Serious neuropathy - docs say last option is MORPHINE
 

Hi Everyone,

My father-in-law lives in Italy and has had a serious neuropathy condition (non diabetic). His doctors have tried all the possible drugs and treatments, the last 2 being cannabis oil and just yesterday an electrical implant to block the pain in his feet, but nothing has provided him any relief.

We are trying to find out if there is a top-notch neuropathy clinic in the USA (Mayo clinic, Johns Hopkins or other top clinic) that might be able to help him.

He is extremely desperate from having pain 24 hours/day and now he's talking about going to Amsterdam where assisted suicide is legal in Europe, so he is truly at the end of his rope.

If anyone out there has ideas on where we should look for some help in the U.S. we would appreciate it so much. Thanks for any information you can share.

Jeff

Hi Jeff,
Welcome to NeuroTalk.

I'm very sorry that your Father is in so much pain. I don't live in the US so have no recommendations in that regard, however, I would suggest asking over on the neuropathy forum here ...

Peripheral Neuropathy Forum

SCS & Pain Pumps Forum

Chronic Pain Forum

I'm sure you'll find information and support here,
take care.

Welcome jdvp. :Tip-Hat:

I am so sorry to hear about your father in law's suffering. The Mayo Clinic focuses quite a bit of resources and research to neuropathy.

I hope he finds relief soon. Sending Healing Love, :hug:

Dr. Chin at Cornell Weill clinic in New York City has worked well for some of our members. Mayo, less so.

https://weillcornell.org/rlchin

This is the testing protocol they use there:
http://www.questdiagnostics.com/test...ripheralNeurop

You can look thru that testing list and see what your father in law has had.

The Mayo Clinic in Rochester, MN is very good.

Hi Jeff,

Firstly, I feel for your Father-in-Law. Chronic pain is not something that is easy for any of us to live with, and I have been suffering severely physically for 25 years and deteriorating to that point for longer.

Secondly, his mental state. Dutch Law for Physician Assisted Termination of Life is very strict. Here:

the patient's suffering is unbearable with no prospect of improvement
the patient's request for euthanasia must be voluntary and persist over time (the request cannot be granted when under the influence of others, psychological illness or drugs)

I doubt your FIL could find a Dr to assist on the grounds of Neuropathy on these first two points alone. We are talking about the pain of terminal cancer here. Believe me, I am 45 minutes from a ferry to Amsterdam - if it was easy…

What he needs IMO is Therapy and effective treatment for his obvious Depression. Does he have any treatment at all. As for all the treatments he has had for his physical condition, does this include Infusions? IVIG, Lidocaine, Ketamine? From what I've read on our Forums the latter two are more readily available this side of the Atlantic for some reason.

Keep searching, but address the mental health issues as a matter of urgency.

Dave.

Thanks Kitt, I called them today and I was told they absolutely don't do any phone consultations. I'd hate to have my father-in-law go to Rochester and have them look at his history of treatment and tell him, "sorry, we can't do anything for you".

I don't understand why they wouldn't at least let us pay them to review the documentation of his treatment to-date and give some kind of indication about whether they thought it would be worthwhile to go to Rochester to be evaluated.

JDVP

When it come to neuropathy--
 

I would try the Cornell-Weill center for Peripheral Neuropathy in New York, or the Neuropathy Center at Massachusetts General in Boston, or Jacksonville Shands in Jacksonville Florida first (probably in that order).
Then perhaps the Johns Hopkins neurology department in Baltimore.

All would be shorter trips, as well.

In the midwest, my first choice would be the Jack Miller Center in Chicago, followed by the Washington University Neuromuscular Center in St.Louis.

All of these have the virtue of being dedicated to neuropathy research and treatment.

I understand what you are saying. However, I would imagine that they have to see him as a patient and not just review his treatment to-date. I would think that would be true of any physician. Here is a site on Dr. Dyck. He is the Professor of Neurology. He and his team specialize in all kinds of it.

http://www.mayoclinic.org/biographie...d/bio-20053356

Hope you find an answer. In the U.S. News and World Reports the Mayo Clinic in Rochester, MN ranks #1 for neurology and neurosurgery.

http://www.mayoclinic.org/department...w/ovc-20117067

The Mayo Clinic in Rochester, Minnesota is one of the best.