New to the group

[Guest guest]

hi kathy,

Non-narcotic. Arnica.here;s the web site-naturopatch.com.They have patches for

pain,stress.sleep etc.All natural.

KGAVI@... wrote: WHAT ARE ANICA PATCHES? ARE THEY A NARCOTIC PATCH

OR NON-NARCOTIC?

THANKS FOR THE INFO.....THAT IS WHY I LOVE THIS GROUP....YOU CAN ALWAYS

LEARN SOMETHING NEW!!!

KATHY

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & NCID=aolfod00030000000002)

[Guest guest]

THANKS SO MUCH, DENISE!!

GENTLE HUGS AND HAVE A GREAT WEEKEND!

KATHY

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & NCID=aolfod00030000000002)

[Guest guest]

HEY DENISE!

YES...I HAVE MY STIM FROM ANS. I WILL NEVER DO ANYTHING FROM MEDTRONIC

AGAIN....AS I FEEL THEY LIED TO ME AND MY DR..CONSTANTLY. I HAD A PUMP FROM

THEM

AND IT MALFUNCTIONED SEVERAL TIMES CAUSING MANY PROBLEMS IN ADDITION TO MY

PAIN. THEY CLAIMED THESE THINGS " NEVER " HAPPENED TO ANY OTHER CUSTOMERS AND

THEY CANNOT EXPLAIN THE REASON. THEN, I FIND OUT FROM TALKING TO OTHER PAIN

PATIENTS, THAT THEY TOO HAVE HAD THE SAME COMPLICATIONS FROM THEIR PUMPS.

ONCE I AM LIED TO, ESPECIALLY WHEN MY HEALTH IS IN QUESTION, I NO LONGER TRUST

THAT PERSON OR COMPANY.

I AM VERY HAPPY WITH ANS FOR THE STIM. I AM HAVING A PROBLEM WITH MINE

RIGHT NOW...BUT THEY ARE COMING OUT TO MY DR ON MONDAY TO TRY TO PROGRAM IT

AGAIN

FOR ME...THE BATTERY MAY NEED A CHANGE AS IT HAS BEEN OVER 6 YEARS NOW. I

HAVE HAD RSD NOW FOR 25 YEARS, AND UNFORTUNATLEY, THE STIM OR MEDS HAVE NOT

HELPED ME YET. I DID HAVE A STIM PLACED IN 14 YEARS AGO WHICH MADE THE WORLD OF

DIFFERENCE, BUT THIS ONE IS NOT DOING THE SAME AS MY RSD IS MUCH, MUCH WORSE

IN THIS AREA AS IT IS IN MY LEFT HAND PAIN LEVEL IS 9.

I AM SO GLAD TO HEAR THAT THE STIM IS HELPING YOU AND THAT THE LYRICA IS

HELPING YOU ALSO!! YOUR PAIN LEVEL PROBABLY SHOT UP SO BADLY FOR YOU SINCE YOU

HAD GREAT PAIN CONTROL WITH THE TRIAL STIM...AND THEN IT WAS GONE...AND THE

PAIN CAME FLYING BACK ON YOU. SORRY THAT HAPPENED

TAKE CARE

KATHY

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & NCID=aolfod00030000000002)

[Guest guest]

Hi Dave and fellow pain sufferers,

I am new to this group as well. I have periperal neuropathy from head

to toe but it is the worse from my waist down, feet being the

absolute worse. I also have rheumatoid arthritis, fibromyalgia and

migraines but they pale in comparison to the PN.

I had my SCS trial on the 22nd of May. I was very pleased with the

results. It was almost 100% successful and what a godsend it was for

those 4 days. I don't know if anyone else has experienced this but

after the trial was over and the leads had been taken out I

experienced terrible pain, like a 8-9 pain scale for a week after

was. My Dr. increased my Lyrica and that has seemed to help quite a

bit. I am scheduled for my permament SCS the beginning of

August hopefully. It is with ANS and a new smaller battery that is

rechargeable should be coming out from anytime between now and the

beginning of September. I am waiting for this new one because as I

said above it is rechargeable and has been FDA approved for 10 year.

Also the smaller size makes it worth the wait. I missed the June

schedule for the permament(but I wouldn't have been able to have the

new one put in so I wouldn't have scheduled it for that time anyway)

and then July just wouldn't work because

of family coming that only come once a year and I don't want to feel

terrible recovering from the surgery while they are there so Aug.

seems to work best and we're hoping that the new one will be out. I

think the benefits outweigh the negatives which is of course dealing

with more pain but I've somehow made it so far.

Does anyone out there have the SCS made by ANS? My pain management

Dr. said he's worked with 2 companies but feels the product and the

customer service are better with the ANS Company. I know everyone

has there own opinions on companies and product.

Mike, thanks for starting this group it's wonderful having this

source of information and friendship available. Others out there, be

it family or friends just can't comprehend what it's like to live

with pain 24/7 no matter how well meaning they are.

Hope you all have a wonderful Sunday. ~ from NH

>

> Hi All.

> My name is Dave and I am new to your group.

> I have chronic pain due to MS and Peripheral Neuropathy.

> My trial period did not work for my lower legs and feet, but it

> eased my arms and hands pain by about 75%. As many of you know,

any

> help is a blessing. I had the permanent stimulator surgery about a

> month ago, and along with oxycontin and methadone I am overall

> pleased with the result.

>

> I hoped some of you with more experience could help with a few

> questions.

>

> I have the Medtronic with 2 leads and an implanted battery.

> (I see from some posts there is a new rechargeable unit that I

> missed buy a couple months)

> I power off to sleep because I'm afraid of eating up the battery.

> Any ideas on how long the battery will last?

>

> Also, certain ways I move my neck I still get power surge. Does

> that ever go away?

>

> I was so glad to see there was a group for those of us with a SCS.

>

> Thanks, Dave

>

[Guest guest]

Hi Dave,, welcome to the group.. hope you find info here helpful..

I had my scs implanted in feb.. I have the regargeable battery in my

right side.. I have to charge it every 3-4 weeks.. and it take a

couple hrs most of the time to get a full charge..medtronics said

the battery should last 5-6 yrs..depending on how often you charge,,

if you let the battery get to low it will damage it,, so becareful

on that.. on mine ,so far I have 3 programs, 1 for right leg 1 for

left leg and 1 for my lower back.

hope you the best of luck with yours,, mine is a God send,, I love

it... hope everyone had a wonderful weekend,,

soft hugs to all

>

> >

> > Hi All.

> > My name is Dave and I am new to your group.

> > I have chronic pain due to MS and Peripheral Neuropathy.

> > My trial period did not work for my lower legs and feet, but it

> > eased my arms and hands pain by about 75%. As many of you know,

> any

> > help is a blessing. I had the permanent stimulator surgery

about a

> > month ago, and along with oxycontin and methadone I am overall

> > pleased with the result.

> >

> > I hoped some of you with more experience could help with a few

> > questions.

> >

> > I have the Medtronic with 2 leads and an implanted battery.

> > (I see from some posts there is a new rechargeable unit that I

> > missed buy a couple months)

> > I power off to sleep because I'm afraid of eating up the

battery.

> > Any ideas on how long the battery will last?

> >

> > Also, certain ways I move my neck I still get power surge. Does

> > that ever go away?

> >

> > I was so glad to see there was a group for those of us with a

SCS.

> >

> > Thanks, Dave

> >

>

[Guest guest]

I have not suffered from and infections before RSD but after my implant in Feb

2006, they didn't get all the old implant out and it caused infection to get

around my one of my incisions to last for two years. It finally took an

infectious disease doc to take a bone scan and another test to find the part the

surgeon left in. This infection caused my to have two extra surgeries last

year. The new implant got infected from the piece left in. I am just now

getting over another surgery and the infection. My surgeon acted like it wasn't

his fault that the piece was left in there. a

New to the group

Hello,

My name is ,I also suffer with RSD,for almost 8 yrs. now. I would like to

know if anyone has suffered with infections,before having the SCS implant?

Thanks

[Guest guest]

Ray,

It is not my experience to get new Freedoms every 6 months. The processors I

received in 05 were considered earlier series ( and they tended to crack

and they reacted similar to yours (no sound but beeps). They were replaced

with later series (H) and I have had no problems thus far.

[Guest guest]

Rae,

 

I noticed you mentioned HERF, are you in the Houston area?  I work in Beaumont.

 

 

Judy

 

[Guest guest]

Yes, I'm in NW Houston.

Rae

From: [mailto: ] On Behalf Of

Judy Jeffcoat

Sent: Wednesday, June 18, 2008 6:57 AM

Subject: Re: New to the group

Rae,

I noticed you mentioned HERF, are you in the Houston area? I work in

Beaumont.

Judy

[Guest guest]

I don't participate much on here and was excited to see someone " local " !  Do you

know of any CI support groups in TX? 

From: Rae Callaway <tallcarabians@...>

Subject: RE: New to the group

Date: Wednesday, June 18, 2008, 9:27 AM

Yes, I'm in NW Houston.

Rae

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Judy Jeffcoat

Sent: Wednesday, June 18, 2008 6:57 AM

groups (DOT) com

Subject: Re: New to the group

Rae,

I noticed you mentioned HERF, are you in the Houston area? I work in

Beaumont.

Judy

[Guest guest]

I got these from my brother (manager of Hearing Systems Inc):

Good links to start.

national resource - wonderful group that has been very instrumental in

securing our " RIGHTS "

http://www.hearingloss.org/

ci resources

http://deafness.about.com/b/2006/02/07/cochlear-implant-discussion.htm

houston resource (majority members have CI)

HLA_Houston_Chapter/

Texas group most have CI's

txhll/

http://www.listen-up.org/ci/ci-support.htm

Rae

From: [mailto: ] On Behalf Of

Judy Jeffcoat

Sent: Wednesday, June 18, 2008 10:35 AM

Subject: RE: New to the group

I don't participate much on here and was excited to see someone " local " ! Do

you know of any CI support groups in TX?

From: Rae Callaway <tallcarabians@...

<mailto:tallcarabians%40sbcglobal.net> >

Subject: RE: New to the group

<mailto:%40>

Date: Wednesday, June 18, 2008, 9:27 AM

Yes, I'm in NW Houston.

Rae

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Judy Jeffcoat

Sent: Wednesday, June 18, 2008 6:57 AM

groups (DOT) com

Subject: Re: New to the group

Rae,

I noticed you mentioned HERF, are you in the Houston area? I work in

Beaumont.

Judy

[Guest guest]

Hi ,

I am so sorry that you are having so much trouble. Could you tell us a little

more? Like how bad your curve was before surgery, how much improvement you got

from surgery, the problems that led you to have surgery in the first place and

the level(s) of your fusion. I know that is actually a lot more to ask, but

without knowing what you mean by " worse off than before " it is hard for those

who have had revision surgeries to relate their experiences if we don't know

what kind of problems you are experiencing and how you were doing before you

started having problems. Personally, I had surgery 12 years ago, had my rods cut

down because of problems 2 years after that and had to suddenly stop working in

2002, after breaking a rod and the fusion, plus a few other problems. I also

have been on pain meds since that incident and could not have surgery when I

felt desperate to have it because of a lack of insurance.

What is your level of functioning? Are you able to work? If that isn't possible,

have you considered, or tried, to get disability? At least with that and a

supplement you could probably have the surgery you might need. Have you been

evaluated since you have started having trouble? How long ago did you start

having problems? There are several people who have had surgery in this group who

have done well and are happy with the results. Maybe it's just my thinking, but

it seems to me that there are a lot of people who have had surgery for flatback

who are happy with their surgery results to fix that problem. Again, maybe

because it is the problem that I have and I watch the postings more closely, but

the people who have had to have the fusions extended into the sacrum because of

things breaking and/or having DDD seem to me to not have as across the board

good results as often as the flatback group. Does anyone else have ideas about

the two groups and the

results? I know I am paranoid about the extension surgery and pounce on any

note about that. I have a lot of the letters in a folder of the paper kind and I

need to pull that out and read up on old postings. (I noticed a note a while

back where someone had asked if anyone else had noticed that they didn't seem to

get complete results when putting a word in the search engine for the archived

letters. I have had that happen as well, but it has been a good while back. I

need to try that again). But , I know I have asked a ton of questions. I

hope you know it's because I'm interested and concerned about a scoliosis

friend's problem and can understand how alone and desperate you must feel if

this has been going on for a long time. I hope you can get some help here, even

if it's just knowing that others have similar problems and fears. I hope we hear

from you again soon.

Blessings, Bea

From: tiffanynharris <tiffanynharris@...>

Subject: new to the group

Scoliosis Treatment

Date: Monday, June 23, 2008, 9:21 AM

i had scoliosis surgery about 10 years ago. i'm worse off now than

i

was then, i can barely hold myself up anymore. i don't have insurance

now, but i though i would join this group to find out if there is any

new advancements that might give me hope of one day getting better.

thank you

[Guest guest]

what was your curve(s) before and what rods did they use?  What was the outcome

of the surgery and what exactly is happened now?  Do you have other medical

conditions now and did you have others before the surgery?

From: tiffanynharris <tiffanynharris@...>

Subject: new to the group

Scoliosis Treatment

Date: Monday, June 23, 2008, 9:21 AM

i had scoliosis surgery about 10 years ago. i'm worse off now than i

was then, i can barely hold myself up anymore. i don't have insurance

now, but i though i would join this group to find out if there is any

new advancements that might give me hope of one day getting better.

thank you

[Guest guest]

Hi, I had surgery T2 to L5 8 years ago.  I have terrible pain in my left groin

and around the hip because my gait is off (I also have CMT).  I'm just wondering

if maybe you have an awkward gait too.  You may want to contact me personally on

my address.  (Just add @.)  Are you still walking without aids?

Fyfer

From: tiffanynharris <tiffanynharris@...>

Subject: new to the group

Scoliosis Treatment

Date: Monday, June 23, 2008, 9:21 AM

i had scoliosis surgery about 10 years ago. i'm worse off now than i

was then, i can barely hold myself up anymore. i don't have insurance

now, but i though i would join this group to find out if there is any

new advancements that might give me hope of one day getting better.

thank you

[Guest guest]

Hello everyone,Just found this group and I am trying to determine if I have flat back.I had scoliosis surgery with the implamintation of a Harrington rod when I was 15 years old. I am now 47. I have chronic lower back pain that seems to change from side to side. It seems as if the muscles our sore very deep inside. Sleeping on my back, running the sweeper, and sitting bent forward at my desk really bother me. I do tend to lean forward and when I get a glimpse of myself sometimes I cannot believe how hunged(sp?) forward I am. I have had an MRI which showed herniated disks and some artheritis. When to pain management for steroid injections and radifrequency treatment which did nothing.Any thoughts out there?ThanksJen

____________________________________________________________

Sweepstakes!!! Enter for your chance to WIN one of hundreds of daily prizes.

[Guest guest]

Jo--- you poor thing! what an ordeal you will find this group very

supportive just the fact other people out there in similar does help!

i am in uk and dont know anyone with this condition i had my op 8

weeks ago now i had years of ear problems a lot to do with eustachian

tube problems which led to the ctoma growth in left ear which seemed

to grow a lot after having my babies now age 4 and 1. i lost 1 bone in

there so do have problems with the hearing go back in a month to

assess the whole thing again and more hoovering i call it to clean out

debris etc. of course in uk we have the NHS with free medical care so

very lucky i hope you are managing the bills?maybe you will get a

titanium implant for your hearing?good luck with it all god bless

xxxcaroline

In cholesteatoma , " tink442002 " <tink442002@...> wrote:

>

> Hi all,

> Wow, I had no idea there was a group like this on ...YEAH!!

> I have had a terrible time with my c-tomas. I was diagnosed in

> October with a ctoma in my left ear. At the time, it was very

> infected and had already caused facial paralysis on that side of my

> face. Needless to say I saw the dr one week, had ct's and mri, and

> then had surgery the next week. While diagnosing the ctoma in my

> left ear, we found out that I had one in my right ear also and that

> it had already eaten away the bone to the brain and matter was

> hanging out of it. Well, the first surgery wasn't too bad. I was

> under for 3 hours and they were able to save one hearing bone. My

> paralysis is completely gone also. In March, I had surgery on my

> right ear. Unfortunetly, it was a disaster. I had to have a

> craniotomy. Once the doctor got in there he found that the ctoma had

> destroyed my entire ear. There was nothing left to save. I was in

> the hospital for a week with the prognosis that I would never hear

> again out of my right ear. Well, long story short by the Grace of

> God and the power of prayer I do have some hearing in my right ear.

> It is all thru vibrations but nonetheless I can hear. Of course, my

> hearing in my left ear is awful for now. I should be having my

> second surgery on it in September to replace the bones. I have to

> say that I'm very very nervous about this. After the disaster of the

> surgery in my right ear I'm afraid to be too optimistic. I am

> definetly ready to be able to hear again as is my family. Everyone

> has been very supportive of me thru this ordeal but I know how

> aggrivating it is especially to my kids for them to have to yell at

> me all the time. And the final kicker in all of this situation is

> the fact that I have no insurance. Needless to say this has been

> another huge worry for me on top of everything else. However, I know

> that things will be okay. God seems to be in control of this roller

> coaster ride so I'm just going to let him lead and see what happens.

> So, that's my story!!! If anybody has any advice about the next

> surgery and what to expect from now on out let me know!!!! Thanks

> for any advice in advance!!!! JO

>

[Guest guest]

Hi Jo- My goodness, sounds like you've been having a heck of a time.

Has your doctor talked about hearing aids once you have the ears

disease free and healed?

Just try to be positive, the reconstruction surgery in september

should give you more hearing. And maybe it won't be as painful as a

craniotomy, that's a positive thing.

Good luck, Christa

>

> Hi all,

> Wow, I had no idea there was a group like this on ...YEAH!!

> I have had a terrible time with my c-tomas. I was diagnosed in

> October with a ctoma in my left ear. At the time, it was very

> infected and had already caused facial paralysis on that side of my

> face. Needless to say I saw the dr one week, had ct's and mri, and

> then had surgery the next week. While diagnosing the ctoma in my

> left ear, we found out that I had one in my right ear also and that

> it had already eaten away the bone to the brain and matter was

> hanging out of it. Well, the first surgery wasn't too bad. I was

> under for 3 hours and they were able to save one hearing bone. My

> paralysis is completely gone also. In March, I had surgery on my

> right ear. Unfortunetly, it was a disaster. I had to have a

> craniotomy. Once the doctor got in there he found that the ctoma

had

> destroyed my entire ear. There was nothing left to save. I was in

> the hospital for a week with the prognosis that I would never hear

> again out of my right ear. Well, long story short by the Grace of

> God and the power of prayer I do have some hearing in my right

ear.

> It is all thru vibrations but nonetheless I can hear. Of course,

my

> hearing in my left ear is awful for now. I should be having my

> second surgery on it in September to replace the bones. I have to

> say that I'm very very nervous about this. After the disaster of

the

> surgery in my right ear I'm afraid to be too optimistic. I am

> definetly ready to be able to hear again as is my family. Everyone

> has been very supportive of me thru this ordeal but I know how

> aggrivating it is especially to my kids for them to have to yell at

> me all the time. And the final kicker in all of this situation is

> the fact that I have no insurance. Needless to say this has been

> another huge worry for me on top of everything else. However, I

know

> that things will be okay. God seems to be in control of this

roller

> coaster ride so I'm just going to let him lead and see what

happens.

> So, that's my story!!! If anybody has any advice about the next

> surgery and what to expect from now on out let me know!!!! Thanks

> for any advice in advance!!!! JO

>

[Guest guest]

Hi ,

Perhaps this database will help you make your choice. Knowing that the

facial nerve is involved, I personally would go with the neurotologist.

You can select a specialty of Neurotology in the database. I understand

that they can clamp some gizmo to your facial nerve now that will warn

them if they're about to do something stupid. Here's the URL:

http://www.entnet.org/

All the best. I see my doctor again next Thursday ... looks like I may

be facing surgery again as well.

Matt

neesyii wrote:

>

> Hi everyone. I'm new to the group but an " old-timer " to c-toma. In

> 1980 I was first diagnosed after repeated visits to a " quack " for

> swimmer's ear in my left ear. Luckily my mother was a nurse and knew

> who to ask to find a better doctor. Had Stage I tympanomastoidectomy

> done in June 1980 and Stage II done the following year. Luckily,

> quite by accident, the doctor found I had a facial nerve anomoly - my

> facial nerve has a very rare split - that may have been damaged by a

> less-experienced, doctor who was not paying attention. Surgeries were

> completed leaving my facial nerve intact - whew. A few follow ups

> later I was released with a clean bill of health. Unfortunately we

> were not told that the c-toma may recur or that we needed to follow up

> regularly. Twenty-eight years later I'm faced with a recurrence in

> the left ear, and possibly a new c-toma forming in the right - ear

> drum is retracted and " suspicious " . After a month getting rid of

> infection in the left ear, doctor was able to see inside my left ear

> and I have another appt scheduled for Monday 7-14 with probable CT

> scan as well. After seeing some other posts here I'm wondering if I

> should request an MRI for the right ear. Left ear is pretty positive

> without MRI. New doctor has copies of all previous post-operative

> reports from the doctor who did the surgery and when he saw the notes

> about the facial nerve he became very nervous. He's afraid the facial

> nerve may be involved in scar tissue and is afraid that the surgery to

> remove the c-toma may damage the nerve if the scar tissue has not

> already started the damage. Normally I'm not one to worry to an

> extent that I envision myself with facial paralysis - but it's

> happening now. the little information I've found on the net leads me

> to believe I need to find a neurotologist instead of an ENT surgeon in

> order to have a greater chance of saving the facial nerve. Has anyone

> had this rare facial nerve split AND dealt with C-Toma. I'm in South

> Carolina so there are some good medical universities/teaching

> hospitals close. I'd even be willing to travel to Duke (my father

> recently had surgery for early stage liver cancer there and is

> completely cancer free thanks to the wonderful surgeon there) or

> Emory. I've had a really hard time finding information out there

> about neurotologists in my area. Since I've lived with significant

> hearing loss since my teen years, I'm not so much worried about that.

> The possible disfigurement as a result of the c-toma removal is what

> worries me. I know the c-toma HAS to be removed, no question there.

>

> Luckily my original doctor was a partner of Dr. Lippy in

> Warren OH - his practice is still going strong and their website shows

> links that I'm going to follow over the weekend to try and get as much

> information as I can about other doctors who have similar training and

> residencies. Hopefully that link might help some of you as well!

> I'll post an update if I find anything useful and after my appt Monday

> afternoon.

>

> Thanks all!

>

>

>

--

[Guest guest]

Thanks!! I can't imagine how you are going thru all of that with 2

little ones. I have twins(boy and girl) who are almost 11 so they

are old enough to understand (kind of) what's happening. We were

lucky to qualify for help with hospital bill. They wrote off almost

all of it. My neurologist gave me a 50% discount so that has

helped. The ear dr is what is the most expensive. No discounts!!!

We are just taking it one day at a time and see what happens. Hope

things go well with your next visit.

> >

> > Hi all,

> > Wow, I had no idea there was a group like this on ...YEAH!!

> > I have had a terrible time with my c-tomas. I was diagnosed in

> > October with a ctoma in my left ear. At the time, it was very

> > infected and had already caused facial paralysis on that side of

my

> > face. Needless to say I saw the dr one week, had ct's and mri,

and

> > then had surgery the next week. While diagnosing the ctoma in my

> > left ear, we found out that I had one in my right ear also and

that

> > it had already eaten away the bone to the brain and matter was

> > hanging out of it. Well, the first surgery wasn't too bad. I

was

> > under for 3 hours and they were able to save one hearing bone.

My

> > paralysis is completely gone also. In March, I had surgery on my

> > right ear. Unfortunetly, it was a disaster. I had to have a

> > craniotomy. Once the doctor got in there he found that the ctoma

had

> > destroyed my entire ear. There was nothing left to save. I was

in

> > the hospital for a week with the prognosis that I would never

hear

> > again out of my right ear. Well, long story short by the Grace

of

> > God and the power of prayer I do have some hearing in my right

ear.

> > It is all thru vibrations but nonetheless I can hear. Of course,

my

> > hearing in my left ear is awful for now. I should be having my

> > second surgery on it in September to replace the bones. I have

to

> > say that I'm very very nervous about this. After the disaster of

the

> > surgery in my right ear I'm afraid to be too optimistic. I am

> > definetly ready to be able to hear again as is my family.

Everyone

> > has been very supportive of me thru this ordeal but I know how

> > aggrivating it is especially to my kids for them to have to yell

at

> > me all the time. And the final kicker in all of this situation

is

> > the fact that I have no insurance. Needless to say this has been

> > another huge worry for me on top of everything else. However, I

know

> > that things will be okay. God seems to be in control of this

roller

> > coaster ride so I'm just going to let him lead and see what

happens.

> > So, that's my story!!! If anybody has any advice about the next

> > surgery and what to expect from now on out let me know!!!!

Thanks

> > for any advice in advance!!!! JO

> >

>

[Guest guest]

Hi Christa,

Thanks for the words of encouragement. We haven't talked about

hearing aids yet but at this point I'm ready!! Yes, my last surgery

was the most traumatic thing I have been thru so far. I was sooo

dizzy for the first few days that I couldn't hardly even open my

eyes. It got better but I do still have some days where I just feel

off. I guess that is what I'm most afraid of about the next

surgery. It's the horrible dizzy feeling that I don't want to have

to go thru again...LOL. Thanks for the positive thinking!!!

> >

> > Hi all,

> > Wow, I had no idea there was a group like this on ...YEAH!!

> > I have had a terrible time with my c-tomas. I was diagnosed in

> > October with a ctoma in my left ear. At the time, it was very

> > infected and had already caused facial paralysis on that side of

my

> > face. Needless to say I saw the dr one week, had ct's and mri,

and

> > then had surgery the next week. While diagnosing the ctoma in my

> > left ear, we found out that I had one in my right ear also and

that

> > it had already eaten away the bone to the brain and matter was

> > hanging out of it. Well, the first surgery wasn't too bad. I

was

> > under for 3 hours and they were able to save one hearing bone.

My

> > paralysis is completely gone also. In March, I had surgery on my

> > right ear. Unfortunetly, it was a disaster. I had to have a

> > craniotomy. Once the doctor got in there he found that the ctoma

> had

> > destroyed my entire ear. There was nothing left to save. I was

in

> > the hospital for a week with the prognosis that I would never

hear

> > again out of my right ear. Well, long story short by the Grace

of

> > God and the power of prayer I do have some hearing in my right

> ear.

> > It is all thru vibrations but nonetheless I can hear. Of course,

> my

> > hearing in my left ear is awful for now. I should be having my

> > second surgery on it in September to replace the bones. I have

to

> > say that I'm very very nervous about this. After the disaster of

> the

> > surgery in my right ear I'm afraid to be too optimistic. I am

> > definetly ready to be able to hear again as is my family.

Everyone

> > has been very supportive of me thru this ordeal but I know how

> > aggrivating it is especially to my kids for them to have to yell

at

> > me all the time. And the final kicker in all of this situation

is

> > the fact that I have no insurance. Needless to say this has been

> > another huge worry for me on top of everything else. However, I

> know

> > that things will be okay. God seems to be in control of this

> roller

> > coaster ride so I'm just going to let him lead and see what

> happens.

> > So, that's my story!!! If anybody has any advice about the next

> > surgery and what to expect from now on out let me know!!!!

Thanks

> > for any advice in advance!!!! JO

> >

>

[Guest guest]

Hi Debbie,

I'm new to the group also!! I would say time is the best advice for

a successful recovery!! When I had my first ctoma removed it wasn't

very painful for me but when I had the second one removed from the

other ear..ewww..that was painful. As for your hearing, I don't know.

Probably everybody is different. I haven't had a reconstruction

surgery yet but I do know that for me my hearing did seem to improve

some once all the packing was finally out. I hope everything works out

for you!!! Just try and stay positive. It really does help!!

chin up

Jo

>

> Hi everyone! My name is Debbie and I just joined. I am 23 - about

> to graduate college - this summer I found out I had cholesteatoma

> after years of ear infections - and just had surgery 2 weeks ago and

> am still recovering. My surgery included the removal of cholesteatoma

> and reconstruction of the bones. Recovery was very painful - I just

> started feeling like myself a couple of days ago.

>

> If anyone has any advice on what to do or not to do for a successful

> recovery, please feel free to give it to me. If you've had the same

> surgery, do you know if your hearing is better after all of the

> packing is gone? I am glad their is a support group out there for

> this - it's nice to be able to talk to people who've gone through the

> same thing!

>

[Guest guest]

Hi ,

Welcome to the group, may it help you as it did me. I am one day post

op and my surgeon's specialty is Otology and Neurotology, Skull Base

Surgery, maybe these terms will help locate a surgeon. He told me early

on that he uses a facial nerve monitor during surgery that warns him if

he is anywhere near the facial nerve. He said he would cancel the

surgery if it was not working properly on the day of surgery. He said

he has never had facial nerve damage in one of his patients. This

really helped me relax and not worry....we have enough other things to

worry about as is!

I saw 4 surgeons (because I was getting different opinions) before I

decided to go with the second one I saw and I know it helped me feel

assured I had made the right decision. Be sure to ask how many of these

operations they have done and their outcome...re-occurance rate, other

side effects you are worried about. Also, if it is a teaching hospital

(mine was) ask him if he will agree to do the operation himself - not a

resident and be sure to specify this on the consent form too. Mine was

not pleased but was agreeable to it. It is your legal right to make

this request and I feel necessary for this level of operation.

Be sure to look at their facial response when you ask these questions.

If they avoid eye contact, give vagues answers or just national

statistics, you may do well to look further. I usually asked my medical

questions first and then said something like....and of course I have to

ask you............... You need to know you are in the best hands

reasonable possible for you and the good surgeons are proud to give you

their statistics.

I hope my thoughts help you relax and heal well.

>

> Hi everyone. I'm new to the group but an " old-timer " to c-toma. In

> 1980 I was first diagnosed after repeated visits to a " quack " for

> swimmer's ear in my left ear. Luckily my mother was a nurse and knew

> who to ask to find a better doctor. Had Stage I tympanomastoidectomy

> done in June 1980 and Stage II done the following year. Luckily,

> quite by accident, the doctor found I had a facial nerve anomoly - my

> facial nerve has a very rare split - that may have been damaged by a

> less-experienced, doctor who was not paying attention. Surgeries were

> completed leaving my facial nerve intact - whew. A few follow ups

> later I was released with a clean bill of health. Unfortunately we

> were not told that the c-toma may recur or that we needed to follow up

> regularly. Twenty-eight years later I'm faced with a recurrence in

> the left ear, and possibly a new c-toma forming in the right - ear

> drum is retracted and " suspicious " . After a month getting rid of

> infection in the left ear, doctor was able to see inside my left ear

> and I have another appt scheduled for Monday 7-14 with probable CT

> scan as well. After seeing some other posts here I'm wondering if I

> should request an MRI for the right ear. Left ear is pretty positive

> without MRI. New doctor has copies of all previous post-operative

> reports from the doctor who did the surgery and when he saw the notes

> about the facial nerve he became very nervous. He's afraid the facial

> nerve may be involved in scar tissue and is afraid that the surgery to

> remove the c-toma may damage the nerve if the scar tissue has not

> already started the damage. Normally I'm not one to worry to an

> extent that I envision myself with facial paralysis - but it's

> happening now. the little information I've found on the net leads me

> to believe I need to find a neurotologist instead of an ENT surgeon in

> order to have a greater chance of saving the facial nerve. Has anyone

> had this rare facial nerve split AND dealt with C-Toma. I'm in South

> Carolina so there are some good medical universities/teaching

> hospitals close. I'd even be willing to travel to Duke (my father

> recently had surgery for early stage liver cancer there and is

> completely cancer free thanks to the wonderful surgeon there) or

> Emory. I've had a really hard time finding information out there

> about neurotologists in my area. Since I've lived with significant

> hearing loss since my teen years, I'm not so much worried about that.

> The possible disfigurement as a result of the c-toma removal is what

> worries me. I know the c-toma HAS to be removed, no question there.

>

> Luckily my original doctor was a partner of Dr. Lippy in

> Warren OH - his practice is still going strong and their website shows

> links that I'm going to follow over the weekend to try and get as much

> information as I can about other doctors who have similar training and

> residencies. Hopefully that link might help some of you as well!

> I'll post an update if I find anything useful and after my appt Monday

> afternoon.

>

> Thanks all!

>

>

[Guest guest]

Welcome, to you and your wife. Best wishes. You have actually joined a great family of friends here. The docs and staff will continue to serve you medical needs for years to come. C Tampa

> > From: richardnpowell@...> Date: Wed, 16 Jul 2008 17:24:24 +0000> Subject: New to the group> > Good morning from Mexicali. I'm here with my wife this week and she > had the gastric sleeve procedure. She'll be back online soon.> > I had the lapband in TX back in January 2007. I lost weight, had a > couple of fills and then put my weight back on over Thanksgiving and > Christmas. > > I've had a couple of fills in 2008 and the weight loss is going again.> > I just wanted to share my experience in the US with what I see here > in Mexicali.> > First, the staff here is very attentive to making your stay as > comfortable as possible. For example when you push the call nurse > button someone comes to your room generally within a minute or 2. If > you then ask for something they take care of it immediately. Back in > the US you could be hours waiting for a nurse to show up to your room.> > Second, this is the cleanest hospital facility I've ever seen. I've > not seen a lot of hospitals in the states, but they are very > sensitive here to keeping the place clean and tidy.> > Lastly, once you've been here you kind of feel like you've joined a > new family. This is not a factory where they push you in and out for > the sake of money. I suspect in the US this is the case due to the > insurance companies, but for whatever reason this is much better.> > Thanks for letting me become part of the family.> > > > > ------------------------------------> >

[Guest guest]

Welcome and I couldn't agree more with your assessment!!!!!

>

> Good morning from Mexicali. I'm here with my wife this week and she

> had the gastric sleeve procedure. She'll be back online soon.

>

> I had the lapband in TX back in January 2007. I lost weight, had a

> couple of fills and then put my weight back on over Thanksgiving and

> Christmas.

>

> I've had a couple of fills in 2008 and the weight loss is going again.

>

> I just wanted to share my experience in the US with what I see here

> in Mexicali.

>

> First, the staff here is very attentive to making your stay as

> comfortable as possible. For example when you push the call nurse

> button someone comes to your room generally within a minute or 2. If

> you then ask for something they take care of it immediately. Back in

> the US you could be hours waiting for a nurse to show up to your room.

>

> Second, this is the cleanest hospital facility I've ever seen. I've

> not seen a lot of hospitals in the states, but they are very

> sensitive here to keeping the place clean and tidy.

>

> Lastly, once you've been here you kind of feel like you've joined a

> new family. This is not a factory where they push you in and out for

> the sake of money. I suspect in the US this is the case due to the

> insurance companies, but for whatever reason this is much better.

>

> Thanks for letting me become part of the family.

>

>

>

[Guest guest]

Hi,

I was just wondering about your MRI? I was told I couldnt have one as

metal implants of any kind would have fairly violent reaction with

the machine? I had to have a bone scan instead (to check for

osteoarthritis)

Please dont think that I dont believe you. I am just curious as to

the complete difference in procedure and if its a regional thing.

thank you

>

> Hello everyone,

>

> Just found this group and I am trying to determine if I have flat

back.

> I had scoliosis surgery with the implamintation of a Harrington rod

> when I was 15 years old. I am now 47. I have chronic lower back

pain

> that seems to change from side to side. It seems as if the muscles

our

> sore very deep inside. Sleeping on my back, running the sweeper,

and

> sitting bent forward at my desk really bother me. I do tend to lean

> forward and when I get a glimpse of myself sometimes I cannot

believe

> how hunged

> (sp?) forward I am.

>

> I have had an MRI which showed herniated disks and some artheritis.

> When to pain management for steroid injections and radifrequency

> treatment which did nothing.

>

> Any thoughts out there?

>

> Thanks

> Jen

>