Making progress again (and how)
 

I had minor TOS symptoms for years, but didn't know what was going on. Then it flared up hard in early July which is what lead me to learning about it. I made progress through self therapy (Egoscue books and misc stretches), chiro and other things, but by mid-October my progress had plateaued. You can easily imagine how disappointing that was! :(

But I'm now making progress again and thought I would share what's helping:

1) PT with Joyce Wilkinson (http://pogsonpt.com/contactinfo.html)

I'll post about Joyce in a separate thread.

2) Break reminder software for the computer. I had lost my discipline regarding breaks and this got me doing the right thing again.

The default was 50 mins of work + 10 min break, but I found that by 50 mins I already felt stagnant in my circulation and energy. I tweaked it down to 45 mins and that worked. I then tweaked the break to 11 mins so I can get in a little more self therapy.

In addition to stretches, I always include pacing in the break for the circulation benefits.

The very first day, even on 50+10, I noticed that my overall energy level came up. Always a good thing. :)

Thanks to Jo*mar for posting about this earlier which is what stimulated me to try it.

You can search google for "mac break reminder" or "pc break reminder" to find such software. I may get something for my smartphone as well so I can benefit in other situations.

3) Diazepam 2.5mg or 5mg as needed. These stop my muscle spasms and neck tension. I probably use it about 4 X per week.

... That's pretty much it. I also saw Dr. Gelabert at UCLA who confirmed TOS and referred me to Joyce.

I also have some other issues on top of, or related to TOS that I may post about later.

I still have problems and symptoms, but less severe than before. I'm $working more too.

I hope these notes help someone.

Chroma: I would wager money your progress is being made by Diazepam. Is it true progress or the effectiveness of the medication? IMO, Diazepam is the miracle drug for TOS, but it comes with serious potential Benzo problems.

It can be used through therapy to make progress though.

I would wager on all 3.

When I walked out of my first PT session with Joyce, I could breath more into my left lung which was in interesting sensation. Prior to the session, I didn't even know that my lower left ribs were restricted, although she was able to easily demonstrate that to me during our session.

Re: the break reminder software, it clearly has me getting out of the chair more to improve circulation and posture. I could feel the difference on day 1.

And yes, diazepam is helping too which is why I included it. The first time, my reaction was "hellz yeah, this is what my neck is supposed to feel like--relaxed and natural".

What's a "Benzo problem"? Have you experienced problems with diazepam?

I'm aware that drugs can have tolerance problems which is why I try to skip it 3 days a week.

In my experience, it is beneficial when used in conjunction with physical therapy. There seems to be better mobility of tissues and longer lasting results from the therapy itself. Unlike other muscles relaxants (ie Robaxin, Skelaxin, Flexeril, etc.), they know how Diazepam precisely works on the brain. For TOS, I feel it not only provides a muscle relaxant property, but diminishes neuro pain. It also has a longer life than other Benzo derivatives, which can enable you to skip a dose and you're not curled up in a corner in the fetal position shaking.

I've been on Diazepam for 2 years. I have never built up a tolerance and have only decreased my dosage with the help of manual physical therapy. Serious Benzo problems come as there are idiot Doctors our there who do not know or fail to inform their patients you can't stop this medication cold turkey. It can be life threatening! Telling you to taper down slowly is not enough either. Your idea of slow vs the drugs idea of slow may be two different things. Due to being a long life drug, you may feel fine after tapering and stopping, but withdrawals may come weeks later.

I was placed on Diazepam without full disclosure and knowledge of the drug. In retrospect, I wish I had more information about the drug to have made a more informed decision, but the reward for me has been greater than the risk. It sounds to be beneficial to you as well with physical therapy. Best of luck in your continuing progress.

Thanks for the information. Are you on it daily then? If so, have you had trouble with diminishing effectiveness? Do you mind me asking what your dose is?

Do you think my using it 4 X per week instead of 7 X will be problematic?

I agree on the double benefit by the way: muscles are looser and pain is diminished.

Great tips Chroma. I don't know if you've done this before but can you go over what you do during your break, i.e. what stretches, etc? Also, how do you like Dr. Gelabert and is he suggesting that you maintain your current course of action?

Is clonopin similar enough to produce the same benefits

Klonopin is stronger I believe. All benzos carry risk of addiction, dependency, and side effects. Sounds like you're taking as needed Chroma, and with any luck that will be less and less.

I used to do:
* Egoscue books (which includes a couple yoga stretches like cat and cow)
* neck stretches
* and a few other select stretches like foam roller pec
* sitting meditation with arms supported on huge foam blocks (to reduce compression under the clavicles)

And I used to do most of that in the morning, taking 90 - 120 mins. Now two things have changed:

1) I focus on the exercises prescribed to me in PT
2) I do only 30 mins in the morning and then during the breaks

The thing about the PT stuff is that it's specific. If you're tight in the ribs, you'll get a rib stretch, but if instead you have a shoulder problem, you'll get something for that.

See also http://neurotalk.psychcentral.com/post802248-72.html

I like Dr. Gelabert. Unfortunately, I underestimated LA rush hour traffic and was way late to the appointment. I still got to spend some time with him. His next steps for me were PT and to see a neurologist for the symptoms he thought were non-TOS. That was just a couple weeks ago, so it would be early to go back.

For those extra symptoms, which included problems with dizziness, eye twitches and miscellaneous ear complaints, when I plugged them into google, I kept hitting person after person complaining of TMJ. I then closed my eyes and open and closed my mouth and sure enough, I could hear funny noises in my left jaw joint. I decided to see a TMJ specialist (Nov 21). I haven't ruled out seeing a neurologist, but I haven't made the appointment yet either.

I also get noises and sensations in my top two vertebra when I move my head around. I have received the following comments:
* Chiro has diagnosed me with head/neck misalignment
* PT has noted tension and tightness there. Thinks the dura could be be bunched up there from forward head posture
* Vascular MD has noted symptoms that he thinks are neuro

So putting it all together, I think I have:
* TOS
* TMJ
* Upper cervical injury from RSI+posture (http://www.upcspine.com/self.htm)

Which would explain why I'm so messed up. :)

It would also match up with my observation that the problem cases in this forum seem to always have TOS plus something else.

Btw if you need a good chiro in the LA area who takes time to listen to you, examine you and treat you, I recommend Dr. Paul Methot. He practices both in Larchmont Village and Fullerton (I think).

Finally, I wish I had seen Dr. Gelabert and Joyce Wilkinson earlier, and not been late to my appointment.

Chroma: I don't mind you asking at all. Currently, I take 4mg/per day, two in the morning and two in the evening.

When I was first prescribed Diazepam, it was dosed at 10mg/per day and I was told to do nothing physical as all the nerves needed to calm down. Furthermore, I was also told to get no hands-on therapy as it would flare me and only do deep breathing and very limited self-care PT. As the months ticked by and I spiraled down into the back hole of the TOS abyss, my original thought was I was growing tolerance to the Diazepam. This plan was not working and I needed to find a new one soon!

I threw Plan A from the "experts" to the wayside and I started getting hands-on therapy about 1 1/2 years ago. About 4 months or so into it, I found I could easily drop to 6mg and my function stayed the same or increased. This summer I dropped to 4mg and my function increased again. The hands-on therapy allowed me to decrease the medication with a controlled taper down, and my new goal is to get to 2mg in another 6-8 months (fingers crossed).

I can't tell you if it will be problematic for you as chemicals all effect us differently. Dosage and duration of time on the medication all play a role and you can Google till your numb on the ins and outs of Benzos. I found the Ashton Benzo manual informative. Hopefully, you will naturally taper through the benefits of a good PT program.

MsPenny: Klonopin is a Benzo as well. It's not as long lasting as Valium and from my reading withdrawals can be more intense as they rear their head quicker. In fact, Valium is sometimes used to help withdraw patients from shorter half life Benzos. There are Benzo equivalency charts online (Ashton has one) that can tell you how many mg of Klonopin equal mg of Valium, etc.

At the end of the day, I have something anatomically wrong with me that is not going away any time soon. In the meantime, I need to have a little quality of life. The doctors handed me the pills and never told me the ramifications of being on the medication for an extended period. I read and educated myself online. Why is this always the case? :rolleyes:

Dr. Internet, MD

By "earlier", I mean earlier in the process of getting treated for TOS. Just wanted to clarify.

thanks all

ive been takin clonopin sometimes for sleep but maybe ill ask for valium

does anyone know if a rib stretch MAJORLY flares you up, what does that mean?

i like ice. my first pt had me lay on a heated thing and it just felt wrong to me

chin tucks are working well with me, theyre completely exhausting tho

What are they doing for you? Which youtube chin tuck video matches what you're doing?

i used to have a good link i gotta find it

http://www.physio-pedia.com/index.ph...ation_Protocol

im wondering if my shoulders hangin off my sides are making this even harder. its really really exhuasting

Btw I also settled on 2mg, 2 X per day, for the diazepam. This worked better for me than taking it intermittently which often meant after a flare up had already started.

Chroma, I have been suffering and doctoring for TOS for many years. First on the left side and now the right. The right side is worse because the TOS is arterial and causes me a lot of pain, swelling and fear. Due to past surgical complications I am not eager to go for surgery yet. I now see a vascular surgeon who says it is only a matter of time before I will end up in surgery (we will see).

I wanted to paste this little portion of Dr. Ellis Wladislaw's website which you might want to look at. I have used several of his recommendations and they have helped a little. Anyway this section was found under the Treatment tab:

..."Pharmaceuticals, unfortunately, are of minimal-to-moderate help. When appropriate, diazepam (more so than its congeners) helps in reducing the irritability and attendant trapezial and scalene muscle spasm. Other muscle relaxants, such as Flexoril or Soma, can be of benefit as well. Opiates are usually of minimal benefit and have obvious problems in select individuals. Antiepileptics and vasoactive agents play an even lesser role but can often be effective, again in select individuals."

Diazepam is the only med that has given be a little bit of relief at times. It was interesting to read it has helped you as well.

Thanks for chiming in.

As I also get relief from shoving my first rib down but then experience it come back up, I end up wondering if the root cause of my TOS is muscle tension. Something has to pull the rib up and that's the muscles. Which would be the two scalenes (http://en.wikipedia.org/wiki/File:Gray124.png). Which would explain why some people get relief from botox and/or removal on the scalenes; or from diazepam relaxing the muscles.

Not that there aren't other causes. Some people have cervicle ribs, auto accidents, etc. But I've already had my xrays.

I'm thinking I need:
-- more scalene stretches
-- followed by first rib adjustment
-- more meditation

Maybe also find a masseuse who can work over those scalenes good.

Hi Chroma and Anne,
I have been interested in valium for awhile but reading about the amnesia problems of benzos concerns me. Are you guys having any amnesia probs? What are the side effects like? Any info is much appreciated.

Thanks

Chroma, tell me again what your imaging said--? I had no clue you could move ribs until reading some of your posts. Hmmm!

I can't recall if I have had problems with amnesia.

Bwahahaha! I couldn't resist.

I develop software for a living which requires some mental acrobatics and I'm doing great. The biggest thing that ever caused me mental issues was the TOS and neck tension which would leave me feeling dizzy / light-headed.

Diazepam does make me feel a little spacey. Recently I'm trying to use it just at night so that I can focus better in the morning. The good results I'm getting from the stretch+rib adjustment as well as other kinds of progress has made me feel like I can try this.

I would be interested to know at what threshold of dosage the literature says that benzos can cause amnesia or any other problems. I was only doing 2 mg 2 X per day.

In a nutshell, on that dosage, I didn't notice any concerning effects.

My xrays are basically normal. I've had 3 chiros and 1 vascular surgeon look at the xrays and none them found a smoking gun or had any major concerns. So no cervical ribs or deformations.

One of the chiros really stared hard at my TOS side in the xray and thought I had minor hints of things like elongated transverse process, or whatever it is. He could have been right or he could have been seeing what he was looking for. Even so, he wasn't concerned.

I believe my problem sources are:

-- muscle tension (improved now)
-- stress (improved now)
-- posture (pretty much fixed now)
-- hypertrophied upper traps (not improved)
-- And then the negative feedback loops that kick in. I mean once your circulation goes to hell and/or pain sets in, you get more stressed and more tension. You could even get more muscle tension from reduced circulation, in my experience.

Until I learned about TOS last year, I didn't know I had a rib in my neck! :)

The movement is minor. Like millimeters, but the blood vessels are small, so uncompressing a couple of millimeters could mean a major % increase in blood flow over the baseline of when the vessel is compressed.

Something I read pointed out that all of your blood vessels and nerves are softer than all of your muscles, tendons, ligaments and bones. Therefore, we see these problems with neurovascular compression.

Anyway, search google and youtube for "first rib adjustment" and you'll at least find the active adjustments done by PTs, chiros and osteopaths. With some digging you should find some of the self adjustment ones. Interesting stuff.

At the bottom of this page is a technique to mobilize the rib:

http://www.nismat.org/ptcor/thoracic_outlet

Which then also provides another search term.