Re: cant have rods...

[Guest guest]

My son continued to curve after he was fully grown, too. I guess it isn't as

unusual as the statistics would suggest. He is 22.

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[Guest guest]

In a message dated 8/15/07 12:07:53 PM, larafeary@... writes:

> He said could try to get someone to give me a massage on that shoulder

> which

> does make that feel better.

>

FYI:

Massages can be covered by many insurance companies if the massager is

qualified to do 'trigger point pain massage' and you have a prescription from

your

doctor. The medical billing code (CPT) is: 97124 I have Blue Cross

Blue Shield who covers it up to a set amount per year.

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[Guest guest]

Hi. I'm 26 and do have rod placement. I'm not exactly sure what my

curves were but I do know I have an S curve and the Dr wouldn't even

see me unless they were over 50 so they were significant. But in the

last few years I have had arm numbness in my left arm, plus right

behind my left shoulder blade I'd have a pain that would come and

go. I went back to my Dr who referred me to another non surgical

back dr. and he told me I have " thoraic outlet syndrome. " It usually

occurs in people that have an extra rib. Basically its just a nerve

being pinched off,hence the pain being caused in the shoulder and

than the numbness. But I don't have an extra rib. Mine is from the

curveness of my spine on the top and just pressing on the nerves.

But to allow for extra space they can go in and take out an rib.

Which would be last resort. He gave me this short brace to try

wearing, which I don't. I didn't think it worked. He told me to try

yoga, I did and it was so boring I almost fell asleep. He said I

could try to get someone to give me a massage on that shoulder which

does make that feel better.

Its just really annoying. I sleep with my arms usually above my head

and my left one falls asleep to the point that it hurts. I think I

may need to have a surgery but i'm going to hold off until the last

possible moment.

As for your curve progressing, it is very much possible after you are

done growing, as you now know. I would look into maybe surgery that

way it won't get any worse. This way you are still young and it

won't get any worse and you can handle the surgery way better now

than in the future.

Good Luck

Lara

>

> Hello -

> I have S-curve scoliosis—upper 60+, lower 45 (lower is holding

steady -

> I had a posterior spinal fusion for a stress fracture in 2001 and

they

> stabilized the lower curve). I feel confident about my lower

curve. I

> did not have any rods put in because I have a syrinx that has to be

> monitored and they felt that the rods would cause too much artifact

on

> MRI. What I am concerned about is the upper curve; when I had

surgery

> in 2001 both curves were holding at 45 degrees. I was measured

again

> in 2005 and my upper curve was only 47. Now the upper curve is

just

> over 60; all of this progression came after I was done growing

which is

> what I really don't understand.

> Is there anyone who has a full spinal fusion with no hardware? Or,

is

> there anyone walking around with a progressive curve at 60+ right

now?

> Also, I have been having a problem with numbness in my left hand,

heart

> flutters, coughing, and pain more severe than before... Has anyone

> else had this issue? The specialist I followed up with seemed to

think

> they were related? I'm sorry if my questions seem silly, but I

avoided

> seeing or talking to anyone about this for years. I am 23, and I'm

> concerned about my next step.

>

[Guest guest]

Hello, and welcome to the group- it appears that you are new? I'm so sorry that

you are having problems at, to me, seems such a young age. I'm 56 and didn't

have my fusion until I was 45. Unfortunately, my curve, a C-curve, had much more

rapid progression after I hit my mid 30's. When I was operated on the curve was

68 degrees. I also started to have pain in my late 30's, along with height loss.

So, even though I have a C-curve, you can see that the old belief that scoliosis

curves become stable after the completion of growth is totally wrong.

If you don't mind a few questions, do you also have syringomyelia? At what age

did they diagnosis your syrinx? And have you had an evaluation by a scoliosis

expert? I would never take as the final word an evaluation by an orthopedic

surgeon who doesn't mainly do scoliosis surgery, or a neurologist or

neurosurgeon. I understand that the syrinx has to be monitored (where is yours

located, if not a Chiari I malformation ?) but it is also important that your

scoliosis be treated when you are at an age that you have the best possible

outcome. Because of the age I was treated- I put it off until I was getting into

real trouble- I have had a lot of problems. I was told that they much prefer

doing surgery before the age of 40, but the younger the better. I hope you have

access to a good scoliosis doctor. If you will list the cities most convenient

to you, people in this group can give you names of good doctors in your area. At

least I hope you live close to someone! I flew from

SC to NYC for my surgery in 1996 to get the best possible outcome. Good luck

and please keep us up to date on what you decide.

As far as your symptoms that doctors think may be related- your questions are

not at all silly- no question is! It is clear why everything but the cough and

heart flutters are occuring from just what you've told us. I mean, a progressive

curve can for sure cause numbness and more pain. Where your problems are

related- the nerves involved and compressed, either from the syrinx or the

curve, could determine all kinds of weird-seeming things. Your neuro dr and a

scoliosis dr could tell you. For me- stress, either about how to treat my new

problems or dealing with the old ones, including chronic pain- have definitely

caused heart flutters. But you need real answers from your drs. Again- good

luck! It's a lot to deal with and you have at least made a start by asking

questions.

Bea

lepetitpapier01 <alabrie@...> wrote:

Hello -

I have S-curve scoliosis—upper 60+, lower 45 (lower is holding steady -

I had a posterior spinal fusion for a stress fracture in 2001 and they

stabilized the lower curve). I feel confident about my lower curve. I

did not have any rods put in because I have a syrinx that has to be

monitored and they felt that the rods would cause too much artifact on

MRI. What I am concerned about is the upper curve; when I had surgery

in 2001 both curves were holding at 45 degrees. I was measured again

in 2005 and my upper curve was only 47. Now the upper curve is just

over 60; all of this progression came after I was done growing which is

what I really don't understand.

Is there anyone who has a full spinal fusion with no hardware? Or, is

there anyone walking around with a progressive curve at 60+ right now?

Also, I have been having a problem with numbness in my left hand, heart

flutters, coughing, and pain more severe than before... Has anyone

else had this issue? The specialist I followed up with seemed to think

they were related? I'm sorry if my questions seem silly, but I avoided

seeing or talking to anyone about this for years. I am 23, and I'm

concerned about my next step.

[Guest guest]

My scoliosis actually got worse after age 40. Then it was more difficult to find

a surgeon willing to help me. When I was 66 years old with a 94 degree

thorocolumbar curve, a surgeon finally said I think I can help you.

The older you are, the more difficult the recovery. I am doing well now, 9

months after surgery, but I had some initial problems with blood clots

(pulmonary embolisms).

Patti

Re: cant have rods...

My son continued to curve after he was fully grown, too. I guess it isn't as

unusual as the statistics would suggest. He is 22.

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[Guest guest]

Swimming will be good for you.

Heba

lepetitpapier01 <alabrie@...> wrote:

Hello -

I have S-curve scoliosis—upper 60+, lower 45 (lower is holding steady -

I had a posterior spinal fusion for a stress fracture in 2001 and they

stabilized the lower curve). I feel confident about my lower curve. I

did not have any rods put in because I have a syrinx that has to be

monitored and they felt that the rods would cause too much artifact on

MRI. What I am concerned about is the upper curve; when I had surgery

in 2001 both curves were holding at 45 degrees. I was measured again

in 2005 and my upper curve was only 47. Now the upper curve is just

over 60; all of this progression came after I was done growing which is

what I really don't understand.

Is there anyone who has a full spinal fusion with no hardware? Or, is

there anyone walking around with a progressive curve at 60+ right now?

Also, I have been having a problem with numbness in my left hand, heart

flutters, coughing, and pain more severe than before... Has anyone

else had this issue? The specialist I followed up with seemed to think

they were related? I'm sorry if my questions seem silly, but I avoided

seeing or talking to anyone about this for years. I am 23, and I'm

concerned about my next step.

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

For ideas on reducing your carbon footprint visit For Good this month.

[Guest guest]

Hello! Yes I am new. I feel young most of the time with all, but this

makes me feel about 110! I think everyone knows that this can take

up a big chunk of your life. I have idiotpathic scoliosis and I was

diagnosed at 9. I was braced from 12-14. I fell while wearing the

brace, and that's how I ended up with a break in my lower curve at

14. I got a new different brace from 14-15 when they decided to do

surgery on the rapidly progressing lower curve with the break that

wouldn't heal. That's when they discovered the syrinx which I've

also heard them call syringomyelia but I don't know the difference?

They also discovered a clotting disorder and the first of 50 odd

heart conditions none of which 2 doctors will agree on. I do not

have Arnold Chiari, and they've given me plenty of MRIs to rule it

out (I'm sure we've all had our sure of MRIs, CAT scans, Xrays,

contrast dye…). The syrinx runs from my cervical spine through the

thoracic and lumbar, so pretty much the length of the cord. I have a

lot of odd problems that when I was in peds they attributed to the

syrinx, things like the sensation of bugs crawling on my back,

numbness in my hands and feet, a lot of problems with restless legs,

and terrible blinding migraines. They put me on Topamax and believe

it or notI think that helps more than just the migraines. I think it

helps a lot of the odd little nerve irritations in my face and back

as well. I don't really feel my upper back well so I have a tendency

to burn myself in the shower if I just turn my back to the water

(which I often do for the spasms!).

As a follow up, I was living in DC for work, and that's when I went

to a doctor who gave me the measurements that knocked my socks off

after not being followed up for awhile. Since then, my grandmother

(who took care of me after my first surgery) passed away. I then

moved back to south Florida to deal with her estate and be at home

really, since she was also raising my two cousins and now they had to

be split up as well. It was just too much trying to handle it all

from so far away, along with that news about my back that I really

hadn't been dealing with in so long. After I posted, I got some

replies that said I really needed to follow up with a dr. I also saw

that a lot of people were going through the same thing at all ages.

So, I got off my butt and called my pediatric ortho surgeon (who I

think is absolutely amazing and wonderful and deserves a million gold

stars). I left a message that I would love a referral since he was

peds and I couldn't see him. He called me back, and said he would do

the follow up himself if I was comfortable with that. I have an appt

on Aug 30th. *fingers crossed*

Other things that I have found that helped:

-#1!!! I went to the podiatrist and had shoe inserts custom made to

help adjust the way I walk. Podiatrists can see your scoliosis from a

mile away and these little inserts make a huge difference. I can pop

them in any flats and I'm good to go. Best of all, insurance covers

if they bill it for your scoliosis and get your drs on board.

-swimming, but only in warmer water (cold pools just make me tense up

and I suffer for it later)

-taking breaks throughout the day to change my position (stand while

typing instead of sitting, lay flat for a few mins, sit instead of

walk, etc). believe it or not this is the hardest thing for me to

remember to do but it makes the biggest difference.

-yoga, though only the stretching. The whole meditation thing is too

sleepy for me.

-I can't take ibuprofen because of bleeding. So, I use a lot (and I

mean a lot) of creams. I've used them all. There is one that is

amazing called Theragesic, but don't use it if you are on an aspirin

therapy or allergic to aspirin because it does have aspirin in it.

(I found that out when I fell in love with it but realized I couldn't

use it LOL). Thermacare heat wraps, especially for work at an office

desk! Just be sure to buy the right size.

-For bracing, just think of the skin under the brace as a baby's

bottom. Use baby powder to prevent dampness or soothe irritation

after you take off your shirt. Ribbed tanks use marks – for girls I

suggest cotton tees or 's Secret body tanks since they have

no seams to leave those awful marks that hurt. Diaper creams help

soothe the pain from repeated wearing under the arms or where you

would have seam marks. Also, after wearing a brace all day,

especially in the heat, there's nothing like a " cooling " bath. Those

eucalyptus bath salts feel great. I think even Aveeno makes some

that have oatmeal too, but I'm not sure.

[Guest guest]

You might want to check our lidoderm patches, by prescription, for pain

control.

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[Guest guest]

My primary care gave me those, and he told me that they worked great.

Well I tried them and I didn't think they worked at all on the spot

that I need them most (at the apex of the one curve and on the full

bone plate where my lower fusion is). That's when the dr said for

nerve/muscle pain but not bone pain and that the pain I'm feeling there

must be a bone pain. He of course has not seen xrays/MRI (nor have I)

so who knows what's going on in there....

I use icy hot rubs on my muscles because I can rub the muscles in my

shoulders with it, and therma care on my lower back's fusion. I haven't

found anything for the upper curve for pain management. Hopefully on

the 30th they can give me a better idea of what is happening inside!

[Guest guest]

Prescription Lidoderm patches provide another option for treating pain.

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[Guest guest]

uhm...just from your description, your primary sound like he's pretty inept

in dealing with your situation...

find a real pain management specialist or an orthopod who may have an

understanding of your situation...or a chiropractor who may work on

biomechanical and soft tissue aspect of your prblem...but ditcht that

primary lol...

On 8/23/07, lepetitpapier01 <alabrie@...> wrote:

>

> My primary care gave me those, and he told me that they worked great.

> Well I tried them and I didn't think they worked at all on the spot

> that I need them most (at the apex of the one curve and on the full

> bone plate where my lower fusion is). That's when the dr said for

> nerve/muscle pain but not bone pain and that the pain I'm feeling there

> must be a bone pain. He of course has not seen xrays/MRI (nor have I)

> so who knows what's going on in there....

> I use icy hot rubs on my muscles because I can rub the muscles in my

> shoulders with it, and therma care on my lower back's fusion. I haven't

> found anything for the upper curve for pain management. Hopefully on

> the 30th they can give me a better idea of what is happening inside!

>

>

>

--

An important scientific innovation rarely makes its way by gradually winning

over and converting its opponents: it rarely happens that Saul becomes .

What does happen is that its opponents gradually die out, and that the

growing generation is familiarised with the ideas from the beginning.

Max Planck (the founder of Quantum Physics)

[Guest guest]

If it weren't for massage I don't know how I would cope. I have rt

thoracic 77 deg corrected to 52 deg with placement of Harrington Rod

from T3-L2 with upper & lower fusion in 1977. I've used all the

icyhot type ointments & have a drawerful of various strength thumper-

type massage wands. Hottubs with extremely strong jets are great.

I've been getting theraputic massg for 10yrs now. For a while it was

at least once a week. The pain never went away, but it would make it

a little more bearable. My rib hump protrudes extensively. To top it

all off, I was rear ended in a car accident years ago & due to the

inflexibility of my spine it caused too many troubles to go into.

Suffice is to say that after 5 years I finally found a pain clinic

willing to see me. Due to my extensive med. hist. all the others

wrote me off (many surg. other than the back & my curvature was so

severe that it made the medical books 30 yrs ago). In addition to

massage, I was on extensive pain meds, muscle relaxants,

tranquilizers, nsaids, etc., but thank goodness now only on MSIR &

Soma with Ambien to sleep when it's just impossible due to pain. My

mssg therapist became a good friend & she let me trade services with

her like petsitting, otherwise she greatly reduced her rates on a

sliding scale since I was so much in need. Perhaps you can find

someone willing to help you in that manner.

>

>

> In a message dated 8/15/07 12:07:53 PM, larafeary@... writes:

>

>

> > He said could try to get someone to give me a massage on that

shoulder

> > which

> > does make that feel better.

> >

> FYI:

> Massages can be covered by many insurance companies if the massager

is

> qualified to do 'trigger point pain massage' and you have a

prescription from your

> doctor. The medical billing code (CPT) is: 97124 I have

Blue Cross

> Blue Shield who covers it up to a set amount per year.

>

>

>

> **************************************

> Get a sneak peek of the all-new AOL at

> http://discover.aol.com/memed/aolcom30tour

>

>

>

[Guest guest]

Ladies, have you heard of rolfing? This is a form of deep tissue massage that

with the right practioner actually realigns whatever needs to move - ribs, hips,

etc.while providing deep tissue massage. In 1974 Dr. Berman at Hahnemann

Hospital in Philadephia corrected my S curve with a Harrington rod and fusion of

12 vertebrae. For several years I grit my teeth, used naproxen everyday and

muscle relaxers and pain meds when I experienced that occasional spasm. I have

not needed ANY medicine in over three years!!!! If you are anywhere near

Longmont, Colorado I will send the name of the practioner I see every two weeks.

It's really remarkable how " unaffected " I am since working with Sid. I wish

this blessing for each of you.

Donna

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

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