Last Night's May 19th PN Support Group meeting
 

Hi All

Last night was another VERY interesting meeting. I am including a video I made at that meeting. It's at the end of this post.

The beginning of this video shows Steven (our Group Leader), speaking about how execise impacts neuropathy.

Then, Glen gave a presentation and he was his usual most eloquent self. Nicely done my dear Glentaj!!!

Steven, the Group Leader then introduced Dr. Suelane Do Ouro, who is a Neurosurgeon and is the Associate Director of Pain Medicine at Beth Israel.

Unfortuately, as I was videotaping her presentation my Flip's battery died. I apologize.

But she spoke about Neurostimulation as an option for chronic pain, and she explained how this is ideal for people who have neuropathic pain.

I had been under the impression that neurostimulation was only for people with spinal pain. How wrong I was.

I wish my Flip didn't die so you could hear the rest of her presentation. I found her to be very compassionate in dealing with people who suffer from chronic pain. She was forthcoming, and direct and answered everyone's questions. She was extremely approachable, which to me is very important.

I am going to get more information and post it on this thread. But for anyone who wants to call her office and get further details, here is a website that gives her contact info:

http://www.docnet.org/physicians/phy...?phys_id=10543

Alan is SERIOUSLY thinking about someday going for this.

They do a trial with the leads and wires OUTSIDE the body for the first week, and then, if one has positive results, you go back in and they implant it. This is done under sedation. After it's implanted, you can bathe, and shower and do regular stuff. You don't even know it's there.

She explained how opiates really don't help neuropathyic pain. Only the anti-convulsants seem to work sometimes but they have side effects.

It has been her experience that this reduces pain (not 100%) but close enough that people DO get relief.

We'll look into this further.

It was a great meeting.

So here is a link to my video that I made last night from that meeting.

http://www.youtube.com/watch?v=hfIv1nRb7Wk

Thanks Melody...

I've been to pain conferences too, and have heard the same.

It is my impression that the neurostim services are really being pushed now by neurosurgeons... it sounds good in theory, but the devices have mega problems and don't often work well.

Check out our SCS forum which is a subforum to Medications here. There are many posts with posters voicing problems and failures.

This push coincides with the new gov't interventions to reduce opiate use in this country.

HI Mrs. D.

I have read about the possible negative effects of these things on the other forums. And we also had a member of the meeting ( this was last year), well the guy had one of those implant things and in his case the implant site became infected and they had to remove it twice. I guess it's either going to work, or it's going to be a disaster.

And it was mentioned at the meeting that doctors DON'T GIVE PAIN RELIEF in hospitals.

Now I wonder why the government is against this (opiates for pain relief), I mean. Isn't this called palliative care? What are they going to do? Do away with palliative care??

melodyL, thanks for the vid. It gave me a nice positive boost just listening to people talk about P/N in the real world. the procedure may or may not work but the speaker did remind me I had to walk for 20 mins, just occurred to me that i haven't left the recliner for the last 4 days :eek: and weight loss directly effect the feet. I know that but nice to be reminded.

By the way the people that attended were they wearing shoes?

Dang!!
She was just getting interesting, when it cut out.
Speaking about blocking the brain from having perception of pain
being a factor in anesthesiology.
I wanted to hear more.

Were the people wearing shoes?? Absolutely, and one time that was the topic of discussion. The type of footwear that people with PN should be wearing.

Alan had picked up his foot to show his custom made shoes with custom made orthotics. Steve had passed around special orthotics with gel in them that would cushion the feet. He had us put them in our shoes. I didn't like them so I didn't purchase them. So we were going around the room, comparing the shoes we all were wearing and this lady takes off one of her shoes and shows us. It had NO SUPPORT, her toes were not protected (In case something fell on them). I remember Alan telling her "you really shouldn't wear that type of shoe with neuropathy) and everyone agreed. She just laughed and said "I will not wear ugly crocs or any other type of ugly shoes, I'm too vain"

And she was not in her 20's let's put it at that.

So vanity will win out in some cases.

I know and I'm so sorry. Be assured the next time we have a speaker, I'll make sure to change the batteries and put brand new ones in the Flip.

The neurosurgeon was explaining how the neurostim thing worked by comparing it to a woman in childbirth.

She said: "Imagine a woman in the pain of childbirth and we have to do an episiotomy (cutting) so the baby will slide out easier. We do not use any anesthetic to do this, and the patient doesn't feel anything. Why?? Because her brain is so overloaded by her other pain, she can't feel the pain of the cutting.

"So when we implant the neurostimulator, the brain is not getting the signal to feel pain."

And then she held the model of the spine that was sitting on the table next to her and she described where they do the injection, putting in the leads, etc, and the other man showed the remote thing that you program in various intensities.

I said "that thing is wireless?" He lauged and said "Yup"

Technology is amazing.

I just wish it didn't have those possible side affects like infection, etc.

I think that Jerry Lewis had one implanted
and used a wireless remote to vary intensity.
He was a spokesperson for the product's positive results.
He had back pain (to say the least) from many years of pratfalls and tumbles in his comedic/acting career.
He injured himself many times during that period,
and it affected him severely as he grew older.
He mentioned the stimulator more than once, during his annual telethons (for Muscular Dystrophy.... or Cerebral Palsy- I forget which).

Yeah, he uses the Medtronic device. He said: "it saved my life"

I believe him.

I have sciatica (for years), degenerative joint disease, diabetes, I'm 63, and I just got my new shoes from the podiatrist. insurance paid for them.

I get a free pair once a year. I try and pick out ones that are wide enough in the toebox.

They are from Dr. Comfort.

I walked the 22 blocks to Shoprite wearing these AWFUL shoes. I usually wear my OTHER Dr. Comfort shoes which give me no problems and I could walk all day in them.
But not these.

I could barely limp around the supermarket. Once I finished shopping, I went out, found a local 99 cents store and bought a pair of sandals for $3.99

HEAVEN!!

I cannot believe that I have these awful Dr. Comfort shoes.

I am going to bring them back to my podiatrist and tell him what happened. I'll never wear them again.

ugh.

I was supposed to get a scs but then my last pain doctor felt it may increase my pain rather then settle it since other treatments have. I have PN and RSD in my legs. Before getting a scs one should always start with less invasive and work up.
I know a few people who have a scs. A couple the condition has spread to the area that the scs was implanted. Some have had problems with the leads and pain where the battery is. I do know a girl though who got relief.
My pain doctor said that some relief will depend if the pain is in your brain or coming from your spine. Though for ex I have leg pain if the pain was actually stemming from the spine the scs may help more. I was told if it is coming from the brain that the scs would not give as good results and that is where meds come into play. Who knows though.
I do know that some doctors I have seen are big on scs and some are not. They don't always look at the specific person and instead they just look at the dx.

Well, I most certainly have one question for the person who told you that "it depends if the pain is coming from your brain or your spine"

All pain is interpreted by the brain. The brain itself can feel no pain, that's why you've heard of people being awake during brain surgery when the doctor operates on the brain ITSELF and the doctor is asking the person questions.

Of course if the doctor is removing a tumor or something like that, I would imagine they would put a person to sleep but there are some procedures that the person is awake for those procedures.

So I do not understand what that doctor meant "the pain is from the brain".

Now as to RSD. The neurosurgeon at the meeting told everyone around the table that "My most successful people are the one's with RSD" "They respond the best to this neurostim procedure".

I guess some people get lucky and some just don't.

I hope someone can chime along and explain this brain pain thing.

Thanks much

This is the way I understand this...

The brain tends to make pathways, prune neuron connections for economy of use. Riding a bicycle, reading, speaking, playing an instrument, etc...all forms of learning... establish pathways for economy.

When pain is perceived it enters a long loop in the brain (I've put that graphic up here several times). It does not just go to one spot right away. Within this loop are areas for perception, and emotion. The way chronic pain is studied today, is that pathways become established over time during the chronic phase, and then the brain keeps that pathway, and it activates when few or no signals come in. Phantom limb pain, for amputees is an example. They feel the pain in the limb they used to have, even after it is removed!

Some of the new novel pain relieving approaches, I've seen on the science programs on cable, involve retraining the brain thru meditation and/or hypnosis to ignore those pathways that have become permanent. In other words, make NEW ones.

When doctors refer to pain from the brain, this is what they are referring to.

I have seen in myself in the peripheral area, nerves keep sending signals when the injury is over. The MP I have was like that. Once I used the Lidoderm every day ...lidocaine is a sodium ion channel blocker....the nerve gave up and stopped firing so much. This MP resulted from my C-section, and was pretty intense for many years after my son was born. There are many proposed treatments including surgically severing the nerve completely. But some times that nerve will grow back even.
Putting the nerve to sleep for me, seemed to have a permanent result. So it is possible that other nerve paths outside the brain may become accomodated to sending signals long after the source or trigger of the pain is over.

The SCS devices are trying to block signals from the peripheral areas before they get to the brain. But as we see here, they don't always work either.

Thanks very much Mrs. D.

I often wish I had YOUR brains!!!

lol

Melody

Thank you Mrs D for explaining what I was trying to say.
Melody the scs is a common treatment for rsd but overall it seems to cause a lot of problems. Yes some people do benefit but it is taking a big risk to get this done. With RSD any procedure or even small treatment can cause a spread. Even when I go to the dentist I have the dentist take extra precautions. I am very thankful for my last pain doctor who said he was fearful of the pain increasing. One pain doctor I saw at UCLA was very pushy about doing the scs but did not even try less invasive first because he was out for the $. With any treatments I have learned it is important to start less invasive and work towards more. Yes it may take longer which when in such pain sounds horrible but in the long run may make for less pain and problems.

Hi Daniella:

I think it's so sad that we live in a society that doesn't value anything but the almighty dollar. Physicians take an oath to "do no harm", but they refuse to learn about good nutrition, the benefit of the correct supplements for the body, etc.

Instead, they order tests which irradiate our bodies, they prescribe pills (which they are probably paid to push on us).

I long for the days long ago when a family doctor would put his hand on your forehead, look at you and say: 'you need to get out of the house, get some fresh air, get some exercise and you'll be fine'.

And I know I'm simplifying matters but you get my meaning.

When I was younger, no one gave anybody pills. Doctors came to the house, examined you, found out what was wrong and told your parents what you needed.

And no one had health insurance. Because, god forbid, if you had to go to the hospital, it didn't cost $5000 a day.

Live has changed, medicine has changed, hospital bills have changed, and now we live in a world that has us addicted to everything.

I think the best thing we all can do is not smoke, not drink to excess, eat nutritiously, don't eat too much, exercise if we can exercise, and try to de-stress.

If we can accomplish this, we would all be in a better place.

In my case, I don't allow toxic people to invade my life and my space and my head.

I have learned to do this with help from professionals.

Toxic people can place so much stress on the body that one can get sick.

So I try to say something nice, do something nice and just be a thoughtful person as best I can.

You'd be amazed at how good one can feel, at how the aches and pains of living a normal life, well they can be abated when one tries and de-stress.

Sometimes we can't get all the stress out of our lives. But we have to try and not let the stress kill us.

Because stress CAN kill us.

I once had a nurse tell me that over 40 years ago. I worked for a company in NYC and they had a nurse on staff. I became friendly with her. And we were talking about stress. Now at age 20 something, who had stress? I didn't even know what stress was.

She told me 'Remember this, stress kills"

I never forgot what she said.

Took me 50 plus years to apply her advice but I learned how to do it.

So that's how I now live my life.

I don't sweat the small stuff, I have my hobby, I get along with my husband and I don't let toxic people invade my space.

You take care,

Melody, your video was great. Where is your support group? I'm in Long Island and haven't been to one yet but I think it's time.
Thanks. I'll be watching for your next "show" :)

I agree your videos are great. I wish I could come.
I very much relate to stress. I try to keep as calm as I can and lead the least stressful life I can. I also don't allow toxic people in my life or try not to. I had to separate myself from some people because of that. I try to focus on the people who do care and support. I can tell you are a caring person. I hope if I can get to a better place I can volunteer. I think you are right about helping others and it making one feel good.
As for doctors it is sad. Even since I was young I feel health care has changed. Though I was not faced with as much. I often times wish I had a hidden camera like 20/20 when I go into the doc office and it could show how some docs treat their patients. I am not saying there are not good ones because I know there is. Just the bad ones stick out when one is already facing so much health wise.
Sending warm thoughts

The Manhattan neuropathy support group--
 

--usually meets the third Thursday of each month at the CBS building at 51 West 52nd Street (corner of Avenue of the Americas) from 6-8PM.

It is moderated/organized by Steven Smith, but Mel is a big part of it (she keeps the mailing list). :)

There is, I believe, a similar support group that meets in Long Island at North Shore University Hospital (Community Drive in Manhasset), though I believe it only meets every three months, and I don't know who organizes it; I know that Echoeslongago who is on these boards has been there (and maybe can give us some more info about it.

The Manhattan neuropathy support group--
 

Thanks Glen, do you know if there is a website to this group?

No, I have never seen a website for this support group. That IS a very good idea. I'll run it by Steven at the next meeting.

A website devoted to the PN Support Group in NYC.

The only thing is that while most of the attendees have computers, they are really not THAT computer literate. I mean, they do email and I really don't know what else they do. And the other attendees are somewhat older and only do things by phone.

But I think it's a super idea and I'll run it by Steven.

Thanks much

Melody

Daniella:

I wish I had your warm thoughts at 3 a.m.. I was in a dead sleep. Hours before I got an email from my son (talk about a stressor!!!)

And of course, in the middle of the night I was awakened by a spasm in a certain part of my body which shall remain nameless. It ALWAYS COINCIDES with a communication from my son, and it ALWAYS happens when I'm asleep.

It wakes me up, the pain is horrible, I have to go and get a heating pad, lay on top of it, and in 5 minutes my whole body relaxes.

This has been happening for about 4 or 5 years now. Always when my son contacts me.

It's my body reacting to his communication with me. I can distance myself during the day with no problem. He lives 3000 miles away.

But when he starts up again, (he threatens suicide to get his way), and I have to contact the police department where he lives, and they go there and find him perfectly fine, (this has been going on for 9 years). He's 30 and has issues. LOTS OF ISSUES.

I have gotten therapy and have been told to distance myself emotionally. I've succeeded to a point but I guess my brain hasn't caught up because WHAM, at 3 a.m. whenever I've heard from him (be it by email, phone, mail, WHATEVER), I try and cope as best I can but I'll be in a dead sleep and in the middle of the night the spasm wakes me up.

They happen so far apart, I can forget about them.

I wish he would stop communicating with me. I have requested this but it doesn't stop.

So to put it mildly, HE'S my stressor, my body reacts to HIM, and I have to take steps to get back to sleep.

It's a vicious cycle.

Thankfully I wake up just fine and I can go out for breakfast and meet up with my friends.

There is no one (in my circle of friends) who I can talk to. They all have their own issues with their adult childen.

It's nice when I see a family with adult children and everybody is appreciative of each other. I don't see this very much but when I do, I appreciate it. I know that there are SOME families with adult kids who treat them with respect and treasure them.

I was not so lucky.

All I can do is try and find joy as best I can.

That's why I sprout and I teach sprouting with my youtube videos.

Very rewarding. Best hobby I ever had.

Take care and thanks for listening.

Melody

I am sorry. I remember you stating your son has mental struggles. I am sorry he takes out his stuggles and issues on you his mom. It is not right. I understand the battle of problems but one should not be mean to the ones who love and want the best for them. I hope one day you can have a healthier relationship together.

If you want an email buddy I am here for you. As you can see I am up day and night. Going back to the psych Thurs so will see but I am running out of meds to try.

I am so glad you found a hobby that helps you. I need to figure out something myself.

Thanks for the kind words hon.

Much appreciated.

You take care and I hope you find a hobby that suits YOU!!

Take care,

Hi Everyone.

I'm putting this little story on THIS thread because it has the information on the neurostimulation device.

Yesterday when Alan and I were waiting in the waiting room for Alan to go for the epidural, a very TALL, very nice young man comes in and he's wearing a shirt with the words MEDTRONIC on it. Alan says to me "He's the Medtronic guy"

We thought he was the guy who implants the device.

So we struck up a conversation with him and we found out he supports the doctor when the doctor implants the device.

Alan starts talking about his neuropathy and that we go to the support meetings on the 3rd Thursday of each month, and that at our most recent meeting there was a neurosurgeon who implants neurostimulation devices. The guy has a big smile on his face and he goes "Oh you mean Dr. DeOro" and I said "Oh my god, you know her?" and he says "Yes, I've worked with her"

We immediately exchanged email addresses and he's contacting the leader of the PN Support Group in NYC.

What a small world.

Imagine, we're sitting in a waiting room, and a complete stranger walks in and we find out he knows the speaker at our last support group meeting.

And he was most INTERESTED in this website.

I gave him all particulars about NEUROTALKS.

How cool!!!!