tag:blogger.com,1999:blog-2558512607087193092024-03-13T13:08:33.357-07:00A Redhead's TOS Journey~ My experiences living with Thoracic Outlet Syndome ~RobinKhttp://www.blogger.com/profile/07247828491596725287noreply@blogger.comBlogger198125tag:blogger.com,1999:blog-255851260708719309.post-68551355210871994622024-01-02T20:07:00.000-08:002024-01-02T20:07:23.795-08:00The latest Update on all things TOS related: I do not and have not had TOS pain issues in several years. My Right sided frozen shoulder resolved over the course of a year. Now my main complaint is my crappy knees and back. But TOS is not an issue for me any more-knock on wood. Granted, I still sit in the middle when watching a screen, never looking to the right or left for prolonged periods. I RobinKhttp://www.blogger.com/profile/07247828491596725287noreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-39735415174374866342020-09-21T17:25:00.003-07:002020-09-21T17:25:49.553-07:00 I now have right side frozen shoulder.My first rib was resected on the right side several years ago.I've been mostly TOS symptom free for a few years.About six months ago I started getting soreness at the ball end of my shoulder.I've pushed through and still done my normal chores, lifting, etc.Now I can not hook my bra in back, nerve pain like my shoulders out of joint hits me if I push it RobinKhttp://www.blogger.com/profile/07247828491596725287noreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-65471969617908833522019-01-24T13:33:00.001-08:002019-01-24T13:37:30.401-08:00Living well, even with TOSI have neglected to update my blog because, honestly, I have not had TOS symptoms to manage in quite a while. TOS has not been on my mind.
I do continue to juggle some things to avoid causing flareup of neck and arm pain.
I will always sit in the center of the room, never look to my left for more than a glance, still sleep on a pancake pillow.
I still take lots of magnesium daily, still RobinKhttp://www.blogger.com/profile/07247828491596725287noreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-71930213252875842182017-10-05T15:13:00.003-07:002017-10-05T15:13:46.786-07:00So...my daughter just had more TOS surgery
My daughter had rib resection surgery on the left side this week.Symptoms have been increasing on her left side for the last four years.
She has restricted her arm movement and done what she could to avoid pain
and numbness for a long time.
When her arm started going numb washing her hair, it was time to consult about surgery.
Everything went great. Transaxillary (armpit incision)RobinKhttp://www.blogger.com/profile/07247828491596725287noreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-84137850776296717842017-01-24T14:39:00.000-08:002017-01-24T14:39:11.456-08:00TOS Update - 2017Life pretty much is what it is, with TOS.
Both my adult children have returning symptoms, years postop.
I live a limited life, careful how I move, sit, etc.
Life goes on, one day at a time - even with TOS.
I hope my fellow TOSers are doing well.
~Gentle hugs.RobinKhttp://www.blogger.com/profile/07247828491596725287noreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-84134637162069307282016-01-10T15:58:00.001-08:002016-01-10T15:58:08.568-08:00Not much new TOS-wise
I have gone back to work part time, and experience flareups of TOS nervy pain I'd say a few times per week.
My discipline of doing p.t. stretches at home and sticking to an anti-inflammation diet went out the window several months ago. Therefore, more symptoms have been cropping up over the last few months, at an increasing rate.
You would think that since I've lived through these TOS issues RobinKhttp://www.blogger.com/profile/07247828491596725287noreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-14976864544630157102015-09-01T14:17:00.004-07:002015-09-01T14:17:35.764-07:00Time for a TOS life updateHello fellow TOSers!
I have not blogged about my journey with TOS much this year.
I went back to work the beginning of 2015, and over the past six months have worked at trying to adapt the work setting to accommodate my TOS issues - to no avial.
Just recently I threw up the white flag and gave up trying...with this particular job (office work).
I am not deterred from continuing to try to find RobinKhttp://www.blogger.com/profile/07247828491596725287noreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-56302588934344277722015-06-23T07:56:00.001-07:002015-06-23T07:56:12.145-07:00More TOS in the News
Emery underwent surgery in Utah that resulted in having two ribs, and scar tissue around his lungs, removed.
http://www.deseretnews.com/article/865630902/Having-dealt-with-health-challenges-Emery-eager-to-start-BYU-career.html?pg=all
RobinKhttp://www.blogger.com/profile/07247828491596725287noreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-72552417460021078182015-05-07T08:02:00.001-07:002015-05-07T08:03:14.446-07:00It's been a while!TOS life update - I went back to work a couple months ago.
I've consulted my physical therapist about ergonomics for my desk as some symptoms have flared with being on the phone, reaching to do mailings and work on projects.
I continue to juggle things, take supplements, exercise, recently revisited physical therapy with the recurring symptoms to see what I might do differently.
I'm supposed to Unknownnoreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-60626963144912138422015-01-28T07:14:00.000-08:002015-02-12T07:30:28.589-08:00Having a moment...I'm having a moment tonight.
words are replaying in my head I heard earlier - "this journey is about the long haul for you".
...the long haul.
I've been so fixed on whats right in front of me, trying and doing new things
that when I stop to take a look at the long view
it feels so overwhelming
the thought of having to manage TOS the rest of my life.
makes me feel the words of a poem.
I sit here Unknownnoreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-88842584810176170672015-01-16T06:21:00.000-08:002015-01-16T06:37:14.235-08:00My Physical Therapist Said - Part 11
"Be in your own world while you're at the gym-work your program, don't be pressured."
"Have fun. It’s work so expect it.
When you need to recover - it’s ok.
Remember, the turtle wins the race.
This is a continuation of a life change.
You’ve done great work and will continue!"
~ ~ ~
I'm sure gona miss those pep talks.
I'm very grateful for the help my P.T. has Unknownnoreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-70603837380833414442015-01-07T05:59:00.000-08:002015-01-07T05:59:00.176-08:00Beautiful TOS PeopleUnknownnoreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-74783538315871874562014-12-31T05:56:00.000-08:002014-12-31T05:56:00.431-08:00TOS Resolutions for the New Year
* An MRI, to see what's going on since rib resection back in 2008, since my daughters rib entirely regrew and I continue to have nerve/muscle issues.
*Flouroscopy guided injection into spine, C4, to see if that helps
*Try acupuncture
*Work on core strength and stability at the gym, continue with physical therapy for upper body at home
*Meet more of my fellow TOSers, hopefully for a 5K walk/Unknownnoreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-78773875376496858442014-12-13T03:00:00.000-08:002014-12-13T03:00:00.712-08:00My Physical Therapist Says Part 10
I have one more P.T. appointment in a couple weeks, then I'm on my own for a while. I can't lie, I'm a little anxious about that.
Words fail me to adequately express how much I have appreciated the understanding, knowledge and approach of my P.T.
After a few BAD rounds with therapy over the years, I walked into P.T. nine months ago very guarded, but desperate for change.
My main hurdle was, and Unknownnoreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-23969695510160319482014-12-04T02:00:00.000-08:002014-12-04T18:06:20.011-08:00My Physical Therapist Says Part 9Several weeks ago, I asked my physical therapist for more explanation of how working to improve *strength* will help my TOS situation.
With all the chronic muscle tension and spasm I've had for years, how can I work on strengthening- don't I need to *relax* the muscles?
PT said -"Think of it this way- compare muscle to a rope. You pull on the ends of the rope and the outer fibers are stressed Unknownnoreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-26576714910173058682014-11-30T20:58:00.003-08:002014-11-30T21:34:02.657-08:00Gentle Hugs T-Shirts and Pins are now available!
Many thanks to fellow TOSer, Aubrey, who designed this TOS awareness logo with the Gentle Hugs message!! You can order it on a pin, a shirt, or other items here -http://www.zazzle.ca/gentle_hugs_tos_awareness_womans_tee-235060560888694921
I don't know about you, but I will be wearing this shirt to any family gatherings from now on!
Gentle hugs~
Unknownnoreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-125624900513201942014-11-23T09:33:00.000-08:002014-11-23T09:33:16.734-08:00Yule Run I'll Walk ~ Guest Post ~ SabineSeveral months ago, I was inspired by our fellow TOSer, Teran (previous guest post here), who ran a marathon and posted in a facebook TOS support group about her accomplishment.
What struck me, and pushed me out the door to start walking, was when Teran said, "you are not in the waiting room of life." I'm thankful she motivated me to get moving through the TOS pain, because Unknownnoreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-69104761441330331912014-11-21T04:58:00.000-08:002014-11-21T04:58:00.576-08:00Diet affects pain and physical challenges more than you think!If you've not heard of Dr. Terry Wahls, watch this Ted talk video and be amazed at the results she is experiencing in the reversal of her own MS disease by changing her lifestyle and diet!!
I know it sure inspired me to keep at it. I have seen good results from knocking junk out of my diet as well, able to get off meds, moving more, less pain.
http://tedxtalks.ted.com/video/Unknownnoreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-52917747624706682232014-11-14T03:00:00.000-08:002014-11-23T09:52:00.562-08:00TOS WalkingI spent a few years being pretty inactive, using TOS as an excuse to not do much.
Seven months ago I began walking a half mile a day. I got increased aching and nervy zappers in my arms, neck, and head from walking, but I persisted and increased my distance slowly.
It felt good to accomplish something, one step at a time, an entire half-mile. It was an improvement. It was a start.
I decided I Unknownnoreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-17171493891849412632014-11-07T21:16:00.000-08:002014-11-16T13:09:50.911-08:00Time to change the narrative.I found this podcast to be VERY encouraging, and a bit challenging. I hope you will give it a listen.
http://findingourhunger.com/2014/09/10/unnarrative/#comment-201
As the podcast mentions, I've found it is important for me to challenge and change how I consider my life and it's physical challenges.
I'm learning to not say "I have TOS", but to say "I live with TOS".
And yes, for me it does Unknownnoreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-78295777289443330782014-11-01T04:38:00.000-07:002014-11-01T04:38:00.231-07:005 Ways You're Not 'Living' With Chronic Illness - article share dayThis short article gave me a much needed kick in the pants today. Excellent advice. I hope you come away inspired to live your best life possible...even with TOS.
http://www.huffingtonpost.com/ilana-jacqueline/personal-health-_b_5482294.html
Here's an excerpt;
"Chronic Illness is:
Coped with
Managed
Organized
Contained
Controlled
Lived with
Handled
Confronted
Managing chronic Unknownnoreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-87724925388630053062014-10-27T06:11:00.000-07:002014-10-30T18:42:17.012-07:00Would I have rib resection surgery again - ??Maybe.
I would seek a second opinon from someone who removes the cervical rib...especially since my daughters first rib grew back-entirely, and all wonky, and all three of us had pretty much the exact same surgery and have had symptoms return.
The specific physical therapy I've had this past year has been so helpful that I think If I'd had good p.t. 5 years ago (with someone specializing in Unknownnoreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-6683067740489247762014-10-21T20:51:00.002-07:002014-10-29T07:31:11.425-07:00TOS update - Exercise, Diet and Supplements...oh my! Lately my TOS pain (nerve pull, sharp, aching, throbbing, a little twitchy, from base of my neck, down arm into hand, up neck into head) comes on sporadically, aggrivated by driving-especially when it's windy, or if I've had bad prolonged sitting posture (head forward).
The jaw/neck/head pain that I believe is partly a result of having anterior scalene muscle removed when my first rib was Unknownnoreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-60958204717549720952014-10-03T19:47:00.001-07:002014-10-03T20:36:11.164-07:00Two TOSers go to ArtprizeThe TOS daughter and I went to artprize, a city-wide art competition where people vote on their favorite art on display through out the city at several different venues. Lots to see and lots of waking.
We both began our day excited about all the new things we were going to see, feeling energised and prepared for the day ahead.
As usual, we thought ahead about what to wear, light Unknownnoreply@blogger.comtag:blogger.com,1999:blog-255851260708719309.post-64246784761688230312014-09-26T00:00:00.000-07:002014-10-22T04:22:23.175-07:00My Physical Therapist Said - Part 8How often have you thought you would love to detach one or both of your arms because they hurt so much you just can't stand it any more?
I told my PT about having increased arm pain at a recent appoitment.
I mentined that my daughter and I think it would be great to work on getting a patent for 'the detachable arm.' But I also realise it is quite possible to detach your arm and still feel the Unknownnoreply@blogger.com