Re: Where to go next?

January 26, 2006

Hi

My son had CWD 2 years ago at age 11. HE is also very active in sports and has done very well. His only restriction is that he can not be a swimmer. He can swim recreationally with a custom plug but competitive swimmer is just too much exposure. At 13, his sports are football and track. When he went through the same as your son, surgeries every year, we scheduled them in the winter months. It did not affect his sports. ly, I was terrified of the CWD but it was the best thing. His surgeries are finally over!!!! Twice a year he has to have his ear cleaned but that is not a big deal. He loves his otologist (and wants to be one someday) so it's an actual treat for him to see him and gab with him. I would recommend that you go with the otologist closest to you since he will need to go a few times per year for the rest of his life. Just because it's a big city does not mean a certain doctor is better. Our otologist grew up in Brattleboro Vt and now practices close to us in Western MAss, no big city, because this is where he wanted to practice, close to his extended family. Lucky for us. Patients come from all over New England to seek his expertise. So, go meet the otologist closest to you and check him/her out.

My son has had 2 reconstructions that have failed and has very limited hearing in his ear. We had him fit for a hearing aid last year but he doesn''t want to wear it. I guess 13 year olds don't want to be different. I think it effects his hearing on the sports field but he still does very well.

I know it's scary but it really was a blessing. We got so sick of those surgeries. Although his otologist would like to try reconstruction again, my son doesn't want it. After what he has been through, we are respecting his decision.

My best to you and your son and if you have any more questions, let me know

Dorothy

where to go next?

I've just joined the group. I have a 10 year old son with recurrent ctoma of the left ear, facing his 6th surgery. My local ENT has referred me to an otologist, but we are considering a trip to L.A. to House Otology. He's had a total mastoidectomy and the next will take down the canal wall. He's very active in sports and very upset about having to plug his ears the rest of his life. Will go just about anywhere to find the latest in treatment options, if there are any new ones. Any suggestions.

January 26, 2006

Hi Dorothy,

Thanks so much for your story and information. My son has a 25%

hearing loss in the left ear, and the otologist thinks it might even

improve a little if the do the CWD. He had a 70% loss before the first

surgery (5 years ago), so we feel very blessed with the improvement and

maintenance. With the 2 recurrences, it worsened, but returned to 25%

loss after surgery.

Does your son have any trouble with tinnitis? I've seen that mentioned

a lot in this forum, but the physician hasn't mentioned it as a side

effect. My father suffers from it (a retired jet pilot), and I'd hate

for my son to have it at such a young age.

Your advise is greatly appreciated and I'm glad your son has done so

well.

January 27, 2006

My son had a CED in October '05 after only 1 removal surgery. During the

2nd look they did the CWD. He has been fine. I was really worried at first,

but he hasn't had any problems. We get it cleaned out about every 3 months

and the doc keeps an eye on it fairly closely since the CWD was done

relatively recently. He plays baseball and goes to school and doesn't have

much of a problem, although I have noticed his hearing has really changed,

but we may be up for recontruction this year. It is worrisome, but all will

be well!

>From: " awbsjb " <keithsheri@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: where to go next?

>Date: Thu, 26 Jan 2006 21:43:12 -0000

>

>I've just joined the group. I have a 10 year old son with recurrent

>ctoma of the left ear, facing his 6th surgery. My local ENT has

>referred me to an otologist, but we are considering a trip to L.A. to

>House Otology. He's had a total mastoidectomy and the next will take

>down the canal wall. He's very active in sports and very upset about

>having to plug his ears the rest of his life. Will go just about

>anywhere to find the latest in treatment options, if there are any new

>ones. Any suggestions.

>

January 27, 2006

Thanks for your note. Has he experienced any tinnitis? I've seen that

mentioned in this forum, but my doctor hasn't mentioned it.

January 30, 2006

Thanks for your note. Have you experienced any tinnitis? We see the

otologist again on Feb. 27 and I'm keeping a list of questions for

him. Are there any others I should ask? I've seen tinnitis mentioned

a lot recently.

May 2, 2006

What dose and dosing schedule are you using? I presume you have NO mercury

amalgam dental fillings. If you have ANY stop trying to chelate immediately.

Did you do a hair test and apply counting rules? What did it show? What other

supplements are you using? Are you taking probiotics? Have you considered ALA

(only if you have NO mercury amalgam dental fillings).

S S

I've been getting really bad headaches, achy muscles, ear aches,

moodiness, today I've been feeling light headed to the point where

I've almost fainted, and every time I stop the TD DMPS I notice a

direct connection to tics that last a couple days after my last

usage of dmps. I'm really confused with what to do because I don't

know if it's that heavy metals are being mobilized, yeast is

becoming a large problem, I'm sensitive to dmps, or if it's

something else. Any ideas?

It's disappointing to me because my chelation doctor does not stay

up on my case. I don't know what to do because if the heavy metals

are being mobilized and I'm currently excreting them and it's rough

because of that I want to keep going and get to the other side. If

it's not that and I'm sensitive to DMPS or something then maybe it's

time to try something else like DMSA, EDTA Suppositories, NDF Plus,

just plain Chlorella, only MB12 shots, or something. This is getting

frustrating because I hate feeling like this. Does anyone have any

suggestions?

At what point do you decide that this may not be the right chelator

for you and switch? How do you know if your having trouble

tolerating the chelation agent or if it's just detox signs?

Carolyn

<tt>

=======================================================

May 2, 2006

I'm chelating every 4 hours using 4 drops of TD DMPS each time. 3

days on and 4 days off. I have no amalgam dental fillings, got them

removed last July. When I went in for a cleaning the dentist said

I've still got mercury fillings and he scared me to death because I

was chelating, but he made a mistake and said he was looking at the

old x-rays (the ones from before I had them removed). Yes, I did a

hair test and applied the counting rules. It fit the counting rules

for mercury toxicity. I'm using a mineral complex with all the

minerals, b-complex, vitamin c, flaxseed oil, acetyl-l-carnitine,

and vitamin E. I'm taking probiotics every 3 days. I've thought

about adding ALA, but haven't yet because I've been struggling so

much with just the DMPS.

Carolyn

>

chelate immediately. Did you do a hair test and apply counting

rules? What did it show? What other supplements are you using?

Are you taking probiotics? Have you considered ALA (only if you

have NO mercury amalgam dental fillings).

> S S

May 2, 2006

I think you may need the probiotics everyday. And maybe DMSA would

be less problematic. I am not sure what four drops equivalates for

the DMPS. But many people seem to get sicker using that one. I think

it depletes some other minerals too. How high is the vitamin C dose?

During chelation you need a lot and given throughout the day.

> >

> chelate immediately. Did you do a hair test and apply counting

> rules? What did it show? What other supplements are you using?

> Are you taking probiotics? Have you considered ALA (only if you

> have NO mercury amalgam dental fillings).

> > S S

>

May 2, 2006

I could try doing the probiotics everyday. Each drop of TD DMPS has 1

mg of DMPS and 4 mg of Glutathione in it. I take 1,000 mg of Vitamin

C each day just in the morning.

Carolyn

>

> I think you may need the probiotics everyday. And maybe DMSA would

> be less problematic. I am not sure what four drops equivalates for

> the DMPS. But many people seem to get sicker using that one. I think

> it depletes some other minerals too. How high is the vitamin C dose?

> During chelation you need a lot and given throughout the day.

May 3, 2006

Try usig the probiotics every day. Consider quitting the DMPS, waiting a little

while then starting the ALA.