Hi,

Does anyone know what this operation is that they're talking about in this story from The Narragansett Times? I've exerpted the section.
all the best

Pain patient's Blue Cross appeal denied; fundraiser in the works

By JULIE NOVAK 12/08/2006
©The Narragansett Times 2006

WAKEFIELD - Blue Cross Blue Shield of Rhode Island has denied Wakefield resident Elizabeth Bergan's appeal for coverage of a medical procedure that could significantly relieve her pain and improve her quality of life.
Bergan, who was diagnosed with Chronic Regional Pain Syndrome (CRPS) and was featured in the Dec. 1 issue of The Times, experiences intense burning and vibrating pain in her legs and feet as a result of the disorder. Swelling and excessive feeling excessively hot or cold temperatures are also some of her symptoms.
Last month Bergan visited a specialist in Texas, who recommended that she undergo a procedure he invented to relieve her symptoms. The procedure would remove scar tissue from the affected nerves in the spinal canal that aggravate her limbs.
Blue Cross, Bergan's insurance provider, rejected her initial request, and rejected her appeal this week, deeming the procedure "experimental." The denial marks her third rejection for coverage. Previous appeals were denied for the same reason
citing a lack of research to support that the procedure is both safe and effective. (The procedure is covered by Blue Cross Blue Shield of Texas.).......contd at:
http://www.zwire.com/site/news.cfm?B...&PAG=461&rfi=9

By JULIE NOVAK

WAKEFIELD - Every day Elizabeth Bergan tells herself, "The more I do, the more I can do.

"It's my mantra," she says.

And every day her pain becomes more unbearable, but that hasn't stopped her from trying to live life to the fullest.

Bergan, 45, was diagnosed with Chronic Regional Pain Syndrome (CRPS) in December 2005. Formerly known as Reflex Sympathetic Dystrophy Syndrome, CRPS typically affects the arms or legs with intense burning or aching pain. Swelling, alternating hot and cold temperatures and sweating are also common symptoms. Bergan experiences them all every day.

"It feels like someone is taking a torch to my feet," she said. "It's like a pager set to buzz; they vibrate 24-7."

For the past year Bergan's symptoms have steadily worsened. She is unable to walk without the assistance of a walker. Her left foot is in a brace to correct "foot drop," a disorder that stemmed from CRPS which prevents her from flexing her ankle. Her right foot is showing early signs of foot drop and her right hand is starting to stiffen. Medication and physical therapy twice weekly provide little relief. On a scale of 1 to 10, with 1 being no pain and 10 debilitating pain, Bergan never ranks better than a 4 on a good day. For a compassionate athlete who was dedicated to riding her bicycle in marathon races to raise money for people with AIDS, diabetes and multiple sclerosis, the pain - and accompanying treatment - have been difficult to tolerate.

"I miss walking with my husband and my dogs, going out with friends, visiting my sisters, even housework. I can't do these things like I used to," she said.

The emotional toll CRPS has taken on Bergan's life is equally painful. "I feel like a shell of myself," she said.

Bergan's medical problems started in 2002 following a car accident in which she was hit by a truck. She has had four back surgeries and three neck surgeries since to correct injuries she suffered in the accident. The onset of CRPS started shortly after her third back surgery and was aggravated by the fourth in March 2006 when screws were removed from her lower back and scar tissue formed on nerves that affect her limbs.

According to the Mayo Foundation for Medical Education and Research, CRPS most commonly affects people between the ages of 40 and 60. Treatment is most effective when started early. The cause of the disorder is not clear, though many cases are triggered by trauma to a nerve. Surgery, a heart attack or a gunshot wound are examples of trauma. As in Bergan's case, the disorder can occur after an injury that didn't directly damage the nerves in the affected limbs. Soldiers wounded in the Civil War were some of the first to report symptoms of CRPS and described severe pain even after their wounds had healed.

There is hope for Bergan, though. Through a referral from Dr. Edward Kent, her physician at Rhode Island Pain Medicine in Westerly, she found Dr. Gabor Racz. Racz practices in Lubbock, Texas at the International Pain Institute. Earlier this month Bergan went to see him for an evaluation of her condition. He recommended that she undergo a procedure he is credited with inventing that involves injecting medicine through a catheter inserted into the spine. Called Percutaneous Lysis of Epidural Adhesions, the procedure will remove scar tissue from the affected nerves in the spinal canal and, if successful, relieve her symptoms.

There is one hitch: Blue Cross Blue Shield of Rhode Island, Bergan's health care insurer, will not cover the estimated $25,000 cost of the procedure. After reviewing Bergan's case Blue Cross deemed the procedure "experimental and investigative" at this time.

"It was deemed experimental because there is not enough research to support that it is safe and effective," said Kim Keough, the agency's assistant vice president of public relations. "Unfortunately what is out there in terms of research isn't much. There just isn't enough positive results."

Blue Cross typically consults experts outside of their agency for assistance in evaluating cases involving new procedures or those not currently covered. For Bergan's case they consulted an anesthesiologist and a medical association for a second opinion.

"Initially we review the case, but we also think it's good to get an outside opinion to make sure we're not missing something," Keough said. "We have confidence in their expertise because that's what they do."

Blue Cross covers medication and treatment for pain on a regular basis, but is cautious when adding a new procedure to their coverage plan.

"If we pay for every single one of the experimental procedures we wouldn't be here to provide for our members. We have to be very careful about evaluating procedures," Keough said. When asked why the procedure is covered by Blue Cross in Texas, but not Rhode Island, Keough explained that each Blue Cross office is a separate entity.

"Each insurance company like Blue Cross will determine what their own plan benefits will look like based on mandates and legislation in their state," she said.

With some help from friends and family, Bergan is again appealing Blue Cross's decision not to cover the procedure. She has also approached Senator Jack Reed and Representative Jim Langevin about her case. If the decision is overturned and coverage is approved she will fly to Texas to have the procedure on Dec. 5. If not, she will decide what to do next. To date, the Bergans estimate the cost of her care for medication and office visits since the accident is in the tens of thousands of dollars.

To help Bergan cope with the day-to-day agony, her husband David, co-owner of the Rocky Point Pub in Warwick and former owner of D.B.'s Pizza in Wakefield, has been a staunch supporter. During her trip to Texas he planted three heart-shaped notes in her suitcase to say "Don't worry about a thing, 'cause every little thing is gonna be alright," the lyrics of Bob Marley's song "Three Little Birds."

"He's been there for me since day one," Bergan said.

Her friend Lee Guilmette, president of Windswept Mortgage on Main Street, has also been an advocate for Bergan, conducting research on CRPS, helping her with insurance paperwork and accompanying her to Texas to meet Racz. The two have a close friendship and consider themselves sisters. They used to ride in bicycle races to support those with AIDS, diabetes or multiple sclerosis, something Bergan misses for the camaraderie of spending time with her friend and helping others.

"You knew you were doing it for them because they couldn't do it themselves," she said. "It was very rewarding."

When she is feeling up to it, Bergan continues to volunteer in the Wakefield YMCA's Reading to Rover program. She was one of the first to participate with her dog Marley, visiting elementary schools to teach children how to read. Prior to her surgery in November 2005, Bergan was participating regularly and received an award for her efforts.

"She's always been there for people in need and now she needs some help," Guilmette said. "Timing is of the essence because she's getting worse."

While Bergan is worried about losing her ability to walk and continuing a lifetime of medication to relieve her pain, she isn't giving up.

"The more I do the more I can do," she said. "Even if I don't get better I want to be an advocate for other people so they don't have to go through this."

http://www.rsds-crps-news.blogspot.com/

Wow! Many thanks, Catherine, I couldn't have got a more complete answer!

I am a bit confused though - I'm also very foggy at the moment, so could have missed something - because these stories seem to imply that RSD/CRPS in this case is caused by scar tissue and if this is removed it will stop the RSD - i.e. that there's a physical, mechanical cause which is correctible. I don't really know what to make of it, because if that's the case then it's not actually RSD (although she may have RSD on top of everything else...). Very interesting though, I hope she has the op so we can see the outcome...

Thanks again, all the best

Hi miss irie and Artist,

Before talking about this procudere, let me introduce my bona fides on the subject: The 1995 assault that led to my RSD also produced several other diagnoses, including:

Epidural fibrosis at the foraminal space at both sides of S2; which means that scar tissue was compressing my nerve roots at the foraminal space; the point where S2 nerves enter the spinal cord.

Arachnoiditis; scar tissue at/on the arachnoid, the middle layer of three that surround the spinal cord and contain the cerebro-spinal fluid that allows the spinal cord to flex and move.

S2 radiculopathy; which is a measure of neuromuscular response diagnosed by electromyeogram (EMG).

Since these disorders define my pain and disability even more that the RSD, I began researching them first. I have not researched them recently, but my neurosurgeon cares and he closely keeps up with the literature about these disorders.

Meanwhile, ten years ago a surgical procedure called something like 'endoscopic surgical removal of epidural adhesions (memory fades), which used a tiny video-cam to focus on magnifying the scar tissue so the surgeon can sweep it away with a scalpel controlled through the endoscope.

Epidural can mean inside the spinal canal, but because lysis simply means rupturing of cell membranes and the procedure describes removing adhesions, I suspect it means outside of the spinal cord at the dura, the outer layer of the 3 spinal cord coverings. If it were intended to remove scar tissue from the arachnoid or the pia, the inner layer, I think these names would be used rather than epidural.

I suspect this means the surgeon has introduced a chemical to dissolve scar tissue at the foraminal space to replace the more invasive endoscopic surgery. I would not allow anyone to inject a chemical at or near my spinal cord unless the procedure had been demonstrated to be both safe and effective for at least 10 years.

I recall a few years ago when a similar procudure to dissolve the sympathetic nerve, replacing the surgical sympathectomy that was rapidly waning in popularity, created severe scarring and tissue damage in RSD patients.

Well, Dr Schwartzmann, once an advocate of surgical sympathectomies has now abandoned sympathetic nerve damage as a cause of RSD and has returned to peripheral nerve damage. In other words, big S should tell you that patients who underwent these chemical sympathectomies were sacraficed by attacking the wrong nerves and damaging nerve and tissue.

It gets worse; since I have exactly the diagnosis I suspect this patient has (hers caused by scar tissue over screws, mine by traumatic damage resulting in scar tissue, and there is absolutely no evidence that this scar tissue causes RSD; it causes radiculopathy and radicular pain.

Another reason epidural adhesions (scar tissue) can't explain RSD is that they are site specific: they can only affect nerves they actually touch, but secondary RSD symptoms can appear great distances from the original site. How in the world can scar tissue causing leg pain produce arm or hand pain?

If I am correct that this patient's diagnosis is the same as mine, epidural lysis might reduce radicular pain; but what of the risk? I just described RSD patients who suffered even more from the chemical damage that from the RSD it was intended to cure.

I am also extremely concerned over the fact that both medical providers appear to work for private pain clinics. Research into injecting any chemical intended to dissolve cells near the spine should be undertaken at a minimum of two university hospitals, not pain clinics.

Unfortunately, the FDA allows off-label use of any chemical or medication they approve for treatment of one disorder to treat any other non-related disorder, and many doctors and pain clinics put patient safety after profit. This lady may well learn some time in the future that losing this battle is in her best interest...Vic

Artist,
I just had scar tissue removed from my navel down to my pelvic area and it won't do anything for my CRPS but it sounds to me like he thinks it will. I still have RSD in my pelvic area along with other parts of my body. I have a pain patch in the lower left pelvic area tonight. Sorry I hope I'm not being too grapic for anyone. All I'm saying is I don't understand why he would think removing scar tissue would help the CRPS.

They also keep talking about treatment in the early stages of CRPS, I don't believe that and they seem to be using that to deny her treatment.

It's sad though that she is trying to get money for a treatment that doesn't sound like it would help her. I would think if she got the money it would benefit her to use it in other areas such as pain pumps, blocks, SCS, triggerpoint injections and other things that seem to help people.

This is just my opinion, I hope I'm not saying something that might offend anyone.

I don't believe how lowdown WC is but then again that goes into the Government mess we have today and we can't go there on here, I know that.

The big companies such as WC, pharmaceutical, oil companies, Medical companies, and several others are really takeing advantage of what is being handed to them today on a silver platter.

Sorry I got off of what we were talking about but it just makes me so mad to see how the elderly and disabled have been left behind.

By the way, I heard Medicare is going to be cut by 5% on the news today.

I had blue cross year ago and they wouldn't even pay for my ear surgery and I had full coverage.

I'm not saying don't check into this procedure, please don't think I'm discouraging you from checking out anything that might help you.

take care Artist.
Ada

Hi Ada,

No, I wasn't thinking of it for myself, not at all. I reckoned that either this surgeon had come up with something I hadn't heard of before, or that, as you say, the surgeon thinks it will help RSD, which seems nonsense, or that the journalist has misunderstood the complications of her condition.

Vic came up with the word I was looking for - radiculopathy. I know that removing old adhesions can help considerably for things like TOS, Fibrosis etc, and it sounds like she has something along those lines; plus nerve compression. Shame the journalist didn't tell us more about her condition.

As it stands, I think the story is very misleading for people who don't know about RSD, because it sounds like all you need is an operation to cure the condition.

Anyway, thought I'd better see if I'd missed some new "miracle cure"....drat, wouldn't that have been nice!!

BTW, thanks Vic for explaining it to me, saved me having to look up those med terms for myself . I kind of wish that lady could see this thread...

Oh, and Ada, no you don't get thrown off this board for bringing up politics (different rules, much more liberal)....

all the best

I realize this is a very old post. My wife's doctor suggested that she may want to see this doctor "Dr. Gabor Racz". It seems the hospital, The International Pain Institute in Texas where he practices is supposed to be on the cutting edge in treating those specifically with full body RSD. Anyone have a take on this?

jim

Jim,
Definitely put some research into background info on the doc. And if he suggests any procedures you are uncomfortable with, you are always able to get a second opinion. If this is an old article, perhaps he is now doing different techniques for treating pain. Although the article is scary, as it seems totally disjointed for a RSD patient, make your own opinion based on your experience. Just my two cents. :P

Thanks elijjennings. Absolutely! This procedure is one my wife would never ever partake in. Thus the reason I brought this thread back to life. He may have progressed and learned plenty from the old and very dangerous procedures of the past. What I found interesting in what my wife's doctor said is they really are interested in those with full body RSD, those who've had the disease for sometime and are not narcophobiacs.