Re: pain clinics... for Donna and all

October 8, 2002

I am scheduled for 2 blocks in the next 7 days, so I am going to stay with them

They told me that they will be doing 2 stellate ganglion blocks a week on me for the next 3 weeks. Does that sound right? Should I ask for more? Thank you, Donna

Hi Donna,

I think I would have to agree with here. I had 2 stellate ganglion blocks about 10 days apart. They had thought about doing more at the time of the first, however after the 2nd one and I had only gotten about 1 1/2 days relief from that one they decided that anymore wouldn't be of any good. That is when we started on Bier Blocks. I think I would want to see what kind of relief you get after 2 or 3. Good Luck hun! my prayers are with you...

October 8, 2002

Deb, I am having a stellate ganglion block on Thurs. but the doctor will

not perscribe me anything but ultracet and lidoderm patches. They

both do nothing to help with the pain and when I asked about pain patches

or lolli-pops for pain (I must mention I am a gastric-bypass patient-so

everything I mal-absorb) they told me they are only for cancer patients.

I am scheduled for 2 blocks in the next 7 days, so I am going to

stay with them so I can get the blocks ASAP. Hopefully this

doctor that I am going to on Monday can help me with the pain. Right

now I take almost 3000mg. of neurontin, ultracet for pain every 4hrs.

elavil 50 mg. at hour of sleep, zanaflex 2 mg. at sleep also.

I don't see how I can get in and be scheduled anywhere else, that is why

I am using them. They told me that they will be doing 2 stellate

ganglion blocks a week on me for the next 3 weeks. Does that sound

right? Should I ask for more? Thank you, Donna

debgena@... wrote:

Here

is a site that will search for a good pain clinic near you http://www.pain.com/painclinics/default.cfm

Hugs and a pain

free minute,

Deb

Deborah Genatossio

(Debgena@...)

National Planning

Director ASRSD-CRPS

Founder of RSD-CRPS

of America

providing support

for years for all rsd friends

*:-.,_,.-:*'``'*:-.,_,.-:*'``'*:-.,_,.-:*'``'*:-.,_:-.,_,

We could learn

a lot from crayons: some are sharp, some are pretty, some are dull, some

have weird names, and all are different colors....but

they all exist

very nicely in the same box.

*:-.,_,.-:*'``'*:-.,_,.-:*'``'*:-.,_,.-:*'``'*:-.,_:-.,_,

RSD-CRPSofAmerica

The material

presented here does not reflect the views of professionals. Please remember

we are not professionals. Members may discuss uses and dosages for therapeutic

products that have not been approved by their own doctor. A qualified

health care professional should be consulted before using any therapeutic

product discussed on this list. All members should verify all information

and data with their own healthcare professional before employing any therapies

discussed in this group.

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October 9, 2002

Susie,

You are absolutly right, that if the blocks are done the right way, etc. and

they work, they can work wonders for people.As a matter of fact I know of a

person who was pain free for a year after having blocks. I certainly didn't

mean to scare Donna, and if I did I am truly sorry, I was just stating my

experience. Yes, you do have to be awake, but should be given something for

relaxation, of which I was not. Never. The people who gave me those blocks,

I have come to find out recently, have many malpractice suits against them

right now.The blocks are not painful when done in the proper way, and when

the patient is at ease. I did forget to mention that at the time the blocks

were performed I had already had the symptoms of RSD/CRPS for 5 years, and

had no treatment for the rsd until the 5th year into it. So I do know the

blocks work better the faster the treatment is started as well. Once again,

I am very sorry if I frightened Donna or anyone, I really didn't mean to. I

didn't think about it, before opening my mouth, what it might sound like to

someone who had never had a block done.

>

>Reply-To: RSD-CRPSofAmerica

>To: RSD-CRPSofAmerica

>Subject: Re: pain clinics... for Donna and all

>Date: Tue, 8 Oct 2002 20:12:25 -0700 (PDT)

>

>This is what I have to say Donna about the blocks. Now you know that this

>is just my opinion and I am going on exactly what the doctors told me. If

>you get any relief,and I mean ANY,then that means they worked. It doesn't

>matter if it last for 2 min.or 2 weeks,all that matters is if they work or

>not. That was what I was told by pain mgt. who were excellent! The first

>on may not last very long,but thats ok,if it works. So,be honest,and

>concentrate,don't let your mind play and tricks on you. Then I think its

>great to do 2 in 7 days. If it is working then the more you have probably

>the more it will keep working and for longer periods of time. The docs told

>me that is how it would work,and for me it did. I thank God that I got it

>there and did it as soon as possible. I really feel that is why mine has

>not progressed alot more than it has. It is still the same and has not

>spread and more than it first had. Started in left arm and spread to the

>right,but no where else. I still have full use of my arms and hands,its

>just that my hands never stop burning and have spasms. The pain never stops

>though but I know it would be alot worse if I had never had the blocks. The

>blocks for me,did not hurt at all, Really,not at all. Just make sure you

>stay still. Remember it does not hurt,so don't be afraid. Please make sure

>if you are like me and would be nervous,have them put ativan or valium

>something like that but not knock you out in the IV. I think for sure they

>want you awake anyway,just make sure you get some thing to relax you. You

>will be fine honey,and please email me asap when you are able,I will be

>concerned so let me or the site know how you did. I will say a prayer for

>you. Please don't loose any sleep over this. It will be just fine. I hope

>they work for you. You take care, Love, Susie

> Donna Langan wrote:My Ortho. told me today that if I didn't get any

>relief after the second that they probably would stop them. Should I tell

>them I want to keep going even after the second one if it doesn't help. I'm

>probably jumping the gun, but I want to have a plan. Thank you, Donna

>Susie Cozine wrote:

>Donna,I'm Susie,just wanted to tell you my experience with the blocks. I

>too had the stellate ganglion blocks. My dr. knew just 2 weeks after the

>surgery that I had RSD. I received my 1st block about 5 weeks after he

>diagnosed it. I have had alot of other drs. tell me that thats the one

>thing I have going for me. I was told besides helping for the pain,it also

>slows down the progression of the RSD. I had a total of 9 blocks

>altogether. As soon as you are injected with the needle and the med. goes

>in,you will know immediately if they will work for you. At least with

>me,the drs. were wonderful,and I had no problems what so ever. I was at a

>place called " Pain net " So I had the blocks 2 weeks apart for 3 injections.

>So thats a total of 6 weeks. Then I was done for a while about 3 mo. Then

>we started up again and did 3 more 2 weeks apart. I didn't have anymore

>for about 4 mo. and then it was 1 and 2 weeks later the 2nd. and than they

>only waited just one week for the last one and that last one lasted! It was

>wonderful for 2 whole weeks. The very 1st one lasted for 2 days,then next

>one about 4 hrs. next on 1 day and next one 2 hrs. Mine just were different

>each time. But each one DID work. That is suppose to prove that you DO have

>RSD. Mine worked instantly! The dr. told me if there was no relief at

>all,then you did not have RSD. What heaven when the last one lastest for 2

>weeks. Any relief is a blessing,and I thank God that I had them so quickly

>because I have been told by several doctors,that ,that is what's

>important,to have them asap,before you pass the 6 mo. mark. Hope this makes

>some sense and good luck on Thurs. Take Care,Susie

> cubfn2@... wrote: In a message dated 10/8/02 12:16:30 PM Central

>Daylight Time, donna@... writes:

>

> I am scheduled for 2 blocks in the next 7 days, so I am going to stay

>with them

>They told me that they will be doing 2 stellate ganglion blocks a week on

>me for the next 3 weeks. Does that sound right? Should I ask for more?

>Thank you, Donna

> Hi Donna,

> I think I would have to agree with here. I had 2 stellate

>ganglion blocks about 10 days apart. They had thought about doing more at

>the time of the first, however after the 2nd one and I had only gotten

>about 1 1/2 days relief from that one they decided that anymore wouldn't

>be of any good. That is when we started on Bier Blocks. I think I would

>want to see what kind of relief you get after 2 or 3. Good Luck hun! my

>prayers are with you....

>gentle hugs,

>brenda

>

October 10, 2002

,

I was not upset with Susie, I was having a rotten day, I know thats no

excuse, but it kind of cut to the bone, and I did take it personally when I

know I shouldn't have. It is very much unlike me to even say anything,when I

feel upset or hurt(years of abuse). I am just starting to be able to stand

up for myself in some things, but I'm most definetly not the wave making

type,and I most certainly didn't set out to hurt Susie either, I was just

stating my opinion and experience.I didn't think my response was going to be

taken in that light, and I was actually surprised. Your right, I probably

should have read Susie's post over again as you did, then maybe I would have

realized that.But,I have apologized to Susie, and told her it wasn't meant

that way, and that I didn't feel as though I attacked her,and that I hoped

she wouldn't leave the group over a misunderstanding. Thank you , for

your friendship,and service.

Love,

>

>Reply-To: RSD-CRPSofAmerica

>To: <RSD-CRPSofAmerica >

>Subject: Re: pain clinics... for Donna and all

>Date: Wed, 9 Oct 2002 13:53:50 -0500

>

>,

> After reading Susie's letter again, it sounds as though that's what the

>doctor has told her--so he's the one that is screwed in the head. I feel

>that Susie was just stating the information given to her by the doctor

>(which was misleading). And I have heard more than once that the

>effectiveness of blocks are NOT a definite diagnosis for RSD. There is no

>certain way to diagnose RSD. It's like the one doing the EMG saying he

>didn't think I have RSD because mine hasn't spread in one year. Where in

>the world did he come up with that?! I hope you will not be upset with

>Susie--I don't think she meant to hurt you by saying what the doctor told

>her.

>Love,

> N.

> Re: pain clinics... for Donna and all

> > >Date: Tue, 8 Oct 2002 13:48:16 -0700 (PDT)

> > >

> > >Donna,I'm Susie,just wanted to tell you my experience with the blocks.

>I

> > >too had the stellate ganglion blocks. My dr. knew just 2 weeks after

>the

> > >surgery that I had RSD. I received my 1st block about 5 weeks after he

> > >diagnosed it. I have had alot of other drs. tell me that thats the one

> > >thing I have going for me. I was told besides helping for the pain,it

>also

> > >slows down the progression of the RSD. I had a total of 9 blocks

> > >altogether. As soon as you are injected with the needle and the med.

>goes

> > >in,you will know immediately if they will work for you. At least with

> > >me,the drs. were wonderful,and I had no problems what so ever. I was

>at

>a

> > >place called " Pain net " So I had the blocks 2 weeks apart for 3

>injections.

> > >So thats a total of 6 weeks. Then I was done for a while about 3 mo.

>Then

> > >we started up again and did 3 more 2 weeks apart. I didn't have

>anymore

> > >for about 4 mo. and then it was 1 and 2 weeks later the 2nd. and than

>they

> > >only waited just one week for the last one and that last one lasted! It

>was

> > >wonderful for 2 whole weeks. The very 1st one lasted for 2 days,then

>next

> > >one about 4 hrs. next on 1 day and next one 2 hrs. Mine just were

>different

> > >each time. But each one DID work. That is suppose to prove that you DO

>have

> > >RSD. Mine worked instantly! The dr. told me if there was no relief at

> > >all,then you did not have RSD. What heaven when the last one lastest

>for

>2

> > >weeks. Any relief is a blessing,and I thank God that I had them so

>quickly

> > >because I have been told by several doctors,that ,that is what's

> > >important,to have them asap,before you pass the 6 mo. mark. Hope this

>makes

> > >some sense and good luck on Thurs. Take Care,Susie

> > > cubfn2@... wrote:In a message dated 10/8/02 12:16:30 PM Central

> > >Daylight Time, donna@... writes:

> > >

> > >I am scheduled for 2 blocks in the next 7 days, so I am going to stay

>with

> > >them

> > >

> > >They told me that they will be doing 2 stellate ganglion blocks a week

>on

> > >me for the next 3 weeks. Does that sound right? Should I ask for

>more?

> > >Thank you, Donna

> > >

> > > Hi Donna,

> > > I think I would have to agree with here. I had 2 stellate

> > >ganglion blocks about 10 days apart. They had thought about doing more

>at

> > >the time of the first, however after the 2nd one and I had only gotten

> > >about 1 1/2 days relief from that one they decided that anymore

>wouldn't

> > >be of any good. That is when we started on Bier Blocks. I think I

>would

> > >want to see what kind of relief you get after 2 or 3. Good Luck hun!

>my

> > >prayers are with you....

> > >

> > >gentle hugs,

> > >brenda

> > >

October 11, 2002

Hey Bev,

I just sent you my update and weather report!!LOL, from another post, okey dokey!!!

Love,

>From: Beverly

>Reply-To: RSD-CRPSofAmerica >To: RSD-CRPSofAmerica >Subject: Re: pain clinics... for Donna and all >Date: Thu, 10 Oct 2002 14:35:18 -0400 > >HEY DENISE, HOW ARE YOU FEELING TODAY & WHAT IS YOUR WEATHER LIKE WHERE >YOU ARE?? GOD BLESS BEV Join the world’s largest e-mail service with MSN Hotmail. Click Here

October 12, 2002

& Susie, My right wrist had rsd b4 the carpal tunnel set in this

stuff is so crazy. Bev

October 12, 2002

Susie, www.bananaboat.com search soothacaine & it will pull it right up.

Bev

October 12, 2002

Susie

You are lucky to be in a State that you can go to your own docs.....Here in Iowa, you can't if you are on W/C, its their docs only. I found that out 7 days after I was injured. I went to my regular doc the day after, who set me up with an Orthopedic Sports Medicine Surgeon....that is a really good one in this area. He wanted bone scans, MRI's and a few other tests done immediately.....and wham, the next day the W/C idiots called and said no.....I had to go to the company doc and then he would have to send me on to another doc. Well, whats bad is that my doc, the Ortho I seen, AND the company doc all agreed on what could be wrong, what needed to be done.....everything. But, he could only send me to one place.....and that was the beginning of HELL and BACK!!!! This idiot refused to let me be on crutches, refused to prescribe any pain meds, no brace for my knee even though the PT he sent me to ordered it and told me to wear it.....Released me back to work, even though I was still in PT and still in severe pain.....and for the whole 4 months I was stuck with him, no matter where i went, the ER in the same area, the PT, or the doc office, I was told to put ice on it constantly!!!! OUCH! I now know better!!! But, this was all before I was even dx'd. The other 3 thought it could of been a torn ligament, torn cartlige or the knee joint had a hairline crack in it....but this quack wouldn't order any tests but the bone scan.

Then, in April, they sent me to the IME, who did dx me with RSD, and said that I either needed blocks done, or put on meds to help, along with PT (again). So, they sent me to a Hospital for the Pt and Pain Management quacks....and ya know, its pretty bad when they haven't a clue on what to do unless you take info you print off the computer to them??? The PM idiot thought he was cute and would have me walk out into the hall past a fan on high every appt...at that time, stuff like that didn't bother me....I just couldn't put weight on it very much, I had some weird sores on my leg, the burning nd the pain, with mild swelling.....so mild you couldn't tell by looking at it, but I could tell myself cause the insides of my leg felt funny. Ok.....Pt Released me after 6 weeks instead of the full 3 months I should of went....so this PM jerk sent me to see a neuropsychcologist. I had to take a 357 question test.....mainly true and false, called the MINNESOTA test. According to this dingy witch....I was more insane than any "in house" patient they've ever had...but dang, instead of admitting me, she let me walk right out of that office!

Then, they sent me back to the IME in Sept. 2001....11 months after I got hurt. I had complained about my right arm/shoulder also hurting to the PM doc, to the first Ortho quack they sent me to, and to the PT.....but, when I said it to the IME....he said straight to mine and Gene's faces that he knew RSD can't spread, so I couldn't hae it also in my arm, but he wouldn't change his dx about my leg. lmao....yeah, right! I got a copy of his report....talk about getting paid extra!!! He completely lied....said that I was either malingering or a huge pathetic liar....that there was nothing wrong with me!

Ok....I only went and wasted a year, had needles, saftey pins, the little triangle thing they have for reflexes, their hands putting pressure on my leg, ice, no pain meds of any kind except for Neurontin and Darvocet (which didn't help at all) for 3 months of that summer, to be told that if those two meds didn't help any...than I didn't have RSD and those are the only two that owuld of helped if I did!!!

So, I finally said the h*ll with the crap....and went out to Chicago to an RSD Specialist. Instead of what I was used to to check the temp in my leg, which was hands with gloves on mostly.....I went in for a Thermography, and when I got out of that....instead of using their hands to see if there were any diff between the legs....they had those sticky thermometer strips they stuck on my legs! Now, those things really work! lol...my left one would make 3 squares turn colors showing the temp, but my right leg would barely make one square lighten up any.

I had 6 Lumbar Sympathetic Blocks done, one a week....(this was a 1200 mile round trip for us to drive to)....and then I had 3 out of 4 Bier Blocks done. The LSB's didn't really help much....about 8 hours of relief average. The Bier Blocks though....I was in seventh heaven for 2 whole days each time!!! But, when I went out for the 4th one...the doc refused to do it cause the other 3 only helped for 2 days max....and it wasn't doign what he wanted. He mentioned the one thing where you go in the hospital for 5 days....have a continous drip, aggressive PT 2x's a day....and then ya go home. WEll, on the way home that day I had a severe ear infection...in both ears. When we got almost home, Gene got off the interstate and went over to where my GP is to have me checked out for them. lol, as usual, they had me do the urine test....and I also found out I was pregnant! So, I'm glad I didn't have that 4th block done that day....even though this kid went thru the 3 right along with me.

The only part I didn't like about going out to Chicago was that he refused to give me any pain meds at all. Dunno if it was so that I could tell him exactly how the blocks were working or what....but it sucked!

Now, its pretty bad when I start going to an OB for the pregnancy, and they'll prescribe a pain killer!!! lol.

But, for all of those that are new here, and are told that you can only see W/C docs.....get a lawyer, a good one, and then Tell W/C to kiss it, you are going to your own docs and they can pay for it! I'm getting tons of bills from the hospitals, clinics and collection agencies....but, instead of them being for the docs I went to on my own without their approval....1/2 of them are also for the places they sent me to themselves!!! I know of at least 4 bills from clear back in Nov 2000.....1 month after the injury. Now that is pitiful. If I'd known they wouldn't pay their own docs....I would of went and found a doc of my own way before 15 months had past!

Tonia

And sorry....didn't mean to write the book again....but, its the only way to actually describe the hell W/C has put me thru, and what they are like here in Iowa!

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

October 12, 2002

Tonia,thanks for writting. I thinks its great to get a long letter. I do that alot and then don't get alot of long ones back. I want to make it clear,and I don't think I did, I do also have an attorney. I work for a medical clinic and I went to the docs there for one week short of 3 mo. Thats how long my com. gives until you have to be well enough to come back and do your job all the way,with no lite duty. So when it was near the end,thats when the doc said I needed surgery,that was all before RSD. I told him now because,he waited too long to tell me I needed surgery,now I needed a lawyer. There was no way to have an operation and be back to work in only one week. I had to get a lawyer,I did,and then I went to my own doc,and I guess I didn't pick a very good one. Thats when my hell began. You have been through it all,I feel just awful for you and wish I could help. Now being pregnant too! Oh Congratulations! Thats always the best thing in your life, to me, there was never anything better than to have a baby. My kids still are everything to me. Now I also have some grandkids and they really are heaven! I love them and will watch them always. I change any plans to have them spend the night. I just love to be with them,and now with this pain,just holding the 3 mo. old makes me feel better. It calms me! I get mad more than usual,because of frustration. NOT being able to do things as before. Buttoning a shirt or pants. Pouring the coffee,picking up the milk. Things that are nothing to most people. I just get so mad,and kick myself of ever having surgery. So I do hope that you get better or should I say feel better. Just think though,having a baby will be alot more work,but think about how good they smell,how much they need you and probably always will, how is feels to hold them and how much they love YOU and NO ONE AS MUCH AS MOM. Good Luck to you Tonia, Write to me personally if you want! Take Care, Love,Susie

Tonia wrote: