A friend who cares : Barby Ingle
“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.”
— Henri J.M. Nouwen
Thank you! ~ Mandy Winner 1/1/2014
Power of Pain Foundation
Print Interview of Barby Ingle by Sylvie Ghysels, AFMASA Board Member & Belgian Delagate
Interview with Mrs. Barby Ingle,
Author &, Executive Director of the Power of Pain Foundation,
CRPS/RSD Patient, RSD/CRPS advocate for CRPS sufferers
- Barby, how did you develop CRPS? How and when were you diagnosed?
I developed RSD September 26, 2002 after a minor auto accident. I was diagnosed with a brachial plexus nerve injury because of the accident, which spread to full body RSD with organ involvement. It was not until May 2005, that I was properly diagnosed with RSD. Between September 2002 and May 2005, I underwent multiple surgeries including a first rib resection. Each surgery caused the RSD to spread and symptoms to be exacerbated. I was diagnosed officially after a pain management doctor examined me, looked through my records and then performed a nerve block in the right ganglion nerve bundle of my neck. The nerve block helped for a few hours and I began radio frequency ablations after that.
- Barby, you are the Executive Director of the Power of Pain Foundation. What are its missions? What are your responsibilities? What kind of works are you doing within the frame of this foundation?
The Power of Pain Foundation (POPF) is a registered not-for-profit organization founded on January 1, 2007. The POPF’s mission is to educate and show support for Chronic Pain Patients, specifically those with Neuropathy Pain conditions including Reflex Sympathetic Dystrophy (RSD), Diabetic Neuropathy and Post Cancer Pain. We fulfill our mission by promoting public and professional awareness of Neuropathy chronic pain conditions, educating those afflicted with the syndrome, their families, friends and healthcare providers on the disabling pain it causes, action-oriented public awareness, education, and pain policy improvement through activities and efforts to eliminate the under treatment of chronic pain and a commitment to emotional and educational support for chronic pain sufferers who have Neuropathy pain conditions such as RSD.
The POPF’s objectives are reached by important education, support and enhancement projects. The Power of Pain Foundation demonstrates its commitment to the chronic pain community by promoting new knowledge in the cause and treatment of chronic pain conditions. The ultimate goal is to increase chronic pain patients’ ability to perform their regular activities in the community and to bolster society’s ability to provide full opportunities and appropriate supports for its pain citizens. Through supporting education for pain patients, family members, caretakers and medical professionals, we make an important contribution to the overall knowledge and treatment of chronic pain.
My responsibilities as Executive Director are running the day-to-day activities for the foundation. This includes carrying out the organizations goals & mission. I also attend board meetings to report on the progress of the organization and answer questions of the board members. I coordinate the executive staff as they put together awareness and educational events for patients, caregivers and healthcare professionals. This is a volunteer position, as are all of the executive staff members. We do this to ensure that funding raised goes as far as possible to helping those who need it most. Each year for the past 5 years, I have been involved with awareness projects, educational projects, motivational speaking, fundraising, supporting legislation, and mentoring.
3. You also are an author. How many books have you written about CRPS and pain? What were your main motivations?
I have published two RSD books and a journal; RSD in Me!, ReMission Possible, and The Pain Code. My motivation for writing these books is so others do not have to go through the challenges of mistreatment and under treatment of pain that I endured. My books are for all of those suffering from chronic pain as well as their family, caregivers, and healthcare professionals. Until you feel the pain and are faced with the symptoms of RSD, it is difficult to understand all of the challenges it brings on. My books help fill in the gaps for non-patients and give tips and tricks for patients to help with their everyday living. My hope is that my speaking engagements and books will inspire an eventual transformation for patients filled with HOPE and motivation.
4. Let me come back on your book “Remission Possible”. You describe your experience with a Ketamine treatment. Could you explain to us the treatment and how it changed your everyday life afterwards? How long have you been in remission?
I underwent the inpatient Ketamine Infusion process for my initial treatment in December 2009. Prior to the treatment, I underwent physical and psychological testing and got off of all of my narcotic medications. I was treated in the ICU unit of a hospital for 7 days. The first and last day the doctor titrated me up/down to max dose. I spent 5 days at max inpatient dose. After being released from the hospital, I began a booster infusion protocol that is done in an outpatient setting. All boosters in the protocol I use are done for at least two consecutive days. The first four infusions were done at 2 weeks, 2 weeks, 4 weeks, and 12 weeks. Since then, I am on an as needed basis. Meaning, if I come out of remission due to a trauma I schedule a 2-day consecutive booster to be done immediately. The longest I have gone without a trauma causing me to exhibit symptoms of RSD is 3 months.
There is a process of healing socially, emotionally and physically after the initial remission is achieved. Life does not just go back to the way it was before your illness as I thought it would. I had to recognize this and adjust to the new life that I now face. It is a completely new phase of life, being somewhere between me before RSD and me at my worst RSD life-period. I have improved in my physical health, social activities; and mental stamina since going into remission. I learned that only the patient can begin the process of healing and that healing starts from within and it can only be yours if you choose to accept it. I am now able to do light housework, take walks, drive my car and attend more awareness events. For me the process was worth the effort.
5. Could you explain us more specifically how Ketamine acts on CRPS? What specific CRPS symptoms does Ketamine put into remission?
RSD is a progressive disease with key components being damage to small nerve fibers and activation of Glia. Increasing data in the recent years link CRPS with disturbances of the immune system. Test that can be used are PET scan, small nerve biopsy, laser thermogram and soon specialized blood testing.
Researchers have demonstrated the importance of the NMDA receptor and glial activation in its induction and maintenance. Ketamine is the most potent clinically available safe NMDA antagonist. It has been used in the treatment of pain, as anaesthesia, and treatment for depression over the past 40 years.
Glia has a receptor for opioids that the Ketamine can also bind. Where opioids activate glia, causing increases in pain, Ketamine can deactivate the glia activation. When this occurs, you see a reduction in sympathetic nervous system symptoms. Some of these symptoms include reduced pain levels, reduced skin discoloration, reduced sweating, reduced swelling, and reduced spasms. In addition, not being in pain can help with the short-term memory issues, proprioception increases, and sleep patterns become more stable. I get relief from these symptoms listed to the point of pain days of zero. Barometric pressure changes still affect me. When storms are moving in and out, my pain goes up to a 3-4 level. Prior to Ketamine, I was at an almost constant 9-10 pain level. Other symptoms I have noticed that are better are blood pressure, migraines/headaches, no more nausea/vomiting, balance, Dystonia, and hearing sensitivities. When I come out of remission, these symptoms return within 15 minutes to 24 hours.
6. In Europe, it is very difficult for a CRPS patient to have access to the low dose Ketamine treatment. Is it the same in the U.S? If yes, what do you think is the reason?
Unfortunately, it is difficult for patients in the US to get Ketamine, although it is getting better as healthcare professionals are educated on it. There are multiple reasons that access to infusion therapy is denied. Infusion therapy is being performed for patients with all kinds of neuropathy conditions and it helps many recipients. It is just hard to find a doctor who will perform infusions for anything more than IV-chemotherapy for cancer patients. What I have run into all year is resistance from doctors. Some are doctors who I know very well, which sadden me. I started asking questions to doctors specifically. Some of these doctors have seen me over the past few years. They cannot believe their eyes when they see me now. Yet they still give reasons and obstacles for not wanting to offer these treatments.
Doctors tell me there is just no money in it. Insurance companies give the doctors who do perform IV-Ketamine a hassle. More so a few years ago, but even today, some still get problems. Doctors who looked into doing these a few years ago decided not to offer the procedure or to do it on a cash basis only. I had to file the paperwork instead of the hospital, but ran into no issues on the portion they paid the hospital and did not file any appeals.
The next issue that comes up is that many doctors have very small offices. Even at pain management and surgical facilities, the patient takes up a spot in the recovery room or infusion room for half a day. That becomes prohibitive for doctors to deal with because it cuts down the number of patients they can treat as well as amount of funding they can make. Doctors do have limited time for treating patients, and they have required continuing education hours that they also have to fit in. Some tend to stick to classes that reflect their area of interest. So they are not getting a wide variety of knowledge that, as patients, we tend to believe occurs. I learned the hard way doctors are not created equal. It may just come down to them knowing of the condition, but it is not their specialty, so they do not invest in it.
Another challenge is when a patient is having the IV-Ketamine infusions, a certified nurse needs to be present the entire time. It is different from when nurses can come in and out of patient rooms; this nurse has to monitor you the entire time. Taking one staff member away for one or a few patients at a time for four hours a day increases a doctor’s overhead expenses. Most doctors could not survive on this type of set up. They need to see more patients; therefore they need more assistant staff members. Not only are you taking vital staff away from other patients, you are using space.
Finally, some doctors have tried to argue that there are no studies showing the effectiveness of IV-Ketamine treatments. There are many studies that have been done all over the world. There were also over 300 articles I found while researching for my book. The healthcare professionals just haven’t received the education in the newest information.
I have to say, over the last three years, I have seen more coverage of Reflex Sympathetic Dystrophy and Ketamine as a treatment option in particular. I truly believe that we are moving in the right direction. As information spreads and medical knowledge is brought to light at medical conferences, we will see a great improvement.
7. You also gave a couple of interviews on TV…and met with Paula Abdul, a famous singer. May we kindly ask you what kind of experiences these things have brought to you?
I was at an event in December 2010 and had a man introduce me to other attendees as a media darling for patient advocacy. I have done TV interviews on the local news, radio shows, quoted in newspaper articles, have presented for five other organizations, worked with state politicians to get better pain care policy, and met hundreds of people with RSD and treating doctors from around the world. I know that I am reaching many people with my pain care messages for all types of conditions, not just Reflex Sympathetic Dystrophy. I talk to everyone who will listen, no matter where I am; you could have probably guessed that easily.
When I met the Jonas Brothers, I gave them awareness bracelets. I said to Kevin, the oldest brother, “I know you will never wear them”. His response was, “You never know. We may wear them. Keep watching!” It turned out that they were in town to do a live remote interview. One of the first things they did was give a shout out to those who have pain. Wow, I was very excited. I know they did that because of me. How awesome.
Meeting my heroin, Ms. Paula Abdul was a great experience. I presented her with my books, 10 awareness bracelets to pass out, and a letter, in case I did not have time to share everything I wanted with her. A week later, she talked about her RSD challenges in a magazine article for the first time in a few years. I hope that my sprit, energy and inspiration lead others in a high profile position to start to speak out regularly on RSD and the challenges we all face on a daily basis. I know that I am making a difference in the RSD community, but the power of celebrity is amazing and I will keep working until everyone knows of RSD just as they do cancer, fibromyalgia or Lyme disease.
8. Is there something you would like to add? Any words for AFMASA, the French CRPS association?
It is important to be the “Chief of Staff of Your Own Medical Team”. Meaning be in control, do your own research, and know what the facts are. The more you know and understand the better off your healthcare will be. Do not let others influence the choices you make without doing your own do diligence and being comfortable with the possible outcomes of your choice. What you chose today can have effects on your tomorrow, so be prepared for what that may be and use your wisdom to guide your medical team. Please check out the powerofpain.org website for more information. Thank you for allowing me to share my story with you.
In name of AFMASA, I would like to thank you for this interview.
Sylvie Ghysels,
AFMASA Board Member & Belgian Delagate
Propofol – How Could It Have Killed Michael Jackson?” By Katherine Harmon
Propofol – How Could It Have Killed Michael Jackson?” By Katherine Harmon, December 14, 2013 at 10:42am
I was reading the article “What Is Propofol–and How Could It Have Killed Michael Jackson?” By Katherine Harmon as I search for info for some friends who are being offered this as an option to self inject at home to treat their RSD symptoms….
According to the 2009 autopsy report, “the cause of death is acute Propofol intoxication,” which caused MJ to stop breathing. To support the weighty pronouncement of homicide, the medical examiner concluded that: “The Propofol was administered in a non-hospital setting without any appropriate medical indication. The standard of care for administering Propofol was not met.”
There are doctors in the US prescribing patients Propofol to self administer at home… to treat pain conditions such as RSD. The prosecutors are following this line of evidence, arguing that Murray should be held responsible for Jackson’s death because he lacked adequate justification, expertise and equipment for giving this powerful drug to his client (who was reportedly aiming to stay rested in preparation for a comeback tour). Although Murray was using a device to keep tabs on Jackson’s vitals, as is recommended while using a general anesthetic, the fingertip pulse and blood-oxygen monitor he used is “specifically labeled against continuous monitoring,” said an executive from Nonin Medical, Inc., which makes the $275 device, CNN reported.
Given Jackson’s apparently substantial admixture of meds and oft-discussed medical conditions, why was Propofol the most likely candidate for his death—and can it be used more safely? To find out, Scientific American spoke with Beverly Philip, a professor of anesthesia at Harvard Medical School. [An edited transcript of the interview follows.] How does it differ from more commonly used sedatives? It’s not a sleeping aid at all. What it is is a general anesthetic.
This puts people into general anesthesia—a sleeping aid doesn’t do that. This is not meant to be used at home. This is meant to be used by anesthesiologists in a clinical setting. How does Propofol work in the body? Are there negative side effects that Propofol can have—even when it is used as directed and in a proper setting?
Yes. Unlike other sedatives, this drug has an extraordinarily narrow safety margin. It changes the body’s state very rapidly so that the patient will go unconscious and stop breathing. It can affect the breathing even before unconsciousness. So even in trained hands, it is very difficult to titrate just where you want. We can do it, but that’s what we’re trained and educated to do—it’s not easy. If I’m inducing anesthesia, it will act inside of 60 seconds. Recreational use leads to a lot of people dying from this medication. It’s very difficult to administer safely even in the most controlled settings.
The FDA [U.S. Food and Drug Administration] is in the process of making this a restricted drug. Drugs in the Valium class and painkillers have a reversing agent that’s commercially available. There’s no reversing agent for Propofol. People taking any anesthetic (Propofol, ketamine… etc) need to be weary about self administering these… they patient needs to be monitored constantly by a trained professional.
POPF is a 501(C)(3) Charity with a Gold Level of Transparency with GuideStar
POPF is a 501(C)(3) Charity with a Gold Level of Transparency with GuideStar
August 26, 2013 at 12:04pm
Here is a list of 30 charities that I know of being involved in PAIN or RSD/CRPS related issues along with their GuideStar Transparency Rating. GuideStar gathers data from nonprofits including financial statements, board and staff data, etc. GuideStar has the most comprehensive, up-to-date information available on more than 1.8 million nonprofits—and the tools and services to deliver exactly the data you need, in the way you need it. Donors can rely on GuideStar Charity Check to verify nonprofits’ charitable status and identify supporting organizations. Charity Check is 100% compliant with the Pension Protection Act of 2006. The U.S. nonprofit sector is large and amazingly diverse. It can be complex—nonprofit is not necessarily the same as tax-exempt, not all tax-exempt organizations are charities, and tax-exempt organizations have special rules they must follow in order to retain their status. 501(C)(3) charity = Tax exempt or as taxpayers say… tax deductible donations are available through these charities. Gold Level is the highest rating a 501(C)(3) can obtain. Here is what I found As of 8/26/13.
Are a 501(C)(3) Charity and Gold Level of Transparency with GuideStar
Power Of Pain Foundation
Are a 501(C)(3) Charity and Silver Level of Transparency with GuideStar
American Pain Foundation – Out Of Business Since 2011
Barrow Neurological Foundation
Community Partners – (ForGrace Org is using the EIN of Community Partners)
Endometriosis Association, Inc.
Trigeminal Neuralgia Association Inc
Are a 501(C)(3) Charity and Bronze Level of Transparency with GuideStar
Pain Connection – Chronic Pain Outreach Center, Inc.
Rocky Mountain Rsd Crps
Rx Laughter
Are a 501(C)(3) Charity and No rating on Level of Transparency with GuideStar
American Academy Of Head Facial And Neck Pain & Tmj Orthopedics
American Academy Of Pain Medicine
American Chronic Pain Association Inc
American Pain Society
American Rsdhope Group
American Society Of Interventional Pain Physicians Inc
American Society Of Pain Management Nurses
Brooks Family Foundation For Rsd Crps
Chronic Pain Anonymous Service Board
Coalition Against Pediatric Pain
International Association For The Study Of Pain
International Research Foundation For Rsd-Crps Inc
National Pain Foundation
Pain Free Kids
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
RDS Aid & Awareness Inc
Society Of Chest Pain Centers Inc
Texas Pain Society
The American Academy Of Pain Management
TMJ And Orofacial Pain Society Of America (Tops America)
Western Pain Society
Women With Pain Coalition
World Institute Of Pain Foundation Inc
US Pain Foundation
5 fun facts about Barby *\O/*
August 17, 2013 at 12:25pm
My favorite thing to eat?
Candy and Carbs. Yes, I am a carboholic!
My favorite thing to do?
Anything media related
What do I do in my spare time?
hum… sleep, rest, sleep, watch ken play assassins creed, and watch movies and documentaries.
My biggest pet Peeve?
Being called Barb or Barbara, neither of which are my name. I think people think Barby is like a young nickname, so they call me Barbara, which is not my name, or they get tired of saying two syllables, and shorten me to barb. I have many friends who are barb and Barbara, nothing wrong with those names, it’s just not my name. 🙂
What do I love most about myself?
Being 5 ft tall, having a brown spot in my blue eyes, having a tiny foot (size 3 in kids or 4/5 in adult), and I am not afraid to fail, which helps me achieve so much in life.
My perspective on Paula
May 19, 2013 at 5:43pm
I know this won’t change some people’s minds, but I am not doing it for them, I am doing it for the people who can get help, motivation, inspiration, and HOPE from this interview. Paula Abdul has a cover story coming out in Pain Pathways SUMMER 2013 edition. It is the first time she speaks unedited about her RSD story. We need to support fellow RSD’ers.
This brings up some issues from her past interviews. One in particular that I wanted to addesss – Paula Abdul was on Dr. OZ talking about RSD: Here is the video of the show http://www.youtube.com/watch?v=ArhuDv-2ZwQ that aired.
It is interesting that 14:32 minutes of the 19:37 interview was on RSD specifically. That is 74% of the interview on RSD info and 11% on Fembody. That is really good for a show that uses advertising and product placement to push stories out. Is this the best interview… NO, but it sure is filled with some really great info when you break it down.
Segment 1 – Intro (3 minutes and 45 seconds on the intro)
.21 secs, There is no known cure (Paula in video package)
.28 secs, You can undo damage (Paula in video package)
1.20, Dr. OZ says RSD is rarely talked about in the public
3:45: Paula takes the stage and talks about RSD (10 mins and 8 seconds)
4:27, I want to do the right thing, I thought I was being brave not telling people I was dealing with a debilitating nerve disease, you see it was not the right thing to do, I should of spoke out. Being really brave would have been being able to discuss it.
5:11: She describes her pain, constant, burning, fire, and needles are some of the words she uses. She describes the dystonia with her fingers locking….
5:48: Dr. OZ states RSD is NOT rare
7:20: The questions that I have, Why am I not getting better, I am having surgery after surgery, but the nerve pain never went away. (Obvious edit!)
9:14: I started getting on the internet and I no longer was alone.
9:27: It doesn’t matter what pillow I have, I learned that ice was my friend. (Obvious edit!) (The editor/producer doesn’t leave in when she did this, or that she does NOT use ice now… she says it “WAS my friend” and it made HER feel better…) Personal note: My physically therapy people had me use it too. I used it for 3 years before I knew it was bad. (This section, as was a lot of the interview, was edited by producers… so it took out of context what she was saying… but she also said, for ME… and only spoke of her personal experience, not everyone’s with RSD)
9:58: I am way smarter than that it is not that simple… it is a 360 process (meaning she took a multi-disciplinary approach to her treatment including changing her diet and taking supplements, and doing things to reduce her inflammation)
10:58: Sugar is my weakness, I am a candy girl, but I try to do everything in moderation
11:59: Stress is a big part of RSD
13:02: For me to feel the best I have ever felt, for real and not masking it, my life is a perpetual rainbow compared to where it was even 6 years ago and a decade before that. I look at life as, I just begun, I am the healthiest I have ever been, and I am here to say that, you can undo damage, by really taking care of your body
14:33 – Segment 3 Age Defying Secrets (2 minutes and 20 seconds on her supplements)
15:47: It keeps me filled up but also keeps inflammation down, which allows me to work and be more focused. (on her fruit smoothie)
16:22: Straight up supplements (named by Dr OZ) / Fembody, Dr. OZ does say, Paula is a paid spokesperson for this product.
18:06: Skin Advise, she says her skin has remarkably changed because of the beauty activator.
18:44: I am going to fight the age thing as best as I can
19:00: How she will do a private lunch with a lucky viewer.
Be your own best advocate now to be a stronger healthier person in the future!
When you have a flare or emergency situation, you have to be willing to stand up for yourself.
Case in point 1. I went to a local hospital because I was having severe pain from two kidney stones trying to pass at the same time. I got to the hospital and they brought me back to a er room really quickly. The doctor came in and ordered a urine test and an iv of fluids and pain meds. I told him that I was unable to have the IV in my arm, that I have a porta-cath for a reason and that he was not going to stick me anywhere but with an access line to my port. He said no, the hospital is too dirty and I said OK and started to slide down off of the bed to leave. He asked me, “what are you doing”? My response was if your hospital is too dirty to stick my port then it is too dirty to put an iv line in my arm and I am going to go to a different hospital. He tried to tell me a stick in my arm is the same as a stick in my port. It is not! There are less small nerve fibers in my chest and chances of hurting me or bringing me out of remission are less. The chances of me getting an infection are about the same either way, but yes, if I was to get an infection in the port vs my arm it is more dangerous. But the chances are about the same either way. When he saw I was willing to leave, he decided to help me. He also had an issue with what meds to give me. As I do IV-Infusion Therapy with a Ketamine cocktail I don’t take opioids. They bind to the same receptor and would stop the K from working. Therefore, the doctor had to be creative. and it made him have to stop and pause for a minute. He ended up giving me Toradol (a NSAID) and Versed. It worked.
Then this past October, Case in point 2 happened. I had severe gallbladder pain. Went to the same hospital. The doctor ordered an IV line and morphine… I again went through this “our hospital is dirty” bit with him… (a different doctor) and the nurse. He got so mad his face turned red, he said he would be right back and asked the nurse to come with him. As they were leaving, I said, I am just gonna go to a different hospital then. I guess they didnt believe me. So, when they came back I was dressed in my clothes and ready to leave waiting for my ride. The doctor got all freaked out and said, “I didn’t refuse to treat you”. I told him I know, that I refuse what he is offering. He asked if he does what I want if I would stay. I said yes. I stayed long enough to get my port accessed, get an ultrasound and get some Toradol in me. When it came to needing surgery to have my gallbladder out, I decided to leave and wait until I had a team of doctors who were trained to help me with my RSD issues in mind and I am glad I did.
Once a doctor sees you stand up for yourself they are more likely to stand with you. If you dont know better, then rely on their expertise, but when you do, as you live a specific condition… do what is right for you. I knew the hospital was not to dirty to access me, that they were just being lazy and didn’t realize how much of an educated patient was sitting before them. I didn’t let them push me into backing down and I am better off for it in the long run. Yes, if I had to leave it would of sucked… but it would of been totally worth it to get the care I knew I needed and not just accept whatever limited knowledge care they were wanting to offer.
This past month I went with a family member to the same hospital. He got the same nurse as me. When the nurse saw me, I believe he was more attentive and helpful with my family member because he knew I would not take anything less and that we would not be afraid to call him on anything we knew better on. It is ok to say NO to a treatment option provided if you are not on board with it to give yourself time to get better care elsewhere, or ask more questions, etc. Please take the time to be your own best advocate now so that you will be here in the future a stronger healthier person.
Going through some acute issues right now. Saw surgeon on Thurs. they have an anesthesiologist that will do the Ketamine Protocol, but he wanted me to do one more test before we do the surgery, as he said “with RSD less trauma is more”, which I like, he seems to be very nice and understand RSD pretty well. He also didn’t trust the hospital doctor from last weekend. So was going to get the test done yesterday morning, and it turns out it is a nuclear test and they company that does it is not OK with putting the nuclear substance through my port, and I am not OK with an IV (I have a port for a reason), so we decided to cancel the test. Going to decide w/ surgeon on Monday what to do next. Then I saw the Urologist yesterday. He did some testing and said that the infection is gone yeah!!! but I don’t have one kidney stone, I have two, both 5mm. They are both attached to different ducts in my kidney and as long as they are connected to the meat (as the doctor put it) and don’t get any bigger we are not going to do anything to them. However if they drop into the tube then he will remove them, or if they grow in the duct any bigger he will also have to remove them. Right now they are not totally blocking the duct from working, only partially blocking so he can leave them for now and wants me to come back in 4 months, unless they drop before then, obviously. Tried to eat last night (I am hungry), had rice, green peppers, white bread and small amount of chicken… boy was that a mistake, I am not sure what did it, but my gallbladder was not liking me! not gonna try that again. I just want this to all be done and be better and be able to eat what I want again. So that’s the current update!
As far as my RSD it is still doing well since my last infusions in late Sept. 2012
Blessings to all, Barby
Surgery Guidelines for RSD patients
October 24, 2012 at 1:07pm
Surgery Guidelines for RSD patient
Dr. Philip Getson Recomendations (There are other top docs in the RSD field that have similar guidelines, I just happen to like Dr. Getson and trust him 100%)
The anesthesia technique will vary with the surgery
These are general guidelines and the patient’s doctor should make their own decisions
Here is what I will be doing:
Pre – operative: Minocycline 1 day before and continue for 2 weeks after (I am on an antibiotic now for the bladder infection)
Intra-operative: MUST use iv Ketamine as part of anesthesia
Post – operative: Continue low dose IV Ketamine in the recovery room for a few hours – and continue Minocycline for the two weeks after
The difference between anesthesia and tranquilizers
August 6, 2012 at 11:25pm
Anesthesia vs Tranquilizers
Many people confuse Anesthesia and Tranquilizers so I thought I would research the topic and I learned a few things. My information is from an anesthesiologist, veterinary assistant and wikipedia.
Anesthesia
Anesthesia is a state of mindlessness (apathy, loss of sensation, medically induced insensitivity to pain)
Anesthesia is much more complex than just “putting out cold”
There are 3 fundamental components of a general anesthetic
sleep,
relief of pain
muscle relaxation
It is the skill of the Anesthesiologist to match the amount of each component to the particular needs of each patient and each operation
The mechanism of action of the anesthetics is one of those ongoing questions, but the most popular theory is that they cause a degree of swelling of the brain cell wall, which obstructs the normal passage of electrolytes in and out of the cell, thereby preventing nerve impulses from being generated
An example of a commonly used Anesthesia for humans is Ketamine, Tiletamine, and Propofol
Ketamine has also been found to bind to opioid receptors type 2– however, without agonist activity
Ketamine interacts with muscarinic receptors, descending monoaminergic pain pathways and voltage-gated calcium channels
Ketamine induces a state referred to as “dissociative anesthesia”
Ketamine is primarily used for the induction and maintenance of general anesthesia, usually in combination with a sedative.
It has been shown to be effective in treating depression in patients with bipolar disorder who have not responded to anti-depressants
In persons with major depressive disorder, it produces a rapid antidepressant effect, acting within two hours as opposed to the several weeks taken by typical antidepressants to work
It is also a popular anesthetic in veterinary medicine
Tranquilizer/sedatives
Tranquility is a state of serenity (calm, stillness, silence)
Tranquilizers/sedatives are drugs that may be used in achieving either state, by varying the dose
The sedatives can be used for the sleepy bit, but there are several other drugs, including the inhaled anesthetics, which do the same job
The sedatives, though being said to make patients relax, do not do the job of a proper muscle relaxant, nor do they do anything to relieve pain
Typically drugs are often called sedative/hypnotics due to their ability to cause sedation and induce sleep
The primary tranquilizer/sedative in use are benzodiazepines like Valium (Diazepam), Xanax (Alprazolam), Ativan (Lorazepam), Rivotril/Klonopin (Clonazepam), Restoril (Temazepam), Versed/Hypnovel (Midazolam). These drugs are often given for anxiety and/or insomnia