Re: Fusion Surgery vs. No Surgery and the Waiting Game????

[Guest guest]

HI SPINEY FRIENDS...HOPE ALL ARE DOING OK TODAY.ITS BEEN EXACTLY A

YEAR TODAY SINCE I HAD LASER SURGERY ON MY NECK...HAS ANYONE ELSE IN

THE GROUP HAD LASER DONE?? JUST CURIOUS. FYI...I AM AKA

DIMONDWAVES/SWEETARMYMOM IS MY MAIN ID I USE...JANICE I WILL

EMAIL MY RESPONSE TO YOUR PERSONAL ADDY. T/C ALL. HAVE A GREAT

WEEKEND!!! SPINEY HUGGS.

>

> Hi ,

> I'm Jan and I also have a hernicated disc at C5-6 with a bone

spur at the same level. I read your post and was a bit curious about

your problem.

[Guest guest]

Hi Janice...its from Cali...YES...the pain did get worse after

the surgery...but it was just what I think post op for me was like.

Everyone has different situations and unfortunately I had some bad

spasms as a result which made it difficult to get in and out of

bed..normal daily activities were non-existent. But I got through it

with help from one of the Doctors at the Spine Center. The Insurance

Company was no help at all!!! What a joke they are and have been!!!

I hope others don't have to go through some of the annoying things I

have and lack of responsibility on the Insurance Companys part..or is

it the adjusters???

The Sternamastoid muscle which is in the front of the neck area is

almost constantly numb for me, and the numbness increases with

activity and movement. My neurosurgeon put me on Neurontin to help

with the spasms I started having in the throat...it scared me I

thought I was going to choke on my own saliva at times. I couldn't

control them..I think it may have had something to do with the MEDX

machine they had me on in Physical Therapy. It was causing me alot of

pain which they said was the only way I would get better in my neck.

DUH I find that I don't agree with that!! The doctor took it off my

prescription on my next checkup. The laser surgery is not a

guarantee for everyone...there is about ten percent who it is not

successful for...but I felt I had nothing to lose by trying a less

invasive surgery and an experimental one at that. Its been around

about six years, but then I believe ANTERIOR CERVICAL FUSION is

considered experimental surgery also...does anyone know any

different??

Like Raine from Australia posted... " Pain is my friend and I must live

with it " or something like that...maybe it was " learn to live with

it " ? I believe that is what I have done also but it does SUCK big

time if I think about it too much!!!

I emailed you personally too Janice but I realized I left out some

more details that may help you understand since you said you are

curious.

Janice would you please Excuse me for a moment but I would like to

say hi to NavyGranny...How are you doing NavyGranny? do you remember

me from months ago?? we posted to each other a few times in the

group. I noticed you posted about Facet Joints...are you going to

have this procedure done? I am not sure of the exact terminology..I

am still learning as I go too.

[Guest guest]

Hi :

I'm so sorry to hear about what's going on with your neck. Congrats though

about becoming a " Gramma " (as you put it). My heart just aches for you. I

know just how you feel. I feel the same way you do about surgery, only for me

it's (the fear) about spinal fusion. I tried having a relatively new and

somewhat experimental surgery last year called IDET, which unfortunately

didn't work. In December I have my two consultations/appointments with the

two doctors in town who are doing the artificial disc surgeries/trials. I

must admit, I do have my hopes pinned on that surgery for returning me to my

life (pre pain) and to life. Of course I promise to keep you and Greg

apprised of everything I learn in regards to the artificial disc stuff.

The pain is disabling most of the time and the meds have not been much help.

Sitting is excruciating as my disc is virtually shredded (it's torn so badly)

and now I have a bone spur (lucky me). These days I'm taking Tylenol and

Codeine #4, Flexeril and Topamax, which kinda helps some of the nerve stuff

(I do think it's helped me cut down on my Flexeril) but doesn't do much for

the back pain. I also use the Lidocaine patches (that numb) which I often

times find helpful, but all in all after all these years and all the meds

(long acting, time released, short acting, neurotransmitters etc) I haven't

found any that are really good all of the time. It's a crap shoot. You and

Greg and the others here have been a wonderful support to me as well.

Is it just me or am I beginning to sound like one of those older, blue-haired

women (no disrepect intended to those lovely women) at the hair salon on

Saturday afternoons who complain about bunions and....well....everything?

When the hell did that happen? I'm barely 40!!!

Ok, let's get back to your horses!!! How wonderful it must be to ride, feel

free, wind rustling through your hair, breathing in the fresh air, gazing up

at the beautiful blue skies, warm sunshine beating down on your face, flies

in your teeth....(No, that's motorcycle riding, right?) LOL. All kidding

aside, it must truly be heaven!! Hang in there kid. Just know you're not

alone, ok? Until next time......(also from So. Cal.....)

Robin

[Guest guest]

Hi :

Ok, am gonna try and remember what you asked. First, Topamax is in the same

category as Neurontin. I used to take Neurontin (years ago) when I had Reflex

Sympathetic Dystrophy (disease of the sympathetic nerves) after an ankle

injury, which is how this mess all started. It's a long story. Thankfully the

disease is in remission or may even be gone. Topamax is another

Nuerotransmitter-type drug. It's supposed to be a bit better for pain

although I don't find it all that helpful for my back pain I do find it

helpful for some of the sciatica and spasm/nerve pain. I had started having

some numbness and pins and needles type of pain down my leg and since taking

the Topamax it's gone. I seem to be taking less Flexeril as well since I

started taking the Topamax as well. I've been taking pain meds with tylenol

products for 10 yrs now and worry about long term damage. I have blood tests

taken frequently and so far I'm ok but I also believe it could be potentially

very damaging. I'm very frustrated with the meds. It's been ten years.

Nothing works anymore. I'm always in agonizing pain. Can't sit. Have tried

everything. Don't like taking stuff but can't concentrate being in such pain

either. Argggggggggg. Will stop complaining now.

Ok, what's a bone spur? Not entirely sure but I know it hurts like heck. My

pain mgmt doctor said it's my body's way of trying to fuse itself. I'm told

there's a flattening of the sack, which I'm assuming means that the fluid is

pretty much gone from my disc so I guess there's not much of a space there

anymore. Back to the bone spur, I think it's a piece of bone that's broken

off and/or sticking out (I'm sure one of our roomies will see my completely

inept description--which is unusual for me, and will explain it much better).

I'm in Los Angeles (Westwood). Where are you? Your new granddaughter sounds

delicious. So good to hear from you. Do write. What did I forget to answer.

Forgive me it's late. Take good care.

Robin

[Guest guest]

Hi Jan:

Welcome. So glad to have you as part of our motley crew, well....not glad

that you're in pain and herniated. You know it's funny. I went misdiagnosed

for nearly ten years. When I finally was correctly diagnosed about a year and

a half ago, they found i had a badly torn disc at L4/L5. Disc was torn both

on the inside and outside. To avoid a spinal fusion it was suggested I try a

new minimally invasive surgery called IDET (catheter that heats up disc and

over time is supposed to heal tears). When the doctor began the

surgery/procedure, he found that my disc was virtually shredded (which didn't

stop him from trying). Apparently the catheter kept getting caught in the

tears (ok, sorry this was probably more than you wanted to know...what the

heck was the question again?) The bone spur is a new surprise that just

showed up in the newest MRI. One of the doctors who works with the artificial

disc insisted that I have a new MRI (last one was done a year ago). Thanks

for your kind words about the artificial disc. I feel the same way. I'm

looking forward to learning all about it. The idea of spinal fusion has

always terrified me and when I heard about artificial disc it just seemed

right. Then again, I have yet to learn about the juicy details. I'm sure,

since it's not yet FDA approved, my insurance won't cover a thing. It ought

to be an interesting experience. Nevertheless, I must admit, secretly I think

I've probably put a lot of my eggs in this basket. Ok, maybe all of my eggs.

You've been going through this for four months? I know pain is a bitch. It's

awful. Do you have a bone spur? I think you said your problem was in your

neck? If there's any questions you have that I can help you with I'm here. If

I don't know the answers or haven't gone through it, there are wonderful

people here (our roommates) who have. Just know, you're no longer alone. Or

if you just want to complain or.....I'm here.

Robin

[Guest guest]

HI ROBIN...HI EVERYONE...ROBIN ITS GOOD TO SEE YOU BACK ONLINE...YEAH

I AM SORRY ABOUT MY NECK TOO BUT I KNEW GOING IN THERE WAS A

POSSIBILITY IT MAY NOT WORK. THE ODDS WERE NOT IN MY FAVOR I GUESS.

BUT I DON'T THINK I WAS TOLD THE TOTAL TRUTH. IT IS A CRAPSHOOT..LUCK

OF THE DRAW. BUT I DID GET MY SPASMS UNDER CONTROL ENOUGH IN TIME TO

HOLD MY GRANDBABY..LITTLE MADISON..WHAT AN ANGEL SENT FROM HEAVEN.

ITS AMAZING WHAT A NEW BABY IN THE FAMILY DOES TO YOU..EVEN STRANGERS

SMILE WHEN THEY SEE A BABY. HOW WONDERFUL. THANKS FOR SHARING YOU

THOUGHTS AND HAVING COMPASSION. OMG YOUR IN CALI THATS EVEN BETTER. I

WANT TO HOLD OUT FOR SOMETHING BETTER TOO!! WHERE AND WHO IS YOUR

DOCTOR? YES, MY FRIEND PAM IS GOING IN ON MONDAY..AND ITS BONE

MORPHING PROTEIN AND I DON'T KNOW MUCH ELSE ABOUT IT YET. YES RIDING

THE HORSE WAS GREAT..THERAPUTIC JUST TO SIT ON IT EVEN THOUGH WITH

EVERY CLIP CLOP THERE WAS PAIN BUT I WAS DETERMINED TO DO THIS AND

PAIN HAS BECOME A NORMAL PART OF MY LIFE WHICH IS SAD BUT OH

WELL...ROBIN I LIKE YOU WANT TO GET BACK TO LIVING. I HAVE HEARD OF

THE IDET PROCEDURE AND THANKS FOR THE INFO ROBIN I WON'T BE HAVING

THAT PROCEDURE. I DO WANT TO BE INFORMED OF YOUR PROGRESS. CAN YOU

TELL ME EXACTLY WHAT CAUSES A BONE SPUR AND WHAT IS THE MEDICATION

TOPAMAX? I THINK I NEED SOMETHING JUST A LITTLE STRONGER TO TAKE THE

EDGE OFF NOW. NUERONTIN HELPS AND FLEXERIL AT NOT BUT I THINK I HAVE

ADJUSTED TO THE FLEXERIL AND ONE IS NOT ENOUGH. THIS IS WEIRD I NEVER

THOUGHT I WOULD HEAR MYSELF SAY I CAN'T WAIT FOR MY NEXT EPIDURALS.

OH YEAH, I HAVE BEEN READING IN A BACK AND CHRONIC PAIN FORUM TONIGHT

AND I READ A COUPLE THINGS ABOUT STOMACH BLEEDING FROM MEDS AND LIVER

DAMAGE...THIS CONCERNS ME BECAUSE I HAVE BEEN TAKING MEDS FOR TWO

YEARS NOW. ROBIN WHERE IN SOCAL DO YOU LIVE IF YOU DON'T MIND ME

ASKING??? WELL TAKE CARE ALL AND TRY TO STAY PAIN FREE. OH GOD I

HAVE GOT TO GET OFF OF HERE MY NECK IS HURTING BAD. BYE FOR NOW

SPINEY HUGGS. WRITE BACK SOON. SINCERELY MARY

[Guest guest]

Hello Robin..hello to everyone....thanks Robin for writing back so

soon. Ahh interesting about Topamax. So I am guessing Neurontin is a

nuerotransmitter also and it sends messages to the brain?? Hmmm, you

would think I know more about this medication. I only know they

prescribe it to epileptics who have seizures/spasms as it says on the

insert. I can really sympathize and understand what you mean about

not being able to think clearly. I haven't been able to sit down and

do any scrapbooking. I have to force myself to do things. I do not

want to keep living this sedentary lifestyle!!! I do protest!!! I

would rather do things and have pain while i am doing them.

You should have seen me the last time I went to the theatre and

without a tens unit. I had to get up near the end of the movie and go

stand against the wall for the remainder of it. So it got me thinking

they need to have a section for disabled people who cannot sit down

for 2 to 3 hours....actually recliners would be great..LOL. I am not

joking either. I even hate sitting at this computer. I too do not

like taking a bunch of meds so I have it at two Neurontin during the

day and a flexeril or Ambien. But, lately I feel like the flexeril is

not working as good as it was. So, I got out the Ambien. I called my

Lawyer today and left a message that I would like a Nurse Case

Manager so I can make sure I get my needs met. I would be in Heaven

if I could get a Softtub for home. Oh by the way Robin I live in

Ventura County about an hour North of LAX. I live outside of Ventura

and 11 miles from the Coast. yes, I have heard of Westwood. So does

it look like you have a good chance at getting an artificial disk??

I guess a bone spur is exactly like its name says but I wanted to

hear from someone who has one what its like. Hmmm so now I am

wondering if I will get one? I just read a report from my Ortho Doc

on everything I have done and went through since the onset of my

herniation (from day one) up to present. It seems now there is a

narrowing of the C4/C5/C6.

Anyways, more interesting info from my friend Pam. I want to make

sure I post this before I get in too much pain. Her Surgery is

called " INFUSED BONE GRAFT AND LTK " THE LTK STANDS FOR LUMBAR TAPERED

FUSION DEVICE. ITS USED TO TREAT DDD AND IS A REVOLUTIONARY NEW

APPROACH TO SPINAL FUSION SURGERY. I AM NOT SURE IF SHE IS HAVING A

CAGE PUT IN YET?? SHE IS GETTING EXCITED ABOUT THE SURGERY AND SHE

INFORMED ME SHE WILL BE FAMOUS...LOL. THEY ARE FILMING THE WHOLE

SURGERY. ANYWAYS, THE BONE MORPHING PROTEIN WAS APPROVED BY THE FDA

APPROX. JULY 2, 2002 ACCORDING TO A PRESS RELEASE. THE rhBMT-2 which

is the bone morphing protein is made BY MEDTRONIC AND YOU CAN GO TO

THEIR WEBSITE TO FIND OUT MORE ABOUT IT ITS WWW.MEDTRONIC.COM

PAM HAS ALSO MENTIONED TO ME ABOUT HAVING A PHARMACIST MIX A COMPOUND

OF GAPAPENE AND SOMETHING ELSE FOR RELIEF SIMILAR TO THINGS I HAVE

BEEN USING LIKE ICYHOT, ASPERCREME BUT IT HAS ACTUAL PAINKILLERS AND

IS MUCH STRONGER. I HAVE THE NAME OF THE OTHER COMPOUND IN MY OTHER

NOTES WILL HAVE TO FIND IT. WELL, JUST WANTED TO PASS ALONG SOME MORE

INFO AS I GET IT, AND BEFORE I FORGET TO SHARE IT. HER DOCTORS ARE AT

WWW.SPINECARE.COM WELL, GOTTA GO FOR NOW. TAKE CARE ALL.

SINCERELY, MARY

[Guest guest]

Hi Jan...yes, I still take anti inflammtories when I feel I need

more. I really never know how I will feel from one day to the next.

I always have to take something at night to sleep. The most annoying

symptom for me at times is the numbness in the front of my neck

(sternamastoid muscle area) and sometimes I actually feel like a

muscle in my throat locks up when I am swallowing..strange as it

sounds its not a pleasant feeling. It did it last night. Thats why my

Neurosurgeon put me on Nuerontin. I really try not to dwell on my

neck during the day but I do have to hold my head up higher and I

literally do self traction now. It takes the pressure of the base of

my skull in the back. You are so new to all this and I understand

having lots of questions...I am still learning but have come a long

ways already.

I am going to try and get the floor traction unit for home now. I am

not a pill person..I find it hard to keep track of even taking two

types of pills. Mainly, I stay away from pain pills in daytime

because I like to be clear headed, and I found out that I cannot make

the big important decisions I have to on meds. It has become more of

a morning ritual now...vitamins and pills first before anything, I

also include an advil or Motrin...even though I am getting better I

sometimes still space and forget to take them as soon as I get up.

Hope this helps you some. write me anytime you want to vent or have

questions.

[Guest guest]

Hi :

Thanks for the websites. I'll definitely check them out. I know what you mean

about the movies. Over the past ten years (of having this back problem) I've

averaged about two movies a year (in the theater). This will be the first

year that I've not been able to get to see even one. I'm usually able to sit

about ten minutes before I have to get up and walk to the back of the theater

to stretch and move around.

Right, Topamax is just like Gabapentin (Neurontin) and is usually prescribed

for seizure patients (and now for pain patients). Years ago, the Neurontin

made me gain a tremendous amount of weight. The Topamax is supposed to have

the opposite affect (as I'm currently already dieting I'll let you know if

this is true LOL).

I've tried so many meds over the past ten years and nothing has worked really

well. It's very frustrating. I'm hoping that I'll be approved for the

Artificial Disc surgery and will have it early next year and be able to get

back to having a normal life soon after. I hope your friend, Pam's, surgery

goes really well. I have heard that they are now doing amazing things with

the new bone morphing (or growing) material. It's supposed to really

revolutionize fusions (although the surgery still scares the hell outta me).

I use a lap top. I lie on my back (knees bent) and place the lap top on

something called a " Lap Cat " on my tummy. It's a foam thing that's covered.

It's something I purchased out of a catalog years and years ago during a

stint at UCLA while I was in their Physical and Occupational Therapy program.

Since it's too painful to sit this really helps. It prevents the computer

from sliding around. Ok sweetie. Take good care of yourself and hang in

there. Relief is coming soon for us all (I just know it). Speak with you soon.

xoxoox

Robin