Tuesday, November 29, 2011

RSD and Cancer

Studies have shown that there is an increased cancer rate in people with RSD.  I personally can atest to this.  In the spring of 2007, I started bleeding vaginally very heavily (post menopause).  I had not yet found a gyn here in Orlando.  I called every gyn and none were taking new Medicare patients.  My PCP got me into see someone.  An endometrial biopsy was done and it showed abnormal cells.  There was a sign in this doctor's office stating that he didn't carry Malpractice Insurance; which should have set of red lights and sent me running, but my PCP recommended him.  A hysterectomy was recommended.  This doctor took my uterus and ovaries but left my cervix (he never did a pap).  When the pathology for my uterus came back, it showed stage 1 cancer.  At this appointment, he tells me that since he did the surgery laproscopically he had to cut up the uterus and since the endometrial biopsy only showed "abnormal cells", he didn't do a wash.  A wash is done to be sure that any cancer cells are washed out of your body.  He then suggested that I go to an oncologist for follow up.  I was devistated.

I went to the oncologist who wanted the pathology repeated before he decided what to do next.  He also did a pap.  The second pathology report also showed cancer but the pap also showed "abnormal cells".  The oncologist said that he needed to do a second hysterectomy to remove my cervix, lymph nodes and to biopsy my organs up to my aorta to be sure that cells didn't spread from the inital surgery.  By now it is October 2007 and I have the second surgery.  I felt like I was cut from stem to stern due to the lymph node removal and biopsies.

Surgery can cause spread of RSD and here I was having a second abdominal surgery in six months.  Fortunately with both surgeries I was given Ketamine as part of the anethesia and had very good post op pain management.  I was fortunate that there was no further spread of my RSD.

It is now four years later and I just had my annual exam.  I have one more annual exam in 2012, and if all is still clear, I will be discharged from the oncologist's care.

For those of us with RSD, we need to be sure to have mamograms, paps, prostate screenings, etc. to be sure that this increased risk of cancer that comes with RSD doesn't affect you.

Monday, November 28, 2011


Today is the tenth anniversary of the passing of my father.  He died of ALS.  When I took him to John's Hopkins for a diagnosis, they told me that there was no relationship between me having RSD and him having ALS.  Now there are some that think that there could be a correlation between diseases like RSD, ALS, MS, etc.

An old friend of my father's was a neurologist at U of P.  He was of the school that RSD didn't exist and was all in the patient's head.  He convinced my father that this was true.  For whatever reason, it was easier for him to believe that RSD was a psychosomatic illness rather than a physical illness.  As a parent, I know that it is difficult to see your child in pain; but I could never quite understand how it was easier to think that I was making up an illness than that I had one.  He died ten years ago today thinking that it was all in my head.  Perhaps the fact that I went to Germany for Ketamine Coma treatment before he died and for the short time between my trip to Germany and his death, was pain free validated that opinion.

We had so many more years other than the five years where he doubted the validity of my RSD that I have to remember him on.  I try not to dwell on the hurt that I feel knowing that he didn't believe that the pain was real.

My dad was born in Germany (a jew) in 1927 and emmigrated to the US at age 11.  Many of his thoughts and values were very European.  He was a hard working man.  My dad built his own business, Altman Weil, that still prospers today in spite of the fact that he and Mrs Altman passed away years ago. 

He was a good provider, a wonderful husband and a good dad.  My dad has a twin brother, John, who is still living.  I look at my Uncle and wonder what my dad would be like if he were still alive as well.  They came into the world together, but fortunately for my Uncle, Aunt, Cousins and me, they didn't not leave this world together.  My Uncle will be 84 next month!

At 73 yrs old, Robert I Weil left this world far too soon and is greatly missed by many.  I will not let one little blip in our relationship (his inability to understand RSD) affect my memory of a wonderful man!

This is one of my favorite photos of him.  He played the flute and loved to go deep sea fishing.  He volunteered helping Jewish Russian Immigrants prepare resumes and get jobs, he was active in his church and most of all a wonderful dad.

R.I.P. Robert I. Weil
You are greatly missed by all who knew you!

Saturday, November 19, 2011


November 19, 2011
Well, I haven't written anything in a few days as I've been doing a training class to be a Guardian ad Litem.  It has been very difficult not being able to work.  I miss nursing so very much.  I tried volunteering in a local NICU, but they weren't very accomodating about the amouth of area that I would need to cover or the number of hours per session.  If I could cover 8 units and be on my feet for 4 hours; I could work part time.  This program for the most part, allows you to make your own schedule and involves visitng "your child" once every thirty days either unannounced or in a planned visit.  I will be assigned a medically complicated child since it will best utalize my skills.

This week was very difficult as I had a 40 minute drive each way to the training, 7 hours of training, five days in a row.  I started off the week with a cold but I did manage to get through the training.  I literally fell asleep shortly after getting home, letting Nemo out and paying some attention to her.  Unfortunately that meant that I woke up in the middle of the night but there was no way that I could keep my eyes open!!

October 14th, I saw my RSD doctor.  He prescribed medication for my ever increasing pain.  I took the prescription to the pharmacy and found out that they needed to order it.  A week later they got it in and ran it through the insurance (why they couldn't have run it through the insurance while we were waiting for the order is beyond me).  The insurance company wanted preauthorization.  The pharmacist said that she would fax the sheet to my physician.  I called the doctor's office to tell them t be on the look out for the preauthorization form from my pharmacy (giving them both the pharmacy name and the pharmacist's name).  Another week went by and I hadn't heard anything from the insurance company.  I called them.  There was no record of a preauthorization.  I called the doctor's office.  They said that they never received a fax.  I asked why they didn't call me when I had called them to tell them that they would receive the fax.  They had no answer.  I went to the pharmacy (not knowing if the doctor's office had lost the fax or what).  The pharmacist (not the same one who faxed as she is now on maternity leave) pulled the file and saw that it was faxed but the fax confirmation said "fax busy" and no one ever refaxed it.  I took the form and faxed it to the doctor's office.  I called to be sure that they received it.  Ten days later, still no word from the insurance company so I called them.  Once again they told me that there was no request for preauthorization.  Ok, I know that the fax was received by the doctor's office since I faxed it and called to confirm.  I called the doctor's office only to find out that "it's on my pile to fax".  I was fuming.  By this time it had been over a month since the prescription was written and I had a follow up appointment in 5 days to discuss how I was responding to the medication.  I changed that appointment as the doctor is 2 hrs away and there is no reason to go and see him if I haven't had the medication at all yet.  The doctor's office assured me that they would fax it Friday.  Well Monday, I plan on calling the insurance company to see if they have received it.  If not, I will cancel the appointment with the doctor and find someone else.

In the mean time, I contacted Dr. S to set up inpatient Ketamine.  I heard back from him within 24 hrs, his Clinical Nurse Specialist contacted me within 24 hours of his email and 24 hours after that I had a date set to go up.  There is absolutely no comparesome in the treatment.  I emailed the doctor on Monday and by Wednesday I had a date set.  What a difference!!  Unfortunately, he doesn't do precribing for day to day medications.

I will be spending this weekend recouperating from my week of training as my feet are both swollen, red and miserable.  My entire body is burning and I have no energy.  Fortunately my hubby is in town until the Sunday after Thansgiving when he has to leave after lunch.

I hope that everyone has a great weekend!!

Thursday, November 10, 2011


Last Tuesday I took a tumble and started a flare.  Since then, I have had a headache.  I've taken my allergy medication and migraine meds daily which lessens the intensity of the headache but doesn't get rid of it.  This isn't the first time that I've had a headache that lasts more than a week, but it is so frustrating.  Things like reading, using my eyes, sunshine, etc. all make the headache worse.  So many of us with RSD get headaches due to muscle spasms, migraines, TMJ, etc.  I have digenerative disk disease in my cervical spine, which I'm sure contributes to the headaches.  I've had 2 cervical epidurals, which did help with the headaches before last Tuesday when I aggrivated everything with my injury.

The insurance company, doctor's offices and pharmacy are all giving me a headache as well.  In early October I went to my pain management doctor and he suggested trying something different for pain, Nucynta.  Several of my friends are on it so I decided to give it a try when my doctor suggested it.  I took the prescription to the pharmacy.  They didn't carry it so I had to have them order it.  When you sign on with a pain management doctor, you have to sign a contract that says that you will use only one pharmacy and only one pain management doctor.  A week later I got the call that the medication was in the pharmacy.  We my husband was on his way to pick it up,  I got a call from the pharmacist that the medication wasn't approved by the insurance company.  Now they couldn't have check this before they ordered it so that we could have been working on the authorization while waiting for the medication to be ordered?  Of course that would be too easy!! 

So the pharmacist said that she would fax the denial to the doctor's office.  I called the doctor's office to aler them to be on the look out for the form.  Two weeks later, I still haven't gotten a letter from the insurance company about their ruling; so I gave then a call. It seems that the preauthorization was never sent to them.  I got on the phone to speak to the doctor's office and they said that they never got any paperwork from the pharmacy.  I told them that I had called them to tell them to expect the form..and they couldn't call me to tell me that they didn't recieve it so that I could follow up?  So I went to the pharmacy to talk to the manager.  She pulled out the fax verification form in an attempt to show me that it wasn't their fault (no of cours it's no one's fault, right?).  When she pulled the form it said "fax busy" and they never resent it or followed up in any way.  So now I've waiting three weeks for this pain medication without anything for pain.  I went on the insurance company's web site and printed the preauthorization form and faxed it to the doctor myself.  I called to be sure that they recieved the form.  Now we wait, again to see what the insurance company says.  It is so frustrating to have to go through all of this when you have a diagnosis that says that you have one of the most painful diseases that there is and you are fighting for pain medication.  It never ceases to amaze me the ways that they try to torture us over our healthcare!!

For CRPS/RSD Awareness Month, here is today's post:

For my friends who are nurses, this is progress!

Kentucky Bill Would Require Nurses to Complete 2 Hours of CRPS Education
State/ Branch: Kentucky. House
Title: HB 234
Summary: Relates to training about complex regional pain syndrome; requires all nurses who are licensed and practicing on the effective date of this Act to receive two hours of training concerning the recognition and treatment of complex regional pain syndrome, also known as reflex sympathetic dystrophy by December 31, 2014; requires all nurses licensed after the effective date of this Act to complete training concerning complex regional pain syndrome within their first three years of practice.
Latest Action:
02/01/2011 Introduced.
02/02/2011 To Committee on Health & Welfare
Sponsor: Embry
We are asking all Kentuckians to contact Tom Burch at Tom.Burch@lrc.ky.gov or 1-800-372-7181 and request him to choose this bill to go before it goes before the committee
For more information, please contact Carolyn Clemons
South Central KY RSD Support Group, 270.879.4023

Your RSDSA membership is important. There is power in numbers, and we would like to see our membership, currently over 7,000, grow to encompass all those who are afflicted with CRPS. When we speak to the legislature, the pharmaceutical companies, and the medical associations. Our voice is strong and our message is clear.

Anything you can do will be greatly appreciated by the CRPS community. We look forward to working with you. You can contact us online at info@rsds.org

Wednesday, November 9, 2011

Ketamine Doctors Needed

Floridians With CRPS/RSD Wanting Ketamine Treatment

November 9, 2011

Dear Doctors;

            I contacted you earlier this month with information about Lidocaine and Ketamine Infusions used to treat CRPS/RSD. To show you that there is an interest in this treatment locally, I have gotten the signatures of people with CRPS/RSD in Florida who are interested in getting Ketamine treatments locally.  Many of is are traveling across the  country for these treatments.  We hope that you have read the research that I’ve sent you and will consider offering these treatments locally.

  1. Nancy Renee Cotterman; Orlando FL 32829

Tuesday, November 8, 2011

Ketamine in the U.S.

I have been fortunate enough to be able to go to Germany to receive Ketamine treatments that are not available to the general public here in the US.  I have learned of a veteran who received coma Ketamine here in the US last September.  He is the only person that I know who has received this treatent here in the States.  I describe my coma Ketamine experience in my first post.

I have also had awake Ketamine treatment at Hahnemann Hospital on several occassions; the most recent was in 2009.  Today, I will describe this 7 day hospitalization.  At Hahnemann, Ketamine is given in the ICU, on a cardiac monitor.  For me, it was given via my mediport.  Additionally, a PICC (peripherally inserted central catheter) so that they could do lab work without additional sticks.  The Ketamine was adminstered via my port and the lab work was drawn from the PICC.  The reason that they didn't use the port for both is that they didn't want to have to stop the Ketamine drip in order to get an accurate blood Ketamine level as this would interrupt my Ketamine therapy.

Prior to my Ketamine, I under went some testing; neurological, psychological testing and lab work.  The treatment was scheduled in advance as there is a waiting list for the treatment.  Once admitted and having the PICC like placed, the Ketamine was started.  The dosage was increased hourly until it reached a maximum of 40 mg/hr.  In the ICU, visitation was limited, no phone access and I was encouraged to just relax and sleep through as much of the treatment as possible.

For many, 40 mg/hour of Ketamine makes them feel "tipsy" and sleepy.  Along with the Ketmaine, I was given Clonopin and Versed to minimize the chances of hallucinations.  They also help you to relax and let the treatment work.

The theory behind Ketamine is that it is a MDA Inhibitor and acts to "reboot" the nervous system much like hitting ATL, CNT, DLT reboots your computer.  It took a full day for the admission process and to get to the full 40 mg/hr dosage.  I spent my time listening to music and watching TV.  I brought bottled water, juice drinks and snacks with me as hospital food isn't my favorite thing.  Ketamine also decreases your appetite and  wanted to be sure that my nutrition was good to protect myself from any germs that the staff may be carrying.  RSD suppresses your immune system and I wanted to boost it as best that I could with vitamin C rich foods/juices, being sure that I was well hydrated and eating small healthy snacks.  You are able to write in requests on the menu which makes a wider variety of foods availble to you.

For me, the week in the ICU with the Ketamine was a chance to have down time, to allow the treatment to work without the stress of traveling to and from the clinic like you do with the outpatient treatment. 

So how did it FEEL while on the Ketamine...I did not experience any hallucinations or negative effects.  I felt relaxed by the versed and spent 6 days of Ketamine at 40 mgs/hr.  Being in an ICU is some what noisy and sleeping can be difficult especially with frequent vital signs and lights on on the unit; however I was able to cat nap during the day as well as at night with the assistance of sedating medications.  I know that many people sleep the entire week while on the Ketamine.  Most likely because I had had much higher dosages during my two stays in Germany as well as many booster treatments; I did not feel drunk, tipsy or even sleepy.  I would say that I felt relaxed and that I did get relief from the treatment.

Ketamine seems to be a controversial treatment as far as some are concerned but so are so many other treatments for chronic pain.  Treament for RSD is as different for everyone as their individual sypmtoms and as different as we all are as individuals.  For me (having had almost every treatment available over the past 15 years) Ketamine has proven to be the best treatment for ME.  It has lessened the "burning" pain that I have felt all over my body.  Now I only experience full body burning during flare ups as opposed to prior to Ketamine when I had that burning full body pain full time.

At this point I am having a flare that is a pretty bad one.  There is still a waiting period for the treatment.  At this point I have to put myself on this list for a future treatment as I know that for ME this is my best treatment option.  I also know that I need regular "tune ups" of Ketamine to keep this at bay (the burning pain).

Monday, November 7, 2011

November 7th, 2011 Vacation with my hubby

My husband and I spent three days away together for a long weekend.  Every aspect of our little get away was affected by my RSD.  Two days before we left, I ran my good foot into an open glass door .  For a normal person, this would have hurt for a few hours.  For me, it has caused a flare in my RSD that has affected me for the past 6 days.

I have had an off and on again headache since last Tueday.  My right foot has been swollen and painful since and my full body burning.  It impacted our vacation because I really couldn't enjoy myself.  Like many of us with RSD, I didn't want to spoil this get away with my husband, so I did my best to carry on. 

I continue to fight my health insurance company over medications to help with my pain.  I went on vacation with my husband without pain medicatons since the insurance company has decided to fight me on the medications that my doctor has prescribed.  This is also an issue for so many of us.  The doctor sets a plan of treatment and then the insurance company shuts it down.  Never mind that in many instances the treatment is actually cost effective because it decreases hospitalizations.  The insurance companies don't want to set a president by approving a treatment.  They hope that we won't fight for our treatments.  We battle pain, misinformation and so many other things, why should we have to fight for our treatments as well?

Right now, I am trying to decide if I should set up another Ketamine treatment.  I haven't had one in two years. I have tried to find a local doctor to administer it so that I don't have to travel to PA for the treatments, but there is no one locally who will accept insurance.  Many people with RSD have to pay for their treatments out of pocket.  Many of us are on SSD or WC and paying out of pocket for these treatments is impossible or at best a strain on our families' finances.

It is 4:15 am and I haven't been able to fall asleep yet.  Due to pain and sleep disorders, many people with RSD don't get the restorative sleep that we need.  Today's information for RSD awareness month is about sleep:

RSD And Sleep Disorders

Are Sleep Disorders Common In People Who Have RSD?
--By R. Norman Harden, MD, Director, Center for Pain Studies, Addison Chair
Rehabilitation Institute of Chicago, Chicago, Illinois

Yes, I would say that at least 75% of people with RSD/CRPS, possibly as many as 90%,
have some sort of sleep disorder. Pain is, of course, the main culprit for those who have
difficulty falling asleep and for those who have difficulty staying asleep. At bedtime, the
mind starts to relax, and since there are no distractions the mind naturally focuses on pain.
Early morning awakening may occur if a person rolls onto the affected limb and is
awakened by pain.

Treating the sleep disorder is critical, not only because people who sleep well feel better,
have more energy, and are in a better mood, but sleep is critical to the body's
recuperation, repair and healing, especially with chronic disease. Repair and some parts of
the recuperation process occur only during sleep; for instance, 90% of Somatamedin C, a
hormone that is critical in maintaining nerve and muscle health, is produced in deepest
stages of sleep. If you don't make Somatamedin C, you are not going to repair tissues
from normal wear and tear, which in turn causes more pain. It is a vicious circle. People
in chronic pain don't get into these deep stages of sleep so essential to healing, and
Somatomedin C is only one example of critical neuroendocrine products produced during

We treat sleep disorders very aggressively. and try to use agents that hit "2 or 3 birds with
one stone." For example, some of the antidepressant drugs (such as nortriptaline or
doxepine) are actually great analgesics. The brain stem (where you produce several
critical neurochemicals such as serotonin and norepinephrine. coordinates pain, sleep, and
mood. These "antidepresseant agents" modulate serotonin and norepinephrine, critically
important for quality and quantity of sleep, normal mood and pain modulation. Since you
only have to take these agents once a day you can use them as anti-insomnia agents as
well as analgesics to help initiate sleep, prolong it, improve the quality of sleep, and relieve
the pain.
--The Stages Of Sleep--
There are five stages of sleep that cycle over and over again during a single night: stages
1, 2, 3, 4 and REM (rapid eye movement).Stages 1 through 4 are also known as non-rapid
eye movement sleep (NREM). Approximately 50% of our sleeping time is spent in stage 2
and 20% in REM. A complete sleep cycle, from the beginning of stage 1 to the end of
REM, usually takes about 90 minutes. An adult normally sleeps more than 2 hours a night
in REM.
Stage 1: a light sleep during which the muscles begin to relax and a person can be easily
Stage 2: brain activity slows down and eye movement stops.
Stages 3 and 4: deep sleep, during which all eye and muscle movement ceases. It can be
difficult to wake a person during deep sleep. Stage 3 is characterized by very slow brain
waves (delta waves), interspersed with small, quick waves. In stage 4, the brain waves
are all delta waves.
REM: It is during REM sleep that people dream. The muscles of the body stiffen, the eyes
move, the heart rate increases, breathing becomes more rapid and irregular, and the blood
pressure rises.

More Information On Sleep Disorders Available At: