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What next- now I'm told arthritis is the cause of my pain
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chronic1008 posted:
I have posted many times my situation, at the risk of sounding like a broken record I will summarize. I've had 8 back surgeries (2 fusions that fused my lower 3 vertebrae+ a bunch of dissect omits! lame necrosis! etched..) I have a spinal stimulator for right leg nerve pain. I was doing great from my last surgery of Sept 2011- lost 80 lbs I gained while laying on couch for 4years and could be on my feet all day. Then about April of 2013 the pain began to increase. At first steady until about Sept when it really got bad. I had a Myelogram done on January 3 2014 and I finally get to see my surgeon this morning to translate the results. I was told via phone call it is arthritis and there is nothing to be done. The Myelogram shows a possible recurrent disc bulge on the L5S1 level. This change occurred after my last surgery because I had a myelogram done post 8th surgery and this new. Myelogram shows several changes. I'm told that it can't be disc material because of the fusion. The increase in pain in my right leg has me doubting this. I live in Chicago and wonder if a climate change to the South West might help. I am now on my recliner 90% of my day. Simple activity like making my kids sandwiches for lunch in the morning raises the level of pain drastically. I then sit on the recliner the rest of the day.

I guess I will find out soon enough if the weather plays this much of a factor when this Chicago weather starts to change. I gave my Myelogram report to a Laser based treatment facility and based on initial review they believe there is a couple possible minimally invasive procedures that mIght help. I say minimally invasive as opposed to the open back surgeries I have always had. I want to be careful and not look for the "magic answer" from a pill or procedure and I am wondering if anyone has had any experience with laser surgery after having open back surgery and what the results were for you. I understand everyone is different and reacts to treatment differently, just trying to get some info on laser surgery. My pain Dr believes she can relieve some of the pain with a radio frequency procedure but the insurance company has denied paying for this. I am currently taking 120 mg of Oxycotin per day with 2mg of Dilaudid 4X a day. Dilaudid is supposedly for breakthrough pain but this pain doesn't exactly breakthrough--it's more constant. Managing my meds has become a challenge since the pain far exceeds the pills. I do not want to give up my drivers license again though so I don't want to raise the meds.

I know many of you face worse pain and problems than mine. I hope everyone can find some relief and peace with their daily struggles.
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blessedladyptl responded:
If you haven't had a EMG, you need to. It would rule out or confirm if the pain in your leg is from nerve damage. Also Do Your Own Research where the Laser Surgery is concerned. Check number of surgeries like yours done and the number/percentage is success and failures. Also remember that just because it is listed as a success Does Not Mean the patient is doing better.See if there is a support group where you live for those with chronic pain. That is often a good place to find out how good certain surgeries as well as surgeons have been for others.
 
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annette030 replied to blessedladyptl's response:
Good advice, success must be defined so you understand exactly what is meant by the word. One doc may consider success to mean an increase in function, another may think a decrease in pain does, but the patient may define success as zero pain and perfect function. This patient may never be content with any outcome.

Take care, Annette
 
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chronic1008 replied to blessedladyptl's response:
I had a EMG done last Fall 2013 and it showed L5S1 nerve being affected. I had a spinal stimulator placed in Jan 2011 and my Dr feels that should take care of it. I just saw my neurosurgeon yesterday morning (I typed this original post prior to seeing him). My myelogram of Jan 3, 2014 shows bone overgrowth from the fusion impacting the L5S1 nerve. I knew this a long time ago as my right leg has increased dramatically in pain since last Spring. I'm sure readers will agree, when you are in so much pain you notice every new area or any slight increases, right? This myelogram shows several changes since my last myelogram that was done shortly after my 8th surgery in Sept 2011. Foramen narrowing due to arthritis, scar tissue and bone overgrowth as well as nerve being affected and a new bulge in disc at the level above where my fusion stops (fusion stops at L3-4, bulge at L2-3). This bulge may not be the source of anything but due to increase in pain in right hip, groin, thigh and front of knee my pain dr believes the nerve is being affected here too. She (pain dr) wants to do some diagnostic testing at several levels to determine which is the worse and attack them from there. My work comp has refused her request twice so far. Since my neurosurgeon agreed yesterday that this makes sense I've scheduled this myself and for $500 will get some answers next week--insurance or not.

My neurosurgeon is almost 70 years old. A great dr (I thought) and that's why I've used him for over 14 years and chose him to do 7 of my 8 operations. Yesterday I lost all faith in him. After reviewing my myelogram, EMG and physical exam and listening to my pain complaints he agreed I should be off work until this is figured out. I've been off of full time work since Dec 19, 2005 due to this work accident. Then the insurance nurse came into the room and said he had previously wrote back to work at light duty (based on old information). He abruptly changed his tune and ordered me back to work. I was devastated at this. I've been working since very young. Started going to work with my Father at around 8-9 years old and washed his semi truck tires every Saturday, cleaned his cab, vacuumed his floors every summer for years. Did this for some quarters. Then sold perfume and cologne door to door at middle school age at neighborhood beauty salons. Great experience for a shy boy. Got my license and moved on to McDonalds. I'm not lazy or want to live off of the Govt. I now started a web site and blog about wrestling and sell wrestling themed shirts online. But now the insurance will have me physically filling out applications for work everyone knows that I just can't do. For my family's sake, I will jump through these hoops and try to keep a smile on my face but it didn't have to be this way.

My neurosurgeon did write me a referral to see Drs at Rush hospital in Chicago and admitted they have procedures that he just hasn't kept up with. My dr does traditional open back surgery only. When I asked him about lasers, he dismissed it and laughed and told me to be careful of watching too many ads on TV. Along with writing the referral to Rush, my Dr has also relinquished control of my case to my pain dr. She is much more understanding of my condition and since I see her every 30 days I believe she will be a better advocate on my behalf--at least I hope so. My pain dr instructed me to be careful about taking my medicine and driving. Yet my neurosurgeon didn't even consider this.

This system is broken, I know I'm preaching to the choir here. My vocational therapist once told me last year that the divorce rate of work comp patients was something like 80-90%. Seems caregivers don't take the family dynamic into consideration a whole lot.

I have also contacted a laser based medical facility and they have written me a plan of medical treatment based on the new myelogram report. Of course that plan is subject to change based on a physical exam and medical chart review.
 
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chronic1008 replied to annette030's response:
Annette030- I like to think of myself as a optimistic realist. At this point success for me would be to minimize my pain by any measure. I realize with so trauma to my lumbar I will never go back to the things I once enjoyed. But I have created a whole new life based on more sedentary activity. I manage several fb pages, a wrestling website, I sponsor young athletes to compete in National events and help high school female wrestlers get noticed by college coaches for possible scholarships, I own 2 apparel lines that sell online sports themed clothing (part owners of one and Illinois distributor for the other). I really enjoy coaching my sons soccer team and daughters softball team but I have several asst coaches and parents that are aware of my condition and help out to a fantastic degree. While off work my wife and I have purchased and remodeled 4 foreclosed homes and rent 3 sold one. So I still keep moving and no matter what condition I may end up have a responsibility to my wife and family to contribute to their needs. I just sometimes have to be creative in how I accomplish that. So I may never be fully content with any outcome but should anyone? Shouldn't we always strive for better and keep hoping and be optimistic that our condition today may be vastly different than our condition tomorrow, next week or next year?

If I ever gave any impression that I will not accept anything other than zero pain and perfect function, that was not my intent. That ship has long sailed. I'd be happy with sleeping in my bed as opposed to my recliner, or maybe more than 2 hours of sleep at any stretch, or maybe be able to coach a 45 minute soccer game and not have to rush out afterward to get home and get horizontal. I'd seek any improvement as success at this point.
 
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annette030 replied to chronic1008's response:
No, you did not give me that impression at all. I was just trying to give an example, so folks would understand exactly what I meant.

Take care, Annette
 
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cweinbl responded:
Fentanyl is way more powerful than Dilaudid or Oxycodone (Oxycontin is just ER Oxycodone). It added 9 wonderful years to my career, wiping out 80% of my pain, before I eventually became tolerant. You did not mention using it. If you use it and then have breakthrough pain, you can then use Oxycodone or Hydrocodone.


I've had four failed spine surgeries and lifelong central canal stenosis. Left with massive scarring, arthritis, collapsed spine, multilevel fusion, etc. only Fentanyl allowed to regain my life, my family and my career.


Are you a taxi or truck driver? I fail to comprehend why you would lose your license from using a powerful opioid. I drove for many years while using powerful medications. So what? After a few weeks of using Fentanyl, you only notice less pain - nothing else.


I've had RF ablation (rhyzotomy). It INCREASED my pain PERMANENTLY. I've heard of many others who experienced this. The success rate is poor. Hell, the entire concept is poor. Instead of less pain, frying a nerve root can easily create more pain, forever.


Here is the latest, greatest research on all forms of spinal interventions: http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf . The success rates are deplorable for almost everything. I've tried them all, except for the intrathecal infusion pump (60% success rate for those who have had prior spine surgery). The odds are terrible. Some patients have died from MRSA infection following implantation or removal of the spinal cord stimulator and the IT pump.


EMG is likely to tell you what you already know - that you have a compromised spinal nerve root. No need to prove something you already know. Myelogram is the most definitive. Yet, even if it revealed extruded disc material, would you really want more surgery, more fibrosis, more inflammation, etc.?


Finally, I learned how to reduce my pain by up to 20% at any time with biofeedback. Mind-body treatments are powerful. And they involve no drugs, no invasive implantations, no surgery and no danger. Other mind-body techniques include meditation, systematic relaxation and Yoga. Similar options include TENS, acupuncture, hypnosis, corset, brace and injections.
cweinbl
csw2@bex.net
 
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blessedladyptl replied to cweinbl's response:
For insurance reasons, many companies will not allow you to work if you are taking opioids. It doesn't matter if they effect you or not.


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