I have a decision to make

Reflex Sympathetic Dystrophy Syndrome
#1

Since nothing has worked so far; I am now scheduled for a Lumbar Sympathetic Block to be preformed on December 19th. He says if this one works he will continue with them. My concern is I have already had 28 trigger injections every 2 weeks or less. I am currently on morphine patches and other oral narcotics. I started with dizziness and black outs around the 26th of November. My primary physician now has me scheduled with 5 other doctors for numerous things. He thinks I may have had a light stroke and since I had a mild heart attack August 2004, he is having me see a heart doctor. Since I have already had a heart attack and he thinks I’ve possibly had a stroke, before being diagnosed with surgical RSD I have been under the care for Acute Anxiety Disorder and Bipolar also medicated for these symptons, it scares the hell out of me to be injected in my spine with another medication. I am filled to the brim with medications and now being injected with something else in my spine.
All of this is too much. What else are they going to put in my body?
This is suppose to help with the pain. NOTHING has helped this kind of pain yet. And of course the pain is intolerable.
I don’t know whether to have this done. They will also be putting me to sleep. Maybe I won’t wake up.
Any help here? I could sure use it. Running out of time.

Thank you all,
Georgia Girl /aka Arkansas Girl with RSD

#2

wow u ahve been through alot but form what i heard u are not supossed to ahve an spinal things done cause it can make the rsd go body wide cause my mom has been through alot also everyhtin she has been throughin some ways she saved me form considering i had it for years before she did and now she has been through hell so well likei said as far as i know anything to do with the spine or anything liek that can make it alot worse they told my mom not to have spinal taps and well that’s putting a needle in ur spine to so well i hope u get feeling better if u ever need a friend i know we are not close in liveing by each other but i am always here if u need a friend let me know plus if u haven’t looked there is a website called rsdhope.com and it has tons of stuff on what u can do and everything

#3

Hello:

I too have RSD in my left shoulder. I couldn’t go to a fund raiser 5K run I
have been waiting for three months because of the severe pain. I can’t drive
a car, cut my own meat and sometime just showering is out of the question. I
got two hours sleep yesterday the pain was so untolerable. I know how you
feel. Can the doctors possibly prescribe one more pill or shot? The burning
pain is exhausting and somedays I feel trapped in my own body. I try to
remember I have a disorder in the RSD that currently is a mystery to modern
medicine and the doctors are doing the best they can with what they have to work
with. Research and trianing is desperately needed. I saw three docs. before I
fainted and was properly diagnosed.

I have had the symp. nerve block shot. It didn’t work for me, but it didn’t
hurt to try. It might give you some measure of relief. Trust your doctors
and have faith in your own spirit. Try to remember, your spirit shines for
your friends and family even through the pain.

Be strong, cry when you need to and laugh often at the silly things.

You are in my prayers,

Sarita

**************************************Check out AOL’s list of 2007’s hottest
products.
(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

#4

sarita, my dad has lived with it for many years, he has tried everything as well, I also met a woman recemtly that has it as well…I will find more answers for you soon, until then hang in there is hope…blessings to you Sunni

Sarita rsds-cpt6997@lists.careplace.com wrote:

#5

My dad asked me to pass on to you sometimes you domt want to libve for your self its sopainful, but you want to live for others that are close toyou and try to block it out of your mind, beware of all the torture tretments…where is the pain? there are stages of this illness 4 stages…you tow are going through the worst now, no one likes medications and injections…

Sarita rsds-cpt6997@lists.careplace.com wrote:

#6

my dad has this as well, do you have a pain doctor? alot if them dont know about RSD, they have a radio frequency thermal coagulation injection theyw ill go into the lumbar its painless its just annoying, one of them worked for my dad for 2 years in his c spine…they put you on x ray machine lay flat on face go in find thenerves that have pain, and they heat inject it, its not as painful as the pain that your living with…my dads 1 st ones lasted acuple of weeks then his next one lasted 2years, you feel like youve been healed and its gone, but its not…it works a while…go in with a smile come out with a smile you get so used to pain, let us know how you do…your in my prayers

georgia girl rsds-cpt6997@lists.careplace.com wrote:

#7

I would like to pass on the name of a very good doctor, who is familiar with RSD,TOS, etc… His name is Dr. Sheldon E. Jordan.

I was ref to Dr. Jordan by my neurologist back in July of this year.

Dr. Jordan is with the ‘Neurological Associates of WLA’, I believe WLA stands for West Los Angeles.

Dr. Jordan is based in Santa Monica, Ca. I am aware that many of his patients travel from afar to see him.

The address and phone number is as follows:

Neurological Associates of WLA
2811 Wilshire Blvd., Suite #790
Santa Monica, Ca. 90403
ph: (310) 453-3685

When I had my consult with Dr. Jordan, he was very understanding and compassionate. The consult was not 5, 10 or 15 minutes. The consult was almost a good solid hour.

He had many, many questions. Therefore, being thorough.
I was truly impressed that he took the time to give me a thorough exam, not only by asking questions, but also verifying with special med equipment.
Dr. Jordan used IR thermography, to verify that my left side is cooler than my right side (2 degrees), which is abnormal.

Also, many Universities conduct special research. I.E…Univ of San Francisco, University of Davis, UCLA, Univ of Irvine,…

Get in touch with the Neuro Dept., and ask if you could speak to one of the medical directors and find out if there is a program on the Univ., and if not, perhaps you can then be ref to someone else.

Good Luck,

M

#8

Georgia Girl, I understand your frustration! I have had a total of 12 lumbar blocks and unfortunately they have not worked for me as far as the pain. But these shots did help with the swelling and discoloration that I was experiencing. Everyone is different and maybe the shots will work for you. I too was put to sleep with my last 3 shots and things went just fine. Unfortunately, none of us can help you make this decision, but I can give you this advice- give it to God and he will take care of it for you!! Good Luck, and keep us posted.

#9

Dont let yourself get down,the blocks work well,and it is a good idea to
continue with them in the future. They really do help,ask for a different
heart med then clonidine,it lowers the blood pressure by 30 points,and
that is a lot. I take propanolol instead, as i had blackouts on clonidine,i
also take buspar,that helps,and ms contin. These meds just get me back to
normal,and help me fight off the pain and other things rsd throws at us.
God Bless You,and FIGHT!!!

On Dec 3, 2007 10:52 PM, georgia girl rsds-cpt6997@lists.careplace.com
wrote:

#10

GeorgiaGirl,
I went through treatments with a doctor that claims to be a pain specialist and was not truly one.
I now have the only true pain specialist in the Texas Panhandle treating me. He also did a very thorough exam the first time I saw him. He was with me an hour and a half. I explained to him my reluctancy to what he could offer and he explained to me why he is so different from the other doctor I had gone to previously. My new doctor actually writes the exams for the state certification in the specialty of pain management.
I had my first sympathetic ganglion nerve block by him on 11/19/07 and had a small amount of pain relief. I went from being at an 8 all of the time down to a 7 for about four days. I had decreased swelling and discoloration for almost three days.
I will have another sympathetic ganglion block on the thirteenth of this month with him. I was not sedated the first time. I had him give me a local instead. He was very patient with me if the pressure and discomfort became too much for me. I truly believe that he is the most knowledgeable doctor here on RSD and CRPS.
Keep your mind busy on things other than your pain. I know how hard it is but it is our best defense.

Lori

#11

Hey i had 3 blocks and then i recently found out that i have type II which means i have independent sympathich which you have dependent which is why it worked for you and not me. I have the hardest type to put into remission and i have been to Emory hospital two times and i go again this month and they will decide when to do the brain surgery it is my only option besides going to mexico and be put into a coma.

-------------- Original message from LRenfroe rsds-cpt6997@lists.careplace.com: --------------

#12

Hey i had 3 blocks and then i recently found out that i have type II which means i have independent sympathich which you have dependent which is why it worked for you and not me. I have the hardest type to put into remission and i have been to Emory hospital two times and i go again this month and they will decide when to do the brain surgery it is my only option besides going to mexico and be put into a coma.

-------------- Original message from chelwig75 rsds-cpt6997@lists.careplace.com: --------------

#13

Hey i had 3 blocks and then i recently found out that i have type II which means i have independent sympathich which you have dependent which is why it worked for you and not me. I have the hardest type to put into remission and i have been to Emory hospital two times and i go again this month and they will decide when to do the brain surgery it is my only option besides going to mexico and be put into a coma.
you are so right God is in control and it is in his hands and it always will be.

-------------- Original message from Lashawn rsds-cpt6997@lists.careplace.com: --------------

#14

Hey i had 3 blocks and then i recently found out that i have type II which means i have independent sympathich which you have dependent which is why it worked for you and not me. I have the hardest type to put into remission and i have been to Emory hospital two times and i go again this month and they will decide when to do the brain surgery it is my only option besides going to mexico and be put into a coma.
i tried the nerve stimulator and it had me in convulsions and having seziures Finally Emory found out i have a movement disorder on top of my RSD so its harder to do things with me because of that.

-------------- Original message from sunni rsds-cpt6997@lists.careplace.com: --------------

#15

It started in my left foot and now has moved to up to my knee also and now it is in my spine so i can’t walk and have been in a wheelchair for going on 7 1/2 months and counting. I am going to Emory to have brain surgery to see if that helps its that or go to mexico and be put into a coma but thats all that the can do for me. Since i have type II which means mine is independent which many are dependent.

-------------- Original message from sunni rsds-cpt6997@lists.careplace.com: --------------

#16

Hey i had 3 blocks and then i recently found out that i have type II which means i have independent sympathich which you have dependent which is why it worked for you and not me. I have the hardest type to put into remission and i have been to Emory hospital two times and i go again this month and they will decide when to do the brain surgery it is my only option besides going to mexico and be put into a coma.
i tried the nerve stimulator and it had me in convulsions and having seziures Finally Emory found out i have a movement disorder on top of my RSD so its harder to do things with me because of that.

-------------- Original message from Sarita rsds-cpt6997@lists.careplace.com: --------------

#17

Hey i had 3 blocks and then i recently found out that i have type II which means i have independent sympathich which you have dependent which is why it worked for you and not me. I have the hardest type to put into remission and i have been to Emory hospital two times and i go again this month and they will decide when to do the brain surgery it is my only option besides going to mexico and be put into a coma.
i tried the nerve stimulator and it had me in convulsions and having seziures Finally Emory found out i have a movement disorder on top of my RSD so its harder to do things with me because of that.

-------------- Original message from stewielover66 rsds-cpt6997@lists.careplace.com: --------------

#18

what on earth can they do to the brain? dont do it? its all neurology and orthapedic, my dad said he wouldnt let them touc it

whitney c rsds-cpt6997@lists.careplace.com wrote:

#19

Hello, my dad doesnt currently have a computer, so I share with him all the RSD stuff…he has so much to say, he isin the last stage I belive there are 4 stages, I will talk to him in the am and tell him what you said,and see what he has to say in hopes to help you…

whitney c rsds-cpt6997@lists.careplace.com wrote:

#20

where are you located? have you gone to consults in pain management? they are the only ones who can help, neurology only wants to cut on you say no…explin you have this rsd…they will take it from there, call Dr. Donald Bacon in San antonio Tx, dont let them cut on you anywhere you need thje ritemdication and dent testing, deopending on where your elment is located then you have to consider radio frequency thermal coagulation, feel free to call me anytime…830-227-5502 my name is Bill…I can help youin anyway I can…keepyour faith…im not qualified I am one of you, Ive suffered since 1973 im in the last stage and not dead yet, no cuts onme, I did injections , I dont do exploratory anything…I hope to help you the best I can…

whitney c rsds-cpt6997@lists.careplace.com wrote: