Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 12-15-2007, 01:04 PM #1
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Book Autonomic Neuropathy

As many of you know, since July I've had some new weird symptoms of not being able to breathe, a heard abdomen, heart irregularity, and severe digestion difficulties.

The ER said several different things - most saying I was just constipated (even when I had no food in my system from taking those harsh colonscopy cleaners.) Then they said I just had an mild heart attack like an electrical problem - but not one really understood it, and really enmeshed it with my TOS diagnosis.

So, doing my own research on the Web, I came upon Autonomic Neuropathy by following the symptoms.

I am now SHOCKED that the doctors could be so stupid.

Autonomic neuropathy is a group of symptoms caused by damage to nerves that regulate blood pressure, heart rate, bowel and bladder emptying, digestion, and other body functions.

Alternative Names
Neuropathy - autonomic
Causes
Autonomic neuropathy is a form of peripheral neuropathy. Autonomic neuropathy is a group of symptoms, not a specific disease. There are many causes.

Autonomic neuropathy involves damage to the nerves that run through a part of the peripheral nervous system. The peripheral nervous system includes the nerves used for communication to and from the brain and spinal cord (central nervous system) and all other parts of the body, including the internal organs, muscles, skin, and blood vessels.

Damage to the autonomic nerves causes abnormal or decreased function of the areas connected to the problem nerve. For example, damage to the nerves of the gastrointestinal tract makes it harder to move food during digestion (decreased gastric motility).

Damage to the nerves supplying blood vessels causes problems with blood pressure and body temperature.

Autonomic neuropathy is associated with the following:

Alcoholic neuropathy
Diabetic neuropathy
Parkinson's disease
Disorders involving sclerosis of tissues
Surgery or injury involving the nerves
Use of anticholinergic medications
Symptoms
Swollen abdomen
Heat intolerance, induced by exercise
Nausea after eating
Vomiting of undigested food
Early satiety (feeling full after only a few bites)
Unintentional weight loss of more than 5% of body weight
Male impotence
Diarrhea
Constipation
Dizziness that occurs when standing up
Blood pressure changes with position
Urinary incontinence (overflow incontinence)
Difficulty beginning to urinate
Feeling of incomplete bladder emptying
Fainting
Abnormal sweating
Exams and Tests
Inspection of the abdomen may show distention, and listening to the abdomen with a stethoscope (auscultation) may show abnormal sounds indicating decreased gastric motility.


An eye examination may show sluggish pupil reaction. Examination by touch (palpation) or tapping (percussion) may indicate a distended bladder. Blood pressure examination may show a decrease upon standing (postural hypotension).

Occasionally, other symptoms may indicate disturbed functioning of the autonomic nervous system, including high blood pressure, rapid or slow heart rate, irregular heart rhythms, excessive sweating, difficulty swallowing, or other symptoms.

Special measurements of sweating and heart rate are called "autonomic testing" and can assist in diagnosis and treatment.

An upper GI (gastrointestinal) examination with small bowel series may show decreased motility, delayed emptying of the stomach, or other abnormalities and may be used to rule out physical obstruction as a cause of vomiting or other GI symptoms.
An EGD (esophagogastroduodenoscopy) is used to rule out physical obstruction as a cause of GI symptoms.
An isotope study may indicate gastroparesis (decreased gastric motility).
A VCUG (voiding cystourethrogram) or other tests of bladder function may show a flaccid bladder (inability of the bladder to contract and empty).
Other tests for autonomic neuropathy are guided by the suspected cause of the disorder, as suggested by the history, symptoms, and pattern of symptom development.
Treatment
Treatment is supportive and may need to be long-term. Several treatments may be attempted before a successful one is found.

The use of elastic stockings and sleeping with the head elevated may reduce postural hypotension. Fludrocortisone or similar medications may be beneficial in reducing postural hypotension for some people. In severe cases, Proamatine may help prevent a drop in blood pressure when standing.

Medications that increase gastric motility (such as Reglan), small, frequent meals, sleeping with the head raised up, or other measures may be used to treat reduced gastric motility.

Impotence, diarrhea, constipation, bladder problems, and other symptoms are treated as appropriate. These symptoms may respond poorly to treatment.

Outlook (Prognosis)
The outcome varies. If the cause can be identified and treated, there is a chance that the nerves associated with autonomic neuropathy may repair or regenerate. The symptoms may improve with treatment, or they may persist or worsen despite treatment.

Most symptoms of autonomic neuropathy are uncomfortable but they are seldom life threatening.

Possible Complications
Fluid or electrolyte imbalance such as hypokalemia (if excessive vomiting or diarrhea)
Malnutrition
Kidney failure (associated with reflux of urine)
Psychologic/social effects of impotence
Injuries from falls (associated with postural dizziness)
When to Contact a Medical Professional
Call for an appointment with your health care provider if symptoms of autonomic neuropathy occur. Early diagnosis and treatment increases the likelihood of controlling symptoms.

Prevention
Prevention or control of disorders that may be associated with autonomic neuropathy may reduce the risk. For example, diabetics should control blood sugar levels closely. Alcoholics should stop drinking.
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Old 12-15-2007, 01:08 PM #2
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I am going to talk with my pain mgt. doctor about:

getting a digestion aid medication (but making sure it is not going to cause another illness, as did the Lyrica and the Topomax.)

I am sleeping with my upper body elevated. MANY TOSers have reported needing to sleep in a recliner to control their symptoms...so this is a slight help.

I need to get a rescheduling to a good rheumatologist (last time was 3 years ago) and make sure no immune / rheumy illnesses can be detected. If so, I want immediate help to try to fight them.

I see a direct connection between TOS progression, RSD and this autonomic neuropathy...why an ER doc couldn't make the diagnosis / connection I honestly don't get, because I am not a doctor, just a legal person! But the symptoms are so spot-on, I hate to self-diagnose, but now I have this to bring up to my next doctor's appt.

God bless.
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Old 12-15-2007, 02:51 PM #3
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Glad you found this info, I hope you can get the workups and tests for it.
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Old 12-15-2007, 05:07 PM #4
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You have come across your symptoms much in the way that I found TOS. I am so new to this, my only suggestion might be to downplay the amount of research yo have done...doc's have huge ego's in my experience. They wanna be the one to dx. If I could have done it over, I would have presentted my symptoms to the doc, and said a lot less about TOS. Maybe if he'd thought of it first, he'd be treating me a little more seriously.

Good luck, let us know how it goes. I read all these posts and learn so much from them.

Best of all wishes!
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Old 12-22-2007, 01:31 AM #5
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Tam,

This could very likely be connected to the RSD - many of the sx such as cold hands/feet, changing color, abnormal sweating, low/high blood pressure and much more are due to dysfunction within the nervous system, both the autonomic, which regulates things like temperatures and pressure, mostly processes we are not usually aware of, and a second system, which I can't remember the name of at the moment - not peripheral, though.

It sounds as though the RSD may be hitting your autonomic system harder than the other - maybe because you are confined to bed so much and pretty inactive. If you were up and around more the RSD might follow a more typical pattern. Just my guess though, I'm no Dr.!

RSDHope.org, rsda.org and the international RSD Foundation all have excellent sites with in-depth information on RSD and it's many facets. If these links don't work, google RSD support or RSD research or similar and you will find them (and others) but these are among the very best.

Best wishes - and good for you for pursuing this! Can we all say "patient neglect"???

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Old 12-24-2007, 02:18 PM #6
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Default Autonomic Neuropathy by Tshadow

Hi TShadow, I am a new member and have never posted here before. Was looking at the threads last night in search of a doctor for my TOS in Utah since the doctors here are clueless. You are right about the automic neuropathy and should ask a doctor about it in your case. I have TOS but also have had autonomic neuropathy for approx. 20 yrs. and most doctors don't understand it so I learned about it on my own in desperation by doing my own research. Just last month I finally had a doctor, well actually the doctor's physician's assistant, explain autonomic neuropathy to me at my gastroenterologist appointment. He admitted that gastro drs are just now starting to understand all of this! Anyway, I can't believe how much alike we must be personality wise. You see, I am from legal assistant/secretary background and do tons of my own research because over the past 20 yrs. I have learned not to trust doctors, especially the ones who think their god! One thing I learned, due to my own research and trial and error, over the past few months, when it comes to stomach issues from the autonomic neuropathy. That is, like you mentioned, small frequent "Mini" meals every 2 or 3 hours works best for me. I can't even eat a large meal like a full turkey dinner anymore or I get really sick. I eat a protein (like slices of chease or yogurt or nuts) and a serving of fruit or vegetable sticks. I don't eat any bread or pasta or anything that contains wheat because they think I also have a wheat or carbohydrate intolerance. I am starting to think that when you have autonomic disfunction and it takes too long to digest things that flour, wheat, those type of carbs just sit in the stomach or intestines for toolong before they are completely digested and that is why they cause a problem so it may not be an "allergic" thing at all. For some reason GREEN vegies help a lot when my digestion isn't working well. I started eating green sugar snap peas every day and there is something in them that gets rid of my stomach ache when I have a stomach ache starting. Even my daughter who has some autonomic issues says the green pea pods help her. Being the legal type, I am dying to research why, or what nutrient in the pea pods, is eliminating the stomach ache. These are not "snow peas" but stringless green pea pods eaten raw. They are sweet, crunch and delicious! Also, I eat Dannon Activia Yogurt every day for breakfast or a snack. When I stop getting the yogurt good bacteria, my digestion gets worse, diahrea, constipations, IBS, etc. You can also take the good bacteria in capsule form if you hate yogurt. My gastro's assistant also said that the doctors are just now understanding the benefits of the good bacteria for digestion and they handed me a sample packet of "Align" good bacteria capsules at their office. However, I find just one serving of the activia yogurt works well enought. This diet has greatly improved my digestion/stomach symptoms and I have lost a much needed 25 LBS in only 4 1/2 month! Anyway back to the TOS. I have been disabled from my occupation for 2 years due to TOS pain, numbness both hands and arms and both shoulders. Left side is much worse than right. I also have cervical spine issues, degenerative disc disease, herniation C 4/5 from auto accidents which is where the neck pain and TOS all began in 1992. Anyway, I live in Utah and have still not found a good TOS doctor in 2 years and have been living with total hand and arm numbness upon awakening for the past two years. When the numbness leaves after approx. 3 hrs then the pain begins. Now I have days that my left hand and arm are numb all day long. Today I woke up with my left hand numb, swollen and turning reddish purple. It freeks me out when this happens but I can usually get it under control with a good deep tissue massage of the shoulder, upper back and arm areas done by my teenage daughter. I am just waiting for the day that I must go for surgery but don't want to go that route since I have researched it and have heard other patients horror stories. At least I won't go that route until I have found a really good competent TOS neurologist or neuro surgeon. I used to work long hours on a computer all day as a legal assistant to government attorneys and then as executive assistant to a CEO of a large corporation. I spent 8 or 10 hours per day pounding away at the computer because all correspondence was done via email and all meetings scheduled via internet, etc. etc. because it was an international company in over 200 countries. Of course my private disability insurance claim was denied because the insurance company, whom I paid premiums out of my pocket, didn't think I was disabled from my occupation! I am not supposed to even type like this but what the heck my left hand is numb and swollen anyway! I am on health insurance through the state now but I must pay the huge premium even though I don't have a job and have completely lost all my income! Now I must find all new doctors because my old drs are not on my new insurance. At least the Doctors at University of Utah Hospital are on my new plan so I am trying to find a good TOS dr. there but must travel 1 hour to that hospital so it aggravates my TOS even more. Can't find a PT anywhere in my county that can treat TOS. Tried several and they all made it worse. Found a program designed by Peter Edgelow, PT in California (see the American TOS Association website for his info) that is for TOS and he has treated 2000 patients with TOS. No PT's in Utah employ his pogram so I am trying to get the local PT office to purchase his program and train their PT's so I can get help. Can you believe what we will do to get help for this aweful condition?! Take care.
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Old 01-31-2009, 09:11 PM #7
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Bump this up for new person who posted about breathing problems.

I now regularly have breathing problems. I have to control them with Ativan and self-hypnosis or guided imagery. I can't let myself get too upset, and must calm my rib cage muscles so that I can breathe. Sometimes this will last several days.

Also, my digestion is a mess.

It is important to have a good pain doc and change up the pain meds program completely every year or so. It tricks the brain a bit, and I've actually come to a lower dose (type) of meds now due to changing things up several times now. (6 1/2 years of TOS.)

No real improvement, however. Still primarily bedridden, with a "good" day every few weeks.

Best to all.
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Old 02-01-2009, 07:37 PM #8
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Default bladder issues

Hi Tam,

this is an important post. I have a few of the issues and attributed them to my meds...the difficulty urinating....esp can't go in public toilet at all..but sometimes it can take up to 5 mins waiting to be able to go...sorry graphic I know...
My gut is a mess....I can eat large meals but eat funny things and things that are ready to eat in the fridge I won't eat.....weird food issues......

I just found out that I have moderate aortic valve regurgitation and will likely have to have a valve replacement at some point in time....it is bad.. It scares the hell out of me. I also have mitral valve issues...minor compared to the aortic stuff now!!!!!!!!

Didn't clue into the autonomic nerve issues!!
I also have the sweating thing, the bladder not emptying, the dizzyness standing up, the BP tht changes with position........And temperature intolerance...can't stand cold...since I can't exercise that rules out the ability to see if I am heat intolerant with exercise!!

Great post thanks!!
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Old 02-02-2009, 01:09 PM #9
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Default Good thread TAM

Yes, as Dr. J states all my new issues are autonomic & caused by opiod ingestion. There is a new program he has me on for opiod constipation. There are always drugs & an injection if worse comes to worse. Yeah, more medication to cause something else to go awry.

Off to PT to feel better.
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Old 02-05-2009, 03:54 AM #10
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I went to see a doctor yesterday and now the doctor suspects something like this. I'm going to have a couple of tests and I just hope that that diagnosis won't be approved...
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