spinal stenosis

[Guest guest]

> From: " " <msshorty96@...>

>

> <My name is . I am a 27 yr old achon from Texas. For the past

> six months I have been experiencing tingling and numbness in my legs. I

> went to see a doctor and he has diagnosed me with spinal stenosis (both

> thorasic and lumbar). The neurologist, Dr. , has recommended surgery.

> He wants to do it as early as this summer. Before I say yes to the

> surgery I want to get answers to some questions I have: If anyone has had

> this surgery to correct this, what were your results? Were you

> pleased/displeased? What was the recovery time? Were there any side

> effects? Has anyone had this surgery done by Dr. ? I'd really like

> to know what to expect, if I decide to have the surgery. Any information

> will be helpful.>

>

i'm seeing a specialist 4/4, so i can give you more information after that.

your doctor should have ordered either a cat scan or an MRI before

reaching this diagnosis. also, has he mentioned lordosis, which often

accompanies stenosis? how severe is your condition? i have managed to

delay surgery for ten years with therapy, medication, and the periodic

use of a tens unit and back brace. i have only decided to have it now

because it has reached the point where it is interfering with my mobility.

recovery time is based on the level of surgery you may need:

some cases are so severe as to require a spinal cage to separate the

disks. i suggest you research it on the weg, then write up a list of

questions for your next visit.

(btw, i haven't heard of Dr , but you have the right to ask his

experience and success rate with this type of surgery, along with how

many other dwarfs he has treated.)

good luck,

luthien

[Guest guest]

Hey Luthien,

This is , I'm outside of Beaumont, I sent you some email but I

don't know if it got lost in email purgatory or what. I hve had 3 major and

a bunch of minor surgeries for stenosis. I am having probs with my vertebrae

disintigrating. Right now t-9 is about gone. The doctors are saying I have

anywhere frome weeks to a couple of months before I become a total

paraplegic. I'm looking for doctors that have expirience with this before. I

know u recomended hopkins and that is an option but the travel would be

hard. So who are you seeing in Houston, I need to get a second opinion

before I make my decision.

Thanks

[Guest guest]

> < This is , I'm outside of Beaumont, I sent you some email but I

> don't know if it got lost in email purgatory or what. I hve had 3 major and

> a bunch of minor surgeries for stenosis. I am having probs with my vertebrae

> disintigrating. Right now t-9 is about gone. The doctors are saying I have

> anywhere frome weeks to a couple of months before I become a total

> paraplegic. I'm looking for doctors that have expirience with this before. I

> know u recomended hopkins and that is an option but the travel would be

> hard. So who are you seeing in Houston, I need to get a second opinion

> before I make my decision.>

>

i'm seeing Dr Westmark, neurosurgeon, in Clear Lake. he was recommended

by my regular doctor, so i'm withholding judgment for now. i'll let you know

what i think after we've talked.

there is one orthopedic surgeon in the pasadena area that i would highly

recommend, Dr. (713-944-4040). i went to him for several

years (before i changed insurances) and he's great. he would probably be

able to recommend someone in your area... he's really nice, so i imagine he'd

do it, no problem.

a general note: i saw this 20/20 segment last summer on this dwarf orthopedic

surgeon in some hospital in ohio. at the time, so many of his patients were

dwarfs that he was considering making it his specialty. if i were closer,

chances

are that i would be in touch with him for any spinal surgery. i'm sure 20/20

would know how to contact him.

good luck and i'll let you know about Dr Westmark next week.

{s}

luthien

[Guest guest]

In a message dated 3/29/00 2:14:52 PM Eastern Standard Time,

luthienx@... writes:

<< a general note: i saw this 20/20 segment last summer on this dwarf

orthopedic

surgeon in some hospital in ohio. at the time, so many of his patients were

dwarfs that he was considering making it his specialty. if i were closer,

chances

are that i would be in touch with him for any spinal surgery. i'm sure 20/20

would know how to contact him. >>

You are referring to Dr Ain who is at s Hopkins in Baltimore, MD. I took

my daughter to see him about 3 weeks ago and he is TERRIFIC! I would highly

recommend him! I was concerned about the bowing of Amber's legs and he put

me at ease. Although it may be far to travel, it will be worth the while at

least to see what he says. I live in GA and it was quite a drive but nothing

is too good for the light of my life!!!

, mother of Amber(achon)

[Guest guest]

Warning: Lengthy email

Dear : I had surgery in June of '99 and the results were wonderful. My

surgery was done by a pediatric neurologist Dr. Partington. He is

located in St. Minnesota (651) 227-7088. I was initially recommended by

Dr. Kopits 410.337.1250 out of land to a Dr. Lonstein 612.775.6200 at

Twin Cities Spine Center in Minneapolis Minnesota. Dr. Lonstein has done

numerous laminectomies on LP's and I have only heard good things about him.

He referred me to Dr. Partington, Neurosurgeon because I also had a tethered

cord and Dr. Lonstein is an orthopedic surgeon. But he was at my surgery

with Dr. Partington. I was the first LP that Dr. Partington operated on and

both Dr. Lonstein and Dr. Kopits were very comfortable with him. I would

personally have an MRI done and phone Dr. Lonstein or Dr. Partington to make

sure the MRI focuses on the areas that he recommends and any other tests that

might be needed and your doctor would hopefully work in cooperation with

other doctors. And you could send the MRI results to Dr. Lonstein for a

second opinion which is always great to have. I live in Florida and would go

back to DR Lonstein or Dr. Partington if I needed further surgery. I also

have heard great things about Dr. Dawson at UCLA in Los Angeles California

310.825.8611. - he has done surgery on a very good friend of mine and I have

heard great things about him also. But in my experience with surgeries on

the back I would get at least 2 opinions and have Dr. work in

cooperation with Dr. Lonstein, Dr. Partington or Dr. Dawson. I was in the

hospital for 1 week and I was walking in 3 days after the surgery and my back

felt great. I was up to full speed in about 3 weeks after the surgery.

Also I recommend doing back exercises post surgery and abdominal exercises as

I failed to keep up with my routine and now due to weak abs and weak back

muscles I ended up with compressed nerves and now am in physical therapy

again and appear to be getting better but it is a slow process and I do not

want to have surgery again. I have stenosis in my upper lumbar and part of

my thoracic area and it is moderately severe. But I have been told by my

doctors that that if I exercise I will more than likely avoid a second

surgery and I have the same sensations you have now - I was put on cortisone

packs for 2 weeks and now I have no tingling in my legs just my feet - and I

am starting to feel better - also I am watching what I eat as I need to lose

some more weight. Also I am making sure my feet and back are supported at

work and I use stepstools instead of yanking up my hip to sit in a chair or a

toilet and I roll to my side and sit up to get out of bed, and to get in bed

or up on something I use to climb now I make sure if possible I have a step

up. Now I need to make sure my children have the additional tools to what

they already have as I don't want to look back and wish I had. They have

special additions to their desk but now I realize they need stools to step up

on their seat not hike their hips to get in a chair. I have now found out

over the years this can take an extreme toll on your back and the gravity on

dangling legs is subtle but over years it can cause severe problems. This is

my experience and my opinion only. Please feel free to write me and if you

want I will email you privately my phone number. Take Care - Cyndi from

Florida

[Guest guest]

wrote:

> Luthien-

>

> Thank you for your response. Yes..my doctor did a series of MRI, x-rays and

> even a myleogram/CT before he diagnosed me this past January. Dr. is

> a neurologist who was recommended to me by a few people that are members of

> LPA, so he is familiar with achondroplasia.

>

> Lordosis?! No, he has not mentioned that. I've never heard of that. The

> severity of the problems that I am having are that it is very difficult for

> me to walk, at times. Any other information you might have will be very

> helpful. Thank you again.

>

> Sincerely,

>

>

> ______________________________________________________

> Get Your Private, Free Email at http://www.hotmail.com

lordosis, as i understand it, is a form of curvature of the spine. for example,

my lower lumbar curves at an almost 85* angle, which can create both stress and

pain. that's why i was given a back brace (the ones with steel stays are the

best and are covered by most medical insurance). it not only relieves the pain,

but is also therapeutic in the sense that it forces your back into a straighter

alignment. a lot of my leg pain originates with my spinal problems. there is

also one other treatment, depending on your problem and its severity. at one

point, i had nerve endings growing out of my lower spine because of the

compression. they can remove those

extraneous nerve endings (with little or no loss of sensation) without

performing more drastic forms of surgery. this doesn't _solve_ any problems,

but it can be a stopgap measure for some problems if need be. one other

thought: i've noticed that my legs bother me more when i am carrying extra

weight--- even 5 pounds is noticeable since most of it collects around my hips,

so i try to keep an eye on the scales.

i'll let you know what else i find out from my doctor next week.

{s}

luthien

[Guest guest]

Hello Everyone,

I am a lady achon in my 30's, I had back surgery in November 1998.

I have had two episodes of back problems again. Six months ago I had

nerve block, but it is no longer working. My doc put me on pain meds

and now steroids. The steroids are helping. Does anyone out there

have some ideas on some exercises that might help my back. It just

depresses me to think I will be in pain the rest of my life. I still

have so much I want to do!! Do some more traveling, but the thought

of alot of walking scares me. Hopefully meet the " right guy " and

have some more kids. I have a eight year old average daughter who

hates to see her mom in pain. Hopefully by back will calm down. I

know we have alot of " experts " out their. So please share your ideas

with me. Thanks.

Tami

[Guest guest]

TamiQ@... wrote:

>

> Hello Everyone,

>

> I am a lady achon in my 30's, I had back surgery in November 1998.

> I have had two episodes of back problems again. Six months ago I had

> nerve block, but it is no longer working. My doc put me on pain meds

> and now steroids. The steroids are helping. Does anyone out there

> have some ideas on some exercises that might help my back. It just

> depresses me to think I will be in pain the rest of my life. I still

> have so much I want to do!! Do some more traveling, but the thought

> of alot of walking scares me. Hopefully meet the " right guy " and

> have some more kids. I have a eight year old average daughter who

> hates to see her mom in pain. Hopefully by back will calm down. I

> know we have alot of " experts " out their. So please share your ideas

> with me. Thanks.

>

> Tami

>

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

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Hi Tami:

Have you ever tried medical massages? I have found it to be the most

helpful for my pain and stiffness. I am in my 30's, have diastrophic

dysplasia and had spinal fusion years ago. I know some people feel funny

about massages, but I have been doing this monthly for about 4 years and

I swear by it. I wish I had started sooner. I was very specific with my

massage therapist about my spine problems and limitations. I also talked

with my orthopedic specialist about. He was not real thrilled about it

at first, oh well...You might want to talk with your doctor about it

too, to make sure its a safe thing to do and he or she might have

someone to recommend for you?

I hope this is helpful.

W.

[Guest guest]

Yes this is what I am having to deal with right now. Arthritis in

the lower lumbar area. Mine is actually caused from two past

laminectomies. I am a 41 year old, achondroplasia dwarf. I have

never been fused though. I have been told that a third lami probably

won't do much good. So I get through most of my days " for the

moment " on Hydrocodone. You mention that you can't tolerate the

codeine. Have you ever taken it, accompanying a well balanced meal?

I find that if I eat food with my meds, then they seem to be somewhat

more effective.

I have taken Celebrex in the past, but it doesn't seem to

help " enough " as well. My pain is mostly centered in my feet and

lower legs, from both knees down, although I do experinence some

actual lower back pain on my lower left side from time to time. The

next step up I've been told is morphine, but I am going to try with

all my might to avoid such a potent drug at this time. Further

surgery may be sooner than I think, but for now I'm using all my

stubborness/strong-will to avoid such a drastic move. I am also in

the process of looking for a new scooter, which I think should bring

at least a little relief.

I have thought about looking into acupuncture, but with school and

all, that's about as far as I've gotten with the idea at this point.

I find that soaking in a hot bath does bring me some temporary

relief. I'm not sure if I'm helping or just airing my own pain

concerns at the same time, but maybe at least, we can both be of some

support to each other.

I really hope that you find some much needed answers to your

immediate pain concerns soon. It sucks to be hurting all of the time,

as many of us can vouch for!

Hang in there!

Ann

> Does anyone on this list suffer from lumbar spinal stenosis

> complicated by arthritis? I had a spinal fusion years ago- in the

> thoracic area, and I have read that sometimes this contributes to

the

> development of stenosis in the lumbar area. At any rate, I am

> wondering what has worked for others. I take celebrex, which helps

> but does not totally relieve the pain, and have undergone epidural

> steroid injections (which relieved the pain for a short period of

> time). I really do not want to have the rest of my back fused as I

am

> sure I will have even less movement, and the time required to

recover

> from the surgery is extensive. Has anyone tried the electrical

> stimulation procedures or other drugs (I can't take any codeine or

> synthetic codeine drugs as they cause severe nausea). Any feedback

> will be appreciated.

>

> Thanks.

[Guest guest]

Hi Irene,

Sorry to hear you are having some issues with your back...but don't

necessarily leap to the conclusion that it's stenosis...here's my

experience a few years back:

I was having some numbness, tingling in my legs, and in my left arm,

and basically, I freaked. Went to the emergency room a couple of

times, scared to death, demanding a full spine MRI. I was sure I was

headed for a laminectomy.

Got the MRI, went up to Hopkins, where both Ain and Rigamonti

couldn't say anything definitive. (Even if I had a slipped disc or

something like that, they wouldn't be able to tell, without a

baseline MRI--so I recommend that any dwarf try to get one if they

can.)

Started doing some physical therapy, which helped a ton--basically

strengthening and stretching, no " popping. " The PT folks were more

helpful than the docs, in some ways. Learned that inflamed muscles

(I have tendonitis in a few places) can compress on nerves too,

which can cause the numbness.)

I have a theory (unproven of course) that what we sometimes refer to

in LPA as " botched surgeries " are actually surgeries that took place

to correct stenosis, when stenosis wasn't the problem at all.

I was stressed out, and out of shape--bad combination for a dwarf!

Check with your doctor to see if physical therapy of some kind can

help allieve what is bothering your back.

Cara

> Forgive me if I'm sounding ignorant about the subject of spinal

stenosis, however

> I need to find out more about it since my back has been going

through some

> pre-symptoms. Is there any information on how many LP's who have

to go

> through back surgery (laminectomy)? And just how common is it for

Achons to

> go through this? And for those Achons who do go through the back

surgery - the

> age range tends to be in the early to mid-30's..?

>

> I always thought it affected both male and female Achons equally,

but someone

> also told me recently that male Achons are prevalent to more

severe spinal

> stenosis than females.

>

> If there is a website with any of this info, I'd greatly

appreciate it.

>

> Thanks,

> Irene

[Guest guest]

While researching for yoga positions for a presentation, I came upon

a yoga website that had exercises for stenosis. I didn't post the

site here because you had to join and pay something like $25 for a

year. Just wondered if something like yoga would help.

> > Forgive me if I'm sounding ignorant about the subject of spinal

> stenosis, however

> > I need to find out more about it since my back has been going

> through some

> > pre-symptoms. Is there any information on how many LP's who have

> to go

> > through back surgery (laminectomy)? And just how common is it for

> Achons to

> > go through this? And for those Achons who do go through the back

> surgery - the

> > age range tends to be in the early to mid-30's..?

> >

> > I always thought it affected both male and female Achons equally,

> but someone

> > also told me recently that male Achons are prevalent to more

> severe spinal

> > stenosis than females.

> >

> > If there is a website with any of this info, I'd greatly

> appreciate it.

> >

> > Thanks,

> > Irene

[Guest guest]

As an FYI, this is the site where I found the Yoga info:

http://yogabasics.com/

Turns out it was " scoliosis " and not " stenosis " , I need to stop

scanning information and go back to reading. Bad habits created by

oversurfing.......

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

Yoga Therapy for Scoliosis

Scoliosis is the presence of abnormal lateral (side-to-side) curves

and rotations in the spinal column. In 80 to 85 percent of people,

the cause of scoliosis is unknown. In adults, scoliosis can produce

symptoms of back pain, muscle tightness, fatigue, decreased lung

capacity and possible neurological symptoms of dizziness, numbness

and tingling. Yoga's emphasis on spinal movement as well as its

overall healing abilities and innate promotion of correct posture

make it an important alternative therapy to prevent the progression

of, and potentially reduce the abnormal spinal curvature of

scoliosis. Yoga is also a powerful remedy to reduce scoliosis'

symptoms of back pain, muscle tightness, fatigue, and decreased lung

capacity.

Yoga's emphasis on postural alignment and spinal realignment helps to

decrease the lateral curves of scoliosis. Using poses such as

mountain, thunderbolt, staff, downward dog, tree, triangle and wind

relieving pose will elongate and lengthen the spine to bring it back

to center.

Twisting poses naturally re-align the spine to help decrease

posterior rotation, and thereby improve alignment and balance. When

practicing twists, it is important to lengthen the spine first and

then carefully move into the twist while maintaining a long torso.

Twisting poses as well as forward bends stretch many of the muscles

in the back, helping to reduce tension and pain. Using back bends to

strengthen the back muscles is important to provide support for a

structurally weakened spine. Practice twists, forward and back

bending poses that target the area of your spine where the scoliosis

is most present.

Yoga poses such as seated head to knee, supine diamond, high lunge,

tiger, and pigeon stretch the hamstrings, hip flexors, and quadriceps

to create more spinal mobility and strength and also help improve

posture.

Chest opening poses as well as yoga's emphasis on breath awareness

within all postures stretches the intercostal muscles (muscles

between the ribs) to improve lung capacity and alignment of the

ribcage. Practice Durga Pranayama (3 part breath) by itself as well

as throughout your entire yoga practice.

Always maintain a concentrated focus on the alignment of the spine in

all poses, and imagine or visualize the spine lengthening and

realigning as you hold and breathe in each pose. It is important to

not practice any poses that cause any pain or that reproduce or

aggravate your symptoms of scoliosis.

A complete list of yoga postures that benefit scoliosis is now

available in our premium yoga therapy section.

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

And here is an interesting list:

http://yogabasics.com/tour/yogaTherapy2.html

Certain yogic practices have been shown to have specific healing

qualities in addition to yoga's inherent ability to create wellness

and good health.

Current list of conditions

Anxiety

Asthma

Back pain

Carpal tunnel syndrome

Colds and flu

Constipation

Depression

Diabetes Mellitus

Epilepsy

Fatigue

Fibromyalgia

Frustration and irritation

Headache

Hypertension

Immune system disorders

Insomnia

Menstrual cramps and PMS

Reproductive / sexual dysfunction

Sciatica

Stomachache and indigestion

Vertigo and dizziness

Also says:

These pages are not intended to treat or diagnose any medical

conditions. A yoga practice should be used to supplement conventional

therapy.

> > > Forgive me if I'm sounding ignorant about the subject of spinal

> > stenosis, however ............

[Guest guest]

I noticed a few people asking about Spinal Stenosis

and it caught my eye. (Have been away from the list

for a while but for some reason opened it up tonight

and saw that topic, nothing happens by chance I'm

convinced.)

My son Jake is 15 with achondroplasia. He has Spinal

Stenosis and will be having surgery next Wednesday,

June 30th. From what I've learned it seems like Spinal

Stenosis is more common later in life... more towards

middle-age. They've told me that Jake's is considered

a serious case and rather unusual for someone his age

to have it to the extent that he does (he's having

some random neurological " malfunctions " that are

happening because he's so tightly compressed.) His

surgery will be at Children's Hospital in Birmingham

and our neurosurgeon told me that they do a case like

Jake's less than once per year in Alabama.

The laminectomy will involve 5 or 6 of his vertebrae

and then he'll have to have spinal fusion to maintain

the stability of his spine.

I would love to hear from other members on the list

that have had a teenager who has gone through the

process. I am by no means an expert but more than

willing to share any of the information that I've

gathered in going through this process with him.

Thanks!

__________________________________________________

[Guest guest]

I am in the middle aged years right now and am experiencing the symptons of

spinal stenosis. Circulation cutting off to the feet and what feels like a wall

of pressur/pain in my lower back where the pelvis meets up.

I started this seven years ago and two years ago things started to get a bit

worse.

Oddly enough, the car accident in September did not affect my back...or my pain

tolerance is so high it was just one more thing to chalk up to being a

pseudoachon.

Karin Redston

[Guest guest]

Karin,

I know we all have different symptoms. Mine started as early as 5 and

progressed to 20, where I was opened up like a bag of potatoes and left for

dead for two weeks. What I experienced was numbness while walking as a child

for a 3 blocks, then 2 blocks, then 1 block, and with hip, leg and lower

back pains also. Puberty was very rough, as the stenosis played hell on my

genitals, because the minute you went numb in your legs, massive errections

would happen, causing one to be totally embarrassed, especially in dress

pants, or skin tight jeans. And these would last longer than normal, making

my life hell, and embarrassing, and popular amongst my lady friends. All in

all, that wasn't the worst yet. By age 18, I couldn't continue to make the

wrestling team that year, the one sport in school I could compete in and win

the respect of my community and state. My legs then were totally going out

from under me, collapsing to where I would hit the floor, and be down for 5

or 15 minutes. This and horrible pains in my hips, like a fire burning in

your hip joints, or like a large screw driver was driven into your hip, and

somebody was twisting the screwdriver around and around. That was constant,

day and night, I learned mind over matter and got thru it, till I couldn't

stand up for 30 seconds, from sitting in a chair, and bam, my legs would go

numb.

I joined LPA when I was 16, but never was able to be at a meeting till I

was 18, so that was an eye opener. I was learning about Spinal Stenosis,

when at 20, I couldn't walk, sleep, drive, make love ( if I ever had a

chance back then) lol, but I was in constant pain, and was dispirit. One of

our local members had gone thru two surgery's from a skilled and wonderful

Neurosurgeon in Central Illinois, by the name of Dr. Lyle Wakaser. Remember

Karin, this was still " Experimental Surgery " and not a guarantee that you

would walk after having it. Well, I had it, and for 2 nights and days, was

rocked and rolled back and forth in my bed. Because of your back being split

open, from tailbone to middleback, back then, you couldn't move, except for

your arms, nothing below you was moving for the first week. So they would

have a sheet under you, and would carefully rock you from one side to the

other, to prevent bed sores and to allow you to enjoy your view of outside

and inside your room. I went into shock for 4 hours on my first night out

from surgery. The nurses, who were my Guardian Angels, were rockin and

rollin me the 3rd time since waking from surgery, when I loss my grip on the

handrails and rolled fast and hard flat on my back. Now to everyone, that's

nothing, my god, what am I talking about. But when you have been zipped

open, like back then, with 5 drain tubes in your back, and enough cat gut to

make a baseball, you tend to be really sore and sensitive back there. Just

the slightness touch and you flinch like it was a hot knife in your back. So

rolling for that 2 seconds, or 1 second like I did, put me into spasms and

shaking, and memories of Lynda Blair in the Exercise, I was waiting for my

bed to rise, or pea soup to come out of my mouth, lol. But they packed me in

ice 2 hours into this experience, and after turning blue, and finally not

shaking anymore, was able to rest that day. It was hell, I am not going to

lie about that, because they chiseled the bone out, now days they grind it

out with a router, like a Dremel Tool, or a Dentist Drill. But back then, I

was on pain meds for 3 months, when they stopped giving me anything. It was

the 70's, Illinois, drug addiction even to aspirin was outlawed. You

couldn't get Tylenol without a prescription, remember, so pain was something

they wouldn't treat you for back then. But Jack 's would, and so would

his friends Pabst Blue Ribbon, Budweiser, Boones Farm, Eagle Rare, Ever

Clear, and home grown. 3 years I was in agony, and my doctor didn't, or

wouldn't do anything for me. I even went to Baltimore, and saw Dr. Arthur

Seiban's, who was one of LPA's finest on our Medical Board. He had me out

there for 2 weeks of Therapy, stretching, and being in more pain, and

sending the nutritionist up to my room. She pegged me at 30 lbs over weight,

like really, I sank like a rock in all pools, including the Salt Lake in

Utah. I had zero body fat, so she starved me everyday and night. So I made

late night raids on the food machines downstairs. It was enough to get you

to the next night. And we could have beer and wine at Good Samaritans

Hospital, my roommate was always having his wife bring some extras for later

that evening for us. Remember, I was legal under the law for 18 and older in

1977. So that didn't work, but I was ended up with a contraption that was

half coffee table, half football goalposts. The Medical Board devised a

tendon stretching table for us to use daily, for me, it was hell, and after

you used it, you couldn't walk for an hour or more. That and the back brace

they gave me were utterly useless. But we were in the stone age of medical

research in LPA back then, compared to today.

My second operation was successful, but being on a HMO, the hospital

staff came to my room, and tried to get me to walk the second day after

surgery. Because state law prohibits anyone leaving the hospital without the

ability to do it under their own power. So they yanked me up, sat me strait

up, even though I was protesting it, and begging them to let me lay down

because of the pain being so intense. This didn't stop these people, no

siree bob. They were contracted for 3 day after checking you in, after that,

you were their cost. So no one person would be there, occupying a bed longer

than 3 days. Well I was there for 7 days, and they were dieing to get rid of

me there. So they sent me to the local Nursing Home/Recovery Center, which

was 30 miles farther away for my wife and daughter to travel to.

Now when does one get that uneasy feeling about a place, is it seeing

all the sheets are from the VA Center, or the staff is all from Africa,

Romania, Russia, Hong Kong, Manila. The only staff on call was the 1st

shift, after that, you had to fight for the friendship of the other shifts.

Some nights you were totally abandoned for 5 hours, before the 3rd shift

would find you on the floor, or in the shower. That Recovery Center is no

longer in service, the state closed them down, 4 month after I left there.

But even though I ended up being a paraplegic from this operation, and

suffer horrible pain, I thank god I came through it all, especially when

many have died from far less. I've been told that if I had waited any

longer, my spinal cord would of severed on it's own, from neglect, and the

constant twisting and turning I was doing while having to wrestle a 1930's

freight elevator the Department of Defense deemed, handicapped accessible,

which helped me cut my cord with it's daily use. I was given two choices, to

work in a hostile environment, or go have back surgery. The back surgery was

much more enjoyable. You don't change a bigot who has dodged the EEOC

countless times with harassment charges, and racial charges, and the fact

that Stern was his mentor for dwarfism, thanks impart to Hank the

Drunken Angry Dwarf.

I opted for perminate leg usage, ungodly pain, a 2 years of poverty,

telephone harassment from bill collectors, having our power shut off every

month, our phone every other month, not eating so as to feed my wife and

child, and dancing for Social Security, because their hold up was they

didn't believe me when I wrote down the word, dwarf on my application. So a

Doctor, not mine, but their doctor had to confirm it. Hell, he asked me what

type of dwarf I was, and I had to spell it for him, plus tell him the

symptoms of it. But 4 months after that, and my surgery, we got a check from

Social Security Disability Insurance, a big check, making up for a year of

them sitting on my file.

So Karin, that is the real world of back surgery, you can make it, or

not, but you better get all your ducks in order before you have surgery.

Like Life Insurance, Disability Insurance, all your Creditors paid in full,

that mean all your credit cards. Money in the bank, for getting by till you

get SSDI or SSI. And have you someone to care for you, a bother, sister,

boyfriend, girlfriend, children, spouse, because you don't hit the floor

running usually from one of these. I'm nearly 50, and that factored into my

care, subject to my being the way I am. I have a wife and daughter who are

my care givers, so if it doesn't go well, you realistically are chairbound.

And that little scooter in the LPA Today, isn't worth you money, sorry

people, but Medicare and Insurance who follow Medicare guidelines state, it

must last 6 years till you can request another chair. Chair must be

serviceable locally, and have representative in your area to service and

maintain chairs at all times, day or night. That Scooter, which is cute,

practical, compared to 1,200 lbs of electric wheelchair, is not approved by

my insurance. So I am looking to pay that out of my own pocket, when I can

afford it on my limited income.

So Karin, I hoped to of scared you, but I am not lying to you, this is

what happens, to you. It isn't pretty, it isn't a movie you can shut off

when a scene you don't like appears. This is life, and Social Security,

after finally getting everything finally taken care of, and setting back and

trying to relax, I'm now being threatened by them again, for their 3 year

review. All medical records, forms to write out again, and my monthly income

from Social Security, loss, while I am being processed. So far the money

still is coming, but I have heard horror stories on this from friends who's

spouse was on SSDI. So we hold our breath and wait and see, because if you

don't pass, they sue for all that they paid you in that time period. You

have to counter sue to get your benefits back. Or at least that is if you

were a Civil Servant, hired under the Handicap Programs of the 80's.

Good Luck, I hope you don't need surgery, but of you do, good luck.

Rob Tille

And if one of you comes off with commenting on this being doom and gloom,

and start blasting me, then you need to grow up, because this happened to

me, and others I know. I and the other two my doctor worked on, are all in

wheelchair today. And if you don't believe me, well I have names for you to

contact then.

Re: Re: Spinal Stenosis

> I am in the middle aged years right now and am experiencing the symptons

of spinal stenosis. Circulation cutting off to the feet and what feels like

a wall of pressur/pain in my lower back where the pelvis meets up.

> I started this seven years ago and two years ago things started to get a

bit worse.

> Oddly enough, the car accident in September did not affect my back...or my

pain tolerance is so high it was just one more thing to chalk up to being a

pseudoachon.

>

> Karin Redston

>

>

>

[Guest guest]

thanks cindy that helped some...I am still not sure what I am in for

for the future. Most stenosis is only in one area of the spine

unless it is an inherited dissorder as mine is. The doctors don't

want to do another surgery unless they have to so it looks like I

will have to deal with the pain for a while again. I may have to

give up riding my motorcycle, a nd that is what bothers me the most

right now. Knowing that this is not all in my head is I suppose

good, as I have struggled with doctors for the last year to get them

to do a full spinal MRI and prove that I wasn't nuts. Now I am not

so sure I really wanted to know. aparently with the inherited form it

will just keep coming back in different areas, so this looks to be a

long battle. You would think after beating cancer twice, being shot

once, and getting my 14 year through a transplant that this would

just be another day at the office....LOL Can't help but wonder just

how much this body can take before it just stops. Today is somewhat

better than yesterday, so I will keep trying to do the things I love

for as long as possible.

[Guest guest]

I've meant to write for some time, and it seemed that I could answer

your questions from my own experience.

I'm 53 and had lumbar spinal stenosis (L-4 and 5) and spondylolisthesis

also. I tried physical therapy and epidurals but they did not help even

one iota, which does go to show that we all are different certainly.

Anyway, mine developed serious symptoms rather quickly - by last August

I could not find ANY comfortable position. I couldn't sit, stand OR lie

down with any comfort at all, even taking percocet - my stenosis was

firmly pinching my sciatic nerve so I had sciatica 24/7 and I was an

absolute wreck because I couldn't sleep or anything.

SOoooo... I didn't have much choice but to have surgery in October. My

surgeon went in, cleaned out the spinal cord and did a fusion. And I

felt better the very next day!! Even with the pain of surgery, it was

so very much less than it had been before the surgery!!!!!!!!!

I have Type I diabetes (the juvenile kind - I've had it since I was 14)

and I caught pneumonia in the hospital so they kept me in there a couple

days longer than they do with most people. I was walking well with a

walker for a few days and then with a cane for about a month. I'm an

elementary school teacher and was able to go back to work full-time in 6

weeks.

I feel like a whole new person and am absolutely THRILLED with the

surgery! I live in Northern Virginia and will be happy to share the

name of my surgeon with anyone who also lives in the area.

Jan

rmunson@... wrote:

> Hi,

>

> I am 56 years old and I have both lumbar spinal stenosis and

> spondylolisthesis. I have severe leg cramping and am considering having

> surgery. I have heard of this surgery being done several different

> ways. I was wondering, for those of you who have had surgery, what way

> seems to work best? Also, where is the best place to have this surgery

> done?

>

> Thanks,

> Rae

--

" Until one has loved an animal, a part of one's soul remains

unawakened. " - in memory of Lucky, Rambo, Snickers, and Liberty

[Guest guest]

I am 23 years old and facing a fusion in the near future. Can I ask how the recovery was? With being back to work in 6 weeks, were there restrictions? Did you have to wear a back brace at all, for how long? I am very scared and trying to prolong the time before I have it done. Thanks.

Thanks,

Jeri Leigh R Re: Spinal Stenosis

I've meant to write for some time, and it seemed that I could answer your questions from my own experience.

I'm 53 and had lumbar spinal stenosis (L-4 and 5) and spondylolisthesis also. I tried physical therapy and epidurals but they did not help even one iota, which does go to show that we all are different certainly.

Anyway, mine developed serious symptoms rather quickly - by last August I could not find ANY comfortable position. I couldn't sit, stand OR lie down with any comfort at all, even taking percocet - my stenosis was firmly pinching my sciatic nerve so I had sciatica 24/7 and I was an absolute wreck because I couldn't sleep or anything.

SOoooo... I didn't have much choice but to have surgery in October. My surgeon went in, cleaned out the spinal cord and did a fusion. And I felt better the very next day!! Even with the pain of surgery, it was so very much less than it had been before the surgery!!!!!!!!!

I have Type I diabetes (the juvenile kind - I've had it since I was 14) and I caught pneumonia in the hospital so they kept me in there a couple days longer than they do with most people. I was walking well with a walker for a few days and then with a cane for about a month. I'm an elementary school teacher and was able to go back to work full-time in 6 weeks.

I feel like a whole new person and am absolutely THRILLED with the surgery! I live in Northern Virginia and will be happy to share the name of my surgeon with anyone who also lives in the area.

Jan

rmunson@... wrote:

> Hi,

> > I am 56 years old and I have both lumbar spinal stenosis and > spondylolisthesis. I have severe leg cramping and am considering having > surgery. I have heard of this surgery being done several different > ways. I was wondering, for those of you who have had surgery, what way > seems to work best? Also, where is the best place to have this surgery > done?

> > Thanks,

> Rae

-- "Until one has loved an animal, a part of one's soul remains unawakened." - in memory of Lucky, Rambo, Snickers, and Liberty

[Guest guest]

Dear N.

The spiritual path is the way.

Go to the Higher Power.

I don't care what you call it. It doesnt

matter how you conceptualize it.

Cry and cry again to the Power greater

than yourself.

HE/SHE IT is the force that moves

the surgeons hands. All outcomes

depend on the HP. (no I don't mean

Hewlett Packard)

I am speaking from direct experience.

Try! If it doesnt work you can

come and punch me in the face.

With Love,

C.

--- nachobaby2 <bell1935@...> wrote:

> Hello,

> Could someone that is affected with this please

> describe your

> symptoms. I have awful pain in my back, but my legs

> hurt so bad I

> can't hardly stand it. I was diagnosed with this

> about 11 years ago

> and it is getting much worse. One Dr. suggested

> surgery, but I am so

> afraid to have hardware and screws put in my bck.

> Have any of you had

> surgery? And the ones that hasn't how is your pain

> affecting you?

> Please help, I am about at the end of my rope.

> Thanks

> nachobaby2@...

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi Colette are you having a fusion done too?? Asking cause I just had

surgery for stenosis and a double fusion. Seems to have worked out

well but only a few weeks now so still cautious about being too

confident. Been there before and got my hopes up too soon. I do not

this will take a long time to heal which is going to drive me

NUTS!!!!!! before I get there I am sure Good luck finding a dr.

Sharon Group Owner

>

> Thank you. I have spinal stenosis and it looks like I will have to

> have surgery which I am not looking forward to, but I will do what I

> have to do. I am looking for the names of good surgeons who do

fusion

> type surgeries. It only hurts when I walk but it keeps me from doing

a

> lot of things.

>

[Guest guest]

Thank you. I am still looking. I have a good PCP and she is helping. I

have a question. I have two types of pain. One goes down left leg the

other is like a cramping or ache in both buttocks when I walk. Did you

experience that too? Did you have to be fused at multiple levels? Is

your pain gone? How long was the surgery? Was there much pain with the

surgery?

Thanks for all the help and support. Colette

[Guest guest]

I am also curious to hear the answers to this question as I also have been

recently diagnosed with it.

Bill

On 9/22/06, mpeddle_99 <mpeddle_99@...> wrote:

>

> Hi,

>

> I am wondering if anyone has Spinal Stenosis. If you do have it or

> have had it did you have the surgery done to help ease the pain. I

> have just been diagonsed with it this week and the surgeon told me

> that I either have to live with it or have surgery to correct it. The

> injections are not an option for me as the openings are too small for

> the injections.

>

> If anyone has had the surgery I would love to hear from you. I want

> to make sure that I am making the right decision. I would like to

> find out more on the recovery process, the healing time, when I can

> return to work, and anything else that there is to know about this.

>

> Thanks in advance for all of your help

> Margaret-Ann Peddle

>

>

>

--

" Strength does not come from physical capacity. It comes from an

indomitable will. "

- Gandhi

" A wise man has great power, and a man of knowledge increases strength "

- Proverbs 24:5

[Guest guest]

Bill, Margaret-Ann, I can only share with you both what

my experience has been, and hope my doing so may be

of some help perhaps. Please keep in mind, this is only

the journey of one.

In 1980, I suddenly began having terrible problems with

my bladder. After two myelograms (this is where dye is injected directly

into our spinal cord, and we are placed upon an X-ray table, then moved so

doctors can watch the

dye as it proceeds along in the spinal cord, so they can get

a good view of how badly the stenosis is affecting the nerves within), and

it was then determined I had severe stenosis within the lumbar vertebra, and

there was

excessive bone growth compressing on my spinal cord in

the same area, which was affecting my bladder. Immediate

surgery was done to remove the bone growth. The surgery

was eleven hours, but all went well. Although I did have

trouble trying to walk again, but physical therapy and a lot

of spunk took care of that problem. So I then assumed I

had the ONLY spine surgery I would ever need, right?!!

WRONG.

Just three years later, I began having intense pain within the lumbar

area. A third myelogram indicated I had severe adhesions from the PREVIOUS

surgery, which was now

compressing upon my spinal cord. Again, immediate surgery was scheduled to

remove the adhesions.

Not quite two years later, the same, all over again.

In 1986, within a twenty-four hour period, I had two major

spine surgeries. The first was my fourth one, to remove

more adhesions, and to attempt to stabilize my lumbar

area with bone taken from my hips. This surgery was twelve hours.

Immediately after, I noticed something was

not right with my legs. They were progressively becoming

more and more numb. At midnight a CAT scan was done,

and my surgeon was rushed back to the hospital. A huge

hematoma had formed on my lumbar spinal cord area, and

was paralyzing me from the waist down. Had I not alerted

them to things not being " right, " I would have been permantly paralyzed. As

it was though, I had to learn how

to walk again, which took a year to do, but I was VERY grateful I COULD

learn to walk again.

Three years following THIS fiasco, I had yet ANOTHER

mylegram, and another round of spine surgery. More

adhesions.

However, I never rebounded from that. Immediately

following, a intense pain took place that has never ended

since, and only worsened.

In 1989, Dr. Kopits and his team of neurosurgeon's diagnosed me with

having severe arachnoiditis. This is a

severe inflammation WITHIN my spinal cord, and there is

NOTHING which can be done to ease this or make it any

better. It is slowly progressing up my spinal cord, causing

intense neverending pain like you cannot imagine. And

migraines.

The main cause of this they said, is due to the four myelograms I had,

in the days prior to the far less invasive

MRI's. My stenosis was so severe, whenever they attempted to remove the dye

like they are SUPPOSED to

be able TO do, my arms and legs began flailing, so they left

the dyes in my spinal cord. So between all the stenosis,

the surgical trauma, AND the dyes, my spinal cord is one

huge VERY painful mess.

I am sharing all this, NOT so I can talk about what all I

have been through, BUT, so MY painful experiences can

possibly help any of YOU! IF any of you have a doctor who

expresses a wish to have a mylegram performed on you,

question your doctor and see if the MRI alone will do. Once

that dye is in your spinal cord, it is there to stay, and it WILL cause more

intense problems.

Also, question your doctors about the possibility of adhesions forming

after surgery. These alone can cause

more problems than our orthopaedic ones----at least in my

case, they have.

I also have stenosis in my neck area, BUT, I am not having problems so

bad to the point of allowing any surgical

proceedures.

Recently, I was seen by two orthopaedic surgeons, and

two neurosurgeons, as my pain is neverending and very

VERY intense. Had they said surgery should be done, I had

made up MY mind for the first time ever, NOT to proceed.

Thankfully (I guess!), I did not HAVE to make that decision,

as all four surgeons determined any MORE surgery, even

for adhesions, would not serve any purpose, and would

only make the problems I have, even worse. I only wish I

had had such descretion at earlier points of my journey though, if such

decisions COULD have been made.

Whatever.

My concern now, is sharing with all of you these things,

so you may know for yourselves what to be aware of, and

what to allow to be done or not done, and what questions

to ask, as well as for the parents of LP children.

Hopefully, NOW, with the success of MRI's, myelograms

are no longer needed. Even so, burn that word into your

minds.

As far as stenosis itself goes, I still have limited bladder

function, which my very first surgery was to have helped

correct if successful. So based upon what I know NOW, perhaps I could have

avoided SOME of this, by never allowing the first surgery to have ever taken

place, who knows?!!

We live and learn.

I am not angry or wallow in self-pity about any of this,

because so doing will certainly not serve me, or others very well. So I TRY

to look upon all this as a really great education in perseverance, and a

sense of compassion for others. And for the most part, I do. But I wouldn't

be human

if at times, I DIDN'T feel overwhelmed by the ongoing severe pain, and the

isolation dealing with it has brought to my life.

Whatever.

At any rate, I do hope my sharing here will be of some

help to anyone seeking to answers.

Bill, Margaret-Ann, I wish you both the very best, and

will keep you both in my thoughts and prayers.

Adelaide

[Guest guest]

Adelaide -

Your story seems very similar to what my mother is going through

(Achondroplasia dwarfism). She had surgery about 7 years ago on the

Lumbar region for spinal stenosis, I'm not sure what the proper names

are for what they did... but it sounds very similar to your

stituation. She did really great after the surgery. She could feel

her legs again, which lead to a knee replacement (because before she

never really knew that her leg wasn't working right because nothing

really worked right).

However, now, they're saying it's " creeping up her spine " and they may

be doing more surgery soon... (and she's falling more, her bladder

isn't functioning right, and her migraines are increasing.. so now i " m

wondering if it's all connected) I'm not sure if you can give me any

insight to pass on to my mother, on things to ask... or things to

avoid... but I'd appreciate any insight you can give. I've copied my

brother on this email, as he and I are both achondroplasia dwarves and

are trying to avoid the same health issues our mother has had.

Thanks again,

Jeana

[Guest guest]

OK this is an attempt at a more recent surgery/diagnosis.

I had been having back pain/trouble walking any great distance when my 7th

grade class went to D.C. (we didn't think anything of it need-based, but

thankfully my mom was a chaperone of another group) in 1999. Not thinking

much of it besides it was a lot of walking, we didn't do much until it

flared up right after Christmas break the next year (that was March '99,

this was Jan. '00), so we went to see the neuro that replaced the neuro that

did my laminectomy in '91...first and last time we've ever seen him. He

said it was I was complaining to get attention and gave me an NSAID (which

basically did nothing for it, and tasted disgusting).

We ended up going to Hopkins and they knew w/in 20 minutes w/o the films

what was up. (the films didn't deny it or anything) Four months later, and

right after Minneapolis, I had a T-10 to S-5 fusion and laminectomy right

above it (and still have a pretty decently visible scar.

Anyway, fusions are more meant to stabilize, not " fix " as I've found out the

last two years and we think now it's more in the hip-leg region, but the

point is: the surgery's not gonna be a fix-all, it's more meant to

improve/return to before/stabilize.