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Old 01-26-2013, 07:24 PM   #1
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4 Back Surgeries, Still In Pain

I had a multi level laminectomy L3-L5 back in 2002. Then a discectomy at L5 in July 2011, woke up in recovery with complications of a blood clot in the spinal cord with a ruptured disc and fragments also in the cord. Back into surgery 2 days later to remove blood clot and disc fragments. Disc ruptured again and there wasn't enough disc left to do anymore surgery on except for a fusion. Surgeon thought it best to do a 360 degree fusion at L3 through S1 as the other disc were diseased and would require fusions at some point in the future. My surgeon thought it best to just get it over in one surgery versus repeated ones as the discs ruptured. The fusion was in March 2012 and the recovery has been so hard, much harder than I ever expected. Had to relearn the use of my left leg and it still feels funny, kind of heavy, fatter then my right and slower to respond. It hurts to sit for longer than 15 minutes, walking is also painful as is standing. Even laying down doesn't relieve the pain. My surgeon has stated even before the fusion that the pain may be permanent. I am still trying to adapt to the idea of living the rest of my life on oxycodone and neurontin, when it doesn't even stop the pain. How does one get used to being in pain 24 hours a day, only getting 1 to 2 hours of sleep at a time? Sorry to rant on here, some of you have so much more to deal with than this, my heart goes out to you.

 
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Old 01-26-2013, 09:26 PM   #2
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Re: 4 Back Surgeries, Still In Pain

SD:

First of all welcome to the board.

Here is my medical history:

--- 1988 traction from bulges in lumbar spine;
--- 1994 surgery for herniated discs lumbar spine;
--- 1995 surgery for stenosis; cervical spine;
--- 1997 surgery on lumbar spine: Flatback Syndrome; Harrington Rods;
--- 2000 surgery on cervical spine: Kyphosis: Harrington Rods;
--- 2003 surgery to left leg for blood clot;
--- 2006 Spinal Cord Stimulator implanted for pain control;
--- 2007 surgery for mass found on pancreas;
--- 2011 surgery done to remove Spinal Cord Stimulator; not helping me;
--- 2012 "Trial" implant of Intrathecal Pain Pump for pain control;
--- 2013 "Permanent" Implant sugery for Intrathecal Pain Pump; includes Dilaudid and Bipuvacaine

SD I know the frustrations that you are going thru in trying to deal with the issue of pain.
Over the years I have been on various medications for pain. Some of the medications include: Fentanyl Patches; Neurontin; Oxycodone; Baclofen; Hydrocodone; Tizanidine and a host of other medications that I can't even recall. I've had back issues since 1988.

The Spinal Cord Stimulator is similar to a TENS unit. I had it in for 5 years but quite honestly it should have been removed a lot sooner then it was. It teally wasn't doing much for me.

As to my current issues there are a number of issues. In my neck I have "myelocmalacia" which is lack of blood supply probably caused by stenosis or some type of traua.There is focal cord atrophy; loss of disc height; bone spurs. In the thoracic region there are protrusions and disc bulges. Mild stenosis also somewhere I think in the thoracic region.

In my lumbar spine I know I have issues but I am having difficulty diagnosing the issue. With the Harrington Rods in this area, I can't get a clear reading when an MRI is done. The "rods" obstruct getting a clear view for some reason. And I CANNOT use contrast because I have kidney disease and the contrast would affect the kidney.

In an EMG that I had done it was felt that I had severe nerve damage in the lumbar and cervical spine; arthritist and peripheral neuropathy. There is numbness in both legs, the left being worse then the right. The neuropathy is due probably due partially due to my spine issues but also because I am diabetic.

For my neck issues they are afraid to do more surgery on me. The "Myelomalacia" I have been told that there is not much that can be done to correct the problem. But they are also afraid to do surgery becuase of the amount of srugeries that I have already been thru and because of other health issues. Surgery would be risky.

So here I am. Every time they did surgery I felt that the surgeon did what he was supposed to do. The surgery itself went fine. But new spine issues would appear. It was a non ending process.

I have been living in pain for years. Most recently I have been on Hydrocodone to help deal witht he pain but I felt it wasn't doing the greatest of jobs. My RX allowed me to take 1 1/2 tablets of Hyrocodone upto 4 times a day. Some days when the pain was more then usual I would take what I needed but I found that on some days I could not keep awake. I would spend days in bed or when I did do things I would tire out very easily.

So finally I saw a pain management doctor that suggested the Intrathecal Pain Pump. It is 2 medications --- Dilaudid and Bipuvacaine. It was implanted on 1/11/2013. The pump was implanted where the catheter was put at T-10 level and the pump which looks like a heart pacemakeer was put into the abdoment. For whatever reason the pump could NOT be implanted to help me with my ENTIRE spine issues. It was put into the help the area that I felt it would help the most. So in my case it is helping the mid to low back regions.

They do it in 2 stages. First a trial to see if maybe you would benefit from the pump. If it is successful then they move onto the permanent implant.

The trial I found amazing relief. So I had the permanent one done. Just keep in mind I may have some bad days here and there. But they consider it a success if you find that you get 50% or more relief overall. I have found that and probably even more.

I do still have neck issues and still trying to figure out what to do on that problem. I am still taking Hydrocodone and Tizanidine to help relieve any pain in the neck area.

The pump delivers less medication than what you would take in ORAL medications. The pump that I have implanted delivers 0. 48 mL of medication throughout the day. It goes directly to the spine so that is why less is better.

But for those days where I think I am having more pain then usual the system is allowed so that you can give yourself more medication. But there is a limit on what you can give yourself. They dont want you to overdose on the medication. So the doctor programs the pump as to how much more medication you can give yourself. And giving yourself more medication is really easy.

You are given after the implant a device like a remote control or small cell phone. Very small in size And with that there is a wire like an antennae. you connect the antennae to the device and hold it over where the implant is in your abdoment. And you simply turn it on and within a few seconds the pump allows more medication to be delivered.

My system is for now set at 0.1 mL can be given 1 time every 8 hours. If you try to deliver it before the time allotted the system wont allow you to give yourself the extra medication.

the amount can be changed but ONLY by the doctor.

I am not sure if you are a candidate for the intrathecal pain pump. I think they try to rule out other treatment options before you get to this stage.

Also for whatever reason when being considered for the pump you are required to go thru a psychological evaluation. I think this is required by the insurance companies before doing the TRIAL portion of the pump.

I guess they want to see if you are being realistic on your expectations. The pump is NOT a CURE. For me and its only been a short period of time, but for now it has given me some degree of relief.

I have found that I dont have as much pain in my low back as before. I think I am 80% better as to pain now as compared to before. Again yes some days I feel more pain then others but I feel it is better controlled.

Not sure if you want to look into this or not and again not sure if your doctor thinks you would be a candidate or not. Just a thought though.

Good luck

 
Old 01-26-2013, 10:31 PM   #3
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Re: 4 Back Surgeries, Still In Pain

Oh Pebblebeach, I almost cried while reading your post! You have suffered for so many years and have so many areas of your spine giving you problems. My heart and prayers go out to you and I hope the pain pump continues to give you some relief. What a history! Did they ever determine what caused the original issues with your spine when you first had traction in 1988? Do you think the spinal cord stimulator had anything to do with the mass on the pancreas?

I was born with congenital small spinal canal in the neck and lower spine. Then at age 15 I was a passenger in a motor vehicle accident and further damaged my neck and lower spine. Had next traction numerous times with cervical collars and diathermy heat treatments, none of which seemed to work. Have also taken various medications, currently the oxycodone (without Tylenol, trying to preserve the liver) is about as strong as I want, as it causes me to get tired and fatigued, as does the neurontin, but without, don't think the pain would be tolerable. My surgeon wants to explore a spinal cord stimulator, but am hesitant for more surgery. I still need additional surgery on my left hand for carpal tunnel and trigger fingers (caused by using the walker). Just had the right hand done in November and the hand surgeon wants to wait until it has healed before doing the left. Also need surgery to my right shoulder and possibly the left for various arthritic damage and tendon damage. Then the left foot needs revision surgery for additional arthritic damage (previous bunion surgery on both feet). I am sick of surgery! I made a list of previous surgeries to have at my SSDI hearing and it came to 27 surgeries. At this point I would settle for a couple of pain free years and boy, would I cram a lifetime of travel and fun activities into them! But, right now, just try to take it a day at a time.

Again, Pebblebeach, I will keep you in my prayers and hope something new is developed that will bring you some long needed benefits. Have you researched any treatments in Europe?

 
Old 01-26-2013, 11:50 PM   #4
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Re: 4 Back Surgeries, Still In Pain

Hi Sd, Im so sorry that you have been thru so much & have more surgery to face & that you are suffering such pain. Have you been diagnosed with chronic pain or is the pain considered post op or acute? The reason i ask is because you mentioned a spinal cord stimulator possibly in your future & this made me think that you do have chronic back pain. I too have had 4 spine surgeries & when the short acting narcotics werent helping me enough to function my medicine was changed to a long acting timed released narcotic medicine and the tired, fatigued feeling left! I had more energy from more pain relief so i could go to the store, light clean, visit friends, etc & I wondered if the dr had suggested this for you. I hope that your hand gets better & your pain is relieved. God bless you.

Last edited by gmak; 01-26-2013 at 11:53 PM. Reason: typos

 
Old 01-26-2013, 11:58 PM   #5
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Re: 4 Back Surgeries, Still In Pain

Hi Gmak,

He hasn't as of yet wanted to go with long acting pain med's. That was when we were waiting for the fusion surgery and that topic hasn't come up yet since that surgery. Yes, it is chronic pain, has been severe, non stop since June 2010. Will see my surgeon next week and hopefully can discus ps other options. Thanks for the suggestions.

 
Old 01-27-2013, 12:23 AM   #6
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Re: 4 Back Surgeries, Still In Pain

[QUOTE=SD Backache;5123648]Hi Gmak,

He hasn't as of yet wanted to go with long acting pain med's. That was when we were waiting for the fusion surgery and that topic hasn't come up yet since that surgery. Yes, it is chronic pain, has been severe, non stop since June 2010. Will see my surgeon next week and hopefully can discus ps other options. Thanks for the suggestions.[/QUOTE]


Hi SD, Im truly so sorry & i can surely relate as its 2am & we are both up! I can understand the logic when you are post op & still have more surgeries to go, the post op pain is acute on a chronic pain patient, you poor thing! Hopefully, the surgeries will be finished soon & the recoveries awesome & then the dr can treat the chronic pain more effectively for you. Take care & thank you!

 
Old 01-27-2013, 05:15 AM   #7
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Re: 4 Back Surgeries, Still In Pain

SD:

Thank you for your thoughts & prayers.

As to why I have developed all the problems over the year, I am afraid that there are no answers.

It is crazy to say the least. When I first develped spine problems in 1988 I remember I had radiating pain to the left side. I was getting nauseated and not sure what else I was going thru at the time.

So the doctors thought from the symptoms that I had kidney stones. So I went thru a test for kidney stones and that was rulled out. In fact the test was done at a local hospital and it took longer then it should have. At first after the initial test was done they asked me to wait 2 more hours. They thought the dye wasnt in my system enough and wanted to redo some of the test. sO I said ok. We did part of the test again horus later. Then they wanted to wait some more time again. At that point I knew something was up. They finally told me they couldnt find my left kidney. I thought what are you talking about. So we talked. Turns out that it was then that I found out that I was born with 1 kidney. No one ever knew. There was no reason anyone would have known. There were never any complaints prior to this about any kdieny issues. It was only thru testing that we discovered the congenital condition.

Funny thing is that several years later my sister went thru a ultrasound for something and she found out that she too was born with 1 kidney. She is 3years older then me. No one ever knew on either one of us of the issues with the kidney.

So finally after the kideny issue was ruled out, they thought maybe there is a tumor in my back that was p ressing on a nerve. WEnt thru a test for that and came back negative.

Finally did an MRI on the back and thats when they discovered the bulging discs in the lumbar area.

From there the rest is history as to what happened to me.

As to the Spinal Cord Stimulator. I dont think there is any connection between the mass on the pancreas and the stimulator. No one ever made the connection so Im thinking that there is no connection.

But thinking back to the stimulator I think I was so hoping that something would work that I was fooled into thinking it was helping me. I had it in for 5 years and quite honestly it should never ever stayed in that long. Should have been removed probably within the 1st year after it was implanted rather then 5 years later.

My medical history has been a nightmare. In 1994 I was diagnosed with Parkinsons diseae. Got 2nd opinion etc. Just to find out prior to my surgery in 1997 that I was misdiagnosed with parkinsons disease. I was on 3 meds for parkinsons disase at that point for over 2 years just to be told I dont have it. Still dont know why I had tremors in my arm.

And one of the worst nightmares was in 2003 i ended up in the hospital and diagnsed with diabetes. I was half out of my mind at the tie time. My blood sugar was over 1500 so my mind was gone. I ended up also going thru surgery on my left leg for a blood clot. Going into surgery I was told that they may have to amputate the leg. The leg was saved. No one expected me to live with everything that was going on.

As to being checked out in Europe I never thought about it. Any suggestions on whe re to check. And how doi you think I would benefit. What treatment options are there that are not available here? I would be curious as to what you are thinking.

Good luck in what you do. Keep mep posted please.

 
Old 01-28-2013, 08:18 AM   #8
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Re: 4 Back Surgeries, Still In Pain

Wow Pepplebeach, you have sure been through alot. I hope you get some pain relief and that they find something to help with your back problems.

 
Old 01-29-2013, 06:51 AM   #9
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Re: 4 Back Surgeries, Still In Pain

My sympathies to all of you.

Back in 1973 they were planning on doing a fusion on me and I panicked at the last minute (in the hospital.) I have lived with intermittent periodic pain and the occasional 3 day spasms that were near crippling but only a couple times a year. Usual dull feeling in outer left leg and pinky are old hat, I notice it only when I think of it. Severe sciatica lasted about 6 months in the '70's.

My back has gone through at least 5 iteration in the maturing of this proceess with damage extending upwards disc by disc and I am sure by this point I have a couple autofusions (As of 1973, the X-rays showed NO space between S1 and L-5.) I think autofusion might be better than titanium and screw fusions.
Started with a break in the L5 rear process from a heavy dead lift.

I live with it with the aid of perhaps 8 SOMA a month. For the annual really acute attacks I find that use of a TENS machine can keep me on my feet to some degree.
And I refuse to give up the gym although getting anything off the floor has long gone the way of the dodo.

Hearing horror story after horror story about failed surgeries and the doctors who seem to had no alternative but to rush into the same primitive procedures of the 1950's has convinced me that I made the right choice FOR ME.

Friend had a successful 360 caged fusion on S1-L2 but it took 2 years for her to become RELATIVELY pain free. Another had the rods and screws done 3 years ago and she is on, get ready, daily SOMA, butalbitol, noritryptylene, and now oxycodone. That is EVERY DAY for over 3 years now, adding one drug to the other, daily Percocet the latest. She thinks she should not have ANY backache pain at all. Not a rational assumption.

She is in complete denial about the risks of addiction.

Again, I am so sorry to hear how severe your backs are afflicted. Nobody understands like a fellow sufferer (of near 40 years and counting.)

Last edited by Voxx976; 01-29-2013 at 07:01 AM.

 
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Old 01-29-2013, 05:24 PM   #10
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Re: 4 Back Surgeries, Still In Pain

To go thru a surgery or not is a very difficult decision. I am not sure if there is definitive right or wrong answer, It's a matter of what is right for YOU, the individual.

I have never ever regretted going thru the surgeries that I have or the decisions that I have made.

I don't think that my sureries or current pain is the result of "failed back surgeries." the doctors that did the surgery I had confidence in. They helped the area that at the time was the issue.

But eventually for me a NEW problem developed. It had nothing to do with the procedure that was done or what the surgeon did or didnt do.

For whatever reason I was dealt the hand that I have been and thus an ongoing spine issue.

So bottom line for me is not that the surgeries FAILED or that the surgeons FAILED, I developed yet another spine problem that needed to addressed.

I truly feel that if I had NOT gone thru the surgeries that I did I would have been far WORSE off now then I am now. so for whatever it is worth the surgeries that I have gone thru saved me who knows what my life would have been like. I dont think I would be walking at this point had it not been for the surgical intervention.

 
Old 02-02-2013, 03:06 AM   #11
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Re: 4 Back Surgeries, Still In Pain

Hello, I happened to run across your post & wanted you to know I feel your pain. I myself have had 13 back surgeries starting in December of 2003 until present.I know that your Pain can be UN-Bearable and not only Physically but Mentally as well. In Aug 18, 2005 I had to make a decision for my neurosurgeon to go in through the front of me and remove L4 & L5 and install a Ray cage which they no longer do and turned me over an placed 2 rods, 4 screws. What was to be a 4-5 hour surgery lasted 9 1/2 hours. I was in the hospital for 1 week & two days. After being released I was in & out of the hospital 21 times due to pain control. You mentioned you were taking Oxycodone & Morphine I assume for time release. I do not know if you have been referred to a Pain Clinic but with the Mg of your medication you are not getting enough to help to ease the pain. Ask your Doctor about giving you Roxy Codone which come in 5 mg 10 & 30mg. Note this is for break through pain & taking to much of oxycodone you can ingest to much Tylenol. The Roxycodone has no buffer. However no matter what you take you will always endure pain 24/7! Sorry to say this but I can only sit, stand or walk for a short period of time. I feel you on sleep because I have the same problem Hope I have been of some help to you and feel free to apply back. I will be praying for you. No one knows what it is like for us on how we have to live out each day being in pain & the effect it has own our life, changing us forever.

 
Old 02-02-2013, 11:54 AM   #12
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Re: 4 Back Surgeries, Still In Pain

Thanks Eaglewingll for sharing. I also have had multiple surgeries with the last one being almost 10 hours. I take oxycodone with out Tylenol, but it doesn't make the pain go away, just reduces it. My surgeon has been my pain control doctor and he doesn't want to go with any long acting ones yet. It helps to be able to discuss with others who understand.
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27 surgeries, 4 spine, 4 foot, 3 knee, 3 abdominal, 2 hand, & various others. Fibro, accelerated degenerative disease, Hashi Thyroiditis, & arthritis.

 
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