This could be any of us! (arachnoiditis)

mmglobal · #1 (**permalink**) 04-08-2012, 08:20 PM

This thread was originally in a separate forum for arachnoiditis patients. That community settled somewhere else and the ispine arach forum never took off. 9/15/2013 I've closed the arach forum and moved the few threads to main iSpine forum.
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I've now spent time with Dr. Warnke in California, and on two trips to Zwickau. As I come to understand more about these problems, it becomes clear that we (the spine patient community) have too much in common with the arach community. According to Dr. Warnke, the process that creates arachnoiditis is the same problem that causes the neuroforaminal and tarlov cysts. Something compromises the dura and blood, medications, contrast and chemicals used in surgery find their way into the spinal cord or cauda equina. Some women get it from spinal epidural anesthesia. Some of us are at risk from poorly performed epidural steriod injections.

Histological studies have determined that arachnoiditis may be part of an elevated immune response that will happen in a small percentage of the patients. Some of us will have CSF leaks that will be resolved by a blood patch. For others, when the blood migrates intradural, it kicks off an exaggerated immune response that causes arachnoiditis.

We have seen many patients who, folloing lumbar fusion or ADR surgery, are left with horrible leg and foot pain that will not resolve. The ADR patients call this 'distraction pain'. I wonder how much of this is arachnoiditis?

My point is that this could be me. I hope that we will ultimately find a way to avoid this disease. First we must learn more about it!

Mark

Maria · #2 (**permalink**) 04-10-2012, 04:14 PM

Mark,
Does arachnoiditis always show up on MRI? Can one have had it and then it "settles down?" I have thought this happened to me or I "only" had "arachnoiditis like" pain for a number of years.

I remember a PM that you and I have both seen (or perhaps Dianne) tell me that if I had more spine surgery I may well reactivate this pain...

whew.. it's really scary to even think back on those days for me.

mmglobal · #3 (**permalink**) 04-11-2012, 09:57 PM

Maria, I'm relatively new to the arach world. I hope that Claudine will be along to clarify things. My understanding is that it is visible on MRI. I hope that someone will post some sample images soon.

I have come to trust Dr. Warnke's opinion. As I understand him, arach is activated by blood, contrast, medications or other foreign substances introduced intradural. Most people will not have a horrible reaction (or they could not do epidural anesthesia, myelography, intrathecal pumps, etc...) Some people will have a highly elevated immune or inflammatory response that kicks off formation of adhesions between nerve rootlets or between rootleds and the arachnoid layer of the cauda equina. This tethering of the nerve rootles creates a constant irritation that generates the neuropathic pain. That process is also responsible for forming the Tarlov or neuroforaminal cysts.

As I understand Dr. Warnke, the inflammatory response can cool down. I don't know if that allows the symptoms to subside. (Claudine?) However, in the patients that have the elevated response (proven by the formation of arach), further spine surgery risking more assults on the dura, can cause more of the elevated response an make things much, much worse.

More as I learn it.

Mark

Maria · #4 (**permalink**) 04-13-2012, 09:06 PM

Hey Mark,
I have cooled it on the bike of late.. sadly as it feels like "freedom" to ride it yet I don't like that sorta broken tailbone type of feeling and having to take it easy when otherswise I do well re back pain. Yeah, it helped my toes that were driving me crazy tho guess I'd rather have them "kill" then my back have any probs!

Whatever ... guess i still have to be careful/thoughtful re this crap. Arghhhhh.....!!!!!

Claudine Weber · #5 (**permalink**) 04-16-2012, 08:56 AM

Quote:

Originally Posted by mmglobal

Maria, I'm relatively new to the arach world. I hope that Claudine will be along to clarify things. My understanding is that it is visible on MRI. I hope that someone will post some sample images soon.

I have come to trust Dr. Warnke's opinion. As I understand him, arach is activated by blood, contrast, medications or other foreign substances introduced intradural. Most people will not have a horrible reaction (or they could not do epidural anesthesia, myelography, intrathecal pumps, etc...) Some people will have a highly elevated immune or inflammatory response that kicks off formation of adhesions between nerve rootlets or between rootleds and the arachnoid layer of the cauda equina. This tethering of the nerve rootles creates a constant irritation that generates the neuropathic pain. That process is also responsible for forming the Tarlov or neuroforaminal cysts.

As I understand Dr. Warnke, the inflammatory response can cool down. I don't know if that allows the symptoms to subside. (Claudine?) However, in the patients that have the elevated response (proven by the formation of arach), further spine surgery risking more assults on the dura, can cause more of the elevated response an make things much, much worse.

More as I learn it.

Mark

The first phase is the warm phase that lasts for a couple of months. Dr Aldrete says that during that period, something can be made. When it is cold, it is the structure of the Arachnoid wall that have changed. I'll post a video showing the process. this video comes from Charles Burton, NS, that is another specialist about Arachnoiditis. One can no more take the transformed structure into the initial one, what is done by Dr Warnke, is, using of a more than tiny ballon, under scan assistance, via inflating and deflating the balloon to make "holes" so that the CSF can flow again and nurrish the nerves roots and rootlets that are suffering but also loosing the protective myelin sheath because of that. The use of the balloon makes that the body does not consider this as an aggression and creates more Arachnoiditis and/or scar tissue...Hope this can help...

Claudine Weber · #6 (**permalink**) 04-16-2012, 08:59 AM

Mechanism of the making of Arachnoiditis-C.Burton - YouTube

Claudine Weber · #7 (**permalink**) 04-16-2012, 09:00 AM

Thecaloscopy for Arachnoiditis and Tarlovcysts - YouTube

Claudine Weber · #8 (**permalink**) 04-16-2012, 08:51 AM

Quote:

Originally Posted by Maria

Mark,
Does arachnoiditis always show up on MRI? Can one have had it and then it "settles down?" I have thought this happened to me or I "only" had "arachnoiditis like" pain for a number of years.

I remember a PM that you and I have both seen (or perhaps Dianne) tell me that if I had more spine surgery I may well reactivate this pain...

whew.. it's really scary to even think back on those days for me.

Yes it is easy for any doctor or neuroradiologist to see it on MRI pictures, but very few of them are to tell about, most are to deny as it is induced by medical actions...
Much love
Claudine