[Gunner1960]

Injured in a fall in 1986 - finally diagnosed with Right side TOS in 1988, went bilateral in early 1989.

Had rib resection in 1988(June I think) worked for about 3 months....went back to even more severe and bilateral at that time.

Retired for medical in July 1990.

Treated by VA ever since.

Been an interesting road.

"You have TOS."
"You don't have TOS."
"You might have TOS."
"You may have had TOS."

Anyway...to sum it up...a LOT of tests later and over 20 years....

I have:

TOS(Bilateral Neuro/Vascular)
Fibro
Arthritis(L5-S1)

Constant pain body wide and no options left. The VA was talking surgery on elbow/wrist such as is done for Carpal Tunnel and Tennis Elbow....not interested.

Now for a question.

Has anyone had Nerve Root injections(I think thats what it's called)?
I am going for eval in early Dec and am trying to get an idea of the effectiveness of it before committing to anything. I also go tomorrow for eval for TENS unit and will actually get trained this time. Used one before but quit working after I left the hospital, probably because I didn't have a trained medical person to apply the leads where they would actually work.

Wife is now a Licensed Massage Practitioner in Washington State and will be able to help...just don't have a unit to use.

If anyone on here has any info on the injections and effectiveness I would greatly appreciate it.

Thanks

[ewizabeth]

Welcome to NeuroTalk. This is a great community with lots of nice folks. I don't have experience with TOS but others should be along to share their experiences.

I'm sorry for all the pain you're going through. Take care.

[(Broken Wings)]

Welcome fellow TOSer

That might be a nerve block injection. I haven't had that one, but I've others. Some help, some don't. unfortunately you just have to try to see.

So sorry for your journey. 20 years, you're the veteran for the day, I think. I'm going on 10. there's some 11, but I think you may be the longest suffer.

Don't take the confussion personal. TOS is as hard for providers to treat as it is for us to find treatment. so sorry we have to deal with any of it, but we do.

There's lots of info here about TOS. Lots of caring people here too. We understand.

You're at the right place, so make yourself familiar with NT and you'll finds lots of stuff to maybe help your symptoms.

See ya around the board
(Broken Wings)

Originally Posted by Gunner1960

Injured in a fall in 1986 - finally diagnosed with Right side TOS in 1988, went bilateral in early 1989.

Had rib resection in 1988(June I think) worked for about 3 months....went back to even more severe and bilateral at that time.

Retired for medical in July 1990.

Treated by VA ever since.

Been an interesting road.

"You have TOS."
"You don't have TOS."
"You might have TOS."
"You may have had TOS."

Anyway...to sum it up...a LOT of tests later and over 20 years....

I have:

TOS(Bilateral Neuro/Vascular)
Fibro
Arthritis(L5-S1)

Constant pain body wide and no options left. The VA was talking surgery on elbow/wrist such as is done for Carpal Tunnel and Tennis Elbow....not interested.

Now for a question.

Has anyone had Nerve Root injections(I think thats what it's called)?
I am going for eval in early Dec and am trying to get an idea of the effectiveness of it before committing to anything. I also go tomorrow for eval for TENS unit and will actually get trained this time. Used one before but quit working after I left the hospital, probably because I didn't have a trained medical person to apply the leads where they would actually work.

Wife is now a Licensed Massage Practitioner in Washington State and will be able to help...just don't have a unit to use.

If anyone on here has any info on the injections and effectiveness I would greatly appreciate it.

Thanks

[astern]

Hi Gunner, welcome to the Forum! You have many years of experience in this battle, so I hope you will share what you know with us all.

You mentioned the Nerve Root: I'm not sure, but I kind of dont think that they would block a nreve at the root. I do know that they use an EMG test to diagnose the rate of speed that a nerve will pass a signal - in our case, from the C8 nerve root, to the hands/fingers. A slowed signal confirms the damage done to the nerve. Do you think they might have been referring to this test?

I have had a nerve 'block' done on my left pec minor, to see if the pec minor release would be beneficial to me. It didnt hurt and it did give me relief for many weeks. In fact, the next day I had bi-lateral pec minor disinsertion done and the left side (nerve blocked) took it like a champ! The right side was angry for over a year.

I would imagine if your Dr did mean a nerve root block, that your pain must be severe enough to risk any mishaps... so close to the spine and major nerve trunks. ??? Please share when you get more info. from your Dr.!

Hang in there, you are in good company.

Anne

[tied]

as i understand it a nerve block is diagnostic as well as therapeutic, but the relief may be only temporary, and right after the pain is worse before getting better. i had one once. the doctor says he could repeat and cauterize the nerve ending providing 6 months relief if he is in the right spot. it all seems so unscientific to me.

[finz]

Welcome to NT !

Do you get free massages every day ?

[tshadow]

Hi and welcome.

I didin't find the TENS unit helpful at all.

I do find that taking a creme, and then taking SOMA and crushing it by a coffee grinder and mixing it in the creme, then gently having that rubbed in and smoothing my muscles and cramped up muscles (I call them eggs) that that helps. Ice sometimes helps, as does occasionally warm. A light 95% jacuzzi works.

I MUST be on a managed pain treatment including Fentanyl patches, other pain medications by mouth, sleep medication, thyroid and also diabetes II due to some early neuro meds. I need a nurse 4 days a week and my fiance to handle all of my bills.

I will never be cured and will probably never return to work or have a "fun" lifestyle, and I have been counseled by hospice on how to accept this illness. Most of my friends and family cannot accept my illness, although someone else just got it, so at least they know they had better watch out by how much time they spend on a computer...I felt very bad about it.

I have one job - to try to walk once each day, even if for ten minutes. Sometimes I can't do it for weeks, but then I'll go a couple of months ok. The pain is cyclical, and I have neuro TOS, RSD and occasionally they say fibro.

[Jomar]

Originally Posted by Gunner1960

Injured in a fall in 1986 - finally diagnosed with Right side TOS in 1988, went bilateral in early 1989.

Had rib resection in 1988(June I think) worked for about 3 months....went back to even more severe and bilateral at that time.

Retired for medical in July 1990.

Treated by VA ever since.

Been an interesting road.

"You have TOS."
"You don't have TOS."
"You might have TOS."
"You may have had TOS."

Anyway...to sum it up...a LOT of tests later and over 20 years....

I have:

TOS(Bilateral Neuro/Vascular)
Fibro
Arthritis(L5-S1)

Constant pain body wide and no options left. The VA was talking surgery on elbow/wrist such as is done for Carpal Tunnel and Tennis Elbow....not interested.

Now for a question.

Has anyone had Nerve Root injections(I think thats what it's called)?
I am going for eval in early Dec and am trying to get an idea of the effectiveness of it before committing to anything. I also go tomorrow for eval for TENS unit and will actually get trained this time. Used one before but quit working after I left the hospital, probably because I didn't have a trained medical person to apply the leads where they would actually work.

Wife is now a Licensed Massage Practitioner in Washington State and will be able to help...just don't have a unit to use.

If anyone on here has any info on the injections and effectiveness I would greatly appreciate it.

Thanks

If you can get a IF stim, {Interferential Stimulation} or an eval to see which will work best for you..
Depends on what your main pain is caused by - nerves vs muscles
this page gives a brief comparison of stims -
\http://vitalityweb.com/backstore/Muscle-Stimulator.htm

[fern]

Hi Gunner.

I too have a long history of neck issues, TOS, and also Fibro.
I've had a number of spinal injections for my neck including Nerve Root Blocks. These are different from a traditional epidural. I think it's worth a try; it just may help but it may flare you for a few weeks first, you just don't know. For me they helped but were not long lasting. One was done before a neck surgery partially as a diagnostic.
btw-Spine Universe is a good place to read up on these as well as to get other ideas. http://www.spineuniverse.com/

I have used a TENS unit. For a good while it was helpful but then not. Everyone is different. I think it's a good attitude to find what combination of things work for you. The recipe that works today will be different from what helps later on.

It's not uncommon for people to have both TOS and neck issues. You can read about this "sequilla" in Dr Sanders book or possibly in an article online. Dr Sanders was/is? a TOS surgeon practicing in Denver.
http://www.ecentral.com/members/rsanders/

I use Peter Edgelow's exercises and also Sharon Butlers. I spend time in warm water doing a combination of things. I especially like Ai-Chi for the TOS. For my neck, I wear flotation filled with weights around my ankles to help lengthen my spine. Also just laying on my back in a warm pool helps relax my tight muscles. I have learned to limit things that bother and ultimately flare me like driving, cooking, keyboarding. It's been a long road but I think that paying attention to my body has been the greatest help. I think that doing Feldenkreis work has been great training in this regard. I'm not sure where in WA state you are but you may find that there are many things you that you can try in your area.

If it was me I'd look for a pain anesthesiologist or a physiatrist that was really up to speed. I know that there are other devices that look like a TENS unit that are being used for pain now. The TENS masks the pain if it's successful but does not treat the body. You may be able to try alternatives in a PT office. As far as the spine injections go, I would only let a very very experienced doctor do these. I know that there are some good ones in WA.

Good luck and feel free to PM me if you desire.

fern

[fern]

Originally Posted by fern

Hi Gunner.
If it was me I'd look for a pain anesthesiologist or a physiatrist that was really up to speed.
fern

Just to be clear I recommended a pain anesthesiologist or skilled physiatrist for someone to provide or lead you to a well suited provider for spinal injectjions like the nerve-root-block, not for a surgical eval for your TOS. They can help you determine what might work best for you. One possibility is the radio-frequency ablation that "tied" mentioned. In addition to ablation they can even freeze the nerve endings to see if it relieves your pain temporarily.

Here's another website where you can learn about the nerve root block and other injections Dr Derby offers.
http://www.spinaldiagnostics.com/sdx...rocedures3.asp