Re: Re: Calling mikeuggen; swayback

[Guest guest]

This took a bit of detective work. It has been a very long time since they

looked at my spine as a whole; and that was before the EDS dx. To me; it

appears that when I got the HEDS diagnosis they stopped looking altogether

Surgery was suggested in about 1995 and I did not go back. They havent

suggested anything lately. I am still in the process of dealing with the

chronic pain group - it has literally been a year with no help whatsoever;

no PT; no advice. You asked if I tried anything else for it... I have no

idea what that would be. In about 1995, prior to the EDS dx, a back therapy

person did 'something'. I have no idea what it was; she was using her

forearm and kneading the area. Something moved and she was very nervous.

By the time I got home I was no longer able to walk further then about a

block; the pain was excruiciating. It took about nine months to walk

several blocks and I was never able to retain whatever strength I had prior

to whatever it was she did. Now I am unable to walk further then a block or

two without having to lay down on the floor and do a pelvic tilt in order to

realign everything. Every back brace I have been given have not been fitted

to my body; I am supposed to get another from chronic pain clinic -- but as

I said that is not moving very quickly. I do have this 'thing' where the

pressure builds and builds and I must lay down immediately; the pressure is

unbelievable. If I lean forward there will be a very loud pop that you can

hear across the room; and it will be a dull ache. It used to be that there

was just one of these per outing. Now I lean forward, allow it to pop and

within minutes I have to do the same again.

I would be interested in whatever you could suggest. Anything is better

then this not doing anything at all.

Thank you in advance for reading this far!!

1980: " spondylolysis and grade 1 spondylolisttheis of L5 " . " Could not find

'sensory level' (?) "

1993: not actually says " sway back posture - big time " . " Forward head

posture " Something about " elevation in supine - lifted off table " " 3/4

rotations in c-spine - tight " " muscle inbalance "

Neck 1993: dxed with bilateral carpal tunnel; dislocated jaw

Neck 1994: " cervical neck strain; levator scapular syndrome; second whip

lash " (first was in 1984) " Fibromyalgia syndrome "

1995: muscle length - short: scaleness R+L; short Upper Traps L>R; short

SCM R (downward arrow) L; Serratus (upward arrow) winging; Gross Movement

Extension: reproducs R upper trap + scalene pn; + quadand extension + R SB;

increased rotation (upward arrow) R not L; Segmental Restriction Co ESB rRl,

C2 FSB lRl; C6 ESB rRr; R T3 ant rib; L (upward arrow) Iliac Crest height;

Shoulder Height R (upward arrow); Serratus Scapular winging - L R;

Trochanter: Post to ankle; Pelvis Pos tilt; Lumbar Lordosis (downward

arrow); Cervical Forward ext; Head post Anterior; Ankles Pronat; Knee

Valgus; Knee: Hyperextended; Knee Ant; Scoliosis - yes; Parathesias C6 - T1;

R > L

1998 MRI: L2 - 3 level: Mild diffuse disc bulge; mild facet and

ligamentous hypertrophy; L4 - 5 level: Mid crntral disc bulge; mild facet

and ligamentous hypertrophy; L% - S1 level: Grade 1 spondylolisttheis;

bilateral spondulolysis of the lamina of L5; Mild hypertrophy at the left

sided spondylolytic defect is pressing along the left posteroltaeral aspect

of the thecal sac. 20% displacement of L5 S1

1998 PT: ROM (downward arror) SB 10%; hinges L4 - L5; tight paraspirals R >

L; hypermobile L4 -L5; excessive stands; extensive (upward arrow) lordosis;

(downward arrow) LE flexiblity; hypermoblity and possible facet dysfunction

in t-spine and L1 - L3; forward head and shoulders, scapula winging R > L;

Flat t spine; LE flexibiley: tight Hs, calfs. Tight Penespinals T5 - T10;

tender at L4 -L5; R PSIS; iliac crese ASIS (upper arrow); shoulder ROM WFL

1999: HEDS dx; dexa scan: values at the femoral neck and wards triangle

are both 1.51 standard deviations below.

1999 PT: all strength 3/5; aquatherapy tore up shoulders; decreased motor

function Trunk & LE; hips click on bike; cramping RMs - don't relax and

contract.

2000 xray: mild anteriour osteophyte formation mild loss of normal cervical

lordosis; C5 - 6 small broad bases posterior disc bulge and bilateraill

unconvertebral hypertrophy with mild bilaterail neural foraminal narrowing;

tightness throughout trapezuis and paracervical; stooping. Grade 1 L5

anterolisthesis on S1

2000 PT right side is weaker, leans to the left, does not have strenght to

sit in a neutrally aligned posture

2001 PT: R hip click on stance; R Trendenlberg in gait; (downward arrow 1R

strenght; ABD strength; R hip catches in gait, nearly falls; like twisting

into it. Affects hip and (checkmark) 7 tendons.

----

On 3/23/04 6:48 PM, " ceda " ceda > wrote:

>

> Subject: Re: Calling mikeuggen; swayback

>

> OK - " Swayback " is technically called lordosis and is one of the

> three abnormal spinal curvatures: head up and back, abdomen forward.

> The other two are " hunchback " or kyphosis, which is head down and

> forward, and scoliosis which is a a side bending curvature.

>

> There are multiple possible causes. It could be an actual deformity

> of the spine itself - vertebrae out of position - which is causing

> the curvature. This would be a structural problem. It could also

> be caused by muscle contractures. In your case, it sounds like it is

> primarily muscle driven because you can get the muscles to relax,

> even if only temporarily, and get the curvature to ease up. If it

> were structural, you would not get a postural change.

>

> The next question that comes up is that, if it is being caused by

> the muscles, which muscles are involved? The primary muscles for

> spinal flexion are the ESGs (Erector Spinae Group) consisting of the

> Spinalis, Longissimus and Iliocostalis. The QL's (Quadratus

> Lumborum) also assist in flexion when they act together bilaterally.

>

> The third and fourth questions I would have would be about the

> bulging disks. Which vertebrae are involved? I am assuming because

> of the swayback that it is your lumbar vertebrae? Also, in which

> direction do they bulge? Do they bulge anterior - toward the

> abdomen? This is just a guess, but it would make sense. If the

> spine is being pulled down and back, the vertebrae are going to

> compress toward the rear, forcing a bulge toward the front.

>

> Next up - has it actually been recommended to you that you have

> surgery done? Also, other than stretching, have you tried anything

> else for it?

>

> Bounce some answers to these back at me and I will take another look

> at it.

>

[Guest guest]

Thanks so much for answering my post. (Just curious - Isn't the amount

listed here typical for a person with HEDS?)

I have been trying to figure out what that woman did for years (the muscle

stripping) and plan on reading up on it. It was my last appt there that my

insurance would cover. When I got home I called her and told her what had

happened and asked her to explain what happened. She told me that she could

not see me or talk to me until I received another clearance from my

insurance company and another referral. I eventually wrote and asked for a

copy of my records; they had been altered. Now that I know what she did

will be able to tell future workers what NOT to do. Does this muscle

stripping have this type of effect on most of us with EDS?

The pressure build up/pop used to happen in about the L2 level; but now it

will happen anywhere from the T8 to the S2 or so. Other types of situations

that will cause this to happen other then walking a block or two are to take

a bath; and every morning when I wake up.

The last time I went to the phisotherapist I begged him to do an xray.

While waiting for the lab guy to see if the xrays looked ok; the lab guy

whistled and was talking to the other lab person about my t-spine. He was

asking if he should take more xrays of those and the second lab person told

him that his perscription was for lumbar not t-spine. Of course they would

not tell me what was on there. Neither would my physiotherapist. I will

have to either make another appt and go in or write and ask for a copy of

that record. I was whining to my pcp about wanting to know what the result

of the xray was and she told me it didn¹t matter; that whatever they saw in

the t-spine would be insignificant as nothing of any importance happens in

that area. Is that true? A slipped disc or spondilothesis doesn't happen

in this area?

Thanks as well for letting me know what types of mfr etc to ask for. This

is exactly what I was wanting to know. I had no idea; and my doctors

certainly don't (just as they have no idea of the big picture of what is

going on with my body) Now I can read up on each.

Yes; I live in the Bay Area; about 20 minutes from the SF airport. If you

are flying through let me know and I will be glad to meet you there for

coffee etc.

PS When I was looking for the correct numbers of the vertebraes to tell you

I ran across some interesting pictures; if anyone is interested...

Spinal Curve and Other Back Deformities (non-technical)

http://www.dinf.ne.jp/doc/english/global/david/dwe002/dwe00222.htm

Spine and nerve endings to organs (middle of the page)

http://home.xtra.co.nz/hosts/Wingmakers/Organs%20Of%20The%20Water%20Meridian

..html

A man with a tattoo of a spine on his spine.... (ouch!)

http://www.tattoo.co.za/data/tattoos/sim/Spine.jpg

A wonderful oil painting of a spine

http://www.joeforkan.com/forkan/painting/d_spine.html

Some fools in spine costumes

http://www.palmer.edu/News/8_18_03/phototour/davenport-spine.jpg

On 3/24/04 12:45 PM, " ceda " ceda > wrote:

>

> Subject: Re: Calling mikeuggen; swayback

>

> Whooof! Where to start?

>

> Let's start with your 1995 incident. Kneading the area with her

> forearm sounds like she might have been doing muscle stripping or

> some other type of soft-tissue mobilization to loosen the back

> muscles. It also sounds like she may have inadvertantly caused one

> or more of your lumbar vertebrae to sublux. I say this because

> something " moved " and by the time you got home, you were in intense

> pain and had difficulty walking. This is somewhat borne out by your

> 1998 MRI which clearly shows lumbar disk issues.

>

> On that pressure build-up and " pop " - where does it happen? Low-

> back? Does it feel like it is in the spine itself?

>

> Looking at the full list of issues - scoliosis, ankle pronation,

> valgus knee, posture, gait, etc, etc, I suspect that fascial

> restrictions are playing a key part. I also suspect that your

> treatment regime has been symptom driven, looking at specific areas

> and not the whole. And one of the problems of this approach for

> soft tissue issues is that the symptoms frequently show up in areas

> other than the cause. The ankle is pronated so treat the ankle,

> without ever once considering that the ankle is pronated BECAUSE of

> a problem in the hip. That kind of thing.

>

> The modalities I would recommend you consider trying are

> Cranialsacral Therapy, Polarity Therapy, Myofascial Release and full

> body acupressure (Jin Shin Do or Process Acupressure or something

> similar). All of them are very gentle and non-invasive. The most

> aggressive of the lot is myofascial release and that depends on the

> type of MFR work being done.

>

> If memory serves me correctly, you live in California?