horrendous Nerve Blocks last blind test by Pain specialist

[Guest guest]

Hi

Just curious if anyone has had a nerve block where they donot know

what is being injected

This procedure was horrendous, They started with an IV which again

they put in my foot as they cant get as vein anywhere else.

I had this block last Friday and it was done via an Xray machone while

they guided in 2 needles one either side of my lower spine, I heard

T12 and think that may be it isnear there.

They then after inserting the needle on each side poked and proded so

that I screamed on the table on the left side, this didnt stop them,

the nurse was clutching my arm

he then got the needle at the base of my spine on the right and poked

it so that I screamed in pain, I was off the table even though I was

lying face down, he proceeded and I just lay there and cried he

continued with no offer to stop or help with pain relief.

I have had this procedure done before and I was sedated by a pain

specialist enaetshtist,. This guy was also a specialist pain team

anesthtist.

he carried on for another 15 minutes, and then asked if my pain which

was the normal pancreas pain for which I had to reduce meds to get it

to be high for this test, was better. I replied it made no difference

and I have no idea as it is a blinded test what it was.

They then put me in the other side of the recovery room, and I lay

there crying in pain for 30 minutes to which they did nothing. I got

up got dressed and said I was going back to the ward so at least I

could get my own meds and try and get the pain down myself.

He then came over and said that, he had learnt

alot about my pain, I asked him to tell me, he said not here, I didnt

feel good about this, he said that he would see me in 2 weeks in his

room.

This saga of unrelenting pain has been going on since they removed my

gallbladder 6 years ago. The pain has never relented, I have even had

my splanchnic nerves cut to try to ease this with no let up.

I have had feeding tubes, long stays in hospital multiple scans tests

etc you name it.

My pain is worse at night, bad if I eat or even drink water,worse if I

lay down. It fluctuates from a 4 to a 8 on average even with morphine.

I now get the feeling because of these tests and the fact that he may

or may not be able to find / prove the location of my pain via

scientific test, that I am going to get a response that says that my

pain is not there or is not real etc blah blah

Now I have examined this logn an dhard , and you begin to wonder if

they are right etc.. But then the pain bores through me again and I

know that its there.

I would want nothing more in my life then to to know, experience no

pain for a day or more in my life, but it hasnt happened.

I am unsure as to what to do now, whether to request all my full copy

of medical records and look through them so I can begin to try an

dwork this out myself, and find a cure for this pain.

I dotn know how I will handle goign to see this pain guy again by

myself especially if he gives me a baloney line re my pain.

I said to him at the start, I wont to be rid of the pain, the

constipation, and the depression from this pain that has been going on

for 6 years. I told him that pain, etc or constipation can put me in

hospital at any time. Constipation put me in for 43 days last time,

they gave me a drink pico prep and I ended up on fentanyl, and

epidural and feeding tube,

he only gave me this choice eg blinded pain tests, I said well I have

no choice do I .

I dont feel that there is any compassion with this guy and me whcih

was identified with him continuuing last Friday when I was crying in

pain.

I have tried to work out what may be best, a pain pump? duragesic

patches?, neurontin, I dont know.

I am just tired of this, and here in New Zealand they do not have EUS,

PET scans, a scretin test or many speclialists who know anything about

pancreatitis and especially in my case where there are no

califications, and I have also had the first Thorascopic

Splanchnicectomy which should have worked for 70 percent of people to

cut the pain down but it did not for me.

I have run out of avenues to ask

Debs

[Guest guest]

Dear Debs,

Since I haven't ever had a nerve block I can't answer your questions

regarding yours. I do know that the doctor's that I've spoken with

about having one done did say that they were more effective if they

were done while the patient was in pain from an attack, so they could

isolate the nerves and see what worked to bring the pain down to a

comfortable level.

What you've been experiencing with this pain doctor sounds, to me,

like pure torture. It would bother me that they haven't told you

afterward what they are giving you when they've been conducting all

these blind tests. You've been so strong, and compliant, to have gone

through all of this blind testing. I don't think a person who had

contrived their pain would have endured everything that you have, just

to get the answers.

I'm sure you must be most anxious to hear what the doctor has to say

in two weeks. Having to wait another two weeks to find out the

analysis of all these tests will be torture in itself....don't you

hate it that they do all this to you, and then make you wait even more?

IMHO, I find it hard to believe that this is just something that's all

in your mind over these past years. I just don't believe that, and

will be vexed if that's what the doctor ends up trying to tell you.

How would you explain your relief from the pancreas antioxidants? You

haven't been taking them recently, have you? If you said yes, I'd be

surprised, since I can usually tell by your attitude and level of

coping when you've not had any for a while, and I would say that this

is one of those times. I'm convinced that they help not only with the

pain, but somehow with our levels of depression, too.

I wish there was more I could offer that could help you with this

quest. I do feel that you should ask for copies of all your medical

records, not so much that you could try to figure out what's going on,

but just to have copies for your own reference. Especially copies of

the tests from the pain doctor, and his analysis of each test. Here

in the states, we are entitled to copies of all our records, they are

considered ours, but I don't know if the same applies in New Zealand.

Keep up hope, perhaps the news from the doctor will be definitive and

something that CAN help you from now on. I'll certainly be praying

for that, and for you to get the help you need whenever a problem occurs.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina Rep

South Eastern Reg. Rep., PAI

Note: Any advice or comments are based on personal experience only,

and should not be substituted for consultation with a medical

professional.

[Guest guest]

Hiya Heidi

Yes I have been struggling for the last year to try and make heaway

with any specialist here, they are not in my town or dont exist. My

old pain manager moved on I wouldnt have been subjected to this one.

Rob was so compassionate and was always there for me he could fix or

relive the pain and his way was amazing. I have lot him and

inherited this guy anders now.

I have been on the antioxidants but its a lower dose as I cant

afford the extra money as they come in from the Uk and cost 250 a

month for them alone, when I have run out approx 4 times each time I

have endd back in hospital admitted to severe pain. I hav tried to

get Neurotin as I was on a trial ans it helped and I figure dif I

could get it then I could reduce my morphine but as I am not an

epileptic and they do not recognis eas being a treatment for pain

they wond fund me so I cant afford the drug it will only go to

epileptics not those in pain. That is teh way our govt medicine

funding is

I take pills to wake up, pills to sleep which I am not, pills to eat

pilsl for pain, at any point I can end up in hospital due to

constipation, I have to on average take 9 Fleet phosphate enemas

these are the ones that they use to clean people out before

operations. but I have to take none for them to work.

What I did with these tests took one hell of alot of courage I

never knew I had I was scared to bear the full foce of the pain,

I was given no options othe rthen this so I said well I have no

options. I asked to have my pain go away be treated, my contipation

and my depression as a result of this. and this was his answer. i

actually feel worse off then before, i used t feel at least I could

trust the pain clinic but now I dont.

I am requesting copies of all my notes and have prepared the letter

and they must give them to my by law.

I went to this pain doc as I had run out of steam, I have managed my

cpndition with no help from and pain team, or even a Gi in 4 years

all I asked was for help

maybe a implanted pain pump something

I now have cleared my messages and he has left one to say can I meet

him next Tuesday at 1 30 , I am almost too scared to go, I dont feel

that I am strong enough to fight him back if he says the pain a

isnt there or b sorry cant find it, or nothing we can do.

i have toyed with the idea that maybe I have to be the squeaky wheel

and well if they want to see what I am like with no meds then so be

it and they can have it and deal with it and fix it as I will be

there till they do.

i just feel now thinking back on Friday and having had tiem to

reflect eg tellign him his last drug test meant I was in so much

pain I almost ended back in hospital, or for him to watch crying my

body lifted off th ebed as he was causing me so much pain with a

nurse cluctching me and a woman radiographer just wtaching me while

he just continued, I felt like I was being puncished, then they

lefty me there crying in pain as i had ha dno meds in 18 hours until

I said I am going now I am walking back to the ward to get my meds.

Now as a result of this latest never block I have shingles down mt

left sie right where he injected me, now that makes me think that it

was a result of the stress / pain of what he did.

thanks Heidi you are awesome

Debs

>

> With love, hope and prayers,

> Heidi

>

> Heidi H. Griffeth

> South Carolina Rep

> South Eastern Reg. Rep., PAI

>

> Note: Any advice or comments are based on personal experience only,

> and should not be substituted for consultation with a medical

> professional.

[Guest guest]

As I've posted on this and other pancreaitis-related boards,

I've had great success with EUS (endoscopic ultra sound guided)

celiac plexus nerve blocks.

1. They are not done through an epidural in the back.

They are done internally. That's right, in the gut

2. They are not performed by pain management specialists.

Only about a dozen GI doctors in the country do them.

I'm happy to report that more doctors are learning how

to perform them.

The procedure, which is done uner sedation, is performed

through an upper endoscope that goes through the esophagus

and into the stomach.

The ultrasound guides the endoscopist to the area of the

stomach wall where they identify the nerve bundle(plexus)

that carries the pain message from the pancreas to the brain.

Once located, an injection of Bupivicaine (like Novacaine)

is done through the stomach wall right into that plexus.

It's a very quick procedure that can deliver some really great

pain reduction and/or relief for varies periods of time.

I was the very first person to undergo it in NY. That was back

in 1996. Earlier this year, I had my 15th.

The very first one didn't work. But each successive one delivered

any where from a month to two years of lower pain, so much lower that

I've not needed any narcotic analgesics.

And I have enjoyed many pain-free days.

There are published studies in which the pain management external

through-the back approach have been compared to the EUS method.

EUS had better results.

I want everyone to understand that, as with all blocks, there are no

guarantees with the EUS method. Sometimes they help. Other times

they might not. It can differ from person to person and from block

to block. And no one knows what level of pain reduction will be

derived or for how long.

I've been very fortunate to live near one of those few sites where

it's done, Winthrop-University Hospital in Mineola, NY.

But I'd travel to the ends of the earth if needed.

-Ellen Grove

Long Island, NY

[Guest guest]

HI Deb, What a horrendous thing to go through. I just wanted to repeat

something that my own doc said to me. " Just because you throw a loony

in the lake and can't find it, doesn't mean it's not there "

In translation a loony is our dollar coin and we live in a lake resort

area. So in other words. You can throw a coin in the water. You might

not find it but you know it's there. Pain is real! There is a cause for

it, but because that cause is not as yet found, does not mean that it's

not there or is not real!! Maybe that doesn't make sense, I'm not doing

well today but when I read your post, those words that he's told me

just came to mind. {{hug}} to you, Tum

>

> Hi

>

>

>

> > I now get the feeling because of these tests and the fact that he

may

> or may not be able to find / prove the location of my pain via

> scientific test, that I am going to get a response that says that my

> pain is not there or is not real etc blah blah

>

>

[Guest guest]

deb,

If you live in NZ, I would be getting on the first plane to Sydney to

be treated by one of the doctors there...this is just too ridiculous.

I would also be reporting these doctors to the hospital board about

the pain you were subjected to without any local or anaesthetic or any

slight sedation to at least help.

I can't understand how they can try this blind testing on a human

being. It just doesn't sound right. They sound like butchers to me,

and I'd be getting my butt away from them pronto.

Regards,

Ward...TN/ex Adelaide, & Sydney, Australia

[Guest guest]

I have had two EUS celiac blocks done at University of Colorado.(and 2

done thru the back) Of the two choices (placed thru the back or

endoscopicaly), I would prefer the EUS. Felt better faster...no back

pain. If the blocks work, they are wonderful. Just my two cents worth.

Hugs,

Suzi

Colorado

[Guest guest]

Ellen

Thanks a lot for sharing the information on the pain block done by

EUS, I didn tknow that it was even and option and I am pleased to hear

that it is a successful technique. Unfortunately we do not have any

EUS equipment here in NZ, I have asked before for procedures on them

and no trained staff.

Debs