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From Farm Girl to Nurse and now a TOS Survivor!
Amanda's Story
Primary Diagnosis: Neurogenic Thoracic Outlet Syndrome
My TOS story is long and dramatic but I will try to keep it as brief as possible! I grew up on a farm and I always had trouble doing things my brother and sister could do. For instance, in the hay field, I struggled lifting the bale up to the wagon so I was eventually labeled the "lazy" one. I always thought the reason people didn't like washing windows was because it hurt them! Things like carrying a purse either on my shoulder or as a handbag always gave me trouble. I guess I have had problems all my life but it was "normal" to me so I never complained. read more share your story today!
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GET NOTICED! YOU HAVE TOS! LET THE PUBLIC UNDERSTAND YOUR PAIN!
Unite! Let the world know that TOS is real!
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Wear your Support! Navy Blue Band represents Peace and Tranquility, Bright Yellow Lettering Represents Hope and also gets noticed! You no longer struggle alone! Let the world know about TOS and your TOS story! Invite questions by wearing a TOS Awareness wristband today!. Wristband reads, "Thoracic Outlet Syndrome Hope". To reserve a discount pack of 5 TOS Awareness wristbands click here Hurry Almost Sold Out! Reserve Yours Today!
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California Judge Issues Landmark TOS Verdict!
California Workers' Compensation & Social Security Disability proving very difficult for most TOS patients.
EISENBERG LAW OFFICE
NEIL D. EISENBERG
THE HOBART BUILDING
582 MARKET STREET
SUITE 912
SAN FRANCISCO, CALIFORNIA 94104
Tel: (415) 956-3567
Fax: (415) 956.2937
A PROFESSIONAL CORPORATION
A SOCIAL SECURITY BILL OF RIGHTS FOR T.O.S. VICTIMS
by Neil D. Eisenberg
In a landmark decision, a Social Security judge in Northern California has issued what amounts to a bill of rights for thoracic outlet syndrome victims. Judge Erickson gave the claimant everything a T.O.S victim could ever hope for and stated in clear and precise language why thoracic outlet syndrome can lead to total disability. Even more important, however, is the fact that the TOS patient had gone back to work on a part time basis, and the Judge rewarded her for going back to work and granted her training benefits which are now available under the Social Security law. The TOS patient testified at her hearing that her own doctor had given her a job on a compassionate basis as a receptionist and part time secretary, but that she was unable to type and could only drag a mouse on her computer. The judge accepted the patient's testimony and awarded her full benefits up to the time that she went back to work and then construed her present employment to be compensable training under the Social Security Act. Judge Erickson bolstered his decision with the opinion of a vocational rehabilitation expert who testified that if a claimant could not effectively type in an office job, the claimant was currently taken completely out of our modern economy. At the time of the hearing, the TOS patient had suffered from thoracic outlet syndrome for 4 years as the result of being hit head-on in a motor vehicle accident case by a drunk driver. At the time of the accident the TOS patient had been in excellent health and had been working. The TOS patient applied for Social Security and was turned down but appealed. copyright © 2008 Neil D. Eisenberg and the American TOS Association. Edited version
Thoracic Outlet Syndrome, TOS Surgery, Discussion Boards
7,625 Posts, 416 Members and growing! updated 7/02/08
"I finally decided to have my surgery. He will remove the first rib, perform a veinoplasty and possibly remove some muscles. I also have a protein deficiency in my blood that increases my chance of clotting. I will have to have shots of Lovenex 2x's a day for 7 days after surgery. I have read many posts on this forum, but I am still scared to death. I know everyone recovers at a different rate, but any estimates as to how long before I will be able to even ride in a car? My son has a baseball tournament on the 4th and I am hoping to go watch ( in drug induced state of course)..."
" My arm is having the creepy crawlies does anyone else have this issue? Also When I sit my forearm on a table, it starts jerking for no reason. Anyone that has had these issues email or post and let me know about it that way I will know if it is related."
"Now my Left TOS side is progressively getting worse Thanks to the Damn IME exam I had on June 10th. I had a thread in the legal issue forum When is Enough, Enough??? My left arm pain increases daily it is getting heavier I wake 4 to 5 times a night with my outer hand and little and ring fingers dead and tingly and during the day my little finger is now numb. It was never this way before, my left side was pretty mild it bothered me but nothing like it does now..."
"Hi, I am new to this forum. I have had problems with my shoulders since 2002. I had impingment surgery on left arm and now, I had two surgeries on my right arm. My doctor said I had arthritis of my right shoulder so he cut out 1/8 of an inch of bone. I have had swelling of my right hand and it turns red/blue. the palm of my hand burns and it hurts. Painful right shoulder and swelling near my collar bone. I finally went to a another doctor for a second opinion and had and MRI and MRA done. I have TOS. My shoulders are rounded and hunched forward. I feel as if I am carrying 100 pounds on my right side..."
| Thoracic Outlet Syndrome Support Group Leaders Needed |
The American TOS Association is in the beginning stages of developing a large support group network and we're looking for volunteer group leaders. Some responsibilities are:
1. Setting time and date of meeting
2. Finding location for meeting- home, church, library...
3. Assisting the Association with support group coordination
4. Setting meeting agenda
5. Confirming guest speakers-provided by ATOSA and others-MD's, PTs, DC's...
6. Delegate tasks such as refreshments, member roster updating...
In larger states such as California we will need several Group Leaders.
If you're interested in becoming a TOS Support Group Leader, please contact Volunteer Services.
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Post Surgery Cat Scan (CT)- From the Inside Out
Ever wonder what you may look like on the inside post first rib resection? Below is a post operative CT Scan depicting a complete first rib resection. Notice the missing first rib on the left. (your right). Patient with Paget Schroetter's Syndrome-Venous TOS
The Physical Examination
The physical examination is one of the most critical aspects of diagnosing Thoracic Outlet Syndrome. Your TOS experienced physician may begin the examination by taking a very detailed and often lengthy history. This is a very important part of the TOS diagnostic puzzle. Here are some important things you should be prepared to answer during this initial history taking phase:
- When did you first notice your symptoms? After an injury? A gradual onset?
- How long have you been experiences these symptoms?
- What makes your symptoms worse?
- Does anything relieve your symptoms temporarily?
- What type of treatment have you had? Physical Therapy, Pain Management, Surgery...
- Do your symptoms interfere with your daily living activities? Brushing hair, getting dressed...
- Do your symptoms interfere with your ability to work?
You will be asked many more questions but these are the basics that all TOS experienced physicians will ask.
Initially, you may be asked to remove your shirt so that the physician can get an overall view of your chest, neck, shoulder, arm and hand. Your physician will then assess circulation and look for any swelling. Your doctor may also check your nailbeds to assess adequate perfusion (capillary refill). If your physician suspects that you may have a vascular problem additional vascular tests may be ordered.
Your posture may be noted and your physician may ask you to "sit up" or pull your shoulders back to see if there is an improvement in symptoms. Pay close attention to your symptoms after you've corrected your posture and report exactly what you feel. (improved, no change, worse...)
You may be asked to perform some simple arm tests that have been used in the past as a diagnostic tool. Arm tests do not completely rule in or out Thoracic Outlet Syndrome. They are a very small part of your exam. Most TOS experienced physicians give little weight to a "positive" arm test without further diagnostic studies. During these arm tests it is important for you to pay close attention to your symptoms and report exactly what you feel. Do not try to complete the test if you are unable and always tell your physician exactly why you stopped. (pain, numbness, tingling...)
Your physician may perform additional tests during the intial exam and may order additional diagnostic tests to aid in making a diagnosis. Some tests your physician may order are MRI, CT, EMG, and ultrasound.
If you do have TOS, your physician may order physical therapy for a specific time, lifestyle and work modifications, and possibly surgery. Surgery may be offered initially if you are experiencing life or limb threatening vascular complications.
So Many Patients So Few TOS Experience Physicians
Traveling to see a TOS specialist
Most will agree that there not aren't enough TOS experienced physicians to go around. With about 20 TOS experienced physicians nationwide it is not uncommon for patients to travel hundreds of miles to seek consultation, have surgery or for ongoing experienced care. One of the most difficult challenges is the financial aspects of traveling but in the long run these financial challenges my pay off. The long term financial consequences of inexperienced TOS healthcare can have far greater consequences than the immediate cost of travel. It's not say that traveling will guarantee a successful outcome but your odds do improve if you seek help, wherever that may be, from a TOS EXPERIENCED physician. Insurance companies and workers' compensation often waste thousands of dollars sending patients to physicians with little to no TOS experience which puts the patient at a greater risk of lifelong permanent disability and can potentially lead to or increase life and limb threatening complications such as DVT (deep vein thrombosis) and PE (pulmonary embolism). In any event, traveling outside of your homestate may be your best bet in the long run as the cost of inexperience and delay can be devastating and lifelong.
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