Post Fusion Back/Leg and Foot Pain - Severe RSD

[Jim]

I am a 51 year old male who has had 3 laminectomies, the last surgery was in 1988 and included a bone fusion to levels L4-5 andL5-S1. Following the laminectomy/fusion I began experiencing intermittent burning in the toes of my left foot. The severity and frequency of burning episodes has increased and spread and now includes discoloration and loss of temperature in the left foot. This was diagnosed as RSD.Since September of 1999 the low back pain,severe pain in left foot and leg,and now similar pain in the right foot has totally incapacitated me to the point that I can barely walk,sit(for only 15 minutes)or stand My neurosurgeon said I have exhausted all surgical options.My Physiatrist sent me for Epidural Steroid injections,sympathetic blocks,Botox injections,Acupuncture,trigger point injections,physical and aqua therapy as well as various combinations of oral medications.None of which has worked. An MRI 3months ago shows a large area of "nonenhancement" in general area of L5 nerve root. These changes either represent recurrent or residual disc herniation or enlargement of L5 nerve root on the left side secondary to post-operative adhesions with post operative changes at L4-5 and L5-S1. Any suggestions, comments or hope of any kind would be deeply appreciated. Thank you.

[CCF Neuro[P] MD, RPS]

I hope people respond to your posting.

CCF Neuro MD

[Lyda]

on 6-97 I herniated two disc's while lifting at work.  In August of the same year I had a disectomy done.  I started to recover nicely with some reoccurrent pain and tried to go back to work to only end up in more pain, sometimes unbearable.  My doctor then suggested cage fushion in the L4-L5 area.  I took his advice to only end up in a worse shape.  I can't sit, stand, or lie in any position for more than 20 to 25 minutes before the pain is so bad I have to change positions.  I have been trying to sign up on SSI untill and in hopes of some miracle from God to go back to work again.  But they keep turning me down for my age and say that I am exaggerating my condition.  This upsets me greatly, I don't lie and don't care for a liar.  I am currently taking darvocet 100 for flair ups which happen about 2 to 3 weeks out of a month.
I also take valium 5 to 15 mg for my nerves, to sleep and calm myself from agravation of not being able to help my husband with the money obligations.  It's very upsetting to me.  I've always been independant.  At times I have to take a muscle relaxer (flexrel) and Tylenol #3 for headaces probally from the stress and worry.  If anyone has any suggestions please Email me at ***@****.  I'd love to hear from you.  Thanks.  By the way I'm only 40, I need help to cope with this.

[CCF Neuro[P] MD, RPS]

Dear Lyda:

Sorry to hear about your pain.  There is not much I can add, though and I am sorry.  The trouble with spinal surgery for pain, is that it may or may not help, often can make things worse.  This is what you have experienced.  I am not sure what type of rehab you have had, but I would strongly recommend that you re-enter rehab together with a pain management team.  Likely, you are stuck with some degree of pain for the rest of your life, but maybe not.  See what options the rehab team and pain management have.  

Sincerely,

CCF Neuro MD

[CCF Neuro[P] MD, RPS]

Dear Sophie:

Thank you for your comments.  Hang tough as you are doing, your an example to all of us.

Sincerely,

CCF Neuro MD

[SOPHIE G.C]

I'VE HAD 5 SPINAL OPERATIONS.STARTED WHEN I WAS 16 AND NOW AT 26 I'M STILL SUFFERING FROM PAIN IN BOTH LEGS FROM MY ANKLE TO MY HIPS AND MY DOCTOR SAYS THAT HE CAN NO LONGER HELP ME.I'M TAKING DRUGS THAT DO HELP BUT ARE CAUSING PROBLEMS TO MY STOMACH.MY LATEST OPERATION INVOLVED 6 TITANIUM SCREWS AND BONE GRAFT FROM MY PELVIS.A NEUROSURGEON IN ISRAEL TOLD ME NO ONE WILL EVEN ATTEMPT TO TOUCH A BACK THAT HAS HAD 5 OPERATIONS PERFORMED ALREADY.
HOW DO I COPE? WELL I WORK OUT WITH A PHYSIOTHERAPIST ON A DAILY BASIS WITH A METHOD CALLED KINISIOTHERAPY (MOVEMENT THERAPY)AND I TRY NOT TO LET MYSELF BE BEAT BY THIS.NOBODY CAN REALLY UNDERSTAND HOW MUCH PAIN I FEEL AND LEAST OF ALL THE DOCTORS.WHEN THEY TOLD ME TO REST I DID THE EXACT OPPOSITE AND I FEEL BETTER WHEN I LEAVE THE GYM THAN WHEN I LAY FLAT ON MY BACK ALL DAY.I DID ENOUGH OF THAT WHEN I WAS IN THE CLINIC!!!
SO MY TIP OF THE DAY IS MAKE YOURSELF STRONG PHYSICALLY AND MENTALLY.HELP YOURSELF AND WHEN YOU FEEL DOWN IN THE DUMPS TALK TO SOMEONE ABOUT IT OR HAVE A GOOD CRY AND THEN GET UP AND START AGAIN.

[CCF Neuro[P] MD, RPS]

Dear Debbie:

Sorry to hear about your problems.  I am not sure what to say about disability since I am not your primary physician and have not examined you.  I always tell my patients to seek another opinion concerning surgery.

Sincerely,

CCF Neuro MD

[debbie]

hi, I am a 26 year old female.   5 years ago i had a lamenectomy done at L4,5 and S-1.   The pain subsided for about 3 years and then came back terribly.  I have a 10 month old baby to take care of now.  My neurosurgeon says i need the multi level fusion for the before mentioned levels.  I am scared to death.  My condition like many others is Severe Degenerative Disc Disease that can only get worse with age.  I would just like to hear great outcomes from others that went through this.  I am only 26 years old with my whole life ahead of me.  Any comments would be appreciated.  Also, what are chances of getting Disability benefits, considering it happened at work in 1994.  Been on compensation forever already.

[Linda]

I have had 7-yes you read that correctly-7 spinal surgeries. My first was 17 years ago-I had L4/5 disckectomy-for a liquified disk!  The neurosurgeon said my disk had become like toothpaste and run all over my nerves.  I couldn't stand upright and the pain was unbearable. I was doing great for 5 years.  Then the old left-sided deep hip and buttock pain started.  It was unbelievable. Then I got scared-I drive a school bus-I couldn't feel from the waste down one day on my journey to pick up the children from school.  I endured many tests-you name it I've had it-c.t. scans m.r.i., e-rays galore.  I've had discograms, myelograms up the ying-yang.  To make a long story shorter--After further enduring 3 fusions, a body cast for 3 months after my first one-the year of the big 89 earthquake-and traction-not to mention cortizone-which I too am allergic to,braces and constant pain-relieving(that's a misnomer) medicines- I finally had the B.A.K. cages along with fusion (done anteriorly) 2 years ago.  I woke up from that surgery with an n.g. tube in place in the transitory care unit (where I stayed for 4 days post-op) I had unbelievable numbness down my whole left side that nearly scared me to death.  I went home after 10 days in the hospital that time.  The numbness did get better, but didn't go away nearly enough-so my Dr. and 2 others agreed that I should have the screws and rods put in place through another posterior surgery-which was done on April 9, 1998.  As soon as I woke up from that surgery-wow what a difference.  I still have pain but the numbness was completely gone-and remains so to this day.  I would do it again in a heartbeat.  I went back to driving my school bus after only 5 months!  I continue to work in the office as well-a combination some days of 1o-12 hours.  Though I know that I will never be pain-free, and I continue to have to take pain medicine, I can live with it.  I am strong-wiled, and a fighter by nature-which I think you have to be to deal with constant pain.  I also don't delude myself into thinking that I won't have future problems-I tend to grow a lot of scar tissue and spurs which impinge on my nerves-so only time will tell!  
If anyone has any questions about any of my surgeries, or any of the medical procedures,tests and recooperations-please feel free to e-mail me. ***@****

[Linda]

I just wanted to join in...I have 2 stories.  1) My mother in law has had 2 different Lumbar spine fusions and has had wonderful luck.  She rarely has any pain...she is careful to use proper body mechanics etc.  Her 1st surgery was in the late 1960's and the 2nd in the late 1980's.  

2) I have had "chronic" back pain for 12 years or more...it has steadily gotten worse.  I would have extreme flare ups of awful pain and was told over and over that it was nothing.  Then about 2 years ago I was rearended by 2 cars...and this seemed to really send me into "acute" lower back and leg pain...I have been using a cane.  I went to my doctor who said she didn't know what was wrong and "GOOD LUCK WITH YOUR PAIN"...I was really upset to say the least.  I finally found a spinal doctor who ordered an MRI which shows a herniated disk in L-4-5...he counsuleted with 2 other MD's and started me on some "slow release" Oxycodone and ordered a Epidural which has helped so very much.  I have set my cane aside for the most part...I still have pain but am able to function with the meds.  I have started walking...even if it is only a 1/2 block each day...today I walked a slooow MILE!..I am tired and abit sore but I know that if I don't move now I will get worse...lol.  I am trying to stay up beat and positive for myself and family...my doctor said that I may end up with surgery but we will take it one day at a time.
:-) I am glad to have found this "chat"  Linda

[Terry M.]

I am a 41 year old female that has had back pain for the past ten years. 4 years ago I had a laminectomy and discectomy at L4-L5 for a severly ruptured disc with nerve impengement. After driviing and sitting alot with my job, my condition worsened and a year later has a spinal fusion with BAK implants in L4-L5.  My back seemed to get better for a time, and then slowly regressed. I now had constant, unbearable pain in my lower back, with off and on pain in my L leg-particularly at night when laying down. My X'Rays, mylegrams, CT Scans are relatively neg., including a recent EMG. I am taking jpain medication daily with no relief. My Dr. has advised another fusion at L5-S1., and also pedicle screws. I know this level is also bad, but am scared to death to have this surgery again. I am feeling helpless, and the pain is out of control. Does anyone have any advice?

[CCF Neuro[P] MD, RPS]

thanks for your comments.

CCF Neuro MD

[MARK CHOOLAGIAN]

HELLO PEOPLE
IM 32 YEAR OLD VETERAN WHO IN 91 SUFFERED INJURY TO L5-S1
WENT TO WALTER RIED ARMY MED HOSPITAL WASHINGTON, WERE I UNDERWENT PARTIAL L5S1 HNP LEFT SIDE
NOV 97 UNDERWENT L5S1 DISKFUSION W/ ROGANSKY RODS AND BONE GRAPH W/ STIMULATOR
WELL LUCK HAS IT IN FOR ME I GOT INFECTED WENT BACK IN THE HOSPITAL FOR 2 WEEKS WERE I UNDERWENT AN INSCISON AND DRAINAGE.
WENT HOME SHOOTING ANCEF FOR 3 WEEKS INTO A PICLINE
HAD EXTREME PAIN SINCE THE I@D AND TEST SHOWS THE NERVE SOMEHOW JUMPED OVER THE HOOK AND WAS PLACING PRESSURE ON MY NERVE.
WENT BACK IN HOSPITAL WERE ALL HARDEWARE WAS REMOVED
TAKING FENTLYN AND OXYCODONE FOREVER
RECENT MRI SHOWS NEW CHANGES WITH A RIGHT PARACENTRALDISKPROTRUSION WHICH IS INDENTING THE RIGHT PARA SECAL SAC
THERE IS ALSO FACET ARTHROPATHY AT THIS LEVEL TO ALONG WITH A SCHMORLES NODE EXTENDING INTO THE INFERIOR ENDPLATE

I CANOT POST A NEW QUESTION BUT CAN ANYONE HELP ?
               APPRECIATED MY BROTHERS AND SISTERS

[Susan K.]

In 1984, I had a lifting accident at work, I compressed my lower spine,L5-S1 L4 L3. For about seven years no one could find a specific point of the pain. I was told It was all in my head.I couldn't believe the pain was so very bad.I had to take many, many medications to controll the pain, most of which did not help.I thought for sure I would kill my self,But Our Lord helped me ,I found a surgon who finally could help. Through many tests it was found that I had developed Rapid Deteriorateing Disc Desease. I have now had many surgurys all have helped in my recooperation. I now have Rods, plates, screws,and alot of bone fusion, connected to my sacrum. I am alive and doing well. I also have the disc desease in my neck now, how it traveled ,who knows. So now I have new pains to deal with,pain in my right upper arm, pain in my right shoulder blade, and a headache in the base of my scull, that never seems to stop. I am going to have a fusion and wire to stabolize my neck, and some kind of decompression. I have faith in my Doctor, He has always helped to fix me, and I allow no one esle to touch me. I always keep my faith strong, never give in to the pain, and believe me, I know what daily pain is ,and I will live with it for the rest of my life,But still I will never give up.I know I can beat this,and I will prove it to the whole world.
   For everyone who lives with pain everyday,Please never give in to the pain, always fight for your right to live as well as you can.We can be strong, and we will be strong,don't ever give up.  Sincerly Susan K.

[Jeff Huffman]

Mae - I have had the same surgeries that you talked about, I had a posterior laminectory in April 1999, and the anterior Spine fusion in Oct.1999.  I was injured at work in Dec.1997, and involved in a vechile accident in Dec.1997 (two weeks later).
While I still have very bad days for pain, I am staring to have a good day sometimes too. My Dr. tells me what to expect, and he has not mislead me to this point, I'll share a very basic, vital
part of this puzzle that he tells me almsot everytime I visit him, - "Do Not Stop looking forward, it's better everytime I see you. You can't see that because you live with it and the changes are slow to start. But they do start and keeping your positive attitude makes all the difference to your healing"
  I fully understand your pain, concerns, fears, and the world you cannot yet go into, but it will.  It hasn't gotten to far for me either, so far.  But it's early in the healing process and I haven't yet started P/T. But I now have the prescription to do it with.  I hope to start in the next week or so, and it's gonna hurt to do this, but what choice is there? We have to...
Prayers and good thoughts for you,
Jeff

[Mae Hodgson]

I had a posterior and anterior laminectomy in October 99
I have recovered from the operation as such but still I
experience severe pain in my back (left side) the problem
was originally in my right leg and foot. I do from time to
time still experience the sharp pain in my leg and foot but
the numbness is more or less gone. Usually when I have been
sitting too long I experience numbness in the right side .
I would be interested to hear from other people who have
experienced the same operation as to know when to expect
the back pain to subside.

[Mae Hodgson]

Severe pain (post laminectomy)

[CCF Neuro[P] MD, RPS]

Dear Rahul R. Bhange:

I am not sure what you are asking?  Peripheral neuritis is not a disease but a symptom.  There are many etiologies.  The further refinement concerning each needs a thorough neurological examination, history and some lab work.

Sincerely,

CCF Neuro MD

[rahul.r.bhange]

information regarding peripheral neuritis consulted by a doctor
and asking for further details regarding this desease, so please help as soon as possible.

[CCF Neuro[P] MD, RPS]

Thank you for the comments, I hope that you all find a source of courage to hang-in there during the process of healing.  It is tough, but you are going through it.

CCF Neuro MD

[sammie]

hi jim.   geez, i really know what you're dealing with as far as rsd.  i've also been dealing with this beast for 2 years now.

i couldn't agree more with the doctor~ and with madeline.  the physical therapy, which seems impossible at times, really is vital i think for rsd.

but as my physical therapist reminds me, the "no pain, no gain" theory doesn't apply to rsd patients.   realizing your limitations, plus keeping that positive mindset like the doc suggests, is so important!   and even in pain and frustration, i still love that saying: "focus on your abilities, not on your disabilities".   i have that on a message board next to where i do my exercises :-)

i have a spinal cord stimulator for upper extremity rsd.   i sure can't say it's a wonder device, but it helps.  i'm not sure if this would be an option or not for you?  like you, i've also had numerous spine surgeries and it's likely some of my pain is just the aftermath of all of that.

but i've also found that support networks for "chronic pain" can be helpful.   if there's not one in your local area, the miracle of the internet is second best!   please take care!  *gentle hugs*  samantha

[madeline]

Although I don't have RSD, I do suffer from chronic pain after two surgeries at L5-S1 down the left leg and foot.  Last year my internist referred me to a chronic pain management class through our HMO (Kaiser).  It was a ten week course facilitated by a physical therapy and a psychologist.  Although, no cure was forthcoming, I learned a lot about setting limits and "living through the pain".  We also learned relaxation techniques and keeping a journal of the pain.  Possibly, something like this can help you too.  Good luck.

[CCF Neuro[P] MD, RPS]

Dear Jim:

RSD is very difficult to treat.  One has to rehab through the pain, and most patients refuse to do this and as a result live on pain medications.  To recover from RSD, one has to find a good PT, rehab team, pain specialist and begin to rehab vigorously.  One's mindset must be that "I will recover" and go through the rehab.  It will take time, and that is the rub is to hang in there with the rehab until recovery begins.  This is a difficult process.  I do hope that you will recover.  Hang in there and don't quit.

Sincerely,

CCF Neuro MD