Re: NCC/dexa/forteo/pain/CTO jacket

February 4, 2008

Hi all, I too have severe osteoporosis at the age of 37. I am on a

supplement that is awesome! the doctor took me off of actonel and other

medications I

was taking because it did not have the effect of the supplement and actually

the meds were not helping in stablizing the osteoporosis. I have it worse in

my lower back and hips.

Joleen

decompressed 09/07/07

ACM 1 10mm

In a message dated 2/4/2008 3:01:08 P.M. Mountain Standard Time,

lexie@... writes:

Darlene & Ali,

Please continue to post updates to the group. This may not be chiari

information but it is sure related. Lots of us are dealing with

osteopenia/osteoporPlease continu

God bless,

Lexie

February 4, 2008

Hi Ali,

I know how you feel. I also have a failed decompression and CCF b/c of

osteopenia. I had my surgery last Feb. 8th. I was in severe pain

afterwards with worse headaches then before surgery. I saw Dr. B. in May

after another Myelogram, (I can't have MRI's). He told me the vertebrae

look mushy and the hardware had settled. After seeing an endocrinologist,

and having a bunch of blood work and Dexa Scan, I was diagnosed with

osteopenia and have been on the Forteo injections for the past 6 mos.

The Dexa Scan is a very simple test...painless. Scan that looks at your

bones in your spine, hip, or wrist. It tells you if your bones are

deteriorating due to osteoporosis.

The CTO jacket is not like a halo. It is an Aspen Collar with a stiff

jacket to prevent your head and neck from moving. I use the CTO jacket,

Aspen Collar, Inversion Table. At my last appointment in Dec. with Dr. B,

the vertebrae are not healed yet. I return again in June. When he does do

my revision, whenever the vertebrae heal, I will need to wear a halo for 4

mos.

There are days when I want to cry as well. I had expected things to improve

as they did after my TC surgery. I never expected this. It will be a year

on Feb. 8th. since my surgery. I am trying the best I can to take one day

at a time. It has been a long year and I know this year is going to be long

also. I just hope and pray after the next revision, I will have the relief

I expected the first time around.

After 29 surgeries, and I don't know how many appointments and tests over 16

years, I was finally diagnosed with ACM, CCI, EDS, Cranial settling, TSC,

Mitral Valve Prolapse, osteopenia. I thought that I was at the end of

surgeries, tests, medications, appointments, but I am not.

I have a neurostimulator implanted that needs to be removed and I hope that

by June

I can have MRI's to help with my diagnosis.

I know a few others have had failed CCF also. I don't know if they are to

osteopenia or osteoporosis.

Please e-mail me privately. I would like to know how you were diagnosed

with osteoporosis

and why you have had all your hardware removed.

I would like to keep updated with you since we are experiencing the same

problem. It is good to know that you are not alone.

Darlene

-- NCC/dexa/forteo/pain/CTO jacket

Dear Group:

Hi, has anyone had a DEXA scan, does anyone deal with osteoporosis? ( I am

38) It caused a failed CCF. I don't know what forteo is.

I've never worn a CTO jacket, is it as much fun as a halo?

I feel adrift right now and with the pain, I am depressed.

I'm kinda like, if my ADL's are already LOW, and I hurt, whats the point?

The pain is real, the fatigue is debilitating, and I am about to cry.

I feel for those whose posts I've read who have no insurance, and finances

are an issue, I understand. Thanks to Kathleen for the website.

thanks, ali

Ali,

ACM I,(10 & 12 mm), Spina Bifida Occulta, Tethered Cord, Ehlers Danlos,

Eagles Syndrome.

14 years undx'd, residual symptoms persist.

Decompression w/ lam 2004, Cranio-cervical fusion 2005. fusion revision 2006

Tethered cord surgery 2006,with laminotomies and laminectomy, Fusion

Hardware removal 2007, Bremer Halo applied 2007, Halo off 2007.

Four children, three dx'd with different variations of ACM and SB, TCS.

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

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now.

February 4, 2008

Darlene & Ali,

Please continue to post updates to the group. This may not be chiari

information but it is sure related. Lots of us are dealing with

osteopenia/osteoporosis and CCI.

God bless,

Lexie

February 4, 2008

Lexie wrote:

Please continue to post updates to the group. This may not be chiari

information but it is sure related. Lots of us are dealing with

osteopenia/osteoporosis and CCI.

Kathleen's response:

It is Chiari related for many of us, and feel free to discuss this as much

as possible on the list.

My CCF failure is due to the rods bending over my plate. We will replace my

old plate with one that has rods attached.

The new CTO that is being used by TCI is the 's CTO. Try this link:

http://tinyurl.com/2ub4k8

CCI will add a section to the website with halo hints. Having been in one in

1999, I knew what to expect. It sounds like several on the list will wear

one after fusion because of osteoporosis. I've had lots of private email

asking me what it is like to wear a halo, so feel free to ask me anything.

I wish everyone the best, and as many pain free days as possible,

Kathleen

Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed

with craniocervical instability, Ehlers Danlos, and Tethered Cord Syndrome,

surgery for everything but EDS since 1998.

http://chiariconnectioninternational.com/

February 4, 2008

I also have (had) osteoporosis. I've had the TC surgery and am headed

back for the fusion.

Dr. B suggested six months of some kind of super-duper bone

enhancement treatment. I have a hematologist/oncologist, and I did a

lot of research on the different ones available. (BTW, I had been

taking ACtonel for four years before this discussion for the fusion).

I ended up doing " pamidronate " (generic name) which is the old

standby, I'm told, for those with multiple myeloma (bone cancer,

which I have a pre-condition for).

I had six trx of pamidronate, which meant once a month going to

cancer center and having a 3 hour IV drip.

I just had my DEXA redone and amazingly, my bones are better! I am 57

and post menopausal women are usually pretty settled into their

osteoporosis. My hip stats were 101% of normal for a woman my age

(that's good!), and my spine stats were 92%, which is what put me

into the osteopenia group (osteopenia being the precursor to

osteoporosis).

I have an appt on Feb. 11 with my oncologist and he will give me his

opinion on how I should do with the fusion surgery, then I plan to go

ahead and schedule it. I'm taking calcium like crazy, too.

I also have a CTO jacket, but have stopped using it because in my

case (which is different from probably most here and their reasons

for instability), it didn't cradle behind my head enough and causes

me a lot more symptoms.

I too will have to wear a halo post fusion, per Dr. B's surgical plan

for me.

The DEXA scan is the least invasive of any test I've ever had done.

Just lie on a table and up above you, a machine scans over you. The

technician can even stay right there beside you while it is going on.

My recommendation is that you research the three super drugs

available for building bone. One of them, perhaps it's Forteo, should

not be given to anyone with jaw pain (which I have) as it can cause

weakening in the jawbone. I can't remember now why I couldn't take

the other drug, but it was a good reason. Do your homework online

because your doctors just can't know all these little nuances about

you and your health like you do. I never had any side effects from

the pamidronate. These things are very expensive, BTW. I saw the bill

to my insurance for the six month course of trx and it was something

like $30,000.

Virginia

4 plc fracture of the C1, Tethered Cord, " acquired chiari (not acm),

5.7 mm " and atlanto occipital dislocation due to equestrian accident,

2004

TC surgery, Nov. 2007 at TCI. CC Fusion upcoming.

>

> Dear Group:

>

> Hi, has anyone had a DEXA scan, does anyone deal with

osteoporosis? ( I am 38) It caused a failed CCF. I don't know what

forteo is.

>

> I've never worn a CTO jacket, is it as much fun as a halo?

>

> I feel adrift right now and with the pain, I am depressed.

> I'm kinda like, if my ADL's are already LOW, and I hurt, whats

the point?

>

> The pain is real, the fatigue is debilitating, and I am about to

cry.

>

> I feel for those whose posts I've read who have no insurance, and

finances are an issue, I understand. Thanks to Kathleen for the

website.

>

> thanks, ali

>

> Ali,

> ACM I,(10 & 12 mm), Spina Bifida Occulta, Tethered Cord, Ehlers

Danlos, Eagles Syndrome.

> 14 years undx'd, residual symptoms persist.

>

> Decompression w/ lam 2004, Cranio-cervical fusion 2005. fusion

revision 2006. Tethered cord surgery 2006,with laminotomies and

laminectomy, Fusion Hardware removal 2007, Bremer Halo applied 2007,

Halo off 2007.

>

> Four children, three dx'd with different variations of ACM and SB,

TCS.

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with Yahoo! Mobile.

Try it now.

>

February 4, 2008

It is also hard for some people to get Forteo approved by your insurance

company. This is even after phone calls by your doctor. The insurance

companies would like you try other things first. Forteo actually builds

bone and the treatment is daily injections for two years. After this time

period, you should be back to 100%. I was approved with one quick letter to

my insurance company. I had tried one other drug (can't recall which it is

at the moment) and it made me deathly ill. Also, with the hardware settling

the insurance approved it immediately.

Darlene

-- Re: NCC/dexa/forteo/pain/CTO jacket