more notes from asap in L A

[Guest guest]

Again , please remember these are not complete by any means ...i couldnt

keep up all the time , and didn't get slide information much at all ....some

verbal parts are missing as well . Please , don't edit ...leave this

paragraph on ...I don't want folks to think this is truly accurate somehow

later , GET the tapes !

Anne Van Soest

Legal serivices of N Virginia

Jsp ( attny ) legal advocate

she wants to create a legal /patient advocacy committee as a part of asap

social security is a complecated , intimidating process ..

2 programs

1 ssdi ..soc security disability insurance , aka " title 2 " ..soc sec

2 suplemetal securtiy ..aka " title 16 " ..this is an entitlement program

meaning you don't need the work credits to qualify , and will suplement or

replace ssdi to be sure you have the minimum federal $ ...some states offer

more $ than others under this . ( states chip in some funds )

same legal defintions of disability

ssdi

...based on earnings records ..equivelent of insurance ..not a bank account ,

its like insurance in that you musst have insured status ... normally 40

quarters of earnings

P.I.A is the amount your eligable for based on your earnings record

no income and resources rules ...you can be wealthy and recieve benifits

*** D.I.L. date of last insured ( about 5 years after you stop working )

,,this is applicable to disability ( not age retirement benifits ) .

if you've stoped working , do apply , don't wait.

SSI ..needs based , lots of rules

income into bank account is watched carefully

resources must be below $2000 in savings for an individual , $3000 for a

couple

must meet residency requirements as us citizen

disabled ? what meets this definition ? Term of Art ..depends on if your

talking about workmans comp, private insurance , state plans ect .

for soc sec purposes SSA .. " disability =unable to engage in Substantial

Gainful activity and earn more than about $740/mo on a regular basis .

IRWE's accomidation , applys when there are employment related expenses

....accomidated employment is not commetitive employment , so will not be held

to same rules as being counted as work

subsidy is the same as accomidated ..

Disabled ??

ESO medical --impairments and limmitations ,this is in the rehlm of Drs

legal issues ..ssa vocational rules

ssr rules * case law done in their own courts ...these are seperate courts

with different rules ...the judges arn't real judges ( not sure what she ment

by this , but my impression was she was saying the wouldn't qualify to serve

in a regular court of law ...they are specific to Soc Sec as judges .. maybe

someone can explain this better ? )

DOT ..dictonary of occupational titles

lists relevent skills and abilities needed for a given job , ..this is what

they base the issue of can you do any job at all that is listed in this

dictonary .. think of Dude ranch manager ..( or fortune teller ), some

examples of what jobs are there .

doctors don't make the legal determinations

addministrative judges must chose between the evidence before him in choices

....he can't play doctor

pcp-primary care practioner

ce -consultative exam doctor - social security specialist they can send you

to see

treating physicians is given greater weight than the consultative exam doctor

Sequential Evaluation

Sga ..substantial gainful activity (in an interview or on a form , if are

you working , more than $741 a month , if you say yes , you are not disabled

....the process of applying stops ..if NO , you advance to the next step of

application

Medically Determinable Impairment

if yes keep going ..

Severe ..imposing more than a limmited impact on adls ( activitys of daily

living ) ect

is it a listed disorder ? or equal a listing ==few cases have a diagnosis

that is listed

can a claimnt do a past relevenent work ? ( last 15 years of work history is

examined for this purpose ...if you've done any job your capable of returning

too , you can be denied on this basis

)

** Other JOBS ...the burden shifts to them to establish there are jobs you

can do , ..they must prove this ...you want to make this hard , ..then you

win . Tell them every possible impact /problem in debth.

LIsting 11.19

syringomyelia

" with bulbar signs , or signifigant and persistant disorganization of motor

function in 2 extremties , resulting in sustained disturbance of gross and

dexterous movements , or gait and station "

Alternatives

105 c other vertobrogenic disorders

what if i don't meet a listing ?

Residual functional capacity ( rfc )

2 types of impairments

1. exertional impairments

2. non exertional impairments ..every thing else ..sensative to light noise

, temp ..postural limmitations , extra breaks needed , fatique , stress ,

fingering ( can you feel and use fingers well ..manual dexterity is important

)

vocational guidlines

exertional

sedentary 0-10 lbs , light 10 -29 , med 20- 50 lbs , heavy 50 -100 lbs

each has nonskilled , simi and skilled jobs within each catagory

Age and education

the older you get , they less the might require you too attempt or retrain

for ect

they can't apply these rules if you have nonexertional impairments

certian things prevent all employment

can't sit for 8 hours a day

need for unscheduled work breaks

fine and motor skills impairments

frequent absenseces that can be expected because of up and downs ,or more

than 3 a month expected

need for elevation of legs for 2 or more hours a day

the process ..first apply ..fill out disability report , goes to state

disability determinate office ..nortorious for denials , ( they must if there

is any basis to do so )

if denied ..apply for reconsideration right away ...don't delay at all

in a few states there is no reconsideration office ..it goes back to dds ,

almost always redenied

ALJ adminisrative law judge hearing ..

most cases are resolved at this level

its the first time they look at nonexertional impairments ..

Appeals council ..takes about 2 years or longer ..you can reapply during this

wait , some folks win the new applicaton , then later fight for back money

based on this appeal decision if its also approved

things you can do to enhanse your case

document /journal

what is it like to be in your body

Ongoing relationship with your primary care doctor

never take SSA personally , they are just folks stuck in a box

treating physicians longatudinal relationship is important ...

** dont forget the kitchen sink .. list absoulutly everything !

insomnia , depression , fms /cfs , spasticity , IBS , carpal tunnel , asthma

, double vision , need for pillows , heat sensative , pain , fatique

must now include fibro type problems , let them know ALL ergonomic and

addative needs

( include special seating , computer addaptive equipement , special beds or

reclining chairs , car modifications ect )

acm pathology

3 areas of concern to access

1 brainstem compression / crainal nerve signs

2 sm

3.??? * anne ...help here please ?

non specific complaints are not related to acm /sm like fibro ect ,

physicians aren't sure why this happens , they dont know why and it doesnt

make sense to the scienticic mind ,knowledge base is science but joint pain ,

fatique ect does seem to improve in some folks with acm and they don't know

why .

Chiari and sm .. A physiologic relationship

Dr Benzel , M.D.

Clevend clinic .

historically it was felt the sm or dialeted central canal was the result of

hydrodynamic presure .a dirrect commuication is most likely not actually

caused this way .a central canal dialation is perhaps present PLUS a syrinx

....is there a cause and effect relationship and if so why ??

acm crowds the hole , and relates to the sm ..

what surgeons look for is a comfort zone in deciding if there is a need to do

surgery ...they should feel there is a high probabilty of success , and low

risk of failure ... they look for sm to help make that decision . this is

based on an antonomical basis causeing the sm

its akin too a cork in a full bathtub , if slamed down in the hole , water

can't escape

if the cork is lifted up , or hole made bigger , then the water can drain

the surgery must have a high probability to be sucessful. this helps justify

surgery in some cases .

the usual surgery is a midline incision in back of neck and skull ,

lamenectomy , patch the dura to allow more room .

laculated ( a collection of cysts , segmented with normal tissue in between ,

...when skull bone removal /lamenectomy is done , most syrinx will colapse .

there is a cause and effect relationship between acm and sm ...effective tx

of acm should colapse the sm . 1 principal of the day .

untreated the sm won't go away ,

the acm operation is a benign surgery .. in the scheme of nsg its very simple

tube ( shunt ) into the cord has great potential to injure the cord .

not simple , based on physiology

a dam in a river creates a lake ''but a lake doesnt create a dam.

case presentations

excessive decompresion ( to much bone removed ) Dr Batzdorf leads the work to

gain understanding . if too much bone is removed the cerebellum falls , and

brainstem can fall as well . its sagging , it tugs on other structures

...even a titanium plate wasn't helping hold things up .,, difficult to see

because of the plate ..cine study of csf fluid showed no flow in the region

of the foramen magnum was demonstrated

surgical approach , create an accrilic shelf to reconstructe the bottom of

the skull in a " cerebra " ( think of this as a bra ) to hold the brain up ..

the cork is elevated and csf can flow through ..sm colapsed some .

if narrowing at the cm juncture causes this , so can cervical stenosis

,..cine shows absense of flow in the stenosis area ...compresion causes the

sm to form .this is prehaps just flow obstructed , not always cord compresion

when the occlusion and sm is seen ...the sm must widen out enough to cause

dammage ..( remember ..there is room for up to 70 % expansion , this found in

another lecture given )

if the cord has been weakened enough , sm may form

experments recently in rats showed , if you cut the cord , sm doesnt exist

below the cut ..this emphasises it doesnt need to be one cavity ..if one

forms , two , three may ect

upper cord is a bad place to have a syrinx .

dura opened ...filled with scaring ..the patient formed scar tissue again

....very difficult to address , science doesnt have answers

cerebra operation ( reconstruction ) symtpoms are better laying down ...most

folks worsen throughout the day ...at the time of surgery the patient is

laying down , when the patient is upright ...the cork settles down into the

hole more ..

( my note to folks asking about upright cine mris here ...here is part of

the doctors speculation about something they can't currently get MRI's off )

dysarthria ..difficulty with speach ..symptoms got worse during the day ...

still an encrouchment when looked at through cine ...be careful how much bone

is removed ...still obstructed , but they cant tell why .. the cork still

fills the drain ..

this patient was schizophrenic , treated as if all her problems were schizo

....blown off for a long time ...eventully neurosigns were seen ...had a huge

sm cavity and acm ... gait improved but many symptoms remain ...hard to sort

out what is causeing what ...Dr convinced of a true problem by the huge sm ,

she wasn't faking anything , she had a big problem

fibro /chronic fatique :

fibro ..greater number of tender points the greater distress or stress in the

patients life ...this may be that a chiari malformation is the stressor but

not atonomically related ..

nsgs are still learning ...there sseems to be a dirrect link , ..they can

hang thier hats on the acm /sm as science evidence there is a problem ..can

only surmise that the fibro is actually related at this point ...no EVIDENCE

..

Dr Oro

Clinical studies

....science is based on taking control of the knowledge base .. the medicine

is knowledge kept by the physician ...it has been only recently that we can

find others with acm /sm to share the experience ...as the age of the net

came about ..we can share knowledge and experience ..this empowers folks and

is transforming medicine ...its based on informed consent .. our role was to

give permission

we should persue empowerment which is partnership ..physicans , patients and

familys sharing the thoughts and pathway decisions ..this should be the

partnership , not the Dr. dictating . together the decision is made .

topic ..symptoms of acm

empherical approach

Dr Oro and Dr. Diane Muller partner

posterior fossa is the back compartment of the skull

clivis , tentorium and superoccipit is the foramen magnum boundry for

measurements

heart and respiration go to the pons ..the fourth ventricle has a drain into

the foramen magnum ,

( my note ...the cistern magna is displaced by tonsil tissue ...4th ventricle

should drain to the cistern )

Drs arent taught that the csf flow is very important .. when you cough ,

there is a sudden pulse of csf , if a plug is in place , a headache may

develiope

csf is created with each pulse of the heart ..its got to flow through the

foramen magnum ...its a closed hydrodynamic system .

its a plug in the funnel ...this is acm

cross section cat scan would show brain tissue ..can see the absence of

cistern magna ..this means large or great lake of csf that should be where

the acm exists instead ..

symptoms and outcome ...based on study ..they now have 100 patients in the

study ..will follow them for 10 years now ..Jan 99 through last week when

they reached 100 ..a couple cases of acm 2 in peds , a few folkw with second

surgerys,,4 patients with arachnoid cyst that has caused acm , but tx must

address the cyst

57 self refered , but the net was the key .. dr oro studies the net , but it

is the front door and patients came from around the us , self refered , not

just local

44 were doc referals ..

age range 19 - 78

87% of women go to the net for health care info .. most men who came to Dr

Oro arrived with the the family gal having found the info .. highly college

educated in percentage too

mean duration of symptoms 6.3 years

prevelence 95% headache , suboccipital , ratationg to temples , vertex or jaw

...agrivated by coughing , sneezing , bending , laughing , sneezing ..

charteristic headache often presure like -discriptions include " the head will

explode " , a ballon blowing up , sharp

dizzyness , nausea , bluring of vision ..foggy brain ..hard to think through

these non specific complaints are clearly demonstrated in the study ..they

just arn't sure what the anonomically problem is

dizzyness or lightheaded , ringing in the ears , weakness , numbness in

extrmities

bluring , double vision , specks in the eyes like fire flys , blind spots ,

vision from the side is affected ( can't tell speed of the car from the side

)

he spoke about the firefly specks , how this was a new symtpom that several

patients brought up...not identified in other studies ....they arn't sure

what causes it

sleep disturbance

shortness of breath ,

swollowing problems

memory /mood /thinking affected , foggy cant think well through it .

cardiac chest pain ..

tachycardia ,

hypotension

nausea , abdominal pain , vommiting

*I think this is one spot where i missed writting down lots of symtpoms he

had on slides ...couldn't keep up with the slides at all !

there is a common pattern ..some have many symtpoms some few ..but each

symtpom listed occurs in at least 50 % of patients

headhace exacerbated by activities /positions ect

weekness , numbness

nausea , swollowing problems

fibromyalgia /..overlaping symtoms ..may well be acm not fibro

indications for surgery

serious or progressive deficit

loss of funtion , sm progressing

beyond that the patient must weigh the decision .. the patient makes the

decision based on the benifits and risks of surgery

....in the future the physican should partner by letting you know what their

experience is

one acm 0 pt ..9mm was the average degree of herniation in the study

participants

the size of the crainectomy is a very important consideration ...you can

cause cerebeller slump ...3 cm by 3 cm is perhaps the best general range in

his opinion ..3 cm lamenectomy as well ..usually just c1

decompresion is wide enough , but not to wide , same with c1 lamenectomy

the graft helps create a new cistern magnum

pseudomenigocele .. 2 of 4 patients had artifical graft .. since switching to

pericrainum , no leek in the last 75 cases ..

neurodeficit , in the 78 year old patient ..got pneumonia ..recovered .

2nd surgery ..occipital neueralgia ..may have happened due to tension

1 neuro deficit patient ..numbness to face , one arm /leg ..

8 complacations in the first 50 % patients , only 2 in the second 50 %

44 cases currently in full followup

Q. chiari seems to have some cardiac effects , they think it may be

electrical .

if symptoms remain ..do you consider second surgery ? in some folks there is

too little bone removed , or too much bone removed , .. there may be scaring

that causes occlusion

he shrink the tonisls , but not near a membrane , since that can cause

scaring .

second surgerys often don't have good results either because scaring may be a

big factor and reoccur

strategy for dural closure .. some don't open the dura ,instead feather the

dura with a knife , and use ultrasound to access decompresion

in the uk surgerons dont open the arachnoid or dura at all ..

real differances between beliefs of what is best , the neurosurgeons just

don't agree at this point

Q. why arnt mris being done standing up ?

gravity may well have some effect

there are very few upright scaners now ..5 or 6 in the country ..must be

sitting and the quality of scans arnt as good either

post tramatic sm :

susceptable to sm when the spinal canal can be contused

center part is mmore susceptable its softer

stienke md / batzdorf have done research /published about this

Types of acm malformation .. discription of preliminary data

Outcome studies

178 patients * *( I think this next section is incomplete ...another area

where i couldnt keep up with slides ?? )

anterior..clivs to tentorium and floor

roof

floor

hypervascular dura

normal

Basliar invagination ..10 % , can be short clivis or can develope through

rheumatoid arthritis ect

anterior type

stress headaches , brainstem dysfunction , nystagmens ..typical acm symtpoms

with one differance , higher degree of nystagmus ..may be ventral compresion

surgical considerations ...anterior approach , will the neck be stable , or

need a fusion

2nd type ..roof type ..moving furnature a typical trigger ..starting with

throbing headache .. symptoms increased over the following months ..roof of

tentorium is very steep..cerebellem sliped down

full brain mri important ..may have hydro as well

recomend full brain and spine MRI's

chiari syndrome ..average amount of hernaition same as other types of acm

...sm rate at 60-70 %

hazerdous if too much bone removed ..everything will fall down ...just enough

to reestablish the cisterns

floor type

seeing stars , tingling , nystagmus , facical numbness , ballance proublems

occipital bone is pushing up more than normal decreasing the volume of the

posterior fossa '

increased tone in lower extremities , higher incidence and worse cases of sm

different csf fluid dynamic

surgical considerations ..less risk of hindbrain decent ..average 8 mm

herniation compared with greater herniation in other types ...can have more

bone removed

hemorrhagic dura

hernation less , geometry normal ..progressive symtpoms .. dura turned out to

be very prone to bleeding .. subset of 5 % of patients ... physilogical

compresion ...less decent of tonsils , but same sm rate

dural closure / bleed graft is a big problem with these patients

30 % have normal geomomety

chiari syndrome normal gemetry

same rate of sm ..

surgical considerations ...how much bone to remove ...

summary

different shapes of the posterior fossa that lead to different patterns

within the acm syndrome ..differances in rate of sm ...differances in how to

treat the condition based on which type someone has

platybasia

flatening .. sort of a pushing up type

look at birth history ..but no clear pattern identified yet that would add

credience to birth injury

data study not done

how can you tell if arachnoiditis is precent .. you can't tell ... symptoms

outweigh what you see in the immaging , thats the only clue

Dr menenzes bone and skelatal abnormalitys

Q and A

look for dimples or dents like sinus holes ,,if in midline ..fusion

abnormality , hair whorl , red spots , intelgastasia ) ..if you see red on

the spine , red flag ..look at the foot ..leg discrepency ...feet equal ,

muscle mass equal , foot turned ..toes spread , crease down the foot ect

playblasia angle as it goes down becomes flater ..plyatyblasia alone isn't a

big worry -with looking for other bony abnormalitys , may not be signifigant

by itself .

with bifida its a much higher risk there is cord inpact too

peds question ..bladder control issues

child with late ? bowel and bladder control ..does seem to care with urine ,

uses toilet for bm ..at what point do we look at bladder issues ..

A. age 3-4 is when mylination is enough that you would expect full awareness

/control issues to be resolved

if the child isn't continet by 3-4 , question why

Q. forceps delivery , sm with no acm ..is forceps the cause ?

.. Dr Williiams said arachnoiditis may be a result of tramatic delivery ..

was labor prolonged or problematic .. forceps alone can cause this dammmage

Q.cord teathering .. is it common for the cord to be teathered at other

levels

beyound lumbar ?

A. many conditions can cause teathering ,,, if sm is present , you need a top

to bottom MRI to fully access what may be involved

pumkin on a pole

Q. holding my head up is hard after trama/whiplash .. is atlas the problem ?

A first , get a compentant physician ..

you need an unbiased dr , who will do plain xrays to look at bone

articulation , and full MRI' s

Q spinal spondolysis ? ( sp ) scoliosis , disc disease .. how do you sort out

symptoms when sm is present first

carbatol ..bony abnormalty as well

spondoldytesthesia .. bone has moved , most common at the lumbar level ..

ring of bone is body , 2 archs that form the sides .. pedicle , pedles that

are like shingles , ..facets ..juncture between the bone is a junction point

of developement , with rapid growth ...

can get a seperation of the bone at the arch , with repeated injury and

stress , it will seperate , below the age of 16-17 they may need intervention

to reduce the space ..may be associated with a ruptured disc

may remove it if neuro defects develope

fusion may be required

sometimes being radical is really conservative action ..if strenthening

exercises don't work , then surgery may be needed

Q faciulations ..some pts are very bothered

A, ..problem with anterior horn cells ..

carbratol appropriate .. may require more than one medication in combo ..this

requires an individual approach to sort out whats best

Q. can a herniated disc cause problems ?

A. only if there is a csf block

Q. are extra ribs related to sm >? dx with carpal tunal in both hands ?

A. actually may be related to the extra ribs instead .. careful with the

carpal tunal label

q. what is the relationship of dent /dimple

A,..out of 2000 folks , 23 had sinus tract .

Q.circumfrence of head at birth was smaller than chest .. told it should be

the oppisite

A. dont worry if the child is doing well

Q when a pylenodial cyst is found is there a relationship ?

A,.. these are close to the rectum ,, may be a misdx .. usually doesnt have

any bearing .. a dimple or dent is an indication though .