Newly diagnosed

November 22, 2005

Hey Sammie Mac,

You do have options:

Physical Therapy: Could fix the problem in and of itself or be a

complete waste of time (I did not benefit from PT).

Glucosamine/Chondroitin: Supposed to rebuild cartilage and lubricate

the joints, thus alleviating the cartilage defect problem. Might

help, probably won't. I didn't notice any benefit.

Knee Brace: Takes some of the load off the joint and provides

compression which helps. I use mine when I'm going to be on my feet

for a while and active but it doesn't alleviate any pain. It does

feel better when I remove it though which seems odd.

NSAIDs: Supposed to help by reducing inflammation which is one of the

causes of PFS pain. Only gave me stomach problems, had to stop.

Ice: Reduces swelling and inflammation. Made my knee cold, that's

about it.

Orthotics: Corrects misalignment problems resulting from poor arches

in the feet. Mine seem to help a bit but not enough to make a big

difference (yet).

Acupuncture: Promotes healing by redirecting blood flow to problem

areas. I tried it, determined it wasn't doing anything and stopped.

Chiropractic Adjustment: Activator is supposed to " Shock " the knee

into re-aligning itself. Back adjustments are supposed to help with

problems caused by subluxation which affect the knee. I'm embarassed

I even gave this a try.

Myofacial or Deep Tissue Massage: Haven't tried this. Suppose it

couldn't hurt except in the wallet.

Arthroscopic Surgery: I scheduled mine for Feb. 2nd with one of the

top knee surgeons in the area. I'm optimistic that this will finally

make a difference and get me back on track. No guarantees though but

it's something to hope for.

So you see, there is a lot you can do. Obviously for some, different

treatments work better or worse. Many people suffering from PFS and

CMP improve with conservative treatment (PT, NSAIDS, etc.). Some

only improve after surgery. Others are buggered for life and have to

manage it with lotions and potions.

Good luck,

-JT

>

> Yesterday in fact, was the long awaited result from my MRI scan

(left

> knee).

>

> My Dr told me there was good news & bad news. The good news was no

> serious damage to ligaments, the bad news I have chondromalacia and

> there is nigh on little that can be done.. except take ibuprofen

> (aadvil etc) or similar when it hurts.

>

> I asked him directly if it was arthritis and he said no but it

would

> probably develop.

>

> I looked online and one of the first sites I found said

chondromalacia

> is called osteoarthritis in sufferes over 30 (which I am).

>

> So could somebody please tell me, who is right, me or the doc? Do I

> have osteoarthritis, is the only 'treatment' taking anti-

> inflammotories???

>

> Thank you

>

November 22, 2005

JT, you made me laugh today....Thank You. Your message sounded like every

doctors appointment I go to, except after I tell the doc all I tried, he tells

me I am screwed. I hope your surgery goes well!! Although I tried it and it did

nothing for me!!!

Happy Thanksgiving!

jtroc67 <jeff.trockman@...> wrote:

Hey Sammie Mac,

You do have options:

Physical Therapy: Could fix the problem in and of itself or be a

complete waste of time (I did not benefit from PT).

Glucosamine/Chondroitin: Supposed to rebuild cartilage and lubricate

the joints, thus alleviating the cartilage defect problem. Might

help, probably won't. I didn't notice any benefit.

Knee Brace: Takes some of the load off the joint and provides

compression which helps. I use mine when I'm going to be on my feet

for a while and active but it doesn't alleviate any pain. It does

feel better when I remove it though which seems odd.

NSAIDs: Supposed to help by reducing inflammation which is one of the

causes of PFS pain. Only gave me stomach problems, had to stop.

Ice: Reduces swelling and inflammation. Made my knee cold, that's

about it.

Orthotics: Corrects misalignment problems resulting from poor arches

in the feet. Mine seem to help a bit but not enough to make a big

difference (yet).

Acupuncture: Promotes healing by redirecting blood flow to problem

areas. I tried it, determined it wasn't doing anything and stopped.

Chiropractic Adjustment: Activator is supposed to " Shock " the knee

into re-aligning itself. Back adjustments are supposed to help with

problems caused by subluxation which affect the knee. I'm embarassed

I even gave this a try.

Myofacial or Deep Tissue Massage: Haven't tried this. Suppose it

couldn't hurt except in the wallet.

Arthroscopic Surgery: I scheduled mine for Feb. 2nd with one of the

top knee surgeons in the area. I'm optimistic that this will finally

make a difference and get me back on track. No guarantees though but

it's something to hope for.

So you see, there is a lot you can do. Obviously for some, different

treatments work better or worse. Many people suffering from PFS and

CMP improve with conservative treatment (PT, NSAIDS, etc.). Some

only improve after surgery. Others are buggered for life and have to

manage it with lotions and potions.

Good luck,

-JT

>

> Yesterday in fact, was the long awaited result from my MRI scan

(left

> knee).

>

> My Dr told me there was good news & bad news. The good news was no

> serious damage to ligaments, the bad news I have chondromalacia and

> there is nigh on little that can be done.. except take ibuprofen

> (aadvil etc) or similar when it hurts.

>

> I asked him directly if it was arthritis and he said no but it

would

> probably develop.

>

> I looked online and one of the first sites I found said

chondromalacia

> is called osteoarthritis in sufferes over 30 (which I am).

>

> So could somebody please tell me, who is right, me or the doc? Do I

> have osteoarthritis, is the only 'treatment' taking anti-

> inflammotories???

>

> Thank you

>

November 23, 2005

JT, great and thorough list!

I would like to say what has helped me.

Ice, definitely. Even if you can't tell if it's helping, ice is helping

with CMP, and is important to do for inflammation. There are some great

PT/sports gel packs you can buy cheaply on the internet for this. They are

MUCH better than what you can find at the local drug store. They are just

like the ones at PT. I have ones called Colpack made by Chattanooga Group.

If your CMP is caused by malignment of the knee, like mine is, a knee brace

that aligns the knee is extremely helpful durinig activities. I got one

from my PT made by Bird & Crown, Inc. It's basically two long strips joined

together at the knee, that you wrap around your knee to correctly align it,

and also provides compression.

PT and exercise to strengthen your quad and other leg muscles will help too.

It may not be " enough, " but it does help and skipping these exercises is

bad for many reasons.

Good luck with everything,

Deb

>From: " jtroc67 " <jeff.trockman@...>

>Reply-chondromalacia treatment

>chondromalacia treatment

>Subject: Re: newly diagnosed

>Date: Tue, 22 Nov 2005 14:39:20 -0000

>

>Hey Sammie Mac,

>

>You do have options:

>

>Physical Therapy: Could fix the problem in and of itself or be a

>complete waste of time (I did not benefit from PT).

>

>Glucosamine/Chondroitin: Supposed to rebuild cartilage and lubricate

>the joints, thus alleviating the cartilage defect problem. Might

>help, probably won't. I didn't notice any benefit.

>

>Knee Brace: Takes some of the load off the joint and provides

>compression which helps. I use mine when I'm going to be on my feet

>for a while and active but it doesn't alleviate any pain. It does

>feel better when I remove it though which seems odd.

>

>NSAIDs: Supposed to help by reducing inflammation which is one of the

>causes of PFS pain. Only gave me stomach problems, had to stop.

>

>Ice: Reduces swelling and inflammation. Made my knee cold, that's

>about it.

>

>Orthotics: Corrects misalignment problems resulting from poor arches

>in the feet. Mine seem to help a bit but not enough to make a big

>difference (yet).

>

>Acupuncture: Promotes healing by redirecting blood flow to problem

>areas. I tried it, determined it wasn't doing anything and stopped.

>

>Chiropractic Adjustment: Activator is supposed to " Shock " the knee

>into re-aligning itself. Back adjustments are supposed to help with

>problems caused by subluxation which affect the knee. I'm embarassed

>I even gave this a try.

>

>Myofacial or Deep Tissue Massage: Haven't tried this. Suppose it

>couldn't hurt except in the wallet.

>

>Arthroscopic Surgery: I scheduled mine for Feb. 2nd with one of the

>top knee surgeons in the area. I'm optimistic that this will finally

>make a difference and get me back on track. No guarantees though but

>it's something to hope for.

>

>So you see, there is a lot you can do. Obviously for some, different

>treatments work better or worse. Many people suffering from PFS and

>CMP improve with conservative treatment (PT, NSAIDS, etc.). Some

>only improve after surgery. Others are buggered for life and have to

>manage it with lotions and potions.

>

>Good luck,

>

>-JT

>

> >

> > Yesterday in fact, was the long awaited result from my MRI scan

>(left

> > knee).

> >

> > My Dr told me there was good news & bad news. The good news was no

> > serious damage to ligaments, the bad news I have chondromalacia and

> > there is nigh on little that can be done.. except take ibuprofen

> > (aadvil etc) or similar when it hurts.

> >

> > I asked him directly if it was arthritis and he said no but it

>would

> > probably develop.

> >

> > I looked online and one of the first sites I found said

>chondromalacia

> > is called osteoarthritis in sufferes over 30 (which I am).

> >

> > So could somebody please tell me, who is right, me or the doc? Do I

> > have osteoarthritis, is the only 'treatment' taking anti-

> > inflammotories???

> >

> > Thank you

> >

>

November 29, 2005

Thanks .

I'm sorry you haven't found relief through surgery and otherwise. My

doctor says it's only a 70% chance that I will improve after scope so

I realize it may not help but I have to try!

Good luck with everything,

-JT

> >

> > Yesterday in fact, was the long awaited result from my MRI scan

> (left

> > knee).

> >

> > My Dr told me there was good news & bad news. The good news was

no

> > serious damage to ligaments, the bad news I have chondromalacia

and

> > there is nigh on little that can be done.. except take ibuprofen

> > (aadvil etc) or similar when it hurts.

> >

> > I asked him directly if it was arthritis and he said no but it

> would

> > probably develop.

> >

> > I looked online and one of the first sites I found said

> chondromalacia

> > is called osteoarthritis in sufferes over 30 (which I am).

> >

> > So could somebody please tell me, who is right, me or the doc? Do

I

> > have osteoarthritis, is the only 'treatment' taking anti-

> > inflammotories???

> >

> > Thank you

> >

>

November 29, 2005

Please let us know how your surgery goes....beginning of next year I think you

said. I have had increased swelling over the past few weeks, and of course that

has made the pain worse. I am planning on making an appointment with my doc so

he can send me to some kind fo pain management. But, with every doctors

appointment comes the realization that I have no current options for relief, and

that is a frustrating as the pain.

Happy Holidays,

jtroc67 <jeff.trockman@...> wrote:

Thanks .

I'm sorry you haven't found relief through surgery and otherwise. My

doctor says it's only a 70% chance that I will improve after scope so

I realize it may not help but I have to try!

Good luck with everything,

-JT

> >

> > Yesterday in fact, was the long awaited result from my MRI scan

> (left

> > knee).

> >

> > My Dr told me there was good news & bad news. The good news was

no

> > serious damage to ligaments, the bad news I have chondromalacia

and

> > there is nigh on little that can be done.. except take ibuprofen

> > (aadvil etc) or similar when it hurts.

> >

> > I asked him directly if it was arthritis and he said no but it

> would

> > probably develop.

> >

> > I looked online and one of the first sites I found said

> chondromalacia

> > is called osteoarthritis in sufferes over 30 (which I am).

> >

> > So could somebody please tell me, who is right, me or the doc? Do

I

> > have osteoarthritis, is the only 'treatment' taking anti-

> > inflammotories???

> >

> > Thank you

> >

>

March 13, 2006

Nate, welcome to the group. Your doctor gave you the run down of the treatments for this disease. Aurgery is the best option for people that have this disease unless you would not be able to handle surgery. This is a progressive disease and if left untreated can be life threatening. There is no known reason why we get this disease as far as I know. The disease effects the Vagus nerve and that nerve controls the E. I have not taken any alteritive methodes to help me with this. I have had the surgery and I am very glad I have. I would suggest you find a sergeon that has delt with the disease and has done the surgery before if you decied to go that route. We are here to support you and some have strong convitction on how you should get this taken care of. Remember you have to make a decision that you feel best with.

Once again welcome to the group adn if you have any other questions please feel free to ask. Look over the group site really well. There is a lot of information there.

in Suffolk

March 13, 2006

Hi Nate,

Welcome to the group! I hope you find this family as a source of

support and information - that's what its around for!

> 1) Is there any commonality of source of this condition amongst us?

I have been chronically a quick eater and maybe rapid swallowing

without an interval messes up the muscles of esophogus?

There is no commonality among us that we have figured out. We're

just those lucky 1 in 100,000!

> 2) I have been seeing (for past 2 weeks) a naturopath, who a)claims

that almost all diseases result from body being too acidic from

american diet and b)claims that nerves can be regenerated if body is

more alkaline and taking certain supplements - she has never heard of

achalasia but has cured double digit people of cancer and other

diseases. My father is a doctor (ortho) and claims that nerves DO

regenerate, but only within 18 months of them 'dying' - any thoughts

here?

Personally, I am not " into " the natural treatment of achalasia. I

trusted my surgeon 100% when he suggested the heller with partial

funduplication, and stuck with that train.

> 3) has this group extensively looked at alternative methods to

treatment - my doctor basically told me a)botox, b)dilation c) heller

and kicked me out of his office - i think chinese and other methods

may be underlooked at - I already feel worlds better eating less meat

and more veggies and drinking alkaline water, etc. what about

acupuncture? My doctor (who I have less and less respect for) said

there is no example in history of esophogeal motility coming back,

once lost.

>

> 4) why do I get the feeling that there are in fact more than 2000

people per year diagnosed with this? what is the common causality, in

our world of excess?

>

> 5) In your (more experienced) opinion, am I better off gettig the

myotomy soon (given the risk of my esopogus taking up half my chest

cavity) or waiting until furhter advancements or naturopathic

remedies are given a chance.

Yes, you are better having your surgery sooner than later. The

longer you wait, the higher the chances are of your esophogus

stretching, and your symptoms getting worse. There is no cure for

achalasia, only ways to treat the symptoms.

There are over 1000 members of this group, and there is always

someone around to answer your question, so ask away. Good luck!

Hugs,

in BC

June 4, 2006

Hi ,

Welcome to the group! I know how it feels when you're just starting

on this OCD ride, and start reading all the posts here. It can be

VERY scary to see what some are going through. But no, that does not

mean your son is headed down that road. OCD comes in so many

different forms, and things (symptoms) can change quickly, but there

are many out there whose OCD stays mild and in the background. Even

those who get severe can get incredible results from proper therapy

(which it sounds like your son is getting). Also, by all accounts, the

earlier the therapy is received, the prognosis for a " normal " life is

extremely likely.

I wouldn't worry about Ben gaining compulsions by reading or talking

about that. I used to think that as well, but with OCD having no

logic, our kids seem to shrug off others' symptoms. My daughter read

" Up and Down the Worry Hill " and thought the boys thoughts/compulsions

in the book were quite silly. She has heard of many kids' problems

from this site, since at times I share posts with her to see if she

had any ideas on how to help. She has much empathy for what someone

is going through, but cannot understand why so-and-so does this or

that vs. what she does.

Good luck with everything and know that you are not alone -

nna.

NY

>

> Hi everyone,

> I've been on this board for about two weeks, just reading all of

your stories. It just breaks my heart to hear all you are going

through, and it scared me quite a bit, but the bright spots give me

hope. You are all so strong and courageous. Here is a bit of our story.

>

> My son Ben, just turned 7..

June 4, 2006

Thank you, nna. He has been very curious about OCD in other children. He

told me a few nights ago that he was going to talk to Santa (yes, he still truly

believes) about taking away his OCD and taking OCD away from all kids who have

it. He said that if he could hold on until Christmas, Santa would fix it. Then

he asked me if Santa could really do that, and that would be the best gift. I

told him that didn't think Santa could do that. Then I started to cry, which I

do a lot. He just patted my head and said " oh, mom, don't cry again. I'm fine. "

He is also trying to guess who else he knows who might have it. A few adults we

know have shared that they have it as well, since we've found out about Ben.

Some close friends who we didn't know. Lately he's been telling everyone we

meet that he has OCD and can't watch scary or violent movies.

He really liked the boy in the Mr. Worry book. was a lot like him. Not

many compulsions, but bad thoughts. He felt better knowing it wasn't just him.

J

Re: newly diagnosed