodies way of trying to expel or repel the offender.

~ Snoshoe

>

> I would like to know if you on the list have found retaining of

fluid in

> the body is a symptom of electrosensitivity?

>

> My mother is retaining fluid, it started in her legs (but not her

> ankles) and has moved up to her hips and stomach.

>

> It is not pitted edema. The skin just bounces back after being

touched,

> doesn't turn white either.

>

> Doctor doesn't know what is causing it. Not heart or kidneys.

For

> her age she is in pretty good health.

>

> A large communications tower (internet) has recently been built

near

> where she lives.

>

> Thanks for your thoughtful comments.

>

> Judy

>

May 9, 2006

Hey Judy,

Can you say potatoes or potautoes? This is a symptom of detoxing. It can be

caused from lymphatic congestion which is brought on when you detox too quickly

for the toxins to get out of the body. As I said in an earlier post.... I

suspect alot of the symptoms people have here are detox symptoms brought about

by magnetic or electrical frequencies moving toxins around in or detoxing toxins

from the body. This would be an example of what I am talking about.

Diane

Judy <taylorjm@...> wrote:

I would like to know if you on the list have found retaining of fluid in

the body is a symptom of electrosensitivity?

My mother is retaining fluid, it started in her legs (but not her

ankles) and has moved up to her hips and stomach.

It is not pitted edema. The skin just bounces back after being touched,

doesn't turn white either.

Doctor doesn't know what is causing it. Not heart or kidneys. For

her age she is in pretty good health.

A large communications tower (internet) has recently been built near

where she lives.

Thanks for your thoughtful comments.

Judy

December 10, 2006

Hi Miriam

Your symptoms are not untypical and there isn't really anything that will relieve them except for surgical removal of the ctoma. In fact, until that time they are only likely to get worse. The ctoma dislodges and erodes the hearing bones causing conductive hearing loss. The fact that your hearing went and then came back may be because the ctoma is itself now acting as a conduit for sound. Depending on the damage that has been done to your ear it may as good after the surgery. It is possible to restore conductive hearing by inserting a prosthesis - many of us have had that done.

Often loud noises distress me, and I am unable to distinguish words when I am in a crowd.

Symptoms of hearing loss. It's the ability to distinguish high and low tones that enable normal hearers to pinpoint one sound amongst many. As you lose those tones then any situation where there is background noise can become quite distressing. Everything turns into a meaningless cacophony.

It's pretty grim having to wait around for surgery but that's the situation you are and it's the only thing that will resolve your immediate discomforts. Good luck

Phil

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December 11, 2006

Miriam,

You have my sympathy. I am new to California and last February I

began having problems in both ears. I went to many doctors before I

finally found an otologist....recommended by my otologist in NH. It

took forever and since I have had two surgeries and still am having

problems. It sounds like you have a wonderful surgeon though which is

a blessing.

It is not fun being somewhere where you are new and feeling poorly. I

too am in my mid sixties and single though I do have a partner. If he

were not with me I would really be miserable.

Where are you in CA? You can email me off list if you like.

In cholesteatoma , " Miriam Felt " <miriamfelt@...> wrote:

>

> CholesteatomaI recently went to the Dr. and he said I had a ctoma

and I would go to Palo Alto for surgery and the surgeon, when

scheduled, would be Dr. Roberson. I have been getting constant

infections as indicated by the mucous and low grade fevers. I get

sharp pains in my left ear. I have constant low level headaches,

dizziness, lose my balance and in general do not feel well at all.

The Dr. scheduled a cat on nov 7th and a hearing test on the 13th. I

had lost the hearing in my left ear and it has now come back. My

right ear hearing has also degenerated and the dr. suspected I may

have a ctoma in my right ear also. Often loud noises distress me, and

I am unable to distinguish words when I am in a crowd. I feel as if

my life is on hold. I teach and the symptoms I have interfere with my

speaking and my teaching. I cancelled teaching for the month of

January in hopes I would have the surgery in December. Since surgery

is not scheduled yet, I am concerned that my life will be completely

disrupted by whatever this thing is. I had started an excercise

regime, but i kept getting low grade fever and put the excercise

program on hold until the infections stopped. No one has really

talked to me about what I should do, what I can do to help myself and

I do not know how to ask the questions. I desperately need

suggestions and advice. I have a medical condition and have no idea

as to what to do. I may add I am 66 year old single female and I have

no immediate family where I live. I am new to this small community

and have not yet been accepted, if ever, in this community.

>

> Thank you for this website. I am scared and I feel helpless and

sometimes hopeless.

>

> miriam (miriamfelt@...)

>

September 24, 2007

Jill,

I too have had vision changes...I even went to my eye

doctor who said my vision has not changed prescription

wise... but sometimes during the day things get really

hazy. I also have a constant headache, only on the

right side of my head and my c-toma is in the right

ear, so I figure the c-toma is the cause. I have

surgery on Oct. 1st and I am anxious to see if these

symptoms go away...I'll let you know! Good luck with

your MRI.

--- dunerkat <dunerkat@...> wrote:

> I have had 3 ear infections since June & the ENT I

> went to suspects a c-

> toma. I will be having an MRI to diagnose it. I have

> some dizziness,

> slight discharge from my ear & most bothersome, a

> constant headache on

> my forehead that seems to get worse at night. I also

> have noticed

> occasional vision changes. My question is - are

> these symptoms simliar

> to what anyone else has had? I hope the MRI will

> help with a diagnosis.

> This board is very helpful - thanks - jill

>

________________________________________________________________________________\

____

Catch up on fall's hot new shows on TV. Watch previews, get listings, and

more!

http://tv./collections/3658

September 25, 2007

thanks nicole - my vision does the same thing, it gets hazy during

the day,usually when i'm driving. it's very odd, because i can still

see, it's just everything is hazy. the headache is driving me nuts.

good luck with your surgery, i hope it goes well. jill

-- In cholesteatoma , niki kennedy <nikikennedy@...>

wrote:

>

> Jill,

>

> I too have had vision changes...I even went to my eye

> doctor who said my vision has not changed prescription

> wise... but sometimes during the day things get really

> hazy. I also have a constant headache, only on the

> right side of my head and my c-toma is in the right

> ear, so I figure the c-toma is the cause. I have

> surgery on Oct. 1st and I am anxious to see if these

> symptoms go away...I'll let you know! Good luck with

> your MRI.

>

> --- dunerkat <dunerkat@...> wrote:

>

> > I have had 3 ear infections since June & the ENT I

> > went to suspects a c-

> > toma. I will be having an MRI to diagnose it. I have

> > some dizziness,

> > slight discharge from my ear & most bothersome, a

> > constant headache on

> > my forehead that seems to get worse at night. I also

> > have noticed

> > occasional vision changes. My question is - are

> > these symptoms simliar

> > to what anyone else has had? I hope the MRI will

> > help with a diagnosis.

> > This board is very helpful - thanks - jill

> >

>

______________________________________________________________________

______________

> Catch up on fall's hot new shows on TV. Watch previews, get

listings, and more!

> http://tv./collections/3658

>

September 25, 2007

Hi Miriam,

- so sorry you're going through this. It really does help to hear

from others who have been through it and experiences vary quite a

bit. Have you been put on a waiting list in case an appointment opens

up sooner? I am waiting for surgery and the one thing that has helped

me in the meantime is acupuncture. When I went to the hospital I

could barely walk because I was so off-balance and dizzy. I was given

antivert which may have helped a little, but mostly made me sleepy so

I stopped. On the 3rd day I received an acupuncture treatment and it

was shortly after that my symptoms began to subside & improve so that

I'm functioning normally now with no dizziness.....I don't know if it

works in all cases but thought I'd mention it. Maybe your doctor has

a suggestion....Best of luck....I hope you find relief while you're

waiting... take care, Connie