Re: Jinny

[Guest guest]

Thanks so much Beth- it helps to have some encouraging news!! We do not

have an apt as of yet- it's my fault - not theirs. It's taken a while to

get Chris' rheumatology records and go through them all, I've been

researching family info, my husband has had some health issues going on,

we've been out of town, I'm homeschooling 4 kids etc. so I haven't

gotten all the info faxed back to them yet so that they can make an apt.

Maybe this will give me the burst of energy that I need!!! :-)

Thanks

Jinny

On Sun, 10 Feb 2008 15:21:40 -0800 (PST) Beth Yohnk

<yohnkmom@...> writes:

> Hi Jinny:

> I just got off the phone with our local EDS President and she was

> giving me some names of genetics doctors locally that we might be

> interested in taking Hannah to. I mentioned that you were in a

> similar situation with and that you were seeing Dr. Gottesman

> soon. She wanted me to tell you that you are in excellent hands!

> He is on the advisory board of the EDS foundation and extremely

> knowledgeable. Do you know when your appointment is yet?

>

> Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

>

> Sending prayers & happy thoughts,

> Beth :-)

>

>

[Guest guest]

Hi Jinny,

I've had my Boston Scientific scs for 2 1/2 years. That 5 years is the

guaranteed " warranty " on the device. My reps have told me I could have the same

one for over 10 years, or never have to have it replaced (I'm 53). So it's

guaranteed for a certain # of years, but they are saying they last much longer.

I'm sure there are the exceptions, let's hope neither of us are!!!

Take Care,

B. in TEXAS

Until one has loved an animal, part of their soul remains in darkness

________________________________

From: irishrose9220 <irishrose92205@...>

Stimulator

Sent: Thursday, May 14, 2009 11:49:54 AM

Subject: Question for the group

Hi my name is Jinny and I am a newbie.

I have an Advanced Bionics SCS (now Boston Scientific) placed in 2006. After a

recent hospitalization a neuro told me the SCS will only be good for 5 years??

Is this true??

Also has anyone else had trouble with the SCS not relieving their pain?? It did

when first put in but has slacked off...I was also on methadone but I lost my

pain management specialist in February and had to wean off it....now I am back

in daily pain and walking hunched over...the other docs in the area seem to

think that with a SCS you don't need pain meds, but I am not getting relief.

Any suggestions???

Thanks,

Jinny

------------------------------------

[Guest guest]

Jinny,,

  I am so sorry to hear you are still having so many problems with your stem..

Has your rep tried doing any adjustments? most of the time that helps... Please

don't feel like your dumping on us.. that's what we are here for.. I wish there

was something I could do to help you... Please feel free to call me if you would

like to talk... home 419-586-2059 or cell 419-302-7064.. I'm always here for

anyone that needs to talk...

 soft hugs

       T

 group moderator

 lisa

From: Jinny -Donohue <irishrose92205@...>

Subject: Re: Digest Number 767

Stimulator

Date: Sunday, May 17, 2009, 7:04 PM

After much contemplation I came to a decision today....I am going to consult

another doctor , have the stimulator taken out and have the pain pump put in.? I

am so done with these doctors and the stimulator.? I only feel bad that Medicare

had to pay so much for something that failed miserably.? My body feels so

wracked with pain..I'm sorry to dump this on ya'll but I have to tell someone...

Digest Number 767

Spinal-Cord- Stimulator

Messages In This Digest (3

Messages)

1a.

Re: Question for the group

From:

Jinny -Donohue

1b.

Re: Question for the group

From:

Mike

2.

Fw: Spine-health eAlert: Depression and Back Pain

From:

Mike M

View All Topics | Create New Topic

Messages

1a.

Re: Question for the group

Posted by: " Jinny -Donohue "

irishrose92205@ aim.com

?

irishrose9220

Sat May?16,?2009 4:13?am (PDT)

Hi Mike,

I live in Port St Lucie Florida.? I have been discharged from Dr o Duran's

office, the one that but my stimulator in.? My former doctors Dr Alvarez and

Levine won't take me back because I left them to go to Dr Duran (they had a

nasty split) and the amount of methadone Duran was RX'ing me (480 tabs).? Duran

only wrote it like that for an if you need it, I usually only medicated every

morning before I got up.? The 480 lasted me months saved me from having to go

see Duran every month and because I am a nurse and we had a 6 year relationship

he knew he could trust me.? That has been my problem, others docs see that and

they think I'm drug seeking.? I was recently hospitalized for 11 days with a

massive Gi bleed- it took me three 011 trips to the ER before they took me

seriously, they too thought I was drug seeking.? I have gone to the Nat'l Pain

Institute (Dr Afong), he's the one that told me no more pain pills with the SCS,

he even took my bottle of

Percocet away for breakthrough pain!

I have been off methadone now for a month.? My pain is once again off the charts

and my SCS doesn't even come close to taking it away.? The pain literally

exhausts me..I have no energy and I am hubched over again.? Between that and my

autoimmune diseaase flaring I am totally miserable and unhappy.? I just feel I

have no quality of life, living this way.? I apologize for sounding so negative,

but that's how I feel.? I had one neurologist come in to see me in the

hospital.? He told me the SCS will become ineffective and the only way to get a

grip on my pain is through anInpatient program in Miami, PT and learn how to

mentally block it.? That's crap.? My back has been opened 12 times due to

reconstructive back surgery, and osteomyelitis with MRSA, that almost killed me

it was so bad they had to airlift me to the U of Florida at Shands.? I am so far

beyond PT and biofeedback, Tylenol.? I have been told the scar tissue is so

dense in my back it's as tough as

gristle in a steak, thewy couldn't even get through it to do the epidurals,

rhizotomies. ? I am getting a little relief from Lidoderm patches.

So Mike that's where I'm at, thanks for listening.? There are also 2 pain

clinics that opened in my neighborhood recently- Dr Fox and Dr King- cash only

so you know what's going on there....must be another pill factory.? All you want

for $400 cash.

Have a good day, I look forward to hearing from you...

Jinny