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Hi gang,

Just got back from a trip to Denver to see my TOS surgeon, had several appts

there with assorted Drs, then to PA to see Dr Togut, also TOS Dr, he does

strictly dx and treatment, and Dr Scwartzman in Philly. The neurologist in

Denver and Dr Scwartzman both agreed my problems are due to the vaccine

reaction, and that I have CRPS-2. Guess it was wishful thinking on my part

(and stupid Drs) to think that I didn't have it after all when Dr Annest

found and removed an extra muscle growing all over the stellate ganglion and

the worst pain in my hand went away.

It's now been over 20 months since the vaccine that started this mess, and

no real treatment for the CRPS except a few stellate ganglion blocks over a

year ago and some desensitization, also almost a year ago. The blocks

lasted 24-48 hrs but didn't get any longer with the third, it was actually

shorter, probably because of that extra muscle, I'm guessing.

After I had the rib removed in January, my local Drs told me I should be all

better, and if I was still having pain it must be in my head. They wanted

me off all meds against the advice of my TOS Drs, and told me I wd have to

choose who was going to treat me, them(local) or my TOS Drs(900 miles away).

That's when I started looking around for a new pain management Dr, it took

me til May to find one and couldn't get in to see her til July. She is a

physiatrist, and very good, she actually gets things done quickly, orders

tests and they're scheduled within a week or two, talks with my specialists

and follows their advice, believes my dx's and pain level and has no problem

rx'ing appropriate pain meds. I am SO glad I found her, as the other Drs

were almost successful at making me lose it - that's what caused the

horrible depression I had in August when I almost admitted myself, I was so

scared! At the end of August I finally got a new EMG I had been trying to

get all summer, thanks to my new Dr - my PCP had ordered one with a

neurologist in his own med group that took 2 months to get done, the test

was to check for carpal and cubital tunnel and that neurologist didn't even

record a measurement across the wrist into the palm! I think that whole med

group was trying to convince me I didn't have a vaccine injury, and they

weren't going to offer any treatment that wd be an admission of it, they

just wanted me to go away. My new Dr had her colleague do the EMG (waited

less than a week!) and the results showed chronic denervation of the medial

cord - my problems weren't at the wrist or elbow but the nerves were still

being compressed higher up and referring the pain below, and several muscles

were atrophying as a result, especially in the right hand. She referred me

back to Denver, and after seeing several Drs, all agreed the pec minor

muscle was responsible for the nerve compression, and I had surgery to have

the pec minor detached from the top of the scapula. It has relieved a lot

of the pain in my arm and given me back some feeling in the fingers, only

time will tell if I get any of the strength back.

Dr Togut is a great Dr, and a colleague of Dr Schwartzman's. I called him

when I got the EMG results and told him I felt there was more going on than

just TOS, that I am doing everything that the Drs have suggested to get

better but I keep getting worse. And I have pain and numbness in my

legs/feet as well, ache all over and feel like I have chronic fatigue - like

my whole system is being affected. I asked abt seeing Dr Schwartzman and he

said he wd refer me, he thought it wd be a good idea - I was shocked when

they called a week or so later and gave me an appt in a month!

Dr S. was not what I expected - he's not a big guy, very kind and

compassionate, he came out to get me from the waiting room himself! After

my history and exam, he said he had seen this before following a vaccine

reaction, and had a couple Drs he is treating for it right now. Basically,

my entire nervous system has been affected - the brachial plexus, cervical

plexus, sciatic nerve, sympathetic nervous system, central nervous system.

I guess I had what is called a hypersensitivity reaction - I already

evidently had a protective level of tetanus antibody in my system, so the

booster dose just overwhelmed my system. He feels he can help me get a lot

better, wants me to come back out and do either the ketamine or lidocaine

5-day IV infusion, not sure which he decided on but I am nervous abt the

ketamine. If the ins. won't pay for it, I can't afford it anyway, unless I

get some $ from the Vaccine Injury Compensation program - we have our first

telephone conference with the Judge later this month but it's a long way

from being over and no guarantees.

I know this is long, just wanted to update my friends and say " I'm

baaaccckkkk " !

Hi to all the new people!

beth

[Guest guest]

Welcome back Beth!!---I hope everything works out for you. Sometimes it takes a while to get situated with the right docs for you. Sounds like you are headed on the right track....Beth wrote:

Hi gang,Just got back from a trip to Denver to see my TOS surgeon, had several apptsthere with assorted Drs, then to PA to see Dr Togut, also TOS Dr, he doesstrictly dx and treatment, and Dr Scwartzman in Philly. The neurologist inDenver and Dr Scwartzman both agreed my problems are due to the vaccinereaction, and that I have CRPS-2. Guess it was wishful thinking on my part(and stupid Drs) to think that I didn't have it after all when Dr Annestfound and removed an extra muscle growing all over the stellate ganglion andthe worst pain in my hand went away.It's now been over 20 months since the vaccine that started this mess, andno real treatment for the CRPS except a few stellate ganglion blocks over ayear ago and some desensitization, also almost a year ago. The blockslasted 24-48 hrs but didn't get any

longer with the third, it was actuallyshorter, probably because of that extra muscle, I'm guessing.After I had the rib removed in January, my local Drs told me I should be allbetter, and if I was still having pain it must be in my head. They wantedme off all meds against the advice of my TOS Drs, and told me I wd have tochoose who was going to treat me, them(local) or my TOS Drs(900 miles away).That's when I started looking around for a new pain management Dr, it tookme til May to find one and couldn't get in to see her til July. She is aphysiatrist, and very good, she actually gets things done quickly, orderstests and they're scheduled within a week or two, talks with my specialistsand follows their advice, believes my dx's and pain level and has no problemrx'ing appropriate pain meds. I am SO glad I found her, as the other Drswere almost successful at making me lose it - that's what caused thehorrible depression I

had in August when I almost admitted myself, I was soscared! At the end of August I finally got a new EMG I had been trying toget all summer, thanks to my new Dr - my PCP had ordered one with aneurologist in his own med group that took 2 months to get done, the testwas to check for carpal and cubital tunnel and that neurologist didn't evenrecord a measurement across the wrist into the palm! I think that whole medgroup was trying to convince me I didn't have a vaccine injury, and theyweren't going to offer any treatment that wd be an admission of it, theyjust wanted me to go away. My new Dr had her colleague do the EMG (waitedless than a week!) and the results showed chronic denervation of the medialcord - my problems weren't at the wrist or elbow but the nerves were stillbeing compressed higher up and referring the pain below, and several muscleswere atrophying as a result, especially in the right hand. She

referred meback to Denver, and after seeing several Drs, all agreed the pec minormuscle was responsible for the nerve compression, and I had surgery to havethe pec minor detached from the top of the scapula. It has relieved a lotof the pain in my arm and given me back some feeling in the fingers, onlytime will tell if I get any of the strength back.Dr Togut is a great Dr, and a colleague of Dr Schwartzman's. I called himwhen I got the EMG results and told him I felt there was more going on thanjust TOS, that I am doing everything that the Drs have suggested to getbetter but I keep getting worse. And I have pain and numbness in mylegs/feet as well, ache all over and feel like I have chronic fatigue - likemy whole system is being affected. I asked abt seeing Dr Schwartzman and hesaid he wd refer me, he thought it wd be a good idea - I was shocked whenthey called a week or so later and gave me an appt in a

month!Dr S. was not what I expected - he's not a big guy, very kind andcompassionate, he came out to get me from the waiting room himself! Aftermy history and exam, he said he had seen this before following a vaccinereaction, and had a couple Drs he is treating for it right now. Basically,my entire nervous system has been affected - the brachial plexus, cervicalplexus, sciatic nerve, sympathetic nervous system, central nervous system.I guess I had what is called a hypersensitivity reaction - I alreadyevidently had a protective level of tetanus antibody in my system, so thebooster dose just overwhelmed my system. He feels he can help me get a lotbetter, wants me to come back out and do either the ketamine or lidocaine5-day IV infusion, not sure which he decided on but I am nervous abt theketamine. If the ins. won't pay for it, I can't afford it anyway, unless Iget some $ from the Vaccine Injury

Compensation program - we have our firsttelephone conference with the Judge later this month but it's a long wayfrom being over and no guarantees.I know this is long, just wanted to update my friends and say "I'mbaaaccckkkk"!Hi to all the new people!beth

[Guest guest]

Beth - You've been through a lot.....I'm glad to see that you're in with one of the best. I hope that whatever treatment route you decide to go that it give you terrific results. BarbaraBeth wrote:

Hi gang,Just got back from a trip to Denver to see my TOS surgeon, had several apptsthere with assorted Drs, then to PA to see Dr Togut, also TOS Dr, he doesstrictly dx and treatment, and Dr Scwartzman in Philly. The neurologist inDenver and Dr Scwartzman both agreed my problems are due to the vaccinereaction, and that I have CRPS-2. Guess it was wishful thinking on my part(and stupid Drs) to think that I didn't have it after all when Dr Annestfound and removed an extra muscle growing all over the stellate ganglion andthe worst pain in my hand went away.It's now been over 20 months since the vaccine that started this mess, andno real treatment for the CRPS except a few stellate ganglion blocks over ayear ago and some desensitization, also almost a year ago. The blockslasted 24-48 hrs but didn't get any longer with the third,

it was actuallyshorter, probably because of that extra muscle, I'm guessing.After I had the rib removed in January, my local Drs told me I should be allbetter, and if I was still having pain it must be in my head. They wantedme off all meds against the advice of my TOS Drs, and told me I wd have tochoose who was going to treat me, them(local) or my TOS Drs(900 miles away).That's when I started looking around for a new pain management Dr, it tookme til May to find one and couldn't get in to see her til July. She is aphysiatrist, and very good, she actually gets things done quickly, orderstests and they're scheduled within a week or two, talks with my specialistsand follows their advice, believes my dx's and pain level and has no problemrx'ing appropriate pain meds. I am SO glad I found her, as the other Drswere almost successful at making me lose it - that's what caused thehorrible depression I had in August when I almost

admitted myself, I was soscared! At the end of August I finally got a new EMG I had been trying toget all summer, thanks to my new Dr - my PCP had ordered one with aneurologist in his own med group that took 2 months to get done, the testwas to check for carpal and cubital tunnel and that neurologist didn't evenrecord a measurement across the wrist into the palm! I think that whole medgroup was trying to convince me I didn't have a vaccine injury, and theyweren't going to offer any treatment that wd be an admission of it, theyjust wanted me to go away. My new Dr had her colleague do the EMG (waitedless than a week!) and the results showed chronic denervation of the medialcord - my problems weren't at the wrist or elbow but the nerves were stillbeing compressed higher up and referring the pain below, and several muscleswere atrophying as a result, especially in the right hand. She referred meback to Denver, and after seeing several

Drs, all agreed the pec minormuscle was responsible for the nerve compression, and I had surgery to havethe pec minor detached from the top of the scapula. It has relieved a lotof the pain in my arm and given me back some feeling in the fingers, onlytime will tell if I get any of the strength back.Dr Togut is a great Dr, and a colleague of Dr Schwartzman's. I called himwhen I got the EMG results and told him I felt there was more going on thanjust TOS, that I am doing everything that the Drs have suggested to getbetter but I keep getting worse. And I have pain and numbness in mylegs/feet as well, ache all over and feel like I have chronic fatigue - likemy whole system is being affected. I asked abt seeing Dr Schwartzman and hesaid he wd refer me, he thought it wd be a good idea - I was shocked whenthey called a week or so later and gave me an appt in a month!Dr S. was not what I expected - he's not a big guy, very kind

andcompassionate, he came out to get me from the waiting room himself! Aftermy history and exam, he said he had seen this before following a vaccinereaction, and had a couple Drs he is treating for it right now. Basically,my entire nervous system has been affected - the brachial plexus, cervicalplexus, sciatic nerve, sympathetic nervous system, central nervous system.I guess I had what is called a hypersensitivity reaction - I alreadyevidently had a protective level of tetanus antibody in my system, so thebooster dose just overwhelmed my system. He feels he can help me get a lotbetter, wants me to come back out and do either the ketamine or lidocaine5-day IV infusion, not sure which he decided on but I am nervous abt theketamine. If the ins. won't pay for it, I can't afford it anyway, unless Iget some $ from the Vaccine Injury Compensation program - we have our firsttelephone conference with the Judge later this month but it's a

long wayfrom being over and no guarantees.I know this is long, just wanted to update my friends and say "I'mbaaaccckkkk"!Hi to all the new people!beth

[Guest guest]

Beth - You've been through a lot.....I'm glad to see that you're in with one of the best. I hope that whatever treatment route you decide to go that it give you terrific results. BarbaraBeth wrote:

Hi gang,Just got back from a trip to Denver to see my TOS surgeon, had several apptsthere with assorted Drs, then to PA to see Dr Togut, also TOS Dr, he doesstrictly dx and treatment, and Dr Scwartzman in Philly. The neurologist inDenver and Dr Scwartzman both agreed my problems are due to the vaccinereaction, and that I have CRPS-2. Guess it was wishful thinking on my part(and stupid Drs) to think that I didn't have it after all when Dr Annestfound and removed an extra muscle growing all over the stellate ganglion andthe worst pain in my hand went away.It's now been over 20 months since the vaccine that started this mess, andno real treatment for the CRPS except a few stellate ganglion blocks over ayear ago and some desensitization, also almost a year ago. The blockslasted 24-48 hrs but didn't get any longer with the third,

it was actuallyshorter, probably because of that extra muscle, I'm guessing.After I had the rib removed in January, my local Drs told me I should be allbetter, and if I was still having pain it must be in my head. They wantedme off all meds against the advice of my TOS Drs, and told me I wd have tochoose who was going to treat me, them(local) or my TOS Drs(900 miles away).That's when I started looking around for a new pain management Dr, it tookme til May to find one and couldn't get in to see her til July. She is aphysiatrist, and very good, she actually gets things done quickly, orderstests and they're scheduled within a week or two, talks with my specialistsand follows their advice, believes my dx's and pain level and has no problemrx'ing appropriate pain meds. I am SO glad I found her, as the other Drswere almost successful at making me lose it - that's what caused thehorrible depression I had in August when I almost

admitted myself, I was soscared! At the end of August I finally got a new EMG I had been trying toget all summer, thanks to my new Dr - my PCP had ordered one with aneurologist in his own med group that took 2 months to get done, the testwas to check for carpal and cubital tunnel and that neurologist didn't evenrecord a measurement across the wrist into the palm! I think that whole medgroup was trying to convince me I didn't have a vaccine injury, and theyweren't going to offer any treatment that wd be an admission of it, theyjust wanted me to go away. My new Dr had her colleague do the EMG (waitedless than a week!) and the results showed chronic denervation of the medialcord - my problems weren't at the wrist or elbow but the nerves were stillbeing compressed higher up and referring the pain below, and several muscleswere atrophying as a result, especially in the right hand. She referred meback to Denver, and after seeing several

Drs, all agreed the pec minormuscle was responsible for the nerve compression, and I had surgery to havethe pec minor detached from the top of the scapula. It has relieved a lotof the pain in my arm and given me back some feeling in the fingers, onlytime will tell if I get any of the strength back.Dr Togut is a great Dr, and a colleague of Dr Schwartzman's. I called himwhen I got the EMG results and told him I felt there was more going on thanjust TOS, that I am doing everything that the Drs have suggested to getbetter but I keep getting worse. And I have pain and numbness in mylegs/feet as well, ache all over and feel like I have chronic fatigue - likemy whole system is being affected. I asked abt seeing Dr Schwartzman and hesaid he wd refer me, he thought it wd be a good idea - I was shocked whenthey called a week or so later and gave me an appt in a month!Dr S. was not what I expected - he's not a big guy, very kind

andcompassionate, he came out to get me from the waiting room himself! Aftermy history and exam, he said he had seen this before following a vaccinereaction, and had a couple Drs he is treating for it right now. Basically,my entire nervous system has been affected - the brachial plexus, cervicalplexus, sciatic nerve, sympathetic nervous system, central nervous system.I guess I had what is called a hypersensitivity reaction - I alreadyevidently had a protective level of tetanus antibody in my system, so thebooster dose just overwhelmed my system. He feels he can help me get a lotbetter, wants me to come back out and do either the ketamine or lidocaine5-day IV infusion, not sure which he decided on but I am nervous abt theketamine. If the ins. won't pay for it, I can't afford it anyway, unless Iget some $ from the Vaccine Injury Compensation program - we have our firsttelephone conference with the Judge later this month but it's a

long wayfrom being over and no guarantees.I know this is long, just wanted to update my friends and say "I'mbaaaccckkkk"!Hi to all the new people!beth

[Guest guest]

Welcome Back Beth,

I am not sure if you and I have met my name is Lin, I live in Oregon. I am glad that you are back. Sounds like you have been rather busy going from doctors, more doctors and then more doctors. I know the feeling that when you find a doctor willing to work with you, you don't want to have to give them up.

Once again Welcome back,

Lin

[Guest guest]

Welcome Back Beth,

I am not sure if you and I have met my name is Lin, I live in Oregon. I am glad that you are back. Sounds like you have been rather busy going from doctors, more doctors and then more doctors. I know the feeling that when you find a doctor willing to work with you, you don't want to have to give them up.

Once again Welcome back,

Lin

[Guest guest]

Welcome Back Beth,

I am not sure if you and I have met my name is Lin, I live in Oregon. I am glad that you are back. Sounds like you have been rather busy going from doctors, more doctors and then more doctors. I know the feeling that when you find a doctor willing to work with you, you don't want to have to give them up.

Once again Welcome back,

Lin