New to group

[Guest guest]

hi kathy...nice to meet you~

I haven't been around lately myself. Nice to see some more people in here. I

am on the thryoid rollercoaster too. My TSH has spiked from 16 to 71.5 in

the couple weeks I was taking 12.5mcg and so now I'm on 25mcg for another

month cause he's going slowly to monitor what happens cause mine was going

up and down. I was nearly hYPERthyroid last month on 75mcg, so we started

over when I was up all night feeling like I was bouncing off the walls...

but yes, the Fatigue sucks bigtime! As for sleeping, I still have trouble

too, even though I am soooo tired and i get heart flutters sometimes. But

now I don't think it thyroid-med related though...i suspect simple stress or

perimenopause cause even when I didn't take levoxyl I have it. Anyway,

healthy wishes to everyone. May we all feel better!

love rhonda

new to group

> just wanted to say hello. new to group. diagnosed w/graves disease

> in june. thought i was going through menopause. could not figure

> out what was going on. in july my thyroid was ablated, which means

> i had the radioactive iodine treatment to kill it off. been going

> through hell since, but finally now am starting to feel half way

> human again. the fatigue is the killer. started on synthroid a

> month ago when my tsh finally went over 5, it was up to 45, now its

> at 20. probably by the time i'm done, i'll be up to 125mg of

> synthroid, only on 75mg now. i don't have tachycardia anymore, but

> am starting to have a little trouble sleeping again. and i'm hot

> again. hot/cold, can't keep up w/it.

> anyways, glad to be w/fellow ladies w/similar problem.

> talk w/you again soon.

>

>

>

>

[Guest guest]

First off, I was diagnosed by a military "doctor". All they would do was a tsh. I have just moved, and my husband has been deployed a lot this year, but I have a "real" doctor now, so I will definitely have him look at this and do my tests again. I haven't been tested since April, but that's because my doctor said that I had been "stable" on .025mg for a year. I've honestly never seen my test results. I'm a medical assistant, and it's never crossed my mind. Now my dog with 's disease, I get a copy of her blood work every time. :) Go figure. :)

I have another question. Could this have something to do with me not being able to get pregnant? Could it have something to do with me not ovulating?

Amy

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Hi, Jeff,

My medical problems began with heel spurs and IBS. I repeatedly

mentioned to my internist that I had inflammation (tendonitis) at the

point of tendon attachment. This went on for 15 years, and several

internists later, before I was diagnosed.

I kept changing internists hoping that someone would figure out what was

happening to me. Sadly, nearly all of my doctors said it was all in my

head and wrote referrals to psychologists, but I KNEW that something was

wrong. And like most of us, our persistence eventually lead us to this

site.

After injections, casting, PT, years of NSAIDs and finally orthopedic

inserts, my heels are doing better. I had similar treatments for my hips

(except no inserts!). Yes, flares and constant fatigue do occur; I am

also HLA-B27 negative, have partial fusion in my neck and back, and have

had several flares - one that is on-going since January 2003.

Presently, my drug arsenal is Plaquinell, Sulfasalazine, Diclofenac,

folic acid, Skelaxin, and Diltiazem. My rheumatologist wanted me to take

Methotrexate for over a year now, but I continue to resist - although it

IS next if the Plaquinell does not control the disease/pain. I have not

had eye problems/infections yet, but taking Plaquinell requires eye

exams every 6 months.

This site is very helpful and the members are extremely supportive

offering exclusive insight into this disease and the various drugs

necessary to control it.

Welcome to the site, and please continue to keep us informed.

Pat

[Guest guest]

Hi Jeff, I'm glad that you found the group. What do you mean by frequent

infections? Viral, bacterial or fungal? I have been on Methotrexate for over a

decade. I tried to go off it but inflammation reoccurred. I recently have had

a great deal of heel pain and will soon start physical therapy to treat it.

Methotrexate is a safe drug when it is monitored closely. It is one of the

safer drugs available to treat our disorder according to my rheumatologist. I

have not had too great a problem with infections. I have mostly had to deal

with bacterial infections, primarily bladder. I'm on daily antibiotics now to

prevent them. Your rheumatologist is probably the best source to advise you on

your ability take Methotrexate. If you have any doubts in your doctor's advise,

get a second opinion from another rheumatologist. Good luck with it.

Kay Braddock

Speedway German Wirehaired Pointers

Paint Horses

[Guest guest]

Hi Kay,

My Rheumatologist feels that I have been having too many bacterial

infections to start Methotrexate. She is concerned that if I am

given a drug that lowers my immune system in conjuction with an

ongoing bacterial infection, things will only get worse.

My primary care physician is sending me to the University of Florida

Medical Center for evaluation by their rheumatologists. In the

meantime, trying to control the flares has been difficult!

[Guest guest]

I'm glad you are getting another opinion on the methotrexate. Even a low dose

might be helpful. Good Luck!

Kay Braddock

Speedway German Wirehaired Pointers

Paint Horses

[Guest guest]

Hi, Barbara --

I was so glad to read your detailed letter. We have much in common! My second

fusion was probably performed within a year of yours -- 1987 for me, at which

time I acquired the Harrington rod that caused the flatback. My first fusion,

with no instrumentation at all, was done at Walter Army Medical Center,

circa 1962, when I was -- yup -- 13 years old.

I'm so sorry to hear about the symptoms you've been having more recently. As I

may have mentioned, the neurosurgeon I have recently consulted in Chicago, Dr.

Ondra at Northwestern University, tells me that he works closely with

Dr. Bridwell in St. Louis. He has the highest praise for Dr. Bridwell. I have

heard very good things about the St. Louis (Washington University) surgeons from

multiple other sources as well.

You may also want to try putting their names in as a search term in the Messages

section of the feisty site, using the groups search device.

Best,

New to Group

I am new to the group and would like to thank for her warm

welcome. My name is Barbara and I am 55 years old. My first

scoliosis surgery was in 1962 at age 13, fusion only no rods. My

first revision surgery was in 1988 at the University of Kansas

Hospital. At that time the fusion was extended and CD

instrumentation was inserted. My second revision was again at the

Univ. of Kansas in Sept. 2001. I was in the hospital at the time of

9/11. The fusion was extended to S1, old CD rods removed and Isola

Instrumentation inserted. I am fused T4 to S1 and have a 69 degree

thoracolumbar curve. Both revision surgeries were done because of

pain in my right hip, leg and foot. An EMG confirmed S1 nerve root

irritation.

The term " flatback " was not used, but prior to the 2001 revision I

could not stand straight. I constantly felt like I was leaning

forward. I stand pretty straight now. However, for the past year I

have been having increasing pain and numbness in the right leg and

foot. My right foot is almost totally numb and I have neuropathic

pain and muscular pain in the right leg. The doctor who did my

fusion and instrumentation retired a year ago. He was wonderful.

The doctor who took over the clinic practice has been cold and

arrogant and actually dismissed me. After several visits with him

and a neurologist, he informed me " there's nothing else we can do for

you. " That was a real kick in the teeth.

I live in Kansas City and have noticed that Dr. Bridwell and Dr.

Lenky of Wash U in St. Louis have been mentioned as highly qualified

revision specialists. I would appreciate any info that any one might

have on these doctors as well as others in the Midwest. I hope to

become an active participant in this group; to help others and to

gain knowledge. People who have not been through what we have cannot

understand the impact these surgeries have on our lives. Wishing all

of you peace. Barbara in KC

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

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

[Guest guest]

Barbara,

I too had my surgeries at KU Medical Center. I assume the Dr who retired was

Dr. Marc Asher-he did my original surgery in 1973 and was an excellent doctor

in my opinion. My second surgery in 2001 was done my Dr. Burton who replaced

Dr. Asher-although he was quite young I was very impressed with his knowledge

and concern for me. My original appt was with Dr. Asher and he introduced

me to Dr. Burton and I was very pleased with his treatment of me both thru

surgery and afterwards. I know in my own experience that sometimes it is easy

to

become frustrated with the whole " harrington rod " deal. I like you have

wondered about Dr. Birdwell in St. Louis-while I'm not experiencing a lot of

pain

or discomfort now I know that the possiblity is there for the future. I am

trying to research and read and learn from everyones experiences now so that I

can

begin to make that decision before I'm in so much pain that I'm not making

the best choices. I wish you good luck in your search!

Dee

Harrington Rod - 1973

Laminectomy/discetomy 2001

[Guest guest]

In a message dated 1/22/2004 3:32:20 AM Pacific Standard Time,

rlw70@... writes:

but what I am looking for now is some

advice or hear your experience or what are things you wished you had

asked.

.......What you probably need to do now is talk to other parents that

have children with CI's so you can get a gist of what kind of rehabilitation

schedule you and your daughter will be going through. I have had my Clarion

CII for 18 months now after spending over 30 years in dead silence. I woke up

deaf one morning at the age of 17 and had a previous failed CI back in 1985.

I waited a long time before getting another CI....wanted the technology to be

very advanced before I did it again!

I am grateful beyond words for this technology. Hearing voices again gave

me back the gift of communication and having music again gave me back that

part of my heart that got torn out the day the music died. Best wishes with

your daughter's surgery, recovery and hookup!

Deb H

Clarion CII 6/18/02

HiRes/Auria Jan 2003

[Guest guest]

Karon,

Welcome to the group.. There are alot of good information that Bee

has put on this site.... I have a weight problem and since last June

I've lost about 20 pounds being on Synthoid and cytomel. Now Iam on

Armour and its not working with the losing of the weight like

Synthoid and cytomel did.. Iam going to ask the endo. doctor to

change my med's the next time I see him

Robin

> hey all..i am new to this group. just joined..I have

hypothyroidism

> and am currently on synthroid. My main problem is my weight gain.

I

> feel so bad about that because i used to be little but not any

more!!!

> I also have lupus which could have onset the throid problem.

Lately I

> have been so down about my weight gain. And I would love the

support

> from others who may understand what i am going thru. Thankd for

> letting me vent..I am looking forward to meeting you all

> Karon..

[Guest guest]

Hi! I would be happy to talk to you. My husband had an open

procedure myotomy a year ago, and though the recovery is harder he

would leave today and do it again. Since his surgery, he is able to

eat anything with a little help from his loved water. Please feel

free to email me at chetjet3@... - I will be happy to give you

my phone number through email, or you could give me yours so that we

can actually talk.

Believe me we were scared to death, but it really does all turn out

to be worth every second!!

> Just found out what I have, already had all testing, they want to

do

> surgery..Really, really scared. I would love to talk to others.. I

> have to have open cut..told mto expect hard time.. please write

> back..

[Guest guest]

Hi and welcome to the group. I too was recommended to have the

surgery and have opted to get it done. I'm going in on Feb 18th.

But mine is being done laparscopically. I'm scared too. Did they say

why they needed to do an open surgery for you?

Well this group is a great source of information. There's a lot you

can find out here and also great support.

Best of luck,

, NYC

> Just found out what I have, already had all testing, they want to

do

> surgery..Really, really scared. I would love to talk to others.. I

> have to have open cut..told mto expect hard time.. please write

> back..

[Guest guest]

Hi, I had an open procedure for a Myotomy but mine was about 18 years ago

there others here that I am sure will be glad to share their experiences

with you.

F

New to group

> Just found out what I have, already had all testing, they want to do

> surgery..Really, really scared. I would love to talk to others.. I

> have to have open cut..told mto expect hard time.. please write

> back..

>

>

>

>

>

>

[Guest guest]

I understand you are scared. I had lap surgery almost

one year ago. I believe it was one of the best gifts

I have given myself.

Why do they want to do an open cut? Just wondering.

Jenifer in Ohio

> Just found out what I have, already had all testing, they want to

do

> surgery..Really, really scared. I would love to talk to others.. I

> have to have open cut..told mto expect hard time.. please write

> back..

[Guest guest]

Hello. I just got home from the hospital about an hour ago--I had a Heller myotomy yesterday. It went perfectly. I am still only on clear liquids, but things are going down. I had my surgery laproscopically, and I am amazed at how little pain I am in. I only had to stay for one night, and I was up and walking around less than 8 hours after getting out of surgery. I have to stay home from work for two weeks, and be on a liquid diet for a week, then only soft foods next week. But I already feel so much better. Before the surgery, I could not even drink a small sip of water without feeling it get stuck ....already, my life has improved, and it will only get better and easier from here. You are in good, supportive company in this group. And if you would like, I can keep you up to date on my progress. Maybe it will help ease some of your anxiety. And just so you know, I was incredibly anxious before my surgery. It was not nearly as bad as I was thinking it would be. Just think of how much your life will improve after surgery!

hang in there,

jes,

Portland, Maine

-----Original Message-----From: arabiankay [mailto:arabiankay@...]Sent: Friday, January 23, 2004 5:11 PMachalasia Subject: New to groupJust found out what I have, already had all testing, they want to do surgery..Really, really scared. I would love to talk to others.. I have to have open cut..told mto expect hard time.. please write back..

[Guest guest]

Congrats, Jes! Glad to hear you had such a good experience!

Continued prayers for quick healing, and please keep us posted on your progress!Debbi in Michigan

Hello. I just got home from the hospital about an hour ago--I had a Heller myotomy yesterday. It went perfectly. I am still only on clear liquids, but things are going down. I had my surgery laproscopically, and I am amazed at how little pain I am in. I only had to stay for one night, and I was up and walking around less than 8 hours after getting out of surgery. I have to stay home from work for two weeks, and be on a liquid diet for a week, then only soft foods next week. But I already feel so much better. Before the surgery, I could not even drink a small sip of water without feeling it get stuck ....already, my life has improved, and it will only get better and easier from here. You are in good, supportive company in this group. And if you would like, I can keep you up to date on my progress. Maybe it will help ease some of your anxiety. And just so you know, I was incredibly anxious before my surgery. It was not nearly as bad as I was thinking it would be. Just think of how much your life will improve after surgery!

hang in there,

jes,

Portland, Maine

[Guest guest]

Jes, Congrats on your successful surgery!! I'm going in on Feb 18th

and will sure like to hear how your doing. Enjoy the time off...I

know I will. lol.

Quick question...did they make you go on a clear liquid diet for 3

days before the surgery? I'm worried about being to weak where they

won't be able to perform the surgery.

Good luck and good eating! I'm so happy for you!

, NYC

> Hello. I just got home from the hospital about an hour ago--I had

a Heller

> myotomy yesterday. It went perfectly. I am still only on clear

liquids,

> but things are going down. I had my surgery laproscopically, and I

am

> amazed at how little pain I am in. I only had to stay for one

night, and I

> was up and walking around less than 8 hours after getting out of

surgery. I

> have to stay home from work for two weeks, and be on a liquid diet

for a

> week, then only soft foods next week. But I already feel so much

better.

> Before the surgery, I could not even drink a small sip of water

without

> feeling it get stuck ....already, my life has improved, and it will

only get

> better and easier from here. You are in good, supportive company

in this

> group. And if you would like, I can keep you up to date on my

progress.

> Maybe it will help ease some of your anxiety. And just so you

know, I was

> incredibly anxious before my surgery. It was not nearly as bad as

I was

> thinking it would be. Just think of how much your life will

improve after

> surgery!

>

> hang in there,

> jes,

> Portland, Maine

> New to group

>

>

> Just found out what I have, already had all testing, they want to do

> surgery..Really, really scared. I would love to talk to others.. I

> have to have open cut..told mto expect hard time.. please write

> back..

>

>

>

>

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

--------

> ----

>

[Guest guest]

Congradulations Jes! Enjoy that warm feeling in your stomache!

Jenifer in Ohio

> Hello. I just got home from the hospital about an hour ago--I had

a Heller

> myotomy yesterday. It went perfectly. I am still only on clear

liquids,

> but things are going down. I had my surgery laproscopically, and I

am

> amazed at how little pain I am in. I only had to stay for one

night, and I

> was up and walking around less than 8 hours after getting out of

surgery. I

> have to stay home from work for two weeks, and be on a liquid diet

for a

> week, then only soft foods next week. But I already feel so much

better.

> Before the surgery, I could not even drink a small sip of water

without

> feeling it get stuck ....already, my life has improved, and it will

only get

> better and easier from here. You are in good, supportive company

in this

> group. And if you would like, I can keep you up to date on my

progress.

> Maybe it will help ease some of your anxiety. And just so you

know, I was

> incredibly anxious before my surgery. It was not nearly as bad as

I was

> thinking it would be. Just think of how much your life will

improve after

> surgery!

>

> hang in there,

> jes,

> Portland, Maine

> New to group

>

>

> Just found out what I have, already had all testing, they want to do

> surgery..Really, really scared. I would love to talk to others.. I

> have to have open cut..told mto expect hard time.. please write

> back..

>

>

>

>

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

--------

> ----

>

[Guest guest]

Jes,

Your positive outlook after surgery will be a great help to others, it would indeed be helpful to keep us updated on your progress.

F

RE: New to group

Hello. I just got home from the hospital about an hour ago--I had a Heller myotomy yesterday. It went perfectly. I am still only on clear liquids, but things are going down. I had my surgery laproscopically, and I am amazed at how little pain I am in. I only had to stay for one night, and I was up and walking around less than 8 hours after getting out of surgery. I have to stay home from work for two weeks, and be on a liquid diet for a week, then only soft foods next week. But I already feel so much better. Before the surgery, I could not even drink a small sip of water without feeling it get stuck ....already, my life has improved, and it will only get better and easier from here. You are in good, supportive company in this group. And if you would like, I can keep you up to date on my progress. Maybe it will help ease some of your anxiety. And just so you know, I was incredibly anxious before my surgery. It was not nearly as bad as I was thinking it would be. Just think of how much your life will improve after surgery!

hang in there,

jes,

Portland, Maine

-----Original Message-----From: arabiankay [mailto:arabiankay@...]Sent: Friday, January 23, 2004 5:11 PMachalasia Subject: New to groupJust found out what I have, already had all testing, they want to do surgery..Really, really scared. I would love to talk to others.. I have to have open cut..told mto expect hard time.. please write back..

[Guest guest]

Hi . I was thinking about you, knowing you would want to know what I was going through. The only diet restriction I had before my surgery was fasting the night before. After surgery, I was on a clear liquid diet in the hospital. I really did not feel like eating or drinking much, and I had them keep me on the IV so I would stay hydrated. I am home now, and on a pure liquid diet for a week, then I can eat mushy foods next week. Right now, I am not eating a lot, and I feel pretty weak, but I am also in oxy and still groggy from the general. I wonder why they want you on a clear liquid diet before the surgery...

The pain from the surgery is really minor. The only thing I have had trouble with is called crepitous (sp?). It is something that can happen when they use carbon dioxide to inflate the areas they need to work in. Occasionally, and I guess I was one of the lucky ones, your body cannot handle all of the gas, and your diaphragm pushes it up into your shoulders and neck. It feels like you have pop rocks in your skin, and they had to heavily sedate me to let the pain pass. The gas works itself out of your tissue, but it was so much more painful than any other part of the surgery. My recovery nurse told me that it happens to more women than men. I am still a little stiff from it in my neck, but not in pain anymore. Oh, and the crepitous makes you very nauseous, too. It was no fun! But it is a gas thing, not necessarily and achalasia thing. Just tell your nurses when you are in pain. They had me on morphine and oxy in recovery so I could sleep through the pain.

I also had a hiatal hernia, which my doc said he had never seen in someone with A, but he fixed that too. My surgery was 4 1/2 hours long!!!

Eating now, or rather, sipping, is wonderful!!! No gulping to force things down!!!! No stuck feeling. I will keep you up to date on my progress. What I am really looking forward to is going out to dinner with my boyfriend, and being able to eat normally, without food getting stuck, or me having to make awful gulping noises to force things down. I will be like a normal person again!!!

Keep in touch!

jes

New to group> > > Just found out what I have, already had all testing, they want to do> surgery..Really, really scared. I would love to talk to others.. I> have to have open cut..told mto expect hard time.. please write> back..> > > > > ----------------------------------------------------------------------------> ---->

[Guest guest]

Oh, I will. Feeling better today than I was yesterday. Less groggy, and my breathing is easier. I am so looking forward to being able to eat real food, and not have it get stuck, or show up in my throat a few hours after eating. It all gets better from here!!!

jes

-----Original Message-----From: Fitzgerald [mailto:efitzgar@...]Sent: Tuesday, January 27, 2004 2:42 PMachalasia Subject: Re: New to group

Jes,

Your positive outlook after surgery will be a great help to others, it would indeed be helpful to keep us updated on your progress.

F

RE: New to group

Hello. I just got home from the hospital about an hour ago--I had a Heller myotomy yesterday. It went perfectly. I am still only on clear liquids, but things are going down. I had my surgery laproscopically, and I am amazed at how little pain I am in. I only had to stay for one night, and I was up and walking around less than 8 hours after getting out of surgery. I have to stay home from work for two weeks, and be on a liquid diet for a week, then only soft foods next week. But I already feel so much better. Before the surgery, I could not even drink a small sip of water without feeling it get stuck ....already, my life has improved, and it will only get better and easier from here. You are in good, supportive company in this group. And if you would like, I can keep you up to date on my progress. Maybe it will help ease some of your anxiety. And just so you know, I was incredibly anxious before my surgery. It was not nearly as bad as I was thinking it would be. Just think of how much your life will improve after surgery!

hang in there,

jes,

Portland, Maine

-----Original Message-----From: arabiankay [mailto:arabiankay@...]Sent: Friday, January 23, 2004 5:11 PMachalasia Subject: New to groupJust found out what I have, already had all testing, they want to do surgery..Really, really scared. I would love to talk to others.. I have to have open cut..told mto expect hard time.. please write back..

[Guest guest]

> From: " qdmjc " <anmcarter@...>

>

.. . . snip . . .

> monistat. I have had two surgeries for nasal polyps in two years and

Samterites' polyps grow back more quickly than others' do.

> now am using rhinocort- the only nasal spray that doesn't really

> bother me, and singulair which has helped alot. Although most of my

> symptoms are fairly under control I would like more info. on

> desensitization and salicylate free diets I have not tried these yet!

Both subjects have a lot of info in the FILES section, as well as a wealth

of info in the archived postings.

> Thanks for being there!

Welcome to the group.

> M

Most of us here use our real names.

>

regards,

Ken West

[Guest guest]

Dear M,

I am allergic to Monistat also! You are the first person I heard of who is

allergic too. I got blisters all over my feet and hands from it - it took

a while to figure that out! It didn't make any sense. Welcome to our

group! I sent an e-mail recently to the group that you may find helpful.

new to group

<< File: ATT00003.htm; charset = ISO-8859-1 >>

[Guest guest]

I'm in the allergic to augmentin camp. As well as most skin

creams...I can't speak to the specific things you've listed. Then

again, I'm allergic to everything. Because what you really need on

top of the Samter's is to be allergic to everything.

[Guest guest]

Theresa, Thanks for your response, I am in awe of the knowledge I have found here after so much time with doctors who offered so little.

RE: new to group

Dear M,I am allergic to Monistat also! You are the first person I heard of who is allergic too. I got blisters all over my feet and hands from it - it took a while to figure that out! It didn't make any sense. Welcome to our group! I sent an e-mail recently to the group that you may find helpful. -----Original Message-----From: qdmjc [sMTP:anmcarter@...]Sent: Monday, February 23, 2004 7:37 AM samters Subject: new to group<< File: ATT00003.htm; charset = ISO-8859-1 >>