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TOSPATIENT
USA
13 Posts |
 Posted - 07/13/2004 : 21:02:12
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Hi folks,
Curious if anyone is suffering, or has suffered, from Thoracic Outlet Syndrome (TOS). I've read in the TMS literature that TOS is a TMS equivalent, yet am curious how to best deal with VASCULAR TOS, which involves tightened neck muscles leaning in on the arteries and veins behind the collar bone. This results in constant lightheadedness, imbalance and fatigue, with headaches and eyelid swelling not uncommon either.
If not in the neck, I'm curious about the general nature of muscles stiffening or tightening and changing shape due to TMS anywhere on the body. Does anyone experience that? Has anyone successfully beaten tightened muscles through the Sarno method? I really want my old body back.
Your help would be greatly appreciated. |
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Wilf
Canada
53 Posts |
Posted - 07/14/2004 : 09:46:14
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I had almost exactly what you are describing. It started with tingling in my fingers that used to wake me in the middle of the night and became progressively worse to the point where I would wake up in the night in excruciating pain in the arm and hand. The Chiropractor I used to go to regularly diagnosed my problem as Thoracic Outlet Syndrome. He told me to stretch. My pain kept getting worse. I started applying Sarno's work about 2&1/2 years ago. Then, a situation in my life, over which I had no control, suddenly changed, my pain went away dramatically.
Wilf Oberthier |
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Susie
USA
319 Posts |
Posted - 07/14/2004 : 10:00:24
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| I had the arm pain, finger tingling, mouth numbness, along with backpain. The craziest head symptom was if I touched the back or top of my head, I would immediately loose my equilibrium. If I touch the back of my head now it still feels wierd but I'm not dizzy. That took a while to get over. I still get a finger twitch every once in a while, but I usually laugh or try to think of what is bothering me and it goes away. Dr. Sarno says he has seen every combination of symptoms imaginable. Just work with his theory, you will get better. |
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Sarah Jacoba
USA
81 Posts |
Posted - 07/15/2004 : 00:14:31
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I was diagnosed with TOS in 1995 and I also used to have vertigo/dizziness problems. It's all part of my larger TMS and those particular symptoms have all gone and stayed away for quite some time now
--Sarah
"When dream and day unite" |
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TOSPATIENT
USA
13 Posts |
Posted - 07/18/2004 : 11:38:08
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Thank you all so much for some very encouraging emails. Perhaps you could each relate how long it took to fully recover and what you did to recover. I will certainly re-read, and then re-read, and continue to re-read, Sarno and Amir's books to condition.
Should you wish, please feel free to contact me directly at payamiam@yahoo.com with your stories of recovery from Vascular Thoracic Outlet Syndrome (TOS).
Thanks again. |
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Sarah Jacoba
USA
81 Posts |
Posted - 07/19/2004 : 00:55:59
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TOS and dizziness were both symptoms of severe TMS in my upper body, i.e. they occurred when I was really tense/hurting/sensitive. Now that I have gotten my upper body pain on a much better level, those things have disappeared entirely. dont think of them as a separate syndrome. it's just TMS
--Sarah
"When dream and day unite" |
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TOSPATIENT
USA
13 Posts |
Posted - 08/05/2004 : 17:52:51
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My neck muscles feel permanently tightened and stiff. It is astonishing. I've had the symptoms that I do for almost three years now, and they resulted from the shock of taking one Aleve tablet without drinking water and then going to bed.
Neck muscles feel eternally stiff. I've read everything Sarno and believe it to be TMS, yet this is mindboggling. My regular journalling, reflections, exercise, socializing, diet change, visualizing, etc. do not seem to budge my neck. The scalene muscles (particularly the right one) has changed shape, and pinches my arteries while I'm upright.
Chronic, tormenting light-headedness and fatigue throughout the day, which make it very difficult not to notice and/or think about. This is stunningly cruel. |
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Dave
USA
1864 Posts |
Posted - 08/05/2004 : 18:00:40
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quote:
Originally posted by TOSPATIENT
My neck muscles feel permanently tightened and stiff ... and they resulted from the shock of taking one Aleve tablet without drinking water and then going to bed.
What do you mean by that?
The fact that you are saying things like "scalene" and "pinches my arteries" tells me you still haven't given up thinking physical. How long has it been since you started reading Sarno? |
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Sarah Jacoba
USA
81 Posts |
Posted - 08/06/2004 : 01:28:25
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I think Dave's on the right track. Maybe I'm just picking on your wording unfairly but your saying that this tightness "resulted from the shock of taking one Aleve tablet without drinking water and then going to bed" worries me. That is NOT what is resulted from. Even without TMS theory, that strikes me as nonsense logically. One event like that can't last for years. That is what *triggered* the *initial* pain, which has been perpetuated and amplified a thousand times over by your mind.
I'm always amazed by the fact that fibromyalgia sufferers or other chronically pained people can detail how sensitive they are to everything in their environment, when normal people aren't, without a true physical explanation.
In your case, the idea that an Aleve can have anything to do with your chronic problem now is plain silly. In the case of either your pain or that of the sufferers I mentioned above, the only explanation for this kind of thing is perpetuation by the mind. Call it anxiety, TMS, or what not.
I do know how cruel this mind behavior is. I have been largely free of my oppressive upper body pain for seven months and just this last week, I know not why, it's made a play for me again; when I thought I might have it licked at last. There is definitely a physical element, but it's not an illness, or an allergy, or an injury; I believe it's partially neurochemical habit/memory and it reasserts itself cyclically, probably spurred on by the cycles in our emotions.
I agree with Dave that talking medical jargon like scalenes and TOS is pretty useless. This pain/tightness begins in your mind and neurology, and can and will happen everywhere in your body, so who cares about the details of the symptoms. Expect it to morph relentlessly. Your mind is after all intimately linked to everything everywhere in your body.
--Sarah
"When dream and day unite" |
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lisa
6 Posts |
Posted - 08/06/2004 : 11:00:12
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I have TOS and my treatment team uses a modified mind/body approach. They've given me Sarno's books although they do not promote all of his theories as applicable to my situation. (Or as my biofeedback instructors says "they're completely unscientific but they work"). In chronic pain states, regardless of whether there is an organic structural cause or not, the following can occur:
1) you can develop a conditioned pain response to the stimulus that caused your injury, so for example you can have pain just sitting down in front of a computer, before you even type.
2) in chronic pain states, your central nervous system can become hypersensitized so you can feel significant pain from a stimulus that is not normally that painful.
3) you can develop patterns of chronic muscle holding/guarding around the area of the injury that persist even after the injury has healed or significantly improved.
4) fear/anxiety about pain can increase its perceived intensity
5) people in chronic pain tend to become immobilized physically to some extent because of the pain. A gradual return to activity can help many chronic pain conditions, including TOS.
A mind/body approach can help with these regardless of cause.
At least one person I've met did get a complete recovery from TOS using Sarno's books.
I do believe in one of his books, Sarno mentions TOS as a TMS equivalent, but he's probably referring to neurogenic TOS not vascular TOS. Vascular TOS can have very serious medical consequences and should be monitored by a doctor.
You have to remember that his idea that your mind can modulate your pain is well supported scientifically, but his theory that a large number of medical conditions never have structural cause is not well supported scientifically. (For TOS, I don't think he offers any evidence at all.) Someone I know went through Sarno's program with Sarno himself, and that person commented that a number of people with moderate intermittent pain did improve but none of the people with chronic severe pain did, which is suggestive of the fact that some of these people had a signicant structural cause for their pain.
I know Sarno makes a big point that you have to believe in his theory (especially the idea that there is no organic structural cause for most pain conditions) in order for the mind/body approach to work, but for most people I found that is not necessary.
I don't mean to be inflammory on this forum but I'm concerned that this person has a condition which should be medically monitored.
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TOSPATIENT
USA
13 Posts |
Posted - 08/06/2004 : 15:26:17
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Many thanks for your sober, informed and versed post Lisa. Indeed, the difference between Neurogenic and VASCULAR TOS on these posts is what I'm looking for.
Indeed, Sarno addresses Thoracic Outlet Syndrome very sparsely in "The Mindbody Prescription" without really saying much about it.
What does apply to my case, however, is the issue of anxiety, anger and tension resulting in chronic muscle spasming in the neck in a way that adversely affects the circulatory system. This isn't conjecture -- I had a very expensive MRI/MRA procedure done at UCLA last year that confirmed said circulatory issues...due to conspicuous structural differences that, IN TURN, resulted from TMS-induced muscle tightening/spasming.
Aleve isn't like Advil -- one MUST take it with water. I didn't, and lied down to sleep right after ingesting it. It got stuck in my throat and scratched me there, as well as in the stomach. An upper endoscopy confirmed said scratches.
As you say below, the neck spasming presumably resulted due to the following:
quote:
Originally posted by lisa
"3) you can develop patterns of chronic muscle holding/guarding around the area of the injury that persist even after the injury has healed or significantly improved."
"Vascular TOS can have very serious medical consequences and should be monitored by a doctor."
Indeed. I've seen Schechter in L.A., who said it was TMS and gave me a journal. Not sure what other sort of doctor to see who would/could monitor the circulatory symptoms resulting from my VASCULAR TOS.
And again, my main complaints are NOT pain, but extreme lightheadedness, imbalance and fatigue. No pain, as would be affiliated with neurogenic TOS. However, my curiosity still remains over this key issue:
How is it that the muscles in my neck can ***remain*** tightened? Other TOS patients I know with tightened muscles have not managed to alleviate said tightness, despite using the Sarno method. This, combined with the official word from the medical community that most vascular TOS must be treated via surgery...
...are not very re-assuring.
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TOSPATIENT
USA
13 Posts |
Posted - 08/06/2004 : 15:42:57
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Anyone know if consistent, deep tissue structural body treatment or massage/rolfing will help loosen up chronically spasmed muscles?
This is important. Please help me. |
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Susie
USA
319 Posts |
Posted - 08/06/2004 : 16:16:23
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Lisa-You are really wrong about people not recovering from severe chronic pain with Dr. Sarnos theory. I am definately one who has recovered from the most severe pain I have ever experienced. I would guess most of the people on this board have had severe chronic pain. If you look at the Sarno video, you will see people who were virtually bedridden for periods of time and have made full recoveries. I, too, have most of the TOS symptoms and have been able to make them disappear. Sarno's proof for supporting his theory is the success of his patients in combating pain and other symptoms. It's hard to argue with results. The people who need to see something on an x-ray to believe in a diagnosis will not be successful with Sarno's method. Once you figure out how to make your mind work for you, You will be as astonished at the results as we all are. Lisa, it really works. Give it a shot.
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Wilf
Canada
53 Posts |
Posted - 08/06/2004 : 16:17:25
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I posted on the old Board about the fact that I used to work in a Hospital and became friends with the Director of Physiotherapy. He had been trained in the UK and was capable of performing most types of massage.
I had a massage almost every 2nd day for more than a year. I had very temporary relief at best. I had TMS. A massage does not take it away.
Save your money. Do the TMS work first. |
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TOSPATIENT
USA
13 Posts |
Posted - 08/06/2004 : 18:04:20
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Yup, thanks Wilf. I am indeed doing the TMS work. Daily. Nightly. On the weekends. My muscles remain tight, my head lightheaded.
A friend of mine had T.O.S. for 5.5 years. She applied the Sarno method and it took the pain away in 7 months. Stunning, and made me a believer in Sarno.
However, this same friend retains a very stiff neck despite doing away with the pain and other symptoms. Plus, her stiff neck doesn't result in vascular symptoms as they do for me.
My point: I have what she still has -- muscle tightness/stiffness. However, mine results in debilitating vascular symptoms similar to someone stepping on a running garden hose -- it's affecting my normal circulation.
Heck, I'd rather have her symptoms -- pain -- because at least I'd be have a shot at healing the pain via the Sarno/TMS method. With regard to the muscle tightness/stiffness, I'm not certain that the TMS method will necessarily loosen said neck muscles towards full flexibility and mobility again.
Of course, this doubt may yet again be another TMS symptom, yet I have yet to hear or read of a VASCULAR TOS case, or *muscle tightness* condition was was loosened and healed due to the Sarno method. That's why I come to boards like these with hope.
I pray that I've made my case clearly.
quote:
Originally posted by Wilf
I posted on the old Board about the fact that I used to work in a Hospital and became friends with the Director of Physiotherapy. He had been trained in the UK and was capable of performing most types of massage.
I had a massage almost every 2nd day for more than a year. I had very temporary relief at best. I had TMS. A massage does not take it away.
Save your money. Do the TMS work first.
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lisa
6 Posts |
Posted - 08/06/2004 : 19:53:46
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To clarify what I said about Sarno and chronic severe pain was that in the person I've talked to no one in her group that had chronic severe pain got better. I'm not saying that the people with chronic severe pain never get better with Sarno's approach.
Partly what I'm emphasizing is that Sarno's method implicitly includes a variety of things besides just the refuting of structural causes and a theory that pain is a defense mechanism for repressed emotions. When the method works, it may work for different reasons for different people. I think that's hopeful because it implies that even if the two main tenants of his philosophy do not happen to work for you, there might be something else in the mind/body approach that will work. And it also implies that even though you have structural problem, you may be able to make improvements in your condition with the mind/body approach. In my case, the biggest improvement in my TOS occurred when I was able to start exercising aerobically (reason 5 in my list). For other people, the idea that pain is a defense mechanism is key. I'm not dissing the idea of a mind/body approach, I'm just arguing for flexibility.
As to who to monitor your vascular TOS, the best choice is probably vascular surgeon. For Southern California I've heard good things about Dr. Filler who I think is in Santa Monica. Having a surgeon monitor your condition to make sure you don't have the dangerous complications doesn't mean you have to have surgery. I had a vascular surgeon monitor my TOS for a year and I didn't have surgery.
As far as loosening the scalene muscles, I think Feldenkrais is really helpful in breaking habits of chronic tension that you are unaware of, it works on a more unconscious level to retrain your mind. There's a tape set called I think “TMJ health” that you might find helpful. I found the set “Moving out of pain” also helpful. Shifting your breathing lower into diaphragm can also help. You might try looking at the book “Yoga of Breath”. I also did the Edgelow protocol for TOS.
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Vascular Thoracic Outlet Syndrome
