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jewlz67 08-19-2013 04:45 PM

Sooo many questions!!!
I am hoping somebody on here could give me some answers or at least, a general idea of what I am dealing with! I know this is going to start off like I am on the wrong board but please, humor me for the moment.

I injured my ankle in May of last year. As a result, I got RSD/CRPS from it. I received one Sympathetic Nerve Block in my lower left side of my back. The block worked wonderfully!!! When they decided they were gonna do surgery on my ankle, my pain management doctor wanted me to have two nerve blocks, one week apart. She also wanted me to do physical therapy the afternoon of having the blocks. The first nerve block they did, I was in more pain than when she did the block. I thought it was my own fault because, instead of going home and resting then going to therapy, I was on my feet all morning at the courthouse filing my homestead exemption. I know...stupid! Anyways, I couldn't wait to do the second block so that I could get pain relief. That's where my story here starts.
When I got home from having the block, I went ahead and went to bed for a couple of hours like I was told to do. When I woke up, I could barely walk! I was in severe pain!!! For a week, it was all I could do to get up out of bed. The doctor took me off work for a week and told me I could go back that following Monday. She said I was probably just having muscle spasms. This came from the PM doctor. I had an appointment that first week with my orthopedic surgeon and he put me off work indefinitely. Since I had this done last December, I have lost my job because I was unable to resume my full time duties. At the end of January, I went back to work and was to work just four hours a day, light duty/complete sedentary work. I think I cried through the majority of that time I was there because I couldn't tolerate sitting for that long.
So here are the symptoms I had BEFORE the nerve block: burning pain in left foot and ankle. Sharp pain in ankle where torn ligaments were located. Color changes and skin temperature changes in left foot.
Symptoms AFTER my last nerve block: Severe low back pain that radiates down my entire left leg. Stinging pain in my back. Sharp pains (like somebody just shoved a knife in my back) that happens intermittently. Tingling sensations in my leg. Muscle spasms in my calf. Still have the burning pain except now it's down my entire left leg, left arm, and right foot. Every step I take hurts....especially when I get up if I sat for to long. Which is the other problem....if I sit for to long, I have severe back pain. If I stand for to long, I have severe back pain!
I read from somebody's post on the RSD site about arachnoiditis and saw some similarities.
My questions are: Can you get this condition from just three nerve blocks? I've heard of people getting it from epidurals but not from nerve blocks.
What symptoms do you have.
And...what did your MRI show? They said my MRI just showed that I have some mild degeneration and that is what has caused all the pain I am in, along with the gait issues since I haven't walked normal since my injury. REALLY!!! I was walking that way before the block so why the changes after it!!! I am really at a standstill right now and don't know what to do. My doctor still stands by RSD?CRPS in left extremity with low back pain due to mild disc degeneration.
Any answers, opinions would be GREATLY APPRECIATED!!!!
And a huge thank you to the person who posted on the RSD site last Tuesday (8/13/13)

jewlz67 08-19-2013 04:56 PM

Re: Sooo many questions!!!
Oh, I failed to mention the electrical shocks that I feel going down my leg as well. When I start hurting, I feel like I have a knot in the side of my spine, even though I know there is nothing there!

gmak 08-19-2013 05:25 PM

Re: Sooo many questions!!!
Hi jewlz, First of all, arachnoiditis is caused by invasive medical procedures, surgeries, myelogram dye or infection like meningitis. The hallmark sign is clumped nerve roots or peripheral clumped nerve roots seen on MRI. When a foreign substance such as blood, dye or steroid gets into the thecal sac where the cauda equina is last half of spinal cord from L1 to S1 & the spinal nerves & spinal fluid are contained an inflammatory response happens inside the dura & the sp nerves start to swell, become inflamed, push out spinal fluid & eventually scar tissue starts sticking the nerves together & eventually to the dura called correctly adhesive arachnoiditis. Nerve blocks can be epidural or intradural but whether on accident or on purpose the injections can put steroids past the dura into the spinal fluid setting up a possibility for adhesive arach to occur. How long after last 2 nerve blocks was the MRI? It may take awhile to develop enough to see on MRI however some arach specialists agree that if caught early enough it can be treated. I had it on my mri since 1988 & no one told me until 2012. So if i were you i would be getting a copy of any & all epidural steroid injections, nerve blocks & all MRI disks & reports. My main symptom is severe low back pain but i have cramps, "buzzing" like electricity, numb toes, nerve pain on soles & pain in legs rarely.When i found out i read the burton report, the adhesive arachnoiditis syndrome by dr. sarah jones smith. I hope i helped you, a picture is worth a thousand words & there are videos under adhesive arachnoiditis. Let us know, we are here for you!

jewlz67 08-19-2013 06:42 PM

Re: Sooo many questions!!!
Gmak, it was your post that made me look into this!!! I am so glad that you are one who replied to this! The bottom of my feet hurt all the time! My feet change colors, it gets a grayish color like to it and they get very cold! I had the nerve block in December and they did the MRI, I believe, in June. The day I had the MRI was also on a good day...meaning, my pain wasn't as severe as it usually is. I've thought it all to be due to the RSD because you go through flare ups with it. My lower back hurts all the time and I get stabbing pain and a shooting pain that feels like electricity going through my back. The MRI report stated that it showed something with the neural foramina...I would have to go back and look at it. All I know is since I had the nerve block, my life has not been the same! I went from being in minor pain all the time to severe pain all the walking with a cane. Really!!! I'm 46yrs old and I have had elderly people ask me if I needed help!!! I just have the one place in my lower back (which is lower than where the injection was) that always feels like there is a fist there...and then that fist turns into a knife going through my back or just sends pain like a lightening bolt through my leg!

gmak 08-21-2013 08:31 PM

Re: Sooo many questions!!!
Hi jewlz, Im so sorry im so late answering but ive been really down with pain. But your story sounds a great deal like other people who have had gotten arachnoiditis from an invasive spinal injection but also rsd & crps. The main point that i would find hard to ignore is the timing that my pain changed on such & such a date from one point to severe with disability but im just a regular person not a dr & so if i were you i would make an appt with the best spine only neurosurgeon at a university hospital setting that i could reasonable see or a spine only fellowship trained orthopedic surgeon but what areas that are to be looked into regarding arachnoiditis are the three layers of the thecal sac, the meninges, mainly the arachnoid or dura, & the lower part of the spinal cord the cauda equina or the spinal nerves or nerve roots & i would bring all my MRI disks & reports for him to evaluate & also get a neurological exam testing all the reflexes etc & go from there as far as evaluation & in my case i would refuse myelograms, discograms, spinal injections until i knew for a fact that i was in the clear as far as adhesive arachnoiditis goes.

jewlz67 08-22-2013 06:04 AM

Re: Sooo many questions!!!
All that I saw on my MRI was it saying:
L4-L5 had mild disk budge eccentric to the right causing very mild right neural foramina narrowing. The disk material is slightly abutting the exiting right L4 nerve root laterally. L5-S1 No evidence of significant disk displacement, spinal stenosis, or foraminal compromise. Impression: MINIMAL DEGENERATIVE DISK DISEASE AT THE L4-L5 LEVEL. So...this is what I have to work with....MINIMAL degenerative disk disease. why does it hurt to sit, stand, walk....why is my RSD pain so much worse? It wasn't that bad until they did my last nerve block! Before the block, I just walked with a bit of a limp due to my ankle injury, now I walk with a cane! I'm just so frustrated!!! The PM doctor still thinks the back pain is just from degeneration and my gait being off. I don't know what else to do.

gmak 08-22-2013 04:50 PM

Re: Sooo many questions!!!
Hi jewlz, Do you live in an area where you can see a practice limited to spines only neurosurgeon?

jewlz67 08-22-2013 06:19 PM

Re: Sooo many questions!!!
I'm sure I probably could find one. I live about twenty miles from Chicago, I just don't want to go to Chicago if I don't have to! By the way, I love the scripture that you have listed! How can a neurosurgeon help and if there is nothing they can do, I hate to say it, what's the point? They would probably put me on the same drugs I'm already taking for the RSD.

gmak 08-22-2013 06:53 PM

Re: Sooo many questions!!!
Hi jewlz, The point i see is to know for certain because i read in several places by Dr Jorge aldrete that if caught early arach can he treated & to save you from this if possible is a chance i certainly would want. Are you by the indiana medical school that i cannot remember the name of but is rated very high in the country?

jewlz67 08-22-2013 07:05 PM

Re: Sooo many questions!!!
No, it's in Indianapolis. Somebody else gave me his name that is on ********. I tried to send him an email with the MRI results. Somebody told me if you do that, he will read it for free. I did that a couple of days ago, now I am just waiting for a reply. This has been happening since December so I hope it isn't to late already.

gmak 08-22-2013 07:55 PM

Re: Sooo many questions!!!
Hi jewlz, Im so glad that you did that. He emailed me back but awhile back. Great!

KibblesnBits 08-22-2013 08:49 PM

Re: Sooo many questions!!!
What did I do gmak?

gmak 08-22-2013 10:26 PM

Re: Sooo many questions!!!
Sorry i typed wrong name! Forgive me.

KibblesnBits 08-22-2013 11:00 PM

Re: Sooo many questions!!!
No worries...Have a good night!

jewlz67 08-23-2013 04:49 PM

Re: Sooo many questions!!!
I still haven't received an email from him. How long did it take for you to get a reply?

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