Part 3

May 8, 2006 at 8:41 pm

Mailis-Gagnon, a high-energy individual who immigrated to Canada from Greece and raised two sons while finishing several medical degrees, had to fight to make her pain program a permanent fixture at her hospital. Her program includes pain specialists, psychiatrists, other health professionals and in-patient beds. But overall, she says bluntly, “pain facilities throughout the country suck.” She has formed an association with other pain clinic directors in Ontario to advocate for more multidisciplinary pain facilities.

Some provinces and territories, namely P.E.I., Nunavut and the Yukon, do not have a single comprehensive pain program. Saskatchewan, Manitoba, New Brunswick and Newfoundland each have one publicly funded program, while the average waiting list for chronic pain treatment elsewhere in Canada ranges from 14 months in Alberta to 26 months in Ontario, to 42 months in Nova Scotia.

Besides better access to pain facilities, Mailis-Gagnon and her cohorts would like to see provincial and territorial health plans widen the range of treatments available. “Some of the most important treatments for persistent pain fall into the psychological category, such as cognitive behavioural techniques. These are unquestionably not funded by the system, unless you are involved in a car accident or you belong to worker’s compensation.” Universal coverage tends to be limited to medical treatments such as pharmaceuticals.

Pain specialists need to keep their options open. “There are a lot of good pharmaceutical options out there, but they all carry side-effects,” says Morley-Forster. “For some people that precludes them using anything. So…we have to have a lot of tools in our toolbox.”

Those other tools include acupuncture, massage, physiotherapy and lifestyle changes. Morley-Forster adds, “I personally like warm water therapy and cognitive behavioural therapy, to try to get people to think differently about their pain.” The latter approach involves getting a person to recognize and change negative behaviour or thinking patterns through techniques such as imagery, role-playing and systematic desensitization.

Warm water therapy is a natural treatment that is gaining recognition in Canada. Unlike aqua-aerobics classes in regular pools, where the water is cold and the movements can be jarring, warm water helps muscles to become more pliable and therefore more responsive to conditioning exercises, massage therapy or chiropractic treatment.

The gentle resistance provided by the water is ideal for seniors and people recovering from trauma such as motor vehicle accidents. “We want to move people so that they’re building muscle and stability–everything to help balance and co-ordination,” says Judy Doyle, who runs Water Moves Aqua Therapy in Calgary. The medical community has been sending more referrals her way, and she counts among her clients war veterans, who can receive this treatment through Veterans Affairs Canada.

Natural medicine practitioner Dr. Anthony Martin of Sudbury, Ont., favours a non-pharmaceutical approach to pain relief, using food and anti-inflammatory supplements such as systemic oral enzymes (proteins that activate body processes), pine bark extract and hemp seed oil. “The idea, in any treatment, is to reduce inflammation. Systemic oral enzymes (like those found in fruits and vegetables) go into the bloodstream like Pac men (in a video game) and look for inflammation.” Pine bark extract reduces the activity of cooxygenase (COX) enzymes, alleviating inflammation but with no side-effects. Finally, Martin adds, hemp seed oil provides its beneficial effects through a high concentration of the healthy Omega 3 oil. “I found that taking between five and 10 grams a day is one of the great anti-inflammatories you can find.”

But the first thing he tells his patients is to change their diet by eliminating junk food and eating whole foods, particularly fibre, fruits and vegetables. “The key is food. Because of our lifestyles, and especially if you have a chronic disease, what you put in your mouth is going to become either a good experience or a bad experience. You are what you eat.”

Regardless of how you choose to relieve your pain, the important thing is that you don’t wait, says Dr. Lucia Gagliese, a clinical psychologist who conducts research on chronic pain and aging for the University Hospital Network in Toronto. “The thinking out there is, wait until the pain is really bad and then take something. What the research is showing is that it’s the opposite. The sooner you treat the pain, the lower the chances are that it’s going to become chronic.”

As for the age factor, Gagliese says, “You are more likely, as you age, to have some kinds of chronic pain, like arthritis. Other kinds of pain actually decrease as you get older, like some kinds of headaches and visceral pains.” Still other things plateau after age 50, like back pain.

Gagliese emphasizes that while it is not unusual for seniors to have pain, “it is not something that should just be accepted, like wrinkling or losing your hair.” In her studies she has found that older patients tend to be wary of using medication. “They’re reluctant to use it because it can have side-effects, they don’t want to become tolerant, and so on. The evidence, though, is that if you’re careful, if you take your pain medication under a physician’s supervision, it’s very safe. It is much safer in the long run to treat your pain than to experience it for a long time.”

And your mind will be the better for it.



Part 3

May 8, 2006 at 7:33 pm

Fred Martin
Registered: Jun 2005
Location: Outside Atlanta, GA
Posts: 85
I must respectfully dissagree with the posting from “extremely” regarding the nerve biospy. That ended up being the only way they could make an absolute diagnosis for me. They took a small nerve from the left foot on the middle outside area, They did it in day surgery, in by 7 A.M and home by 4 P.M. No sutures, only a butter-fly band aid. Yes I did sustain a lost of sensory feeling in that small part of my foot, but it does not effect me in any other way. There were no motor function losses due to the nerve biopsy in my foot. I was aware of the sensory loss for a few months, but now I don’t even think about it. My insurance company paid 100% of the cost as the surgery was done on an out patient basis. Health care programs vary greatly, so one would need to contact the pre-certification company used by his’her individual insurer.
My biopsy was done by a neuro-surgeon, so perhaps that made a difference. He also took a small muscle biopsy out of the left upper thigh, and once the insision healed, I never knew that was done. The muscle biopsy produced not motor or sensory loss.
Perhaps biopsies are like treatments. Each patient may react differently, but the biopsies also depend a lot on who has the knife. I have absolutely no second thoughts about my biospies, in fact was relieved because I then knew without question that the CIDP diagnosis was accurate.
I do agree however, that you must do your research and ask your doctor as many questions as possible to make sure that his/her diagnosis testing and treatments track what others have experienced over the years. The GBS/CIDP foundation is a good information source also. They have tapes/CD’s of presentations from previous symposium’s available for a small fee. I found several of these to be very helpful to me in the early years after my diagnosis.
Stay after it, stay positive and let us know how you are progressing.
Registered: Jan 2005
Location: New Jersey
Posts: 53
I agree with you about the sural nerve biopsy. It is just like any other biopsy from any other part of the body. Just as with Breast biopsy, prostate biopsy, and biopsies of various lumps and bumps on the human body, it is usually a very effect tool for making the diagnosis. The trick with sural nerve biopsy is to have a good neuropathologist to review the sides, as well as to guide the surgeon in so far as exactly how the specimen is to be preserved and transported, and how the lab is to treat the specimen with regard to staining, etc. Without a competent lab and experienced neuropathologist, the biopsy is worthless. With these things, and good communication between the surgeon and the neuropathologist, the biopsy is an invaluable piece of data. After all, the pathologist is looking directly at the nerve, and can see whether the problem is demyelinization, or dying back of the axons, or whatever. The only downside is some numbness on the outside of the foot, which usually goes away after a number of months. It is a very useful tool to aid in the diagnosis of a disease which can have so many variables. Don’t deny yourself, or your doctor, of this valuable diagnostic entity, especially when there is any question of the diagnosis. Bob

Senior Member

Registered: Apr 2005
Location: Cornwall,Ontario,Canada
Posts: 290
I just had a nerve biopsy still recovering. Having my foot hurt like hell and getting electric shock on a regular basis. So I hope they find out what is wrong with me. The Surgeon who did the biopsy asked me why it was being done. I told him because my DR suspect CIDP. After the biopsy I asked the surgeon for pamphlet on CIDP and he told me to wait to see what I have he doesn’t think it’s CIDP. MY neurologist is 35yrs old my Neuro Surgeon is 70 yrs old. So I hope the 35yrs old know what she is doing.

Dick S
Senior Member

Registered: Apr 2002
Location: Foothills of NC
Posts: 1481

On the fairly quick diagnosis part. Any neurologist who diagnoses you with CIDP in less than two or three months is missing the primary position of the neuropathy, that it is chronic. The presentation of a demyelinating polyneuropathy, doesn’t make it chronic, time does. For it to be CIDP, the “active attack” has to last longer than 8 weeks.

Having said this, By the time you have an attack (depending on the severity), and you go through “some” tests, and they start to rule some stuff out, and then they finally get to CIDP, it usually takes a while. If you are severly incapacitated, the attack will be acute, and it will be called GBS. A GBS attack will stop, usually within 4 weeks, then a recovery period, with no more attacks. CIDP, the attack is USUALLY not as severe, but lasts longer. And will relapse. But frequently, it will take longer than eight weeks, from the time you start being attacked until you get a diagnosis.

If a Neuro “suspects” CIDP, and treats you for it before 8 weeks, he could confirm his diagnosis by your response to treatment. But he really would have missed the “Chronic” element of the disease. I hope, in your case, it does make a difference.

Dick S
If it is to be, it is up to me.
Junior Member
Registered: Apr 2003
Location: florida
Posts: 17
recovery hope
I want to encourage you. My daughter was diagnosed with GBS at 15 and after a relapse was rediagnosed with CIDP. This began Nov. 2002. Initially she was wheelchair bound and had to learn to walk again with a walker and cane. She missed 6 months of high school. After the six months her response to IVIG was so dramatic that she has regained use of her body and is doing almost everything she did prior to her illness. She was a competitive golfer and she came back after not walking for 6 months and was named Golfer of the Year for two straight high school seasons. She is also active in musical theatre and is currently entering her senior year in high school. Her IVIG treatments have been stretched out to one every 4 months and she is in remission now with her strength being normal. To see her you would never know that she has this problem because she doesn’t limp or have any trouble walking. She is required to use a motorized golf cart when she competes so she doesn’t become over fatigued. Her positive attitude and faith have brought her much peace in this trial. We have to live one day at a time and we are not sure if this will ever completely go away. Her doctor seems to feel that she will burn out soon and be done with treatments – or be able to take one a quarter or every 6 monoths to keep her going. Hopefully, your youth and healthy lifestyle prior to illness will be to your advantage. We will pray for you and your recovery.

Junior Member
Registered: Apr 2005
Location: Australia
Posts: 2
What you’re going through sounded a lot like the symptoms I had. For the first attack it took about 6 months (during which things started to get better on their own before I got a slight cold and then it all came back with a vengence) before I found a neurologist who was willing to try things (predisone) which worked wonders.

Within about 2 weeks I was feeling pretty much 100% (by the time I started the prednisone things were slowly getting better again).
I was then symptom free (although I also have another nerve problem called CMT which confuses the doctors a bit)
for the next 4 years.

Then it came back again, but this time predisone didn’t work so well (but I think it slowed it down a bit while doctors talked about what to do)
They then started my on IVIG, about 3 months after it started (I was convinced it was CIDP from the first attack but because of the CMT doctors need some convincing, even now they won’t give a definitive diagnosis).

Within about 2 weeks of that I was feeling pretty good again, its now been about 4 months since I had the IVIG and my feet below the ankle is still very numb (CMT can cause this but its worse now then it was before the last hit of the CIDP), and the tips of my fingers are still a little numb (which they never used to be before the CIDP).

I hope it never comes back, but if it does (hopefully many years from now), hopefully it won’t take months to convince the doctors again

I hope the IVIG works as well for you as it did for me.