New to the group...

[Guest guest]

I would go to Duke before going to NY...I know lots of folks speak

extremely highly of Dr. Fuchs. Could you go there? How old is your daughter,

. Prayers and hugs your way, Randee

In a message dated 3/20/2011 3:22:21 P.M. Central Daylight Time,

youngolewife5@... writes:

Hi! My name is . My daughter, , has Chiari Malformation,

Syringomyelia, and Tethered Cord Syndrome. She also has an undiagnosed

connective tissue disorder.

Our family lives in Mississippi, where there are not very many specialist

for these conditions. We have traveled all over this state and neighboring

ones trying to find her help! We were able to find a doctor in NC that

diagnosed her in 2007 with the CM and SM, and also performed a Chiari brain

decompression on her. Then, a doctor in Hattiesburg diagnosed her with

Tethered Cord Syndrome in 2009, and released her cord that year.

Now, has been getting worse. We have very limited insurance, so we

have only been able to see doctors locally. And at her last neurosurgeon

appt (with a doctor whom practices at LeBonheur Children's Hospital) she was

told her pain was just myo-facial pain and that she just needed to

exercise more and lose weight! Yes. Really.

This is a child that is in pain each and every moment of her life. She

wakes up in pain through out the night! She goes to bed, trying to sleep with

pain!! Currently, she has nothing prescribed for her pain except for a

lidocaine cream compounded at a pharmacy!! And this is just not doing anything

for her!

In the past six months, has started having these " episodes " of

back pain. At first, we wondered if they were her kidneys. But assumed that

kidney stone pain usually doesn't subside just randomly, and then return. We

felt that if it was a kidney stone, it would escalate requiring medical

attention, as my husband's kidney stone had.

Plus, this pain is right at her TC releases surgical scar. And then we

noticed that her scar would sometimes bulge and turn pinkish/red when she had

these episodes. This pain was what urged us to make the appt with the

neurosurgeon, whom said it was just myofacial pain! And that it was most likely

NOT that her cord had re-tethered!

is feeling a pulling sensation around her scar area, and she is

having stabbing pain that she describes like as if someone where inserting a

too-large catheter into her spinal cord. Does that make sense to any one?

I am concerned because of the pressure headaches that she is having that

spinal fluid could be building up or pooling causing a leak or something. Or

are her syrinx growing!?! It is so hard to be here in Mississippi, and to

not be able to get the help that she needs.

We have been hoping to be able to get her to The Chiari Institute in New

York, to see what their opinions would be. But, that is many miles and

dollars away at this point!!!

Thank you for any insight or thoughts you may have!

Mom of 6 wonderful blessings from the Lord

[Guest guest]

Hi,

Have you tried the doctor you saw in NC - explaining the insurance issues?

Maybe he'll see you pro-bono where he saw her before - even if for a diagnosis

and prescription(s). The scripts could get her through until you could see a

different local nsg with the NC nsg's diagnosis in hand.

I and others know what it's like to be in pain and not have the medicine to help

in hand - yet. The wait seems tortuous (and it is), but you have to keep hope.

Does ice or heat help the pain in the back?

Kathy

New to the group...

Hi! My name is . My daughter, , has Chiari Malformation,

Syringomyelia, and Tethered Cord Syndrome. She also has an undiagnosed

connective tissue disorder.

Our family lives in Mississippi, where there are not very many specialist for

these conditions. We have traveled all over this state and neighboring ones

trying to find her help! We were able to find a doctor in NC that diagnosed her

in 2007 with the CM and SM, and also performed a Chiari brain decompression on

her. Then, a doctor in Hattiesburg diagnosed her with Tethered Cord Syndrome in

2009, and released her cord that year.

Now, has been getting worse. We have very limited insurance, so we

have only been able to see doctors locally. And at her last neurosurgeon appt

(with a doctor whom practices at LeBonheur Children's Hospital) she was told her

pain was just myo-facial pain and that she just needed to exercise more and lose

weight! Yes. Really.

This is a child that is in pain each and every moment of her life. She wakes

up in pain through out the night! She goes to bed, trying to sleep with pain!!

Currently, she has nothing prescribed for her pain except for a lidocaine cream

compounded at a pharmacy!! And this is just not doing anything for her!

In the past six months, has started having these " episodes " of back

pain. At first, we wondered if they were her kidneys. But assumed that kidney

stone pain usually doesn't subside just randomly, and then return. We felt that

if it was a kidney stone, it would escalate requiring medical attention, as my

husband's kidney stone had.

Plus, this pain is right at her TC releases surgical scar. And then we noticed

that her scar would sometimes bulge and turn pinkish/red when she had these

episodes. This pain was what urged us to make the appt with the neurosurgeon,

whom said it was just myofacial pain! And that it was most likely NOT that her

cord had re-tethered!

is feeling a pulling sensation around her scar area, and she is having

stabbing pain that she describes like as if someone where inserting a too-large

catheter into her spinal cord. Does that make sense to any one?

I am concerned because of the pressure headaches that she is having that

spinal fluid could be building up or pooling causing a leak or something. Or are

her syrinx growing!?! It is so hard to be here in Mississippi, and to not be

able to get the help that she needs.

We have been hoping to be able to get her to The Chiari Institute in New York,

to see what their opinions would be. But, that is many miles and dollars away at

this point!!!

Thank you for any insight or thoughts you may have!

Mom of 6 wonderful blessings from the Lord

[Guest guest]

>

> I would go to Duke before going to NY...I know lots of folks speak

> extremely highly of Dr. Fuchs. Could you go there? How old is your

daughter,

> . Prayers and hugs your way, Randee

>

>

>

Hi, Randee!

Thank you for your reply. My daughter, , is sixteen.

Dr. Fuchs would be just as much out of network for as would TCI,

although I am sure his clinic would be much cheaper. currently has MS

Medicaid, which will not allow her to travel out of state or out of network,

unless it is in an emergency situation.

But I am very curious, what basis do you say that Duke would be better than NY?

Is it that they are smaller or do you feel that Dr. Fuchs would provide superior

care because of his skills? I am truly very curious as to why this is your

opinion, if you don't mind sharing it with me.

Thank you for sharing your opinion and suggestion!

[Guest guest]

Put this question out to the board. People rave about Fuchs, who I

thought might be a bit closer, though a plane is a plane .... People have many

complaints it seems about TCI. There is a Dr. Frim in Chicago who people

also rave about. These folks seem to be the major experts in the field of

tethered cord and see children. We have had good experiences wherever we

have lived with our NSGs, most recently with Children's Hospital in Saint

Louis (we live 2 hours away) but at this point you clearly want the main

experts...throw out the question in the subject line perhaps " who do you think

is

the best MD for a 16yo with tethered cord " and/or " what is your opinion of

The Chiari Institute. " We had a terrific experience at ish Rite in

Atlanta but our NSG is no longer there. Pls keep us posted... hugs from a

Mom to a Mom, Randee PS My daughter is now 20 and has far less pain than

your girl but is on Neurontin and finds it helpful.

In a message dated 3/20/2011 7:41:30 P.M. Central Daylight Time,

youngolewife5@... writes:

>

> I would go to Duke before going to NY...I know lots of folks speak

> extremely highly of Dr. Fuchs. Could you go there? How old is your

daughter,

> . Prayers and hugs your way, Randee

>

>

>

Hi, Randee!

Thank you for your reply. My daughter, , is sixteen.

Dr. Fuchs would be just as much out of network for as would TCI,

although I am sure his clinic would be much cheaper. currently has

MS Medicaid, which will not allow her to travel out of state or out of

network, unless it is in an emergency situation.

But I am very curious, what basis do you say that Duke would be better

than NY? Is it that they are smaller or do you feel that Dr. Fuchs would

provide superior care because of his skills? I am truly very curious as to why

this is your opinion, if you don't mind sharing it with me.

Thank you for sharing your opinion and suggestion!

[Guest guest]

,

I would steer clear of TCI. They have been sued and currently have pending

lawsuits. The initial lawsuit, a girl was anesthestized and the surgeon who

was supposed to do her surgery was on vacation in FL and the other surgeon

refused to do her surgery. Then, they lied to the patient and her family

saying her surgeon had a family emergency in FL. Dr. Bolognese had his

license suspended and Dr. Milhorat resigned. The hospital suspended their

privileges for a period of time (seems the have since gotten them back).

Regardless of the number of lawsuits against them, I wouldn't have gone to

them even before that. None of their MDs are in-network for any insurance,

leaving families with a heavy financial burden that wouldn't happen at

another facility. Even if Dr. Frim or Dr. Fuchs would be OON for you, odds

are their bills would be lower. First, they are much more likely to accept

what would be paid to an IN MD would be paid by insurance, forgoing the

additional fees for an OON MD. Second, these MDs have been known to do

pro-bono work. Third, these MDs are used to working within the confines of

insurance companies URC schedules - the MDs at TCI are not. I have heard of

families stuck with $80K in physician charges alone at TCI. TCI likes to

make it sound like people with TC or Chiari cannot get the care they provide

from any other MD in the world and this is NOT true.

When I was Dx with my brain tumor, I sent my scans around the country and

always received opinions free of charge - and from some very reputable MDs.

I tried to get one from Barrows Neurological Institute, and Dr. Spetzler

wanted $600 just to look at them (and this was almost 15 years ago). I did

just fine and got excellent opinions w/o paying for them. The same goes for

the MDs at TCI - they will not review films free of charge.

The other concern I have about TCI, is that if their techniques are so

special and different than what other neurosurgeons are doing, why haven't

they published them and shared them in peer reviewed journals? Why do they

try to keep them a secret from the rest of the medical community? Wouldn't

they want everyone who had TC or Chiari to be able to have their surgical

technique used if it is so superior? I also have a concern about their

surgical technique in that if it is so unique and different from what is

standard practice, then it is experimental and needs to be documented as

such, including being subject to an institutional IRB (which has strict

human subject safeguards in place and even more strict informed consent

procedures than regular surgery). In fact, some of the lawsuits concern

this very issue.

I have also heard some pretty nasty horror stories about their aftercare -

rather lack thereof.

Overall, I just don't think they provide anything special that you cannot

get from another Pedi neurosurgeon that is highly skilled in TC and/or

Chiari. Frim and Fuchs are two such neurosurgeons.

If Frim of Fuchs aren't in the cards, I would look into going to a Shriners

Hospital. Shriners Hospitals, while I don't know of anyone on the list who

has used them, are very highly regarded and will work with your financial

situation

At the very least, you need to find someone to handle her pain management in

the meantime. I have been Rx lidocaine patches and they were worthless. I'm

sure she has neuropathy and should be on something to help manage it. Has

she had a followup urodynamic study to see if there have been any changes

that might indicate a symptomatic retether?

Jenn

On Sun, Mar 20, 2011 at 8:41 PM, Y

>

> Hi, Randee!

>

> Thank you for your reply. My daughter, , is sixteen.

>

> Dr. Fuchs would be just as much out of network for as would TCI,

> although I am sure his clinic would be much cheaper. currently has

> MS Medicaid, which will not allow her to travel out of state or out of

> network, unless it is in an emergency situation.

>

> But I am very curious, what basis do you say that Duke would be better than

> NY? Is it that they are smaller or do you feel that Dr. Fuchs would provide

> superior care because of his skills? I am truly very curious as to why this

> is your opinion, if you don't mind sharing it with me.

>

>

>

>

[Guest guest]

I hope you are able to get to see a pediatric nsg very soon - for a diagnosis at

the very least and hopefully some answers which will help alleviate her pain in

the long run.

How old is your daughter?

Do you have a pain clinic with your insurance plan or just as good - a

physiatrist?

Kathy

Re: New to the group...

Hi Kathy!

Thanks for your reply. 's doctor in NC (Dr. Rosner) is at a

small hospital which is no longer doing pediatric surgeries.

Although we are huge fans of his and highly recommend him for adults, we do

not feel that expending time and monies to travel to see him would be the best

pool of our resources at this time.

And yes, she usually REQUIRES an ice pack for the back of her neck and head

whenever she is lying down or sitting in a chair, in order to keep swelling and

pain to a minimum. As far as for her low back, a hot rice bag will sometimes

feel good for muscle pain (and we also try the lidocaine cream to see what/if it

can help), but usually neither ice nor heat make any difference with this type

of pain. It is so deep, that sometimes she feels it through her abdomen!

I really appreciate your ideas and suggestions!

>

> Hi,

>

> Have you tried the doctor you saw in NC - explaining the insurance issues?

>

>Does ice or heat help the pain in the back?

>

> Kathy

>

>

[Guest guest]

Hi Jenn and All,

I was wondering just what Jenn wrote below about Shriner's. My father-in-law

was a Mason and helped many kids get the care they needed free of charge. I

don't know the protocol any longer, but it used to be that you either needed to

be referred by a Shriner/Mason or attend one of their screening clinics. If you

go to their website, I'm sure you can find information on your local Shriner's

hospital and find out how you can apply/see if they can help your daughter.

Insurance wouldn't matter ... I know they help children dx'ed with SB which

would lead me to think that they would also help those with tethered

cord/Chiari.

Also - As everyone has mentioned, there are doctors that will review

scans/symptoms/medical hx for no charge. Not sure about a surgery because that

involves many different types of fees, but it's definitely worth a try. Doesn't

Medicaid have an appeal process for out of network/state doctors/surgeries? We

all know that local nsgs have experience, but 8 untetherings (for eg) is a lot

different than 75 with a nsg who works at a hospital where this procedure is

done more frequently. I would think that you could fill a typed page of

differences in outcome and quality of care when comparing little to no

experience to lots - although, local care doesn't always mean poor care.

I have to agree with (think it was Randee) who said she has found good care at

local hospitals. When I lived in Maine and had access to very good nsgs there

along with Boston - always ended up choosing my nsg in Maine for my

untetherings. Now that I live in NC, I have again found excellent nsgs. I

haven't gone to Duke - it's only an hour from me, but I've found that nsgs near

me are great, well-versed and two are nsgs that I would consider for surgery.

(However, of late I have been wondering why I still just don't try Dr. Fuchs at

Duke since it would only be a copay and short drive).

Where there's a will, there's a way - but I do hope you are able to find a good

pain clinic or physiatrist for your daughter. Her pain has to be interrupting

her life and if you can get some relief for her you'll be able to take a deep

breath and dig in for finding a good nsg. If you need a referral to a pain

clinic, you can search for one that is local and is listed with pain physician

associations.

Kathy

If Frim of Fuchs aren't in the cards, I would look into going to a Shriners

Hospital. Shriners Hospitals, while I don't know of anyone on the list who

has used them, are very highly regarded and will work with your financial

situation

At the very least, you need to find someone to handle her pain management in

the meantime. I have been Rx lidocaine patches and they were worthless. I'm

sure she has neuropathy and should be on something to help manage it. Has

she had a followup urodynamic study to see if there have been any changes

that might indicate a symptomatic retether?

Jenn

[Guest guest]

yes, I believe it's of the group has used Shriners and I

believe ish Rite where we were in Atlanta is a Shriners Hospital

though we had great insurance and paid just a very small co-pay and it was a

great place with a great surgeon. The treatment in terms of nurses and every

single staff was the best of anywhere. Excellent thought, Jenn and Kathy.

Randee

In a message dated 3/21/2011 4:30:12 A.M. Central Daylight Time,

kmoulton@... writes:

Hi Jenn and All,

I was wondering just what Jenn wrote below about Shriner's. My

father-in-law was a Mason and helped many kids get the care they needed free of

charge. I don't know the protocol any longer, but it used to be that you either

needed to be referred by a Shriner/Mason or attend one of their screening

clinics. If you go to their website, I'm sure you can find information on

your local Shriner's hospital and find out how you can apply/see if they can

help your daughter. Insurance wouldn't matter ... I know they help children

dx'ed with SB which would lead me to think that they would also help those

with tethered cord/Chiari.

Also - As everyone has mentioned, there are doctors that will review

scans/symptoms/medical hx for no charge. Not sure about a surgery because that

involves many different types of fees, but it's definitely worth a try.

Doesn't Medicaid have an appeal process for out of network/state

doctors/surgeries? We all know that local nsgs have experience, but 8

untetherings (for

eg) is a lot different than 75 with a nsg who works at a hospital where this

procedure is done more frequently. I would think that you could fill a

typed page of differences in outcome and quality of care when comparing little

to no experience to lots - although, local care doesn't always mean poor

care.

I have to agree with (think it was Randee) who said she has found good

care at local hospitals. When I lived in Maine and had access to very good

nsgs there along with Boston - always ended up choosing my nsg in Maine for my

untetherings. Now that I live in NC, I have again found excellent nsgs. I

haven't gone to Duke - it's only an hour from me, but I've found that nsgs

near me are great, well-versed and two are nsgs that I would consider for

surgery. (However, of late I have been wondering why I still just don't try

Dr. Fuchs at Duke since it would only be a copay and short drive).

Where there's a will, there's a way - but I do hope you are able to find a

good pain clinic or physiatrist for your daughter. Her pain has to be

interrupting her life and if you can get some relief for her you'll be able to

take a deep breath and dig in for finding a good nsg. If you need a

referral to a pain clinic, you can search for one that is local and is listed

with

pain physician associations.

Kathy

If Frim of Fuchs aren't in the cards, I would look into going to a Shriners

Hospital. Shriners Hospitals, while I don't know of anyone on the list who

has used them, are very highly regarded and will work with your financial

situation

At the very least, you need to find someone to handle her pain management

in

the meantime. I have been Rx lidocaine patches and they were worthless. I'm

sure she has neuropathy and should be on something to help manage it. Has

she had a followup urodynamic study to see if there have been any changes

that might indicate a symptomatic retether?

Jenn

[Non-text portions of this message have been removed]

[Guest guest]

Hi ,

Search everywhere to see if you can find other families who have fought your

state medicaid for out of network coverage and won. Often, even those of us with

private insurance have to put up a fight to see the specialists we believe are

best for us/our child.

My daughter's cord was released before her adoption from China, so we haven't

had to do that surgery, but I have heard of Drs. Frim and Fuchs many times.

Sofia has VACTERL association, so I belong to LOTS of different yahoo groups

that have LOTS of kiddos with TC. If I was concerned about TC, I would

definitely be looking into both of these doctors and I've also heard Dr. Handler

in Denver is good. I'm not positive if all of these doctors will review records

via email for free, but I think they do. Sometimes, if you can get the doctor

to comment BEFORE you go to see him/her, it gives you great information to

include in your appeal to go out of network.

Good luck!

Stacey

mom to Sofia age 5 VACTERL

>

> ,

>

> I would steer clear of TCI. They have been sued and currently have pending

> lawsuits. The initial lawsuit, a girl was anesthestized and the surgeon who

> was supposed to do her surgery was on vacation in FL and the other surgeon

> refused to do her surgery. Then, they lied to the patient and her family

> saying her surgeon had a family emergency in FL. Dr. Bolognese had his

> license suspended and Dr. Milhorat resigned. The hospital suspended their

> privileges for a period of time (seems the have since gotten them back).

>

> Regardless of the number of lawsuits against them, I wouldn't have gone to

> them even before that. None of their MDs are in-network for any insurance,

> leaving families with a heavy financial burden that wouldn't happen at

> another facility. Even if Dr. Frim or Dr. Fuchs would be OON for you, odds

> are their bills would be lower. First, they are much more likely to accept

> what would be paid to an IN MD would be paid by insurance, forgoing the

> additional fees for an OON MD. Second, these MDs have been known to do

> pro-bono work. Third, these MDs are used to working within the confines of

> insurance companies URC schedules - the MDs at TCI are not. I have heard of

> families stuck with $80K in physician charges alone at TCI. TCI likes to

> make it sound like people with TC or Chiari cannot get the care they provide

> from any other MD in the world and this is NOT true.

>

> When I was Dx with my brain tumor, I sent my scans around the country and

> always received opinions free of charge - and from some very reputable MDs.

> I tried to get one from Barrows Neurological Institute, and Dr. Spetzler

> wanted $600 just to look at them (and this was almost 15 years ago). I did

> just fine and got excellent opinions w/o paying for them. The same goes for

> the MDs at TCI - they will not review films free of charge.

>

> The other concern I have about TCI, is that if their techniques are so

> special and different than what other neurosurgeons are doing, why haven't

> they published them and shared them in peer reviewed journals? Why do they

> try to keep them a secret from the rest of the medical community? Wouldn't

> they want everyone who had TC or Chiari to be able to have their surgical

> technique used if it is so superior? I also have a concern about their

> surgical technique in that if it is so unique and different from what is

> standard practice, then it is experimental and needs to be documented as

> such, including being subject to an institutional IRB (which has strict

> human subject safeguards in place and even more strict informed consent

> procedures than regular surgery). In fact, some of the lawsuits concern

> this very issue.

>

> I have also heard some pretty nasty horror stories about their aftercare -

> rather lack thereof.

>

> Overall, I just don't think they provide anything special that you cannot

> get from another Pedi neurosurgeon that is highly skilled in TC and/or

> Chiari. Frim and Fuchs are two such neurosurgeons.

>

> If Frim of Fuchs aren't in the cards, I would look into going to a Shriners

> Hospital. Shriners Hospitals, while I don't know of anyone on the list who

> has used them, are very highly regarded and will work with your financial

> situation

>

> At the very least, you need to find someone to handle her pain management in

> the meantime. I have been Rx lidocaine patches and they were worthless. I'm

> sure she has neuropathy and should be on something to help manage it. Has

> she had a followup urodynamic study to see if there have been any changes

> that might indicate a symptomatic retether?

>

> Jenn

>

> On Sun, Mar 20, 2011 at 8:41 PM, Y

>

> >

> > Hi, Randee!

> >

> > Thank you for your reply. My daughter, , is sixteen.

> >

> > Dr. Fuchs would be just as much out of network for as would TCI,

> > although I am sure his clinic would be much cheaper. currently has

> > MS Medicaid, which will not allow her to travel out of state or out of

> > network, unless it is in an emergency situation.

> >

> > But I am very curious, what basis do you say that Duke would be better than

> > NY? Is it that they are smaller or do you feel that Dr. Fuchs would provide

> > superior care because of his skills? I am truly very curious as to why this

> > is your opinion, if you don't mind sharing it with me.

> >

> >

> >

> >

>

>

>

[Guest guest]

I'm not sure how people get approved to be seen at Shriners. It was my

understanding that they do not charge the patient anything beyond what their

insurance pays or will cover 100% of the care if they don't have insurance

(or insurance that covers their facility). According to the link below, care

at Shriners is free of charge to the patient and their family. The link to

Shriners below has their history, lists their facilities (as well as the

specialties of each facility) and the toll free number to apply for care.

http://www.shrinersokc.org/hospitals.html

I agree with Kathy and others about local care. I have had all my surgeries

done locally. The first at Piedmont Hospital and the second and third were

done at Emory University Hospital by the Chief of Pediatric Neurosurgery at

Egleston @ Emory. He has since left and gone to Oklahoma University. While

I didn't do it for my TC, I have gotten opinions from across the country

when I was Dx with my brain tumor in 1997. I mailed my big, heavy packets of

films to MDs all over the US. You can find very talented MDs that will

review your films for free (and its a heck of a lot easier now that these

files are digital).

You can also go to the SBAAs website and see if they have any SB clinics

listed on their website that are local to you.

But it also sounds like you really need to find a good physiatrist to help

with her pain.

Best wishes,

Jenn

>

>

> Hi Jenn and All,

>

> I was wondering just what Jenn wrote below about Shriner's. My

> father-in-law was a Mason and helped many kids get the care they needed free

> of charge. I don't know the protocol any longer, but it used to be that you

> either needed to be referred by a Shriner/Mason or attend one of their

> screening clinics. If you go to their website, I'm sure you can find

> information on your local Shriner's hospital and find out how you can

> apply/see if they can help your daughter. Insurance wouldn't matter ... I

> know they help children dx'ed with SB which would lead me to think that they

> would also help those with tethered cord/Chiari.

>

> Also - As everyone has mentioned, there are doctors that will review

> scans/symptoms/medical hx for no charge. Not sure about a surgery because

> that involves many different types of fees, but it's definitely worth a try.

> Doesn't Medicaid have an appeal process for out of network/state

> doctors/surgeries? We all know that local nsgs have experience, but 8

> untetherings (for eg) is a lot different than 75 with a nsg who works at a

> hospital where this procedure is done more frequently. I would think that

> you could fill a typed page of differences in outcome and quality of care

> when comparing little to no experience to lots - although, local care

> doesn't always mean poor care.

>

> I have to agree with (think it was Randee) who said she has found good care

> at local hospitals. When I lived in Maine and had access to very good nsgs

> there along with Boston - always ended up choosing my nsg in Maine for my

> untetherings. Now that I live in NC, I have again found excellent nsgs. I

> haven't gone to Duke - it's only an hour from me, but I've found that nsgs

> near me are great, well-versed and two are nsgs that I would consider for

> surgery. (However, of late I have been wondering why I still just don't try

> Dr. Fuchs at Duke since it would only be a copay and short drive).

>

> Where there's a will, there's a way - but I do hope you are able to find a

> good pain clinic or physiatrist for your daughter. Her pain has to be

> interrupting her life and if you can get some relief for her you'll be able

> to take a deep breath and dig in for finding a good nsg. If you need a

> referral to a pain clinic, you can search for one that is local and is

> listed with pain physician associations.

>

> Kathy

>

>