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Re: Dr. Potter's protocol: can you help !

Posted: Tue Oct 30, 2012 5:00 pm
by alexm
Hi Kayrn,

Thanks for the info. When you say "property of HSS" do you meanthat the Hss will no longer share the protocol with other radiologists? After having read several posts, I was under the impression that this was the case? If not, I am completely wasting my time over here trying to set up a 3T using Dr Potter's protolcol...

Re: Dr. Potter's protocol: can you help !

Posted: Tue Oct 30, 2012 6:23 pm
by Karyn
Hi Alex,
I'm sorry, but I really don't know if HSS is sharing the protocol or not. I do know that Dr. Potter has spoken with other radiologist in the past. Do you have a doctor or radiologist who would be willing to make a call to HSS on your behalf? That way, you'd have a definitive answer. I would be surprised if they gave this information to a patient.
A couple of years ago, Dr. Potter was very responsive to patients. Since then, it's been my understanding (and personal experience) that's no longer the case. I really do think it would be more effective for you to have a medical professional call, rather than yourself.
Kind regards,
Karyn

Re: Dr. Potter's protocol: can you help !

Posted: Tue Oct 30, 2012 6:37 pm
by Karyn
Alex,
Apparently, Dr. Filler is coming to London again in January. The following is from his current NerveMed newsletter:
http://www.nervmed.com

In this issue
•London Clinic: January 21-23, 2013
•New Book from Dr. Filler: The Smart Guide to Patents
•The Latest from the Front Lines: Continuing Our Insurance Discussions

In BRIEF

Greetings from INM

All the team members of Institute for Nerve Medicine in Santa Monica, California, extend their sincere greetings to you this fall and hope we find you in good health.

In this edition of our newsletter, we discuss the upcoming London Clinic with Dr. Aaron Filler, to be held January 21-23, 2013, at our Harley Street offices. If you are interested in a private, one-on-one consultation with Dr. Filler in London, please click here at your earliest convenience to request an appointment. Space is extremely limited.

We also discuss Dr. Filler's newest book, The Smart Guide to Patents, now available at more than 25% off the suggested retail price direct from Amazon.com. If you are an inventor, or know someone who is - or are simply interested in the patent process - this book sets a new standard for easy-to-understand coverage of the complete US patent process.

Finally, we delve once again into the world of insurance industry policies and coverage restrictions, something of interest to every patient who relies on his or her insurance coverage to get specialized quality of care from all levels of medical providers.

As always, if we can answer any questions you may have, please do not hesitate to contact us at contact@nervemed.com. Or call us at 866-41-NERVES between 9AM-5PM Monday-Friday Pacific.

To visit our website, please click here.

To request an appointment with Dr. Filler at our Santa Monica offices, please click here.


From the Institute for Nerve Medicine

London Clinic: January 21-23, 2013


For all our European patients, we are pleased to announce the latest London clinic with Dr. Aaron G. Filler, MD PhD FRCS, medical director of the Institute for Nerve Medicine, at our Harley Street offices, this upcoming January 21-23, 2013.

If you are in the United Kingdom or continental Europe, this clinic may be of great interest to you. You will have a private consultation with Dr. Filler, and if deemed necessary, be scheduled for a nerve scan study at our London imaging center.

All interested patients should contact us by email at contact@nervemed.com at your earliest convenience. Space is extremely limited during these clinics, so don't delay - let us know your interest as soon as possible, and we will schedule you during our January presence in London.

New Book from Dr. Filler: The Smart Guide to Patents


Institute for Nerve Medicine medical director and MR Neurography co-inventor Dr. Aaron G. Filler, MD PhD FRCS is the author of a new book entitled The Smart Guide to Patents, published by Smart Guide Publications.

This important new book tackles the complex and confusing world of invention and the patent process, explaining every step of the process in simple, easy-to-understand language from the perspective of someone who has already successfully navigated the US patent process.

The book covers a wide variety of subjects, including complete coverage of the new 2011 America Invents Act.

For more information on the book, please visit the dedicated book website by clicking here.

For the book's complete table of contents, please click here.

To download a free excerpt of the book, please click here.

To order your own copy of the book from Amazon.com for more than 25% off the suggested retail price, please click here.


The Latest from the Front Lines: Continuing Our Insurance Discussions


Part of our ongoing series of discussions with patients regarding the Medical Insurance Industry and our efforts to help ensure as much reimbursement as possible for individuals

This October, the Institute for Nerve Medicine's medical director Dr. Aaron G. Filler, MD PhD FRCS attended the national meeting for the Congress of Neurological Surgeons in Chicago. This is an annual event in which board certified neurosurgeons meet to discuss healthcare standards in their field. Dr. Filler also is a member of the Peripheral Nerve task force committee, where he and his peers discussed the recent negative impact of insurance plans. The task force is committed to changing the insurance plans' recommendations from a focus of what makes the plan money to a focus of what is in the best interest of the patient.

Major plans such as Blue Cross and Aetna are appointing non-specialty, non-certified doctors, nurses and other industry-paid medical consultants to render medical policy determinations based on fiscal models and outdated medical research. The confusing assignments of “not medically necessary” or “experimental treatment” and even “beyond the usual and customary” cause patients to have to pay out of pocket for any medical service given these labels by their insurance plan. Naturally, many patients choose to refuse medical services that are beneficial to them, simply because their insurance plan will not cover the service. But the fact is that these services actually are medically necessary, they have peer and clinical support and they exceed the standards of care which are all good things for patients seeking quality medical services.

So why would an insurance plan state that a medical service is experimental and not medically necessary even though they can see that standard testing such as EMG has failed to resolve diagnostic complexities? Because the insurance plan is relying on flawed logic, applying criteria for drug therapy as a medical standard for clinical therapy, as a cost savings measure for denying benefits for members. Here is why the policy does not make sense — and some guidance on what you can do about it.


There are several objective medical publications and studies to support the use of MR Neurography. In fact, the major chief medical textbook requires the use of MR Neurography as part of meeting the standard of care for complex spine and peripheral nerve conditions. Large scale, double blinded randomized trials are appropriate for evaluating new medications for common conditions, but insurance companies instead often rely on a drug trial study as a reason for labeling MR Neurography as experimental. Simply put, this is inappropriate for decision making for a rare medical condition.

The purpose of a randomized trial is to simulate drug efficacy by applying two different treatments to the same individual in order to learn which treatment is more effective. This requires several conditions that are not applicable to patients who are seeking MR Neurography scans for unique pain conditions related to soft tissue injury, complex spine and peripheral nerves.

For this type of study to make sense, you would first have to experience a homogenous and readily identifiable condition to treat. For instance, consider the case of a particular type of diabetes. This serves as the mental model for many studies because we have a very well understood biochemical defect which allows for a large study group and very easily measured indices. When we have two drug treatments wherein both are thought to have good efficacy and wherein we wish to learn which is more efficacious, there is no ethical problem with randomizing patients to either drug trial. This is because we have no proof that either group is disadvantaged.

In the matter of MR Neurography, we have the fact that patients being evaluated for pain conditions related to spine and soft tissue injury are inherently non-homogenous and a disparate group. It would be virtually impossible to find patients with the exact same nerve, spine, and anatomical conditions for randomized trials and if you were even able to find a group, then the actual treatment therapies would have to be identical for each person. This is an impossibility. You cannot have doctors and surgeons doing injections and spine surgeries on a living human being when the doctor is somehow blinded to whether or not his procedures are actually being done as he does them.

Absent double blind studies, the insurance ban on advanced techniques such as MR Neurography and Open Guided MRI injections is essentially meritless. We are looking at a new technology when there is no existing gold standard for treatment planning. EMG, standard MRI, ultrasound and CT scans have lesser imaging quality and lesser successful outcomes. If there is an existing gold standard that can reliably and correctly diagnose these spine and soft tissue conditions, then why are there a large percentage of unresolved spine and nerve conditions?


Patients who have arbitrary plan limits are encouraged to appeal for benefit coverage of medical services. Especially if the patient has exhausted in network resources for treatment, then they should not be discouraged by the insurance plan’s mistake in policy. Instead, patient should appeal for authorization and coverage for medical services that are endorsed by the Congress of Neurological Surgeons and not by an insurance administrator or paid medical consultant. Ask yourself and then ask your insurance plan, if the in network plan recommendations are just as clinically effective as newer advances, then WHY are you still uncertain of treatment and experiencing unresolved pain symptoms?

All the team members of the Institute for Nerve Medicine are here to help you with your appeals process. For more information, please email us at contact@nervemed.com or call us at 866-41-NERVES between 9AM-5PM Monday-Friday Pacific.

Re: Dr. Potter's protocol: can you help !

Posted: Mon Apr 15, 2013 2:54 pm
by dougal
Just Wondering,
has anyone out there managed to get Dr Hollis Potter to send them the protocol for a MR Neurography scan?

I'm from the UK and, after 9 years of nerve pain in my leg which was never diagnosed, have finally been diagnosed by Dr Filler (through an examination and MR Neurography in the UK).
To validate the diagnosis, I would like to have another similar scan done and interpreted by someone else - to this end I contacted Dr Hollis Potter's office and they agreed to forward the protocol to an MRI Centre near my home in the UK. However they have now replied saying they are unable to supply the protocol.
Can anyone shed any light on how I might be able to get a scan done and interpreted in the UK to confirm Dr Filler’s diagnosis?

For further information.............
Dr filler says “the sciatic nerve itself demonstrates a sharp focus of increased image intensity as it exits the sciatic notch and passes below the piriformis tendon. Hyperintensity persists as the nerve reaches the level of the obturator internus tendon and partially resolves as it descends into the upper thigh.”
Dr Hollis Potter’s office replied with “there is not a specific protocol that we can provide to help image your sciatic (it is not the same as the protocol we use for pelvic nerve pain that you may have seen discussed on the web). However, Dr. Potter does feel that scanning this region is not particularly complicated and has faith that an MR institution in the UK will have their own protocol sufficient to scan for sciatic pain. “
Unfortunately I think they have overestimated the availability of diagnostics in the UK!

Thank you so much for your input.
Julie

Re: Dr. Potter's protocol: can you help !

Posted: Tue Apr 16, 2013 12:09 am
by helenlegs 11
Hi Julie,
Welcome to Hope :)
I had a pelvic scan (MRN) in London, Harley st again as it happens. The company was called MEDTEL then but it is UMI diagnostics now http://www.umediagnostics.com/index.php ... al-imaging. They do take insurance, unfortunately my BUPA had expired by then as it was work related. The scan was £750 almost 3 years ago. Mine was just a 1Tesla scan but I believe they were to get a 3 T one. That would need to be checked out however. The radiologist ther Dr Simon Blease had taken an interest in pelvic neuropathies, although I did hear from a few people who had come from Europe and they didn't get any diagnostic 'result' that helped them.
My MRN showed pudendal nerve signal intensity on the rh side which does correlate with my pudendal pain BUT it didn't mention anything about sciatic problems. I have recently had a sciatic nerve conduction test (local to me in Northumberland and NHS so free :) ) which has confirmed sciatic radiculopathy. The consultant actually mentioned pelvic (as my spinal MRI is clear) 'entrapment' although I have no figures from the test.
I have no idea why the sciatic nerve problem didn't show on the MRN but the smaller pudendal on did. I would say my symptoms are on a par for both nerves. Have you had a nerve conduction test at all?
So Dr Filler isn't saying piriformis syndrome as such (his favoured diagnosis from many accounts) more sciatic notch/piriformis tendon. Did he say what he thought your treatment should involve from that diagnosis? Have you had any physio or a sacroiliac evaluation at all?
Take care,
Helen

Re: Dr. Potter's protocol: can you help !

Posted: Thu Jun 27, 2013 8:42 am
by IRIS
Cher Alex,

Cela fait 10 ans que je souffre de névralgie pudendale. Avez-vous réussi à vous procurer le protocole du Dr Holly Potter pour faire l'IRM 3Telsa ?

Si c'est le cas. Pourriez-vous me le transmettre SVP.

Cette IRM 3 Telsa est mon dernier espoir !!!!!!!!!!

Merci de bien vouloir me répondre

Cordialement,
Iris

Re: Dr. Potter's protocol: can you help !

Posted: Mon Jul 01, 2013 3:43 pm
by alexm
Bonjour Iris,

Je vous ai deja envoyé ce message mais le voici de nouveau.

Bon courage,
Al
Re: Dr. Potter's protocol: can you help !

Sent: Mon May 27, 2013 5:24 pm
From: alexm
To: IRIS
Bonjour,
Je n’ai jamais pu passer une IRM 3T en France. J’ai commencé à pousser un peu et à chercher du soutien du coté d'autres malades en France mais personne n’a voulu me soutenir. Depuis, j’été diagnostiqué d’un conflit de hanche et déchirure du labrum et j’ai un peu laissé tomber l’IRM 3T. A part cela, Dr Potter ne semble plus partager son protocole donc je ne pense pas que ca vaille la peine de me casser la tête à essayer de convaincre des spécialistes. Il y a des machines partout en France, mais c’est la radiologue qui compte et surtout la volonté du corps medicale de trouver une solution.
Bon courage et ne perdez pas l'espoir,
Al