Living well, even with TOS

I 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 use a few adaptive aids like the Loopo seatbelt clip, or a neck pillow for my car seat. 

But otherwise, life has been good. No big TOS complaints. 

I still have just one side resected.  The other side has not been symptomatic. 

I rarely get aching nerve pain on my resected side, usually from bad posture. 

The pain dosn't last long.
I still really prefer very gentle hugs.

I miss the facebook TOS support groups since I left fb. But I am very glad to be off fb.

I will continue to leave this page up so people can glean what they can from my experience and my kids TOS experience. 

In the future, if  I have more TOS experiences, I will share them here.

I hope you all are continuing to live well...even with TOS.

TOS Update - 2017

Life 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.

Not 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 for so long, and then found what worked to reduce my symptoms, that I'd just go back to doing what I know to do-right?!
Except it's not so easy...the discipline...doing the no-fun, painful stretches when I could curl up with a book or bake something. Sticking to the diet that had me 20+ lbs lighter than I currently am (and feeling so much better)...why not *just* go back to that?

I suppose I've been choosing the easier route, casting aside discipline, indulging myself in carbs and Netflix marathon days because it has felt mentally too stressful to stick to the highly methodical way of living that had proven helpful. Dealing with some personal life issues left me drained of the will-power to keep juggling so many things.
I just wanted to let my guard down. Relax.

That was six months ago.
Old habits are back, along with old aching pains.
TOS does not care if I need a mental break from its constant nagging.
TOS does not care if I don't want to carry its baggage anymore.
TOS is with me, and the more I try to ignore it, the louder it screams for attention.

So pay attention I must.
By deciding to get back to what I've learned works for me.
Stretching. Staying active. Enough sleep. Clean diet, low carb, less caffiene.
Giving. Finding fun and joy, having dreams, moving forward instead of parking in one place (the recliner).

Here's to a better 2016 for all my fellow TOSers...one day at a time!

Gentle hugs~

Time for a TOS life update

Hello 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 something that I can do, as I still feel I have a lot to offer and can be a productive employee.
As you all know, finding just the right job that won't aggravate TOS symptoms is quite a challenge.
Never the less, I forge ahead!

I am back in physical therapy just this week, after several months away.
I must confess, with the attention I've been paying to my job, I have totally slacked off on the exercises I'm supposed to be doing at home...and as predicted, had a huge flareup just a week ago.
Nothing motivates me to get back to staying ontop of doing my exercises and regimen that works for me to keep symptoms as low as possible like having a flareup of pain knock me on my ---!

Thoughts of applying for disability have floated through my mind.
For now, the mountain of looking for work is one I can face.
The mountain of trying to get disability I'm not prepared to climb just yet.

Gentle hugs,

~Robin

5 Year Ribaversary

I have not blogged about my TOS journey recently because I've been going through the rounds of doctors, once again. I was hoping to have more to report by now, but I'll get you caught up The Days of My TOS Life. I have a new family doctor, so I had to fill him in on my history and recurring symptoms.
 He sent me first to a new pain management doctor-who gave me a list of my treatment options: 1. Do nothing. 2. Radiographic workup (tests & scans). 3. Physical management, (physical therapy, TENS, OMT-osteopathic manipulation, home exercise program). 4. Medication management-(nsaids, antidepressants, muscle relaxants, anti-convulsants, opiod, topical). 5. Epidural steroid injection. 6. Medial branch block. 7. Radio Frequency Ablation (burn the nerve endings). 8. Spinal cord stimulator, implant. 9. Surgery. A pretty depressing and scary list. I left that appointment feeling pretty deflated.

I asked for trigger point injections with lidocaine, one at base of my neck, and one where it feels like a knife it sticking in my back. The doctor informed me there is a risk of lung puncture with the deep shoulder blade injection, so I chose to just get the neck injection, which hurt a lot for two days after, then helped relieve pain for about 10 days. It's back to the usual tense, sharp pain now.

 I revisited my new family doctor, and after chatting, he seemed to agree that pain mgmt doctor was not the best choice for me. I was prescribed gabapentin and referred to an ENT-ear nose throat specialist. I'll backtrack a bit here to explain why he referred me to an ENT. The most painful symptoms that led me to being dx with TOS and having rib resection were neck, jaw, ear, head, arm, upper back/shoulder blade pain. Surgery was successful in alleviating the arm pain for a while, but most of the pain has returned.

So, the ENT examined my ear, numbed my nose/throat and scoped my nose throat-took pictures even- all normal.
He thinks I feel a lump when swallowing because my muscles are very tight, spasming, and there is a hyoid bone in your throat and my muscles are too tight around it. The ENT's thinking is that my symptoms are possibly from having muscle removed when the rib was resected. He referred me to a physical therapist who has had great results with TMJD,  and head/ neck injury patients.

 My therapy assessment was a week ago. The therapist seems knowledgeable about TOS. He believes exterior muscles in my neck are overcompensating, and interior muscles are lazy and not working properly. He also mentioned that I healed post op with tight pecs and rounded forward shoulder, which pulls on muscle in shoulder blade. (It IS all connected!) He commented he thinks the origin of my pain may be located at the level of the cervical rib, where the wad of upper trap muscle is that gives me fits . I decided to hold off on starting the gabapentin until I saw what p.t. was going to be like.

I had terrible arm pain for about 12 hours after the assessment. The first therapy session was 24 hours ago, and during therapy all was well...lay on heat, a little work in/under shoulder blade, some massaging type work on neck and head. I was given my first 'exercise' to do at home. I am to lie flat, and slightly tilt my head up and down. The tilting movement does not start in the neck-at the base, but up higher. I'm supposed to barely tilt my head up and down a half inch, but focus on the movement being up higher than usual. (I wonder how many calories that 'exercise' burns?)

I left feeling good. I ran an errand, and on the drive home an hour later, I pulled over to pop 800 mg ibuprofen and cried the rest of the drive home because my arm, neck, ear, back hurt SO much. The paring knife in my back changed to a meat cleaver, and shooting electrical jabbing pains were up my neck and head, down my aching arm.
For me, when my pain level ramps up past 4-5, my brain does not function well. I'm grumpy, touchy, unable to make clear decisions because all I hear, feel, see is pain-pain-pain-pain. It's like the pain short circuits my brain. I hate that.
I am curious to see what the therapist has to say about my reaction to the first session. I have gone to many rounds of therapy, chiropractors, massage therapists. And I've made myself stick with each one for weeks and months, pumping machines, using thera bands, stretching, enduring myofacial stretching (painful!) hoping for positive results. Mostly, that all just caused me a lot of unnecessary pain.
That said, I have hope that this p.t. knows TOS and the accompanying muscular issues, and may be able to help me.

Now, I just have to get past the mental hurdle of the fear of increased pain (from my past experiences with all the p.t.) so the current therapy stands a chance at being effective.

For me, that includes choosing to have hope that life will get better, that pain will decrease, and function will improve. I will do my best to fight off the urge to feel like a TOS victim. I will continue to look for ways to be a TOS survivor....along with all my fellow TOS survivors. I love and appreciate you all for your genuine understanding, and the way you show compassion to others who are hurting because you DO understand.
 My heart goes out to each of you as we live this TOS journey together.

Gentle hugs to each of you~

Three TOSers go on a Trip - Daughters Second Opinion Update

My neck and arms were hurting too much to drive us to the University hospital for my daughters second opinion consult this past week. This is the consult I was supposed to have for myself but gave to her because she has been having more problems recently.
So my son drove us. The roads were treacherous here in the Midwest too. I thanked him several times.

The daughter had a couple more tests, x-ray, doppler, then we waited for the doctor.
A physicians assistant came in and went through the daughters history, her complaints, had her do the Adson's maneuver, which was interesting to watch  one hand turn completely white then blue in seconds.  The P.A. mentioned that the diagnosis of TOS is not an exact science, more of a combination of several factors. I mentioned that our family has been through resection surgery three times combined because I also have TOS, and my son in the waiting room also has TOS. She said, "Oh, 'familial', I'll have to tell the doctor that."  The P.A. poked around the daughters neck area, looked at her armpit scar, and left to go brief the doctor.

After a while, the doctor entered the room with his assistant and asked the daughter a few questions, asked her to hold her arms out to her side and tell him what she felt. He then scooted on his stool up closer to her and said something to effect of - "Well, you do not seem at the point of surgery yet so when you feel excruciating and want to proceed with surgery we can do that. What do you think?"

Daughters face was blank, shocked, speechless. She told him the reason she has been trying to get in to see him since last June is to find out what is causing her recurring pain, to ask questions about if she should be avoiding doing certain things. "No, I do not advise my post-op patients to restrict themselves in life, you should not have to restrict yourself", he said.

The doctor had not addressed the fact that we brought post-op x-rays with us that show a rib regrown. When I asked about the x-rays he stated- "Ribs do not regrow, although not much rib was taken in the first resection, but ribs do not regrow."  I asked him, "So what are we seeing in the x-ray then, because it looks like a full rib!?" He said he wasn't sure, he'd have to go look.  The daughter mentioned having different pain now than before previous rib resection, and wanting to understand what was causing it. The doctors response- "You have TOS, that is the cause of your pain."
Cut and dry, in three minutes time.
She tried asking a couple more questions, which the good doctor cut off the end of each without listening and answered with assumptions. When she mentioned arm swelling with exercise, he sent her for a vein duplex/doppler to check the subclavian veins and told us to return in an hour after that was done.
Upon return, we were escorted to a conference room where we waited a while. The doctor and his assistant returned and informed us the vein test was normal.

"The only thing I can do to treat your TOS is surgery, so when you feel this is disabling you to that point we can operate and remove the first rib, one incision above the collar bone, one below."
My daughter then asked again about the regrown rib, the doctor said he was not able to view the post-op x-ray we brought. So then the daughter made the most excellent move of the day-(I absolutely LOVE this) she got out her cell phone and said, "I know this isn't a professional quality image but look..." and pulled up before and after pictures of her x-rays and showed him!!! (Such a great move!)
He looked at both and said "Hmmm, yes...yes, there is bone there now where it was resected."
Finally an answer. The rib DID grow back... which you can clearly see in the picture. Probably because she was twelve when she had the first resection, and possibly not enough rib was removed. (She did have pain relief for eight years.)

So the bottom line of the consult is this, we learned she is dealing with Neurogenic & Arterial TOS.
Her cervical ribs are not very big, more like an elongated transverse process on C7 spine.
The physicians assistant said they call them 'nubbins'.
We learned the doctor utilizes Subclavian (collarbone area) surgical approach and not Transaxillary (armpit).
We learned that the decision is hers, when she feels the risk of surgery is worth taking because her pain has become unbearable.
Would surgery give relief? The doctor was not sure.
What is causing the daughter new pain?  The doctor didn't know.

We rode home feeling deflated.

We had hoped for more explanation, more conversation, more answers to questions.
I had hoped for the possibility of preemptive treatment that would spare her having to live in intolerable pain before getting relief.
And remember, this was supposed to be my consult, and many of my symptoms are the same as my daughters, so the answers he gave her affect me too.

At this point, it looks like we are going to buckle up for the long road ahead with TOS.
Back to the drawing board. Look into pain relief techniques, ways to manage life with the limits TOS brings with it.

End of the year updates 2013

First, much love and appreciation for those who have contacted us and expressed questions, thanks, and shared their own TOS journeys with us. It means more to me, to us, than you know to be able to share this journey with you and hopefully encourage each other along the way.

So the daughter and I trekked to a University hospital a week ago so she could get the testing that I was supposed to get. I let her jump the line because I think she needs relief more than I do, and because I'm a mom.

She had EMG, nerve testing, very painful, needles poking around to test nerve function. The frustrating part was the person doing the EMG commented they "...do not really believe in all this 'TOS' so much..."  Which makes me flippin' crazy. I reminded my daughter that technician is not a Doctor, so they can have their opinion, but its not worth so much.  (Images borrowed from google).

Then we waited around two hours to go for CT scan, laying on stomach with arms overhead, head facing one direction. The scan was with contrast, which if you've had done you know has interesting warm sensations as it goes through your system and leaves you jittery afterwards (actual picture of daughter with contrast stuck in her arm below). They had to turn her over when the scan was done because her arms were numb. Not a great day for the daughter. Now we wait til early January to go back for more tests and the Doctor consult.

This physician, (I am told by a fellow TOSer who was kind enough to share their experience with me from the facebook TOS group-thanks!), does remove the cervical ribs, and he does utilize supracervical approach. This is good news because our previous Doctor uses transaxillary approach and we wanted a different opinion, to see if removing the cervical ribs would be preferable.
So...here we go, contiuing down the TOS road in 2014. Scary, but I just keep hoping for relief, and ya' gotta have hope.
Gentle hugs to all our fellow TOSers! We will keep you updated on this journey.

Why is is called "The Waiting Game"?

...because it is not a fun game.

Once again, we're waiting on referrals and test results.
I wish there were more to report, but those of you dealing with TOS know all to well the run-around we get when we're trying to get answers.

Meanwhile, we have no choice but to wait and deal with the pain that affects our daily lives the best we can.

I am doing well. I had a flareup a couple weeks ago when I went for pool therapy for my hip and the therapist had me in the deep end with my arms up on a floating pool noodle.
It felt fine while I was in the water...but on my drive home the neck and arm ache started and I was kicking myself for putting my arms up in that position...and for two days on ice and pain pills I continued to kick myself.
(The therapist puts me in a floating vest now, no arms up!)

Stay tuned for reports on how my daughter is coping eight years after rib resection with recurring sympotms and what the second opinion doctor has to say.

We'll keep putting one foot in front of the other on this journey...with TOS.

Mini update

I have several things on my 'list of things to try' to see if they bring some TOS relief.
I tried a couple recently.

I thought massage would maybe help loosen tightness.
It felt great while I was getting the massage, an entire hour. The massage therapist was diligent in avoiding my neck areas that cant take pressure...but on my drive home my right arm started burning, aching, and three days of that are enough to convince me to stay away from massage.

I also got some trigger point lidocaine injections in my neck, and for about ten days my arm pain was GONE and I was singing my Dr's praises. But I overdid it last weekend doing yard work, and the arm pain has returned. Maybe the shot wore off? I had a trigger point injection in the left side of my back two years ago and that pain has not returned since, so I'm disappointed this last right side neck injection isn't helping as I had hoped. I will ask about more injections, maybe Dr. didn't hit the right spot?

Also, the ABM sessions are on hold, for now. I plan to return, but I've had some flare up's of pain lately, and my ABM therapist says the brain is not available to learn and change when it is locked in dealing with pain. So, I need to address that first and then I could go back to those sessions.

So that's three things on my 'to try' list that are not panning out as I had hoped.
Next on my list are:
Acupuncture, more trigger point injections, lidocaine patch.

I'll let you know how those work out.

So how are things? Four years later...

I'm so glad I've kept this record of what it was like for me to go through rib resection and healing postop. My four year resection anniversary had me going back to refresh my memory of what I was feeling and experiencing at this time four years ago.
*See new, 4 year postop, pictures at the end of this post. To compare, see postop pictures from 2009 here.

It's interesting to go back and re-read posts from that healing phase. I remember it well.

Truth is, four years after right sided rib resection, I feel a bit stuck in that healing phase...in my mind and emotions. Having rib bone and muscle cut out of my body was dramatic and left me with emotions I am still working on getting past.

The initial healing phase postop was brutal for me because of my nature. I am a very sensitive, type 2 person, always picking up other peoples vibes. I have even been called "touchy".
When I am in pain, my nerves are already on total overload, so any talking, touching, loud noise or movement feels very jarring and abrasive to me. Just ask my husband about trying to comfort me years ago while I was in labor, poor guy. He wanted to help and each time he started rubbing my back I would hiss at him- "Don't touch me!"

However, healing takes time, that cannot be overstated-especially after rib resection surgery where nerves are stretched, things are removed and muscle rearranged. No one can expect to remain still and undisturbed for that extended healing period. I remember feeling so incredibly frazzled all the time after surgery.
Other folks with different natures probably do not experience the same emotional postop healing issues and would take my comments here as overly dramatic. In my experience (and that is what I share here on my blog) that postop phase was traumatic- in fact my psyche has still not recovered. 
Thus, the left sided resection that was recommended, that I realize would spare me from some of the left sided TOS issues I deal with, well it's just too hard for me to fathom signing up for more trauma.

Having said that, my current state is- not too bad.

The long red hair is shorter now. It had to go, too much weight for my TOS neck.

I had additional surgery two years after resection that improved more of my TOS symptoms.

I currently go for ABM (Anat Baniel Method-a type of Feldenkrais) sessions once every two weeks. The mind/body education and gentle movement of this therapy are teaching me how to organize my movements to lessen the stress on my neck, shoulders and upper body. Through this therapy it has become clear that my right side, the side that was resected four years ago, moves more, is free-er, less restricted, and my left side-where I have the bigger cervical rib and still need resection- is more frozen, stiff, and very guarded.

I have many of the common issues I see other TOS folks commenting about on TOS support groups.

Weather affects my pain level.
I have lost upper-body strength from limiting my arm movement.
I juggle a lot of things to minimize the flareup's of TOS pain.
Driving more than a quick trip always leaves me needing pain meds afterward.
I worry about a left-sided blood clot (I'm super careful with that arm when I sleep at night).
I, like most TOSers, continue to seek ideas to manage my life with TOS.

On my list of things to try are; acupuncture, taping, botox injections, Melt method therapy, anti-inflammation diet. My doctor prescribed an antidepressant to help with the pain. I was *very* skeptical and resistant to the idea, but dealing with pain has a way of wearing you down.
I gave in and decided to give it a try. Once I was past the initial startup side effect phase, I am happy to report that I have noticed a reduction in TOS achy pain symptoms.

I take omega 3, B12, magnesium daily. I will be adding vitamin D soon also.

I recently went back to working as an in-home caregiver, very part time, very light duty.

I have gained weight, up two sizes- partly from restricting my activity to avoid TOS pain, partly because donuts make me feel better-at least while I'm eating them.

All-in-all, my life with TOS has its challenges, but they are manageable.

I have found great support and ideas from online TOS groups. I appreciate the people who share their common TOS struggles and encouragement however they can-with suggestions, a word of support, or just offering a place to vent where everyone understands, because we are each living our own journeys... with TOS.


Four-year postop pictures below.
You can see my right resected side is lower than my left side. My neck on the right is straighter also.

The transaxillary scar is barely visible, 2 1/2 inches below the crease.
My armpit is mostly numb, including part of the back of my upper right arm .

 

So that's the scoop four years postop. As always, if you have any TOS questions, don't hesitate to email and ask.

Interview- The daughter

As promised, the interview with the daughter about her continuing journey with TOS.
For some of the backstory, check out this previous post.  It is now seven years since her one-sided rib resection surgery.

So, daughter, how are you feeling lately?
"Lately, I've been having some pain (in my resected arm) and I'm not sure why.
This happens to me occasionally. I haven't been to a doctor about it in over six years, so it's probably time for a check up in the near future.
I don't want to discourage anyone else from surgery by admitting that I still have pain sometimes, because having that surgery was the best thing I could have done. I'd do it again if I had the symptoms in the other arm or (continue to have them) on the same side in the future."

What do you remember about your rib resection surgery?
"I had my surgery done a month before I turned 13. I suppose I should have been more nervous about surgery than I was. But, I  had just witnessed my older brother go through the ordeal a year earlier.

He came through it fine, so I guess I just assumed that it would all be alright."

"I had one nurse who was relatively new, and tried to take my blood pressure in my surgerated arm once or twice. (*I stopped them!) Other than that, it was all fine. Not scary or anything."

*In this photo, two hours after waking up from surgery, she has a keyboard and is sending emails to her friends. The resected arm side of her face droops. Her brothers face also drooped postop. It went away in a few days. She has an automatic morphine pump in her side. She went home with it the next day and it lasted several days. A wonderful thing.

"It took me a while to recover and stop having pain in my arm. Even while I was still having arm pain (postop) I didn't regret surgery. The pain was 10x worse before- constant and terrible.

Even though it took me about a year to stop having pain (after surgery)- it wasn't the same pain as before. I think it might have been due to my nerves being messed with, or agitation caused by physical therapy? I also had a biking accident two months after surgery... oops."

*Yes, eight weeks post-op, she was feeling good and riding a bike. Cringe.

What do you remember about physical therapy?
"Well, I think it's necessary to help build back up movement and muscle and make sure that you don't heal all frozen up. But I think at times, my PT's pushed too much and flared up symptoms. I'm not sure they were used to working with people with TOS?"

Do you feel TOS is affecting your life now, and if so, how?

"It still limits me. I've had to learn my limitations for doing things.
Had to learn to explain my "mutation story" or "extra bones" to people so that they wouldn't hug me too tight, or hit me in the shoulder playfully, or heaven forbid- try and give me a neck rub!

My armpit/back of my arm is numb/hyper sensitive now. If I ever bump into things or get hit there, it feels like I'm being stabbed with needles. I think a nerve of mine was affected a bit in surgery.

Also, carrying purses hurts my neck. I try and always pull through parking spaces because it hurts to crane my neck to back up. Washing my hair takes a long time, and I wake up every night with my arms asleep or in pain because they weren't in the right position.

I use heating bags a lot on my neck when it hurts. I use a nifty little clip for my seatbelt when I drive- which helps a ton! I even bring it with me when I ride in other people's cars."

Ever get pain in non-resected side?
"I've only ever had TOS-y pain in my non-resected arm a handful of times. If I ever started to get constant TOS pain in that arm, I would definitely have surgery.

However, I would definitely glean more knowledge about different ways it can be done, like resecting the cervical rib, or having the surgery above the rib instead of under the arm.

I'm just curious if other people's experiences are better with different kinds of surgery. The only people I know (you and my brother) have had the same surgery and seemingly the same side-effects, so...yeah."

What advice would you give someone new to TOS?

"Learn about the monster- learn what makes it tick. Your life won't be the same, but you will only make it worse if you resent and ignore it and try and carry on like usual.
But don't be discouraged!
If you don't know TOSers, get to know some!
Get advice and gain knowledge about your options, and find people you can empathize with.

I was fortunate I had two other people to go through this with."

~ ~ ~

*I hadn't thought of feeling 'fortunate' that all three of us have to go through this TOS journey... interesting positive outlook on our situation. We do have each other, like a mini TOS Support Group.

Guess that does make us oddly fortunate :)

To my own detriment

So recently I've been tapping away on my trusty laptop alot, violating every one of the tip I've given for avoiding TOS pain.
Sitting in the slouchy recliner.
Laptop on my lap...looking *down* for extended periods.
Also tried to use pruning shears to trim out in the yard.
(What was I thinking?!)


Well I am paying for it today, let me tell you.
OW.
So to all my fellow TOSers out there, be wary of slacking off and not minding the little ways you have come to compensate to avoid pain.
Don't be a slacker like me.
If you suffer with TOS, you know its worth it.

The Journey takes a new twist

Lately I've been back to the familiar cycle of aching, spasms that wear a person out.
Still have not had left side rib resection.
Saw a new Dr. with hopes of some cortisone shots, and a referal for some refresher physical therapy.
I walked out deflated, in tears.
He flug a new diagnosis on me like a stinky wet blanket.
One that I disagree with...but is rolling around in my mind today.

Well who the hec with extra flippin bones in their neck like mine wouldn't develop chronic muscular pain?!

I guess I'm just not fond of 'labels' if they cannot be proven.
And even then, why the focus on the label for the problem and not on educating and equipping people to deal with it? Find some relief?

hmm?

If you've wandered in...

If you've happened to wander upon my blog, be sure to take a minute to back track and read about the beginning, about how my kids both have the same condition and how it has affected our lives.
The labels along the side may be of some help if you are looking for somthing in particular.
I hope you find some helpful tidbits here.
Feel free to email me if you have a question.
"It is what it is."
Life moves on, even with TOS.

One year rib resection anniversary

I read a book recently that greatly helped adjust my attitude toward pain.



My synopsis of the book, Dr Paul Brand talks about the life of lepers, who lose the ability to feel, no pain, and that is what kills them. He goes on to talk about his life experiences with patients and how fear, lonliness, helplessness and other emotions affect our perception of pain.
I gleaned much from this book and highly recommend it to anyone dealing with chronic pain. So much of the pain we feel is in our minds. There is hope to deal with that and live more fully-even with pain.

Hauling buckets of dirt,
pulling and carrying armloads of weeds,
carrying armloads or rocks,
dragging bags or mulch,
planting bushes,
using lightweight weedwacker.
On the anniversary of last years' rib resection,
this is what I was doing.

All in all, I'm better.
I have learned to adapt.
And I try to adjust my attitude.
To not be a victim.
Life is good.
Don't touch my neck or shoulders-raw nerves!
And on rare days when the pain flares,
I take it as divine signal to slow down,
tune in and readjust whatever I'm doing.

My left side is actually affected more than the right one, with my pulse instantly stopping when I just turn my head toward the right-cuts it right off...but I was having more pain on the right side last year.
Doc recommended surgery for the left side whenever I'm ready.
At this point, I'm not.
More than the surgery, the helplessness was excruciating, for me. (I hate asking for help-being dependant).
Even though I'm good now, mostly happy with my surgical outcome.
Not sure I ever will be ready to sign up for another one.

Just when you least expect it, life happens.

I feel the need to reiterate that I am keeping this blog for a dual purpose-
1. To inform and encourage others struggling with TOS.
2. To remind my forgetful self of the details of this journey, with TOS.

With that out of the way, on to the update.
I am stunned.
Things at approximately 10 months post-op have been about 90 percent.
The occasional jabbing.
The awkward numbness when applying deodorant.
The inability to look to my right or left for any prolonged period of time.
Some aching, not enough to need pain meds most days.
Much improved over the constant I-feel-like-I'm-having-a heart-attack-in-my arm-constantly feeling.

I thought I had settled into an acceptable enough place.
Out of the blue, riding around in the truck yesterday running errands with my husband, the familiar ache began.
First in the neck, then down the arm, increasing minute by minute until we had to make a run into a dollar store for some ibuprophen.

Some lunch at a nearby diner-
burger, onion rings & rootbeer if you must know, along with the pain pills were my hope for relief.
We sat in the truck and prayed together, as I felt my spirit being crushed once again by the return of this pain I thought was part of my past.
Such drastic measures I've gone to in order to be rid of this intrusion.
Hot tears stream down my face.
The questions that were dormant for just a few months, now all rise to the surface once again.
The preacher at church today said-
"God does not delight in crushing people."
I thought, really? it sure dosen't feel that way.

I want to believe in goodness.
If there is any, the source must surely be God.
So what exactly He is up to in allowing such suffering is beyond me.
But then so are alot of things.

A fork in the road of my TOS journey

I have decided against having another surgery at this point.
I am just not ready.
It's only been six months since a rib bone was cut out of my body.
It's just too much to soon, even though the right side resection is accomplishing what I had hoped for... so far.
No constant arm aching, neck has not locked up in months.
I cannot express how happy that makes me!

For now, the left side will have to wait on surgical intervention.

So onward I travel, on my lifes journey- with TOS.

Second, third, fourth, and fifth thoughts

I have decided that I made a hasty decision about having the left rib resection.
I was in the presence of my surgeon, who was so pleased to hear of my outcome from the right rib resection that he was all smiles and even asked for a hug-which is quite the opposite of the first time I met and spoke with him about our son several years ago...he seemed to have quite a 'god-complex' back then.

So now I am thinking it over. I'm still on the schedule, but Im feeling pretty sure by weeks end I will cancel the surgery.
I am just not up to spending another 3-4 months being dependant and healing and in so much pain again...not right now, not so soon.

I believe a large part of my current issue is the weight I've gained from being inactive, thus the chest size has gone up and that impacts my shoulders and arms greatly. The bra straps that dig in are a problem too.

I believe if I lost the extra weight I've gained, and stopped wearing a sports bra thats too tight, that my left side TOS symptoms may very well feel alot better.
I think I want to give it a try before committing to being cut open again.
I think.

There is the insurance-which is paid up for the year...
but how lame is it that I would let that dictate to me to have a surgery before I really feel its necessary?!
Yeah.
So Im mulling it over.
Pretty sure I'm going to put it off though.
and now you know.
If I'm doing the wrong thing, please feel free to comment and let me know.
Thats the scoop.

Dealing with it

Life goes on after diagnosis of TOS.
I've spent so much of the last year learning about TOS, on forums, trying to get a grip on what to ask, what to do to find help for myself.
Sometimes it has been too much.
Too much focusing on myself and my problems.
Too overwhealming to think about this thing that I have no control over that has a mind of its own.

Life goes on, with whatever problems we have to face.
Changes come up in life and you have to find a way to roll with it.

So thats what I'm doing, the best that I can anyway.
A little slower than before, but moving along nonetheless.
Pain pills and prayer are always at my disposal when needed, which is regularly.
I am thankful for both!

and the stubborn streak lives!

I overdid it today, drove, shopped, I'm THROBBING on pain meds now.
I've become such a wimp, it feels good to accomplish something...at least until it hurts so much I have to stop.

Since my last doc appointment I've been pretty discouraged.
Then I heard a lady on tv who had cancer say her doctor told her she didn't have an expiration date stamped on the bottom of her foot.
So, with that in mind, I decided yesterday that my doc can't look at me and tell me what I can not do.

That was yesterday.
Time to get off this blasted computer and go chill...this thing makes my symptoms flare up something fierce.