This could be any of us! (arachnoiditis)

[mmglobal]

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.
______________________________________


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]

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]

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]

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]

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

[Claudine Weber]

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]

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

[Claudine Weber]

Thecaloscopy for Arachnoiditis and Tarlovcysts - YouTube

[Claudine Weber]

mechanism of severe and constant pain- Charles Burton - YouTube

[nomorepain]

Mark, i am also interested in this, i have seen this Arachnoiditis in my past medical records prior to spine surgery, or maybe during surgery i can't remember now.....interesting stuff. Summer is coming any plans for a spiney reunite? I'm still not driving but am sure i can arrange a ride that way and home.

[Stingerlee]

Epidural steroid shots debated amid meningitis scare

NASHVILLE -- As authorities continue to focus on a potentially contaminated steroid as the source of a widening outbreak of fungal meningitis, some patient-safety advocates are calling for greater restrictions on the type of injection involved.

They say epidural steroid injections, like the ones given to the meningitis victims, are far too dangerous and should be limited or even banned. But those who give the injections say they are safe when done properly and note the current outbreak appears to have originated from the medicine, not the procedure itself.

The debate was being waged long before the meningitis outbreak began with the Sept. 17 death of a 78-year-old man in Nashville. Since then, at least 46 other people in Tennessee and six more states have come down with the rare and noncontagious infection, federal health officials said Friday. Five, including three in Tennessee, have died.


All received spinal injections of a steroid solution prepared by New England Compounding Center, a compounding pharmacy in Framingham, Mass. The pharmacy has voluntarily ceased operations and recalled the steroid, which health officials suspect was contaminated with one or more fungi. Almost 17,700 vials were shipped to about 75 facilities in 23 states as far away as California.

As a precautionary measure, the pharmacy also has recalled nearly a dozen other medications it produced that have not been linked to the outbreak.

John Dreyzehner, Tennessee's commissioner of health, said investigators have found no indication that the three Tennessee clinics that administered the steroid injections did anything to cause the outbreak.

"Evidence indicates this is a product issue, and we emphasize that," he said, repeating the first part twice for effect.

But some critics say the steroid solution shouldn't have been injected in the first place, saying the procedure's risks far outweigh any medical benefits. They say the outbreak is just the latest example of how dangerous the injections really are.

"I hate that this happened, but it was inevitable," said Terri Lewis, a psychological rehabilitation specialist from Cookeville, Tenn. "This procedure is not safe."

Lewis said her 29-year-old son was injured by epidural steroid shots unrelated to the menigitis outbreak. She claims the shots caused him to develop arachnoiditis, an incurable condition in which scar tissue slowly builds in the spinal column, compressing nerves that lead to debilitating pain and, ultimately, death.

She said more people like her son are being hurt as the number of injections grows.

The number of Medicare patients receiving such injections grew by 159 percent between 2000 and 2010, according to a recent study by Dr. Laxmaiah Manchikanti, chairman of the American Society of Interventional Pain Physicians.

Manchikanti, who operates pain-management clinics in Paducah, Ky., and Marion, Ill., estimated 8.9 million such injections were given in 2010. He did not return calls seeking comment.

Such widespread use with relatively few reported cases of adverse side effects, plus coverage by Medicare, Medicaid and other major insurers, are evidence in support of the procedure's safety, an industry official said.

"The risk of complications from these epidural injections is very small," said Dr. Ray Baker of Kirkland, Wash., president of the International Spine Intervention Society, which has about 3,000 members. "We're not talking about a very risky procedure. We're talking about a very safe procedure that has been performed for a very long time."

While there are no definitive figures available, he estimated that serious complications occur in only one of every 100,000 injections.

Yet critics contend the growth in epidural steroid injections is based more on money than on medical need.

"It does make a lot of easy money for pain clinics," Lewis said.

Medicare and Medicaid guidelines call for paying between $200 and $600 per injection, depending on whether it is given in a doctor's office, an outpatient facility or a hospital. The Centers for Medicare and Medicaid Services said it paid providers $106.4 million for 252,288 injections last year, an average of $421.74 each.

Yet a 2010 audit by the U.S. Department of Health and Human Services' inspector general found a third of the 433 injections from 2007 it studied didn't meet Medicare requirements. They either were not medically necessary or had insufficient documentation about the need for the shot, the audit said.

Physicians' groups say they don't view the injections as a money-maker but as a proven, effective way to relieve their patients' back pain and suffering. But Baker acknowledged that often the drugs injected are not approved for epidural use.

Some have been approved for injection elsewhere on the body but are being used "off-label" -- or in a way that is not specifically approved -- for epidural injection. Others were compounded, or created by combining, mixing and/or altering active ingredients to make custom medications, a process that is not regulated by the U.S. Food and Drug Administration.

But the growing numbers of reported complications from the injections prompted the agency to launch a review panel last year.

The FDA review is focusing on the transforaminal approach, in which steroids are injected into the foramin, a small area just outside the spinal canal where nerve roots exit. This method brings needles within millimeters of crucial spinal arteries.

The review is limited to FDA-approved epidural steroid injections, which does not include those implicated in the fungal meningitis outbreak, FDA spokeswoman Erica V. Jefferson said.

"These compounded steroid injections (methylprednisolone acetate) being investigated as part of the outbreak were NOT approved by the agency," Jefferson said in an email. "Compounded products are not reviewed by FDA for safety, efficacy, and quality prior to marketing."

Patient advocates such as Matthew Clark say more needs to be done.

Clark, of Rogersville, Tenn., received several epidural steroid injections when he lived in Michigan. He stopped after one shot resulted in his sphincter muscle relaxing, causing his intestine to temporarily protrude from his anus.

He now has arachnoiditis, which he blames on the shots.

"It's like having the pain of cancer without the relief of death," he said. "Those shots should be banned."

[Maria]

I got them for 10 years and they helped me greatly. In fact I wish everyone could have gotten the relief I did from properly administered ESIs utilizing fluroscopy to guide.

I had arachnoiditis like symtoms for years post my 2nd spine surgery that failed horribly. That was the most horrendous pain I've every felt as it was from my ileac crests bilat and into both buttocks down the front of my legs (quads) and into the sides of my calves and down thru the bottom of my feet.

The pain was burning, gnawing deep and unrelenting. ESIs back in the day saved my ass literally~

I have a friend who currently is getting them and she has been in a deep deep depression and horrible pain and finally is getting some relief which greatly helps her outlook.

I had probs with myelograms and spinal fluid leaks afterwards for a week each time which gave me gigantic headaches and rendered me flat in bed for 7 days after each one and in a hospital catheterized and using a bedpan.

Various diagnostic tests may affect different people differently and so do different treatments including surgery.

[nomorepain]

I remember seeing this somewhere either in my surgical notes or my medical file, not knowing what it was about. far as I know at this time or the time since my adr surgery. I have some other issues, but the origin is of unknown causes.