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Thursday, 26 September 2013

from Sherri's Blog A New Research Study: “A genetic analysis of patie...

Canadian Living: We're good.. but not that good.: A New Research Study: “A genetic analysis of patie...:



This link is from Sherri's Blog about the Research that Dr Murphy is doing in Canada,

March of 2013 marked the three-year anniversary of my introduction to the world of Rare Disease. It was March...

US Pain Foundation October Meeting



us pain logoSeptember 25, 2013

usa today ad
U.S. PAIN FOUNDATION 
Together. Making a Difference.  

This October, U.S. Pain is hosting two events at the Allied Arts Guild in Menlo Park, California with the sole purpose of creating a clearer understanding of chronic pain and a broader platform for the medical conditions many of us face. 

Attendees are going to see the courage and strength that pain warriors exhibit daily are well beyond imagination. In addition, we are extremely confident that those with pain will find comfort, community and empowerment whether you attend one or both events.

U.S. Pain exists to help individuals find resources and inspiration while also advocating for patient rights and access to proper care. It is with this vision in mind that we bring the "INvisible Project Launch Party" and "Take Control of Your Pain Day" to the Allied Arts Guild. Funds raised from the Launch Party will support the programs and mission of U.S. Pain.  

We appreciate your support and encourage you to join us to spread awareness, information, hope and inspiration. We also ask you to please forward this email to friends and associates you feel would be interested in joining us.



2013 INvisible logo
INvisible Project 
2013 Launch Party  
   October 24 / Menlo Park, CA / 6-9pm

The INvisible Project is the national campaign illustrating the struggles of those living with chronic pain and medical conditions.

On the evening of October 24th, U.S. Pain Foundation is bringing this gallery to the Allied Arts Guild. The event will honor and recognize our current 2013 participants. It will hopefully also spread our message and educate the public about the challenges those with pain regularly face.

Come show your support. Spend the evening viewing the powerful INvisible Project displays while speaking with current participants about their life journeys, listening to inspiring talks and learning more about the severe conditions impacting 100 million Americans. 

See why this project has made others living with pain realize they are not alone and helped shift perceptions regarding pain disorders and those afflicted by them.

Passed hor d-ourves and beverages, including ONEHOPE wine and Strike beer, will be provided. Dress attire encouraged.

As this is a fundraising event for U.S. Pain, cost to attend is $75 per individual or $125 per couple.

  

pain awareness braclets
TAKE CONTROL OF YOUR PAIN
Become Educated. Become Empowered.
   October 25 / Menlo Park, CA / 9:30am - 4pm

Take Control Of Your Pain is a patient-education seminar: one full day for pain warriors and caregivers to learn tools that will empower them to take control of their personal pain and medical journey.

The day will include engaging speakers and the ability to meet organizations and groups dedicated to making a difference for the pain community. We will also showcase the 2013 INvisible Project.

The goal is to provide hope and information. It is a time to connect with others who live nearby, make new friends, share personal stories and RECOGNIZE the need to become proactive and empowered.

Come join U.S. Pain for an inspiring day of feeling understood while also becoming better educated regarding treatment options, advocacy work and support. 

Dress attire is comfortable clothing, and beverages and drinks are provided.

Register to attend today.   -- Only $5!

Contact Information:
Nicole Hemmenway
nicole@invisibleproject.org

Paul Gileno
uspainfoundation@gmail.com
 
To connect, inform, educate and empower those living with pain while advocating on behalf of the entire pain community--
STAY CONNECTED

Facebook   Twitter   LinkedIn    
These events have been made possible by a nonrestricted grant from Teva Pharmaceuticals. 

 

U.S. Pain Foundation would like thank them for their support and concern for the pain community. 
 

The pudendal nerve anatomy



The pudendal nerve anatomy
The anatomy described in this figure is the result of the confrontation between the litterature and dissections done by members of the Groupement Européen de Périnéologie 
Videos of dissections are presented on www.Perineology.TV
The pudendal nerve anatomy
Legend:

1. Sacro-spinal ligament

2. Sacro-tuberous ligament

3. Alcock's canal with the pudendal nerve

4. Nerve of the clitoris (not in the Alcock's canal)

5. Perineal branch of the pudendal nerve

6. Inferior rectal nerve

7. Arcus tendineus fascia pelvis

8. Obturator muscle

9. Piriformis muscle

S2, S3 and S4: sacral roots forming the pudendal nerve
The rectal nerve is separated from the pudendal nerve between the ligaments in 50 % of the cases and is going through the sacro-spinal ligament in 15 % of the cases (Mahakkanukrauh et coll.).
When it is separated form the pudendal nerve, the rectal nerve passed through the posterior fibers of the sacro-spinal ligament at a mean distance of 19 mm from the ischial spine. The pudendal nerve passed posterior to the sacro-spinal ligament at a mean distance of 6 mm in 80 % of the cases and under the ischial spine in the remaining 20 % (Grigorescu, IUGA meeting Athens 2006). 
The levator ani nerve originates from S3 and S4. It runs on the levator plate from 3 to 20 mm medial to the ischial spine (Wallner et coll.). It is partly responsible of the innervation of the levator plate. The integrity of this muscle is necessary to avoid perineal descent and its sides effects


http://www.perineology.com/files/weiss-athens2006.pdf




TREATMENT OPTIONS FOR PERSISTENT PAIN FOLLOWING PUDENDAL NERVE DECOMPRESSION SURGERY
Jerome M. Weiss, M.D.
Pacific Center for Pelvic Pain and Dysfunction San Francisco, California 

In general, patients expect some pain following decompression surgery. However, six months later when they continue to have severe flares that may eclipse their preoperative symptoms, they suffer desperation and depression. When nerve blocks provide no significant long term relief, we must look “outside the sensitive nerve” or “outside the box” for treatment answers. After evaluating and treating more than thirty post operative patients and approximately 200 that did not require surgery, some of these answers to the treatment questions have emerged.
Many of these post operative pain generators were actually preexisting myofascial dysfunctions that predisposed the nerve to injury and then remained a dominant problem following surgery. Others developed because of the effect that the sensitized nerve and/or surgical trauma had on the surrounding connective tissue, muscles, and ligaments. It is only after these extra neural causes are identified and treated that significant pain relief can be achieved. 



More from the link above,  sacro-iliac joint dysfunction Love Sharon xx soft hugs xx


In conclusion, successful treatment of persistent post decompression pain requires comprehensive multidisciplinary therapy. The level of pain a patient experiences is the sum total of nerve injury, regional myofascial trigger points, connective tissue restrictions and adverse neural tension, deficient pain modulators and stress. To further complicate the picture, all of these aforementioned factors can perpetuate symptoms by initiating a vicious pain cycle. Some pain flares during the recovery phase can be attributed to the failure to address all of the issues that comprise the whole. An analogy is that of cutting one fiber in a spider’s web which will not release its prey any more than treating one pain component will release the patient from the web of pain. Freedom from pain can only occur when all of the links are severed, since treatment of every component is essential in decreasing the underlying central sensitization. 

What Is Dysautonomia? What Causes Dysautonomia?

What Is Dysautonomia? What Causes Dysautonomia?

What Is Dysautonomia? What Causes Dysautonomia?

Main Category: Neurology / Neuroscience
Also Included In: Pediatrics / Children's Health
Article Date: 14 Jul 2007 - 1:00 PDT



Dysautonomia is a medical term utilized for a group of complex conditions that are caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. A malfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment. 

Orthostatic intolerance (the inability to remain upright) is a hallmark of the various forms of dysautonomia. Dysautonomia conditions can range from mild to debilitating and, on rare occasions, can be life threatening. Each dysautonomia case is unique and treatment must be individualized and may include pharmacological and non-pharmacological methods. Patients should be evaluated by a physician who is well-versed in the recent treatment modalities. 

Childhood dysautonomia conditions typically (but not always) strike adolescents, often after a period of very rapid growth. There is a female to male ratio of 5 to 1. Some patients report a sudden development of symptoms after a viral illness, immunization, or trauma. Others may see a more gradual onset. Although very rare, there are children born with life threatening non-familial forms of dysautonomia. There is also a distinctive form of dysautonomia called Familial Dysautonomia (FD) that has been identified in individuals of Ashkenazi Jewish extraction. 

The symptoms of dysautonomia conditions are usually "invisible" to the untrained eye. The afflicted child may visually appear to be as healthy as those around him. The manifestations are occurring internally, and although the symptoms are verified medically they are often not visible on the outside. Symptoms can be unpredictable, may come and go, appear in any combination, and may vary in severity. Often patients will become more symptomatic after a stressor or a physical activity. Patients may find themselves involuntarily limiting their life-style activities in order to compensate for the conditions. 

Dysautonomia conditions are widely unknown to society at large. As a result, most people do not realize the impact such conditions have on those afflicted and their families. Children who have dysautonomia struggle with some of the most basic functions that healthy people take for granted, beginning with getting out of bed in the morning. Each day and each moment brings new and unexpected obstacles. Yet, despite the betrayal of an uncooperative body, these young individuals face life with profound courage and incredible strength. 

Symptoms of dysautonomia may include: 

-- tachycardia (extremely fast heart rate)
-- bradycardia (slow heart rate), palpitations
-- chest pain
-- dangerously low blood pressure
-- wide swings/sudden drops in blood pressure
-- orthostatic intolerance (the inability to remain upright)
-- excessive fatigue, exercise intolerance
-- dizziness, fainting/near fainting
-- gastrointestinal problems
-- nausea, insomnia
-- shortness of breath
-- anxiety, tremulousness
-- frequent urination
-- convulsions
-- cognitive impairment
-- visual blurring or tunneling
-- migraines

Most of our DYNA members are diagnosed with conditions such as: Postural Orthostatic Tachycardia Syndrome (POTS), Neurally Mediated Hypotension (NMH), Neurocardiogenic Syncope (NCS), Vasovagal Syncope, Generalized Dysautonomia, Birth Dysautonomia, Non-Familial Dysautonomia, and Post-Viral Dysautonomia. 

Please CLICK below to learn more about Dysautonomia

-- Understanding Dysautonomia 

-- Symptoms/Impact 

-- Forms of Dysautonomia/Treatment/Prognosis 

-- I Have a Friend With Dysautonomia! 

-- Why Have I Never Heard of Dysautonomia? 

-- What Do I Tell People Who Ask Me What I Have?

-- Dating and Dysautonomia 

-- Communicating With Your Physician 

-- Finding The Right Doctor For You 

Saturday, 21 September 2013

What to expect the day of your Tarlov cyst surgery



What to Expect

Dr. Feigenbaum performs surgeryWhat to expect the day of your cyst surgery

When you arrive to the surgery check-in at the hospital you will be asked to change into a gown and the nurse will start an IV in your arm or hand. You will be covered with warm blankets. When it is closer to your surgery time you will meet your anesthesia provider and operating room nurse. You will also see Dr. Feigenbaum and he will mark your surgery site with a marker on your skin. You may receive medications in your IV to help with anxiety. When it is time for surgery you will be wheeled to the operating room suite and given more warm blankets.
When you awake from your surgery you will be in the recovery room and attended to by the recovery room nurse. You will have a catheter in your bladder and a monitoring clip on your finger to check the oxygen level in your blood. You may be given extra oxygen to breathe as well. You will most likely have a drain tube from your incision site. Your nurse will be giving you medications for your comfort and to prevent nausea. When it is time you will be transported to your room.
After you are settled in your room and have met your nurse you will be rejoined with your family. You will be on bed rest and must lie flat but you can roll from side to side. You will be given fluids through your IV and may start drinking clear liquids. Your diet will be advanced as you tolerate through the day. You will not have a pain pump but will be given pain medications through your IV. If you wish a family member can stay with you overnight.

What to expect the first day after your cyst surgery

At approximately nine in the morning your nurse will raise the head of your bed slightly. The drain tube if present will most likely be removed. At noon the head of your bed will be raised even more. At approximately three in the afternoon you will be allowed to sit more elevated in bed and then get out of bed. This is the time your catheter will be removed also. If you can make and pass your urine within six hours after the catheter is removed it will stay out. If you have trouble passing your urine the catheter will be replaced and you will get another chance the next day. Most patients do not have any trouble passing their urine. You may feel tired and weak so take it slow and easy today.

What to expect the second day after your cyst surgery

You will most likely start feeling better and have more chances to take some short walks. You may start taking more of your pain medication by mouth. You may also notice you have numbness in the buttocks area or your private areas and this is not unusual after the surgery. It is usually temporary. You may also notice your pain is different than it was before your surgery.

What to expect the third day after your cyst surgery

This is the day most patients are discharged from the hospital. You will be given instructions. Some patients go home on the second day. You can expect your energy may be starting to come back. You may feel like walking more. You may notice your pain is different and many of your symptoms are better. If your bowels are slow you may be given a laxative or instructed to use a fleets enema. Expect to take over the counter medications to keep your bowels moving regularly for a period of time.

Wednesday, 18 September 2013

Tarlov cyst Research Foundation


Hi Everyone,
Having had the opportunity to meet with Dr Murphy here in Dublin, last weekend,
He was here lecturing at a Medical Conference in the Royal College of Surgeons, Right now he is in the middle of research the genetics of this rare disease Tarlov Cysts and related autoimmune diseases , At present he is working in Canada, beofre this he was in John Hopkins Baltimore working along side Dr Long, Neurosurgeon who is now retired but spent the last decade and more treating Tarlov cyst Patients, this research has been funded by the Foundation and through N.O.R.D* they chose the best candidate for the research,
* National Organisation Rare Diseases, NORD

I realise the need for research for Tarlov cyst disease, our Rare Disease, we need it to continue for the foreseeable future, and of course whats needed is money for this research, unlike other Diseases, Cancer, MS, and others we only have this One Foundation its in the USA, buts its the Only Foundation Worldwide, Its a non profit run Organisation and its Founding members suffer with Tarlov cysts also,
Patients can join Worldwide subscribe Yearly or donate any amount that is affordable,
we know in times of Recession money is scarce, but this is not only for us but our future generations,  Maybe a Birthday or a Christmas donation or have Friends and Family make a donation instead of a Present, I did that last year and my Friends and Family were only too happy as it saved them racking their Brains to think of something to buy me, so Its a win win situation all round,
Love Sharon xx soft hugs xx
ps below is a page from the Foundation, to join or to send a donation





Please consider joining the Foundation as a member and/or making a donation in support of our efforts to provide advocacy for Tarlov cyst patients all over the world, to promote and fund research, and to improve education about this difficult neurological medical condition.
We need and appreciate your donations in order to continue accomplishing the Foundation’s goals.
(Scroll down for Membership & Donation Form)
If you choose to donate by check and mail your membership fee/donation, please click on the print link @ the top of the form below,to print a mailable version of the form, which includes a mailing address to the Foundation treasurer.
Please mail to:
Cathy Carlomagno
140 Garden Ln.
Decatur, GA 30030

We invite you to join with us in the work of the Tarlov Cyst Disease Foundation. We welcome your knowledge, special abilities and assistance in helping us further the objectives of the Foundation.
One important way to help is to participate in our surveys. If you  had surgery or other procedures to treat Tarlov cysts, you have important information to share with us. If you are newly diagnosed and have not yet had any treatment, your information regarding your symptoms,location of your cyst(s), your geographic location, your age at onset and significant events at onset of your symptoms are all very important.We will collect this cumulative information and  put it into a scientific database. The analysis from these surveys, along with those conducted with physicians, will bring researchers one step closer to finding the cause, improved treatment and a cure for Tarlov cyst disease.
Another way to join us is by becoming a member of the Foundation or by making a donation. Becoming a member of the foundation is a choice and not a requirement, just as is the choice to make a donation to the foundation. The Foundation's website is free for all to view and become better informed about Tarlov cyst disease as well as to learn about the Foundation's efforts on behalf of all those with Tarlov cysts. Membership participation is one way of partnering with the Foundation, and membership fees will be used to fund and promote research and education. We will welcome your assistance in making a difference for the future for all those diagnosed with symptomatic Tarlov cysts.
"Philanthropy ... is a natural act of giving, prompted by a spirit of caring and concern."

Current Membership Benefits
Committee involvement opportunities to support the Foundation and become actively involved
E-Notes – E-mailed news updates with “behind the scenes” news and activities, such as reports on physician's collaboration activities, research dialogue, the board's contacts with research institutes, conferences, board meetings, grant proposals and applications, member news, etc. This information will not be available on the Foundation's website.
Member/Board liaison positions, whereby members will provide ideas and suggestions for the Foundation's  Board of Directors
Future Membership Benefits
Foundation Membership Meetings (regional or state) and Tarlov Cyst Disease Foundation National Conferences with education programs for members and their families and a social gathering sponsored by the Tarlov Cyst Disease Foundation
If you wish to join with us to further the Foundation's vision of a future in which Tarlov Cyst Disease is well understood, accurately diagnosed and easily treated, please complete the Membership and Donation Form. We welcome YOU and your involvement!
**********
Note: If you should have difficulty with submitting the form, and this message pops up (Please enter the passcode exactly as you see it), please click on Tools at the top of your browser. Then click on Internet Options; an Internet Options window will pop up.
Click on the Privacy Tab. You will see a “Scroll Bar”; move it down to Medium High.
Once this is accomplished,you will be able to submit the form.


Tarlov Cyst Disease Foundation
Membership and Donation Form

"If you prefer to mail a donation and/or membership fee by check, rather than donate online, please print this form "
YES! I wish to join the Tarlov Cyst Disease Foundation and benefit from timely information in the Foundation’s E-Note Update and other communications.

 Charter Members ONLY (renewal only IF joined in 2007) $25
 Regular annual membership (joining after 2007) $35


YES! I would like to further assist the Tarlov Cyst Disease Foundation as a donor or as a supporter at a higher level.

Donor: Any amount less than $100
Sponsor: $100-$499
Patron: $500-$999
Benefactor: $1000-up
Your Amount:
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Opioid Tolerance or Hyperalgesia? Key Symptoms Offer Clues Nancy A. Melville


Opioid Tolerance or Hyperalgesia? Key Symptoms Offer Clues

Nancy A. Melville
Sep 16, 2013
LAS VEGAS — Patients with chronic pain being treated with opioids can commonly be expected to develop tolerances to the drug with longer-term treatment, but the emergence of certain, uniquely sensitive pain characteristics can be red flags for a potential differential diagnosis of hyperalgesia, said pain specialist Sanford M. Silverman, MD.
Concerns about hyperalgesia as opioid overuse in general faces intense public and regulatory scrutiny were evident from the overflowing crowd spilling out into a hallway at the meeting to hear Dr. Silverman address the issue here at PAINWeek 2013.
"Hyperalgesia is not easy to diagnose," said Dr. Silverman, who is medical director of Comprehensive Pain Medicine in Pompano Beach, Florida.
"When a chronic pain patient isn't getting better, a clinician asks: is the patient developing a tolerance and needs more opioid or does he have opioid-induced hyperalgesia?"
Key Symptoms
Key symptoms offer important clues, Dr. Silverman said. Patients with opioid-induced hyperalgesia will develop an increased sensitization to pain that may be unlike their original pain.
"The first thing to understand is this is a diffuse, spreading kind of pain," he said. "Patients develop an acute insensitivity to pain even though they may be stable and functioning on their opiates."
The distinction from the development of a tolerance should be clear. "This is not just a lack of efficacy of the pain medicine — that's tolerance, and everybody develops a tolerance to almost every exogenous thing. It's a defense mechanism your body engages in and is not hyperalgesia."
A classic case of hyperalgesia will be a patient who initially presented with postlaminectomy syndrome with back and leg pain and has been receiving opioid therapy for years.
"Now you start noticing something different — the patient's pain diagram is spreading, and now he also has headaches, neck pain, arm pain."
"That's opioid-induced hyperalgesia," Dr. Silverman said. "Not only is the back and leg pain worse, but now the fire has spread and kind of gone out of control."
A stabilizing of symptoms when opioids are increased should be a tip-off that the patient has in fact developed a tolerance to the drugs, and the response should help to disprove a diagnosis of hyperalgesia.
Conversely, with hyperalgesia, there may also be an initial response, but the relief is typically fleeting.
"If an increase in opiates results in only temporary relief or a worsening of symptoms, that's opioid-induced hyperalgesia," Dr. Silverman said. "They will get better for a while, but then they only get worse. Their normal pain will not only increase, but it will spread and become multimodal."
Importantly, clinicians should rule out other factors, including the progression of a disease, such as cancer, or a new injury causing new pain.
Additionally, hyperalgesia should not be mistaken for allodynia. Whereas hyperalgesia is characterized as a painful response to painful stimuli, allodynia involves oversensitized, increased pain in response to even nonpainful stimuli, such as just brushing against the skin.
"Zoster (shingles) is a good example of allodynia," Dr. Silverman explained.
Opioid-Induced Hyperalgesia Treatment
When clinicians have ruled out an opioid tolerance and suspect opioid-induced hyperalgesia, an initial strategy should be to reduce the opioid dose. One important approach is to use rational polypharmacy, "using a medicine to treat with one mechanism and another medicine to treat another mechanism," Dr. Silverman recommended.
Opioid-sparing adjunct treatments can be important, as can interventional techniques. "Sometimes just a simple thing like an injection into a muscle or a nerve block can help as well," Dr. Silverman said.
Opioid rotation or medically supervised withdrawal can be a useful strategy; however, caution should be used when switching a patient to methadone.
"There are reports of people becoming hyperalgesic on methadone as well," Dr. Silverman cautioned.
"In addition, you need to be very careful in converting patients due to incomplete cross-tolerance. The dose conversion isn't linear — the conversion ratio is very tricky and my advice would be to go low and slow because this is how patients can get into trouble and even die. Use this with caution."
[T]he conversion ratio is very tricky and my advice would be to go low and slow…Dr. Sanford M. Silverman
Dr. Silverman said he has also had some success with buprenorphine but warned that, while it has been shown to enhance the ability to treat opioid-induced hyperalgesia, some patients experience withdrawal when switching to the drug.
Importantly, clinicians should make sure to keep opioid-induced hyperalgesia on their radar when prescribing the drugs — particularly for patients receiving high doses.
"Be aware of opioid-induced hyperalgesia," Dr. Silverman recommended. "It's not going to be the first thing on your mind, but keep it in the back of the mind."
In addition, "Have an exit strategy when you use opioids in general because you could develop these problems and you will need to back out."
Pain Quality
Commenting on the issue of opioid-induced hyperalgesia in general, pharmacologist James B. Ray, PharmD, CPE, expressed skepticism on whether the condition is as prevalent as some clinicians believe.
"I have seen clinicians call a problem opioid-induced hyperalgesia when the characteristics of spreading pain and changes in the characteristics of the pain quality like the development of allodynia becomes present," said Dr. Ray, who is the clinical pharmacy coordinator for pain and palliative care at the University of Virginia Health Center in Charlottesville.
"[Furthermore], any significant increase in dosage without substantial improvement in pain seems to get labeled as opioid-induced hyperalgesia," he told Medscape Medical News.
"Some surgeons are using this as justification for tapering patients off of opioids prior to surgery, so that 'the opioids will work, otherwise your postoperative pain will not be able to be controlled'," he said.
Actions wind up being taken despite confusion about the issue, he warned.
"There is a tremendous amount that we still don't understand about opioid-induced hyperalgesia and I think it may not be as prevalent as we believe; I have seen cases but certainly not on a daily basis."
Dr. Silverman has disclosed no relevant financial relationships. Dr. Ray is a consultant and on the speaker's bureau for Millennium Laboratories and a consultant to Cadence Pharmaceuticals.
PAINWeek 2013. Presented September 6, 2013.