Good News

[Guest guest]

Carol~ That really is good news! I am so happy that you are finally going to get what you have needed for so long! Its nice to be heard! I look forward to hearing what you find out when you go see them. I'll be thinking of you! SuzieCarol <dcvaughan@...> wrote: Well, today I went to the new ortho. he introduced himself and he said he needed to look at my X-rays, and when he came back in afterward, he basically asked me what I was there for, and I said PAIN. I could tell when he began talking after asking me a few questions about my scoliosis history and only briefly looking at my back, and asking me to bend at the waist (HA!) I proceeded to show him how I bend at the hips only and have been doing so for 32 yrs. Anyway, I could tell that he knew

that I needed somebody who SPECIALIZED in scoliosis and all the issues. I mentioned UCSF,and he said he refers people there. Anyway, to make a long story short, he's referring me to either Dr. Hu or Berven and he also gave me a signed form to get a handicapped placard!!! Too bad I didn't go to HIM a year ago. He said I needed to be evaluated to know exactly WHERE my pain is coming from and what exactly is causing it. The CT scan I had done last year had been done without the Mylographic dye, so they couldn't rule out stenosis, but my symptoms don't seem to point that direction. I just have severe arthritis of the spine and Degenerative Disc Disease and flatback, of course! He also is referring me to a Pain Management Center in Visalia. I just hope my insurance covers that. Otherwise, he'll give me Ultram. It was funny, when I got home, I looked at the mail and there was a letter from the previous ortho, and guess

what!!! He's retiring April 30--I said to someone that he needed to retire last year when I saw him!!! Too "old school" and stuck in his ways and full of himself. So, that chapter is gone--and I have my X-rays from his office--and I think I'll just keep them!!!!!!! So, those of you who have send me e-mails lately about pain management, pain pills, and any UCSF info---THANK YOU!!! I was going to refer myself to UCSF, but I'm going to let this doctor do it--I'm sure he'll know better what to say and maybe I might even get in a little sooner, too-----who knows!!!And yes, I would like to send a card or greeting when she gets home. I know that cheered me up so much when I had mysurgery so many years ago while I was in the hospital for 2 weeks----those cards and letters from home. (Since the hospital was 200 miles from home)Carol (CA) scoliosis veterans * flatback sufferers * revision candidates

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Messenger with Voice.

[Guest guest]

Carol-CA,

That is excellent news! It seems like you have found that nice quality

in a doctor that knows the " business " and his own limits and isn't

afraid to act as a mediator for his patient.

And how cool is it that you have all your own records in your hot

little hands now that " old frumpy doc " is retiring?!!

The last piece of good news is that your doc thinks it is mostly DDD

as the source of your pain ..I think generally speaking, you can

expect good results in terms of pain reduction when this is the

primary problem (other than the flatback of course!).

I hope you get an appointment early...stay on it! Cam

[Guest guest]

Carol, that is AWESOME news! Best of luck with the rest of the journey.

Sharon

[ ] Good News

> Well, today I went to the new ortho. he introduced himself and he

> said he needed to look at my X-rays, and when he came back in

> afterward, he basically asked me what I was there for, and I said

> PAIN. I could tell when he began talking after asking me a few

> questions about my scoliosis history and only briefly looking at my

> back, and asking me to bend at the waist (HA!) I proceeded to show

> him how I bend at the hips only and have been doing so for 32 yrs.

> Anyway, I could tell that he knew that I needed somebody who

> SPECIALIZED in scoliosis and all the issues. I mentioned UCSF,and he

> said he refers people there. Anyway, to make a long story short, he's

> referring me to either Dr. Hu or Berven and he also gave me a signed

> form to get a handicapped placard!!! Too bad I didn't go to HIM a

> year ago. He said I needed to be evaluated to know exactly WHERE my

> pain is coming from and what exactly is causing it. The CT scan I had

> done last year had been done without the Mylographic dye, so they

> couldn't rule out stenosis, but my symptoms don't seem to point that

> direction. I just have severe arthritis of the spine and Degenerative

> Disc Disease and flatback, of course! He also is referring me to a

> Pain Management Center in Visalia. I just hope my insurance covers

> that. Otherwise, he'll give me Ultram.

>

> It was funny, when I got home, I looked at the mail and there was a

> letter from the previous ortho, and guess what!!! He's retiring April

> 30--I said to someone that he needed to retire last year when I saw

> him!!! Too " old school " and stuck in his ways and full of himself.

> So, that chapter is gone--and I have my X-rays from his office--and I

> think I'll just keep them!!!!!!!

>

> So, those of you who have send me e-mails lately about pain

> management, pain pills, and any UCSF info---THANK YOU!!! I was going

> to refer myself to UCSF, but I'm going to let this doctor do it--I'm

> sure he'll know better what to say and maybe I might even get in a

> little sooner, too-----who knows!!!

>

> And yes, I would like to send a card or greeting when she gets

> home. I know that cheered me up so much when I had mysurgery so many

> years ago while I was in the hospital for 2 weeks----those cards and

> letters from home. (Since the hospital was 200 miles from home)

>

> Carol (CA)

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

Hello Sherry

Thank you for sharing the good news, and also thank you for letting

new parents know that these bands are not just being sold, but that

they have a purpose. )

Sandy Willow's mom

torticollis resolved

cranio germany grad

>

> Hi all I've been preoccupied with personal issues but Chase had

his 10

> week adjustment today and we discussed graduation! His ortho said

if he

> came in to CT today she would recommend a band! He's doing great.

So

> he'll have 2 more visits and we're done.

>

> I'm so happy. I was expecting that they would suggest another

band.

> He's not perfect but he's better than I expected. So for people

who

> question whether sometimes a band is suggested for money purposes

I

> know for a fact now they're not.

>

> Sherry

> Chase 8 3/4 months

> tort (almost resolved!)

> DOC band 2/15

> NYC

>

[Guest guest]

YAH CHASE!!!

Sherry,

Thanks for sharing your awesome news w/us! Let us know when your

little man is an official grad. I can't wait to see his before and

after pics.

-- In Plagiocephaly , " alwell_sherry " <type916@...> wrote:

>

> Hi all I've been preoccupied with personal issues but Chase had his 10

> week adjustment today and we discussed graduation! His ortho said if he

> came in to CT today she would recommend a band! He's doing great. So

> he'll have 2 more visits and we're done.

>

> I'm so happy. I was expecting that they would suggest another band.

> He's not perfect but he's better than I expected. So for people who

> question whether sometimes a band is suggested for money purposes I

> know for a fact now they're not.

>

> Sherry

> Chase 8 3/4 months

> tort (almost resolved!)

> DOC band 2/15

> NYC

>

[Guest guest]

Sherry,

Good for you and Chase. I am sure it is nice to be done sooner than

you had expected. Maybe he will have another growth spurt before he

gets out of it!!!

Isabelle 8mos STARband 1/31/06

>

> Hi all I've been preoccupied with personal issues but Chase had

his 10

> week adjustment today and we discussed graduation! His ortho said

if he

> came in to CT today she would recommend a band! He's doing great.

So

> he'll have 2 more visits and we're done.

>

> I'm so happy. I was expecting that they would suggest another

band.

> He's not perfect but he's better than I expected. So for people

who

> question whether sometimes a band is suggested for money purposes

I

> know for a fact now they're not.

>

> Sherry

> Chase 8 3/4 months

> tort (almost resolved!)

> DOC band 2/15

> NYC

>

[Guest guest]

That's great news!

Haylee

mom to adnre doc band grad

>

> Hi all I've been preoccupied with personal issues but Chase had

his 10

> week adjustment today and we discussed graduation! His ortho said

if he

> came in to CT today she would recommend a band! He's doing great.

So

> he'll have 2 more visits and we're done.

>

> I'm so happy. I was expecting that they would suggest another

band.

> He's not perfect but he's better than I expected. So for people

who

> question whether sometimes a band is suggested for money purposes

I

> know for a fact now they're not.

>

> Sherry

> Chase 8 3/4 months

> tort (almost resolved!)

> DOC band 2/15

> NYC

>

[Guest guest]

This is wonderful news Sherry. I'm thrilled to hear that Chase doesn't need

another band. You're now almost done with this whole ordeal and one step

closer to enjoying Chase's new head.

I can confirm your comments about CT not suggesting bands that are not

warranted. Yesterday, Malcolm had his weekly adjustment and, like you, we

were also told that he may not need a second band either.

It's very comforting and a relief to hear that CT is not concerned solely

with money or banding babies unnecessarily. For any parents who are

considering banding their babies, please bear our experiences in mind when

making your decision to band or not.

Carolyn in NYC

Mum to Malcolm - 6 mos - born with plagio and tort - Doc band 3/27

good news

Hi all I've been preoccupied with personal issues but Chase had his 10

week adjustment today and we discussed graduation! His ortho said if he

came in to CT today she would recommend a band! He's doing great. So

he'll have 2 more visits and we're done.

I'm so happy. I was expecting that they would suggest another band.

He's not perfect but he's better than I expected. So for people who

question whether sometimes a band is suggested for money purposes I

know for a fact now they're not.

Sherry

Chase 8 3/4 months

tort (almost resolved!)

DOC band 2/15

NYC

For more plagio info

[Guest guest]

That's great news. Cogratulations.

Sharon

--- heartside76 <JOSHUA_PELTON@...> wrote:

> hello all i got some great news today,my liver is

> fine and i do not

> need treatment!! i was very happy to hear that,i

> have been worried

> sick about it

>

>

>

>

>

__________________________________________________

[Guest guest]

Congrats, Just stay that way!! Best of luck.

--- Sharon Zeis <szeis_1@...> wrote:

> That's great news. Cogratulations.

> Sharon

>

> --- heartside76 <JOSHUA_PELTON@...> wrote:

>

> > hello all i got some great news today,my liver is

> > fine and i do not

> > need treatment!! i was very happy to hear that,i

> > have been worried

> > sick about it

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

That is great news. Terryheartside76 <JOSHUA_PELTON@...> wrote: hello all i got some great news today,my liver is fine and i do not need treatment!! i was very happy to hear that,i have been worried sick about it

[Guest guest]

Allright Josh!! That's great news. Glad to hear

it. -dz-

At 12:24 AM 5/10/2006, you wrote:

hello all i got some great news

today,my liver is fine and i do not

need treatment!! i was very happy to hear that,i have been worried

sick about it

[Guest guest]

Jolynn,

Did DrRand fill out the paperwork for you? I think the qualifying

factor is not scoliosis but fused segments in your spine. Ann Mc

(Rand revision also)had no trouble getting hers....you might want to

email her privately...she is here in MA too.

I am sorry you have to jump through hoops when you can barely walk.

Cam

[Guest guest]

Yes, Dr Rand filled it out. I called and they said they sent me a

letter (which I never got) So I asked about the appeals process and

They said I could resubmit with more info from the Dr. (and wait

another 30 business days). I then called Priscilla who was shocked

that it was denied. She said they ALWAYS put scoliosis and have never

had anyone denied. She said the point of the DR filling it out is that

they are medicaly confirming impaired mobility.

I spoke with the supervisor at the RMV and they said that I can have

the DR fax more info so Priscilla said she would sometime this week.

They said they would try to process it as soon as they get it. I felt

bad asking Priscilla to jump through the hoop too. What is the point

of getting the Dr to fill out the paper if they are not going to

believe him?

This just really stinks, but it is really typical of Massachusetts so

I am not too surprised.

Jolynn

>

> Jolynn,

>

> Did DrRand fill out the paperwork for you? I think the qualifying

> factor is not scoliosis but fused segments in your spine. Ann

Mc

> (Rand revision also)had no trouble getting hers....you might want to

> email her privately...she is here in MA too.

>

> I am sorry you have to jump through hoops when you can barely walk.

>

> Cam

>

[Guest guest]

Jolynn, that's just awful. Who filled out your paper work?

I don't think you should take no for an answer. Have you called Dr. Rand's

office? He should know about this.

I wish I had more helpful things to say, but " move to NH " comes to mind.

:^(

Sharon

[ ] Good news

None of us really need a cane to walk and are not really impaired,

according to the RMV here in MA. I do not need a cane after all.

Apperantly I use it for FUN. Who knew? Doesn't everyone just get up in

the morning and wish they could apply for a handicap placard. It must

just be some odd life long dream of mine. So much so that I am really

just faking the whole thing and going through a 2 stage revision just

so I can park a little closer.

They denied me the placard because they said scoliosis does not cause

people to walk with a cane. Maybe I should start seeing the RMV Dr. Oh

wait they are not a DR. Oh well at least now I know I can get rid of

the cane, and all this pain and bending over is just in my head.

Ever get the feeling you are surrounded by idiots?

Jolynn

scoliosis veterans * flatback sufferers * revision candidates

[Guest guest]

Jolynn, Dr. Rand told me that Mass. is usually pretty good about it.

In my case I didn't even get him to fill out the paperwork, although he

offered to do it. My local PCP wrote " severe kyphoscoliosis " on my

application.

It may be that there's a new person handling this stuff at the DMV. I hope

Dr. Rand's office can get this straightened out for you.

Sharon

[ ] Re: Good news

Yes, Dr Rand filled it out. I called and they said they sent me a

letter (which I never got) So I asked about the appeals process and

They said I could resubmit with more info from the Dr. (and wait

another 30 business days). I then called Priscilla who was shocked

that it was denied. She said they ALWAYS put scoliosis and have never

had anyone denied. She said the point of the DR filling it out is that

they are medicaly confirming impaired mobility.

I spoke with the supervisor at the RMV and they said that I can have

the DR fax more info so Priscilla said she would sometime this week.

They said they would try to process it as soon as they get it. I felt

bad asking Priscilla to jump through the hoop too. What is the point

of getting the Dr to fill out the paper if they are not going to

believe him?

This just really stinks, but it is really typical of Massachusetts so

I am not too surprised.

Jolynn

>

> Jolynn,

>

> Did DrRand fill out the paperwork for you? I think the qualifying

> factor is not scoliosis but fused segments in your spine. Ann

Mc

> (Rand revision also)had no trouble getting hers....you might want to

> email her privately...she is here in MA too.

>

> I am sorry you have to jump through hoops when you can barely walk.

>

> Cam

>

scoliosis veterans * flatback sufferers * revision candidates

[Guest guest]

Hi Jolynn! I am sorry that the RMV is giving you a hard time. If they continue to do so, I would look into having my state legislator contact them. I work for Mass. state government, and when a legislator calls, we jump!!!

Good luck!

Kim

In a message dated 5/17/06 10:50:04 AM, leominsterhsg@... writes:

Yes, Dr Rand filled it out. I called and they said they sent me  a

letter (which I never got) So I asked about the appeals process and

They said I could resubmit with more info from the Dr. (and wait

another 30 business days). I then called Priscilla who was shocked

that it was denied. She said they ALWAYS put scoliosis and have never

had anyone denied. She said the point of the DR filling it out is that

they are medicaly confirming impaired mobility.

I spoke with the supervisor at the RMV and they said that I can have

the DR fax more info so Priscilla said she would sometime this week.

They said they would try to process it as soon as they get it. I felt

bad asking Priscilla to jump through the hoop too. What is the point

of getting the Dr to fill out the paper if they are not going to

believe him?

This just really stinks, but it is really typical of Massachusetts so

I am not too surprised.

Jolynn

[Guest guest]

Here is what is going on. The RMV needs a very explicit diagnosis.

They said lots of people have scoliosis and that they don't all need

placards, so if mine is extreme it needs to reflect that instead of a

general scoliosis diagnosis. It needs to state that I will need

surgery.

While waiting for Dr. Rand's office to fax them more info I decided to

fax them the appointment letter from Dr. Rands office with all the

dates of my surgery, the type of surgery, how many pints of blood and

so on. I am also faxing both approval letters for both procedures from

BCBS. Hopefully this will help expidite things.

I left a message for Priscilla to call me when she faxes the extra

info and then I have a person who works with Mass disability " such and

such " organization who will then call the medical affaris department

of the RMV to get things rolling.

I am not one to sit around and be told " no " when I know that I deserve

a big whopping " yes " . I just know that this will make things way

easier on the whole family. I am just really concerned about getting

this done prior to surgery.

Jolynn

[Guest guest]

I thought CA was bad for stuff, but evidently not. They didn't argue

with me about 5 wks ago, they gave me the placard that day--I left

with it. I can't remember exactly what the dr said, but he mentioned

fusion, arthritis, DDD and scoliosis, I think. I don't walk with a

cane (yet). But then the CA DMV wanted ME to fill out a section about

what I SAY is wrong with me, and I tried to fit everything in that

small section!!! No prob here in CA.

Carol V. (CA)

> >

> > Jolynn,

> >

> > Did DrRand fill out the paperwork for you? I think the qualifying

> > factor is not scoliosis but fused segments in your spine. Ann

> Mc

> > (Rand revision also)had no trouble getting hers....you might want

to

> > email her privately...she is here in MA too.

> >

> > I am sorry you have to jump through hoops when you can barely

walk.

> >

> > Cam

> >

>

[Guest guest]

Bravo! Jolynn, I think that you are doing all the right things. I, too, do not like to take "no" for an answer.

In a message dated 5/17/06 10:28:39 PM, leominsterhsg@... writes:

Here is what is going on. The RMV needs a very explicit diagnosis.

They said lots of people have scoliosis and that they don't all need

placards, so if mine is extreme it needs to reflect that instead of a

general scoliosis diagnosis. It needs to state that I will need

surgery.

While waiting for Dr. Rand's office to fax them more info I decided to

fax them the appointment letter from Dr. Rands office with all the

dates of my surgery, the type of surgery, how many pints of blood and

so on. I am also faxing both approval letters for both procedures from

BCBS. Hopefully this will help expidite things.

I left a message for Priscilla to call me when she faxes the extra

info and then I have a person who works with Mass disability "such and

such" organization who will then call the medical affaris department

of the RMV to get things rolling.

I am not one to sit around and be told "no" when I know that I deserve

a big whopping "yes". I just know that this will make things way

easier on the whole family. I am just really concerned about getting

this done prior to surgery.

Jolynn

[Guest guest]

yea Nola,

That has happened to me a few times....ever since

being on LDN, the intensity of the noise has gone

down......since I stopped drinking coffee....its

gone.....the first time the noise stopped for me, I

was sitting in a quiet room and suddenly heard

nothing. I started yelling because I thought I just

went deaf. I was glad to hear my husband yelling back

at me....he thought I lost my mind.

W2

--- oothappam <oothappam@...> wrote:

> I actually have some good news. I realised this

> morning that one of my symptoms is gone! It's been

> gone for several months, I just didn't notice it

> till now. It was TINNITUS......I had these weird

> noises, tiny but disturbing noises in my head. My

> neurologist said it was tinnitus and that the MS

> was affecting my auditoryy nerve. It was really icky

> whenever it happened and I was getting it every 2

> hours on the average..I realised just now that I

> have not had this in quite a while.It's completely

> gone! I think the LDN did that! I WISH it had helped

> me with my legs or my arm or my fatigue..I stil

> lcant walk at all and aam still in my wheelchair

> .But at least this gives me hope. If the LDN stopped

> on e symptomthen maybe it's working for me and

> might really stop the progress of this idiotic

> disease,so I'm HAPPY!

> Nola

__________________________________________________

[Guest guest]

great news everyone likes news like that!! hope you keep improving:)

>From: wensu baki <wensubar@...>

>Reply-low dose naltrexone

>low dose naltrexone

>Subject: Re: [low dose naltrexone] good news

>Date: Tue, 30 May 2006 11:02:22 -0700 (PDT)

>

>

>

>

>yea Nola,

>

>  That has happened to me a few times....ever since

>

>being on LDN,  the intensity of the noise has gone

>

_________________________________________________________________

Is your PC infected? Get a FREE online computer virus scan from McAfee®

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[Guest guest]

Kathy,

That's interesting about the coffee. I drink two probably about 10 oz. cups a morning and maybe it's time to try to wean myself off of it.

Annette

[Guest guest]

I feel that coffee has a negative influence on me at times with my CNS so I

finally and reluctantly gave it up. Too much stimulation of the nervous

system for me. Best, Kathy

Re: [low dose naltrexone] good news

> yea Nola,

> That has happened to me a few times....ever since

> being on LDN, the intensity of the noise has gone

> down......since I stopped drinking coffee....its

> gone.....the first time the noise stopped for me, I

> was sitting in a quiet room and suddenly heard

> nothing. I started yelling because I thought I just

> went deaf. I was glad to hear my husband yelling back

> at me....he thought I lost my mind.

>

> W2

>

> --- oothappam <oothappam@...> wrote:

>

>> I actually have some good news. I realised this

>> morning that one of my symptoms is gone! It's been

>> gone for several months, I just didn't notice it

>> till now. It was TINNITUS......I had these weird

>> noises, tiny but disturbing noises in my head. My

>> neurologist said it was tinnitus and that the MS

>> was affecting my auditoryy nerve. It was really icky

>> whenever it happened and I was getting it every 2

>> hours on the average..I realised just now that I

>> have not had this in quite a while.It's completely

>> gone! I think the LDN did that! I WISH it had helped

>> me with my legs or my arm or my fatigue..I stil

>> lcant walk at all and aam still in my wheelchair

>> .But at least this gives me hope. If the LDN stopped

>> on e symptomthen maybe it's working for me and

>> might really stop the progress of this idiotic

>> disease,so I'm HAPPY!

>> Nola

>

>

> __________________________________________________

>

[Guest guest]

It is so strange. Sometimes I can tolerate it for months and then one day I start having neurological symptoms right after drinking it and I did this repeatedly just to see if it was a freak occurrence but it was the coffee. I hope to drink it again one day!!!!! Best, Kathy

Re: [low dose naltrexone] good news

Kathy, That's interesting about the coffee. I drink two probably about 10 oz. cups a morning and maybe it's time to try to wean myself off of it. Annette