[MelodyL]

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

[mrsD]

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.

[MelodyL]

Originally Posted by mrsD

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??

[zorro1]

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 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?

[nide44]

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.

[MelodyL]

Originally Posted by zorrro13

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 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?

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.

[MelodyL]

Originally Posted by nide44

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.

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.

[nide44]

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).

[MelodyL]

Originally Posted by nide44

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.

[daniella]

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.