Back again

[Guest guest]

> I have had the MELISA test, but the results are not back yet. It is as a

rubbish, insensitive test but it is the best available. But it is still

rubbish. My doc (top bloke, on the list as Armour-literate) wanted to get it

done, in case it did come back positive, because that is unarguable, but fully

agrees with me that a negative result doesn't mean much.

>

> Having said that, I feel considerably better after just two days of taking it.

I don't feel that I'm dying, which for me is a huge improvement. I really,

really hope this works.

>

> Rosiebint

>

Hi Rosiebint

I don't know about the MELISA being a rubbish test for borrelia cos it did work

for me to detect heavy metal toxicity and I do know of others who got positive

results for borrelia from the MELISA. The lab in Germany is highly thought of

by some of the good docs in Europe like Dr Kenny De Meirleir a ME specialist.

I have to have a pretty complicated range of meds to deal with my endocrine

problems but can feel really well when I get it right. Problem is that things

like herbs or detox regimes can throw me off balance quite quickly so I have

come to the conclusion I have got to give up trying them and stick to my basic

medication regime.

The regime is - if I wake around 5 am then 2.5mg hydrocortisone to get me off to

sleep again, on waking 2.5mg Prednisolone plus 1 1/2 grains Armour and 25 mcg

thyroxine plus 0.75 mcg Fludrocortisone. This lasts me all morning and then at

lunchtime another 2.5mg Pred with 12.5mcg T3.

Also I use one pump Estrogel am.

The above now gives me good consistent energy after about 9am and it has been

lasting well past 11 at night. I sleep better than I have in years and it was

the Fludro that made the biggest difference here. I kept having a racing heart

at night and also other times in the day but this was due to a severe lack of

sodium because of my adrenal issues I waste salt. I also take lots of potassium

throughout the day and magnesium too.

I have felt well enough to take on running 2 Committees locally one for

Fibromyalgia sufferers and the other for Home-Start. If I wasn't on my

medication I would probably be dead but its been a very long haul to get to

where I am now and things can still go wrong when I get something like a throat

infection.

I hope you get soon feel a lot better, its a horrible illness.

Bw

Pam

[Guest guest]

I am so sorry to hear about the upcoming surgery. That is never fun to hear. This group is VERY helpful because we can all understand so it is important to vent your frustrations and ask questions. We get it. I have had eight cholesteatoma

surgeries in my life, over a 10 year period about 14 years ago. I actually have a blog about it if you’d like to read more

lisaceardisease@...

At the very least, maybe it will make you feel better that you are only on surgery number two!

J

Good luck to you and please keep us posted.

IDQ Companies

[Guest guest]

Joanne,

Sorry to hear you have more cholesteatoma. You have only had one cholesteatoma surgery? Did you not have a second look surgery? Make sure you have a top notch doctor and you will be in great hands. My doctor felt very confident on my first surgery that everything was removed but still wanted to do the 2nd look surgery to rebuild my hearing - I am glad he did because there was a little hidden cholesteatoma left that hadn't been removed the first time. If it is not all removed it will continue growing. My second surgery was easier than the first. I wish you the best of luck . . . hang in there Sept. will be herer before you know it.

From: joannelpo121 <jtpeterson@...>cholesteatoma Sent: Wed, July 7, 2010 4:35:20 PMSubject: Back again

Hi everyone. Its been 2.5 years since I have been on this site. I had my C-Toma surgery in Nov of 2007. I have struggled with vertigo since then. I have had tubes put in both ears due to eustation tube dysfunction. Unexpectedly, my vertigo went away as soon as the tubes were put in. I would get vertigo again when they fell out. Consequently, I have had a surgery every 10 months to put the tubes in and have a "look see" to keep on top of any c-toma regrowth. I felt very optmistic as 10 months ago it was still clear. Unfortunately in my lst tube surgury a few weeks ago they found the c-toma has grown back, and looks worse than the first time. I am scheduled for another c-toma surgery Sept.14. I am soooo disappointed and nervous. Probably because I know what to expect this time and last recovery was quite difficult. I blocked out so much of what I learned and went through as I believed dI would be one of the lucky one's not having to deal with this a

second time. I go see my neuosurgeon next week for a pre-op consult, I'm not sure what proceedure they will go with this time. Last time was behind the ear through the skull. It was a 6 hour surgery and they did reconstruction of the incus and eardrum during the surgery. This time I'm not sure what they will do. I'm grateful to have a place to go with my fears and frustrations with all of you who know how it feels. I am open to any new ideas out there in the past couple years with regards to showering ideas and post surgery care.All the best,Joanne

[Guest guest]

Thanks and . Yes, this is only my second c-toma surgery. However I

have had 3 " look-see " surgery's in the past 2.5 years as well. I had a clean

slate until this last surgery a few weeks ago..so apparently the c-toma grew

very fast this last time. They are getting me in very quickly for Alberta

standards...usually a 2 year wait for my neurosurgeon, but they are getting me

in Sept so I'm grateful.

:)Joanne

>

> I am so sorry to hear about the upcoming surgery. That is never fun to hear.

This group is VERY helpful because we can all understand so it is important to

vent your frustrations and ask questions. We get it. I have had eight

cholesteatoma surgeries in my life, over a 10 year period about 14 years ago. I

actually have a blog about it if you'd like to read more

lisaceardisease@...<mailto:lisaceardisease@...>

>

> At the very least, maybe it will make you feel better that you are only on

surgery number two!

>

> Good luck to you and please keep us posted.

>

>

>

>

> ________________________________

> IDQ Companies

[Guest guest]

Hi Joanne,

I am sorry to hear about the need of a new surgery. You had yours in the same

fall that I had my third surgery. In my last surgery they actually did not find

any c-toma, only the chronic infection. I understand from what I look at the

ct-scan and doctors explanation that they removed so much in my first two

surgeries that there probably would not be much room for a new c-toma to grow.

Maybe you should not worry about the hearing bones being removed. It is better

to loose some of your hearing than leaving some of the c-toma to keep growing.

No I have had very little hearing on my right ear since I was 7 years old, and

not been able to use hearing aids, but now that might change with the new

Vibrant Soundbridge.

I am happy to hear that you don´t have to wait too long. Good luck with the

upcoming surgery. You might heal better and faster this time. And please let us

no how it goes!

[Guest guest]

Joanne,

 

I know what you must be feeling...I had surgery over 20 yrs ago for a c-toma...it just recently grew back...the original Dr has retired and my new ENT is not comfortable doing the surgery so I am waiting for a Otolaryngologist (see him on the 27th of July). He specializes in skull base surgery, implants, and many other ENT things. I cannot believe the wait is that long...a lot of things can happen in a 2 yr span...it's good they were able to get you quickly. I don't remember much from the first surgery...I remember being very afraid but I was 15 at the time...I remember the surgery took a long time but the Dr wanted to get all the c-toma out so it didn't come back. I appreciated that...he also gave me a new eardrum, stapes, and that is about all I can remember. I don't know for me if I have to have multiple surgeries that I will ever get used to them...I do not like hospitals and they cause me a great deal of anxiety whether it is for me or if I am just visiting someone in one...sounds like you have a very aggressive c-toma. In 2006 my scans came out fine...I waited 4 yrs to have another scan done and it showed the c-toma grew back...I was not happy about that...actually quite scared to be honest. I am not sure what I am scared about...is it the complications that come along with this disease or the unknown of what could happen because of the symptoms I am having or what...I just cannot wait to be typing in this forum and stating that I have relief from this disease...I really don't like this disease...it is nice to have others that are going through the same thing...it sure helps put things into perspective for me and relate to everyone...almost like we are part of a family just going through this together type thing...this is scary and my symptoms have been very scary for me...it is good to read other stories and see that others are going through this and how they have coped...thanks everyone.

On Thu, Jul 8, 2010 at 9:00 AM, joanne peterson <jtpeterson@...> wrote:

 

Thanks and . Yes, this is only my second c-toma surgery. However I have had 3 " look-see " surgery's in the past 2.5 years as well. I had a clean slate until this last surgery a few weeks ago..so apparently the c-toma grew very fast this last time. They are getting me in very quickly for Alberta standards...usually a 2 year wait for my neurosurgeon, but they are getting me in Sept so I'm grateful.

:)Joanne>> I am so sorry to hear about the upcoming surgery. That is never fun to hear. This group is VERY helpful because we can all understand so it is important to vent your frustrations and ask questions. We get it. I have had eight cholesteatoma surgeries in my life, over a 10 year period about 14 years ago. I actually have a blog about it if you'd like to read more lisaceardisease@...<mailto:lisaceardisease@...>

> > At the very least, maybe it will make you feel better that you are only on surgery number two! > > Good luck to you and please keep us posted.> > > > > ________________________________> IDQ Companies

[Guest guest]

Thanks Wenche, good to chat with you again. I am thankful too that I can get

in so soon. I go for a consult with my neurosurgeon on Thursday this week. I'll

keep you posted.

Joanne

>

> Hi Joanne,

>

> I am sorry to hear about the need of a new surgery. You had yours in the same

fall that I had my third surgery. In my last surgery they actually did not find

any c-toma, only the chronic infection. I understand from what I look at the

ct-scan and doctors explanation that they removed so much in my first two

surgeries that there probably would not be much room for a new c-toma to grow.

Maybe you should not worry about the hearing bones being removed. It is better

to loose some of your hearing than leaving some of the c-toma to keep growing.

> No I have had very little hearing on my right ear since I was 7 years old, and

not been able to use hearing aids, but now that might change with the new

Vibrant Soundbridge.

>

> I am happy to hear that you don´t have to wait too long. Good luck with the

upcoming surgery. You might heal better and faster this time. And please let us

no how it goes!

>

[Guest guest]

Thanks Jenni, I am nervous too. Perhaps having been through it 2 years ago...its

still pretty fresh in my mind. I was not as aware the first time around and my

recovery was a pretty difficult one...so I am nervous. Its also the unknown, not

knowing what proceedure they will use or how advanced it has grown..so many what

if's. I believe in understanding as much as I can so that I dont have too many

surprises. Ironically, I have recently returned to University after a long

while, and my courses in Neuroscience are very fascinating. Interesting when you

can apply some of what you learn to yourself.

All the best,

Joanne

> > >

> > > I am so sorry to hear about the upcoming surgery. That is never fun to

> > hear. This group is VERY helpful because we can all understand so it is

> > important to vent your frustrations and ask questions. We get it. I have had

> > eight cholesteatoma surgeries in my life, over a 10 year period about 14

> > years ago. I actually have a blog about it if you'd like to read more

> > lisaceardisease@<mailto:lisaceardisease@>

> > >

> > > At the very least, maybe it will make you feel better that you are only

> > on surgery number two!

> >

> > >

> > > Good luck to you and please keep us posted.

> > >

> > >

> > >

> > >

> > > ________________________________

> > > IDQ Companies

[Guest guest]

Joanne I am right there with you...I am hoping recovery will be an ok

experience. I am almost to the point where I don't want to know the

procedure...just go in and get it done...tell my hubby and less worry for

me...but then again I kinda want to know the procedure because so many people on

here have had more than one surgery for this disease. I want to know how

advanced it has grown. I have the CD of the catscan and cannot read it for the

life of me...I don't know what part is normal and what isn't...I have to wait 2

more weeks to see the surgeon...if anyone wants to take a look at my scans and

tell me their thoughts that would be awesome...you know in terminology I can

understand. I was just trying to figure out where the c-toma was in my scan all

that fun stuff...I have tried researching online and haven't found a scan I can

compare mine too...you know one that kinda outlines what is good what is bad

type thing...Did you also have a scan done? What symptoms are/were you having?

Jenni

> > > >

> > > > I am so sorry to hear about the upcoming surgery. That is never fun to

> > > hear. This group is VERY helpful because we can all understand so it is

> > > important to vent your frustrations and ask questions. We get it. I have

had

> > > eight cholesteatoma surgeries in my life, over a 10 year period about 14

> > > years ago. I actually have a blog about it if you'd like to read more

> > > lisaceardisease@<mailto:lisaceardisease@>

> > > >

> > > > At the very least, maybe it will make you feel better that you are only

> > > on surgery number two!

> > >

> > > >

> > > > Good luck to you and please keep us posted.

> > > >

> > > >

> > > >

> > > >

> > > > ________________________________

> > > > IDQ Companies

[Guest guest]

Hi Jenni,

I never had a ct scan done. I had years of problems with pain and retracted

eardrum, but until they put tubes in a couple years ago to try to help the tubes

function better is when they actually saw the c-toma and than I was referred to

a neuosurgeon who did the surgery quite promptly. My understanding is that they

usually use the scan just to determine if you actually have a c-toma, it dons't

serve much purpose to the surgeon if you have already been diagnosed.They found

my c-toma again when they put the tubes back in a month ago, so I'm not

expecting to get a scan done. The waiting for you must be difficult. Keep me

posted with what you find out.

Take good care,

Joanne

> > > > >

> > > > > I am so sorry to hear about the upcoming surgery. That is never fun to

> > > > hear. This group is VERY helpful because we can all understand so it is

> > > > important to vent your frustrations and ask questions. We get it. I have

had

> > > > eight cholesteatoma surgeries in my life, over a 10 year period about 14

> > > > years ago. I actually have a blog about it if you'd like to read more

> > > > lisaceardisease@<mailto:lisaceardisease@>

> > > > >

> > > > > At the very least, maybe it will make you feel better that you are

only

> > > > on surgery number two!

> > > >

> > > > >

> > > > > Good luck to you and please keep us posted.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ________________________________

> > > > > IDQ Companies

[Guest guest]

Hi Joanne, Thanks so much...that makes sense. I just posted another post about

the pain I have been experiencing...never had pain before did you have pain

either time? I hope they can remove the c-toma and you can get some sort of

relief. I have never had tubes...maybe that is something to talk to my surgeon

about...especially if they help keep the ear dry...I would like to go swimming

and snorkeling and all that fun stuff but can't do that when I have to keep the

ear dry...so the scan is just the confirmation they need for the diagnosis. I

wondered about that...thanks Jenni

> > > > > >

> > > > > > I am so sorry to hear about the upcoming surgery. That is never fun

to

> > > > > hear. This group is VERY helpful because we can all understand so it

is

> > > > > important to vent your frustrations and ask questions. We get it. I

have had

> > > > > eight cholesteatoma surgeries in my life, over a 10 year period about

14

> > > > > years ago. I actually have a blog about it if you'd like to read more

> > > > > lisaceardisease@<mailto:lisaceardisease@>

> > > > > >

> > > > > > At the very least, maybe it will make you feel better that you are

only

> > > > > on surgery number two!

> > > > >

> > > > > >

> > > > > > Good luck to you and please keep us posted.

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > > ________________________________

> > > > > > IDQ Companies

[Guest guest]

Hi Jenni,

Yes, I have had pain in my ear before and after last surgery. I know some people

have said they've only experienced very little pain...I guess it all depends

where about its located and whether the eardrum itself is involved. My pain when

it comes feels like sharp knife like pains and than it passes after a bit. Same

with the vertigo, it comes and goes in waves. I hope yours gets managable for

you.

Have a good night,

Joanne

> > > > > > >

> > > > > > > I am so sorry to hear about the upcoming surgery. That is never

fun to

> > > > > > hear. This group is VERY helpful because we can all understand so it

is

> > > > > > important to vent your frustrations and ask questions. We get it. I

have had

> > > > > > eight cholesteatoma surgeries in my life, over a 10 year period

about 14

> > > > > > years ago. I actually have a blog about it if you'd like to read

more

> > > > > > lisaceardisease@<mailto:lisaceardisease@>

> > > > > > >

> > > > > > > At the very least, maybe it will make you feel better that you are

only

> > > > > > on surgery number two!

> > > > > >

> > > > > > >

> > > > > > > Good luck to you and please keep us posted.

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > > ________________________________

> > > > > > > IDQ Companies

[Guest guest]

Hi Bee and everyone,

I have developed some problems and I finally figured out my yeast issues are

back. It took me awhile to figure it out because this time some of the problems

are different than the first time I was here. Bee, I have started back on the

diet. I have not gotten on supplements yet. I am also sorting through the

changes that have been made to this program.

My main issues are: high blood pressure, fatigue, chest wheezing, being hot for

hours, bloating, sleep disturbances and what I think is a blocked paratid

salivary gland. I searched on salivary glands and found this is common. Mine is

on the inside of my jaw bone behind my molars. It gets bigger sometimes after I

eat. Sometimes it is just a small hard knot under the gum. I have a much smaller

one below my tongue. Sometimes I feel pressure under my chin and pain running up

to my ear. I am massaging it and using Espom salts. It has been this way since

Thanksgiving.

How long does a salivary problem take to go away?

Well, my list is much better this time. Last time I was on death's door.

Shelby