Tuesday, April 22, 2014

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 me 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 98%, but the rest 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 is indeed knowledgeable about TOS. He believes exterior muscles in my neck are overcompensating for surgically removed muscle, and interior muscles are lazy and not working properly. He also mentioned that I healed postop 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 cervical rib. Oh joy.
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. To begin retraining my neck muscles, I am to lie flat, and imagine a rod through my temples and 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 that 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 on 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 hoping for results. And mostly they all just caused me a lot of unnecessary pain.
That said, I have hope that this p.t. knows TOS, 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~

So true...


Wednesday, April 9, 2014

TOS reading - ebook

http://www.docstoc.com/docs/126375816/Thoracic-Outlet-Syndrome

Good, concise information on TOS!
If you're new to TOS and want to understand what is involved in testing, diagnosis and treatment, this is an easy read and will answer most of your questions.

Monday, March 24, 2014

Our experience with postop pain pump

Each of the three of us had a pain pump we went home with postop. A simple gravity fed pump attached to tubing that was inserted in tiny incision under the arm. It had a strap and we pinned it on our shirt to prevent it from falling.  It looked something like this, thought I do not know the exact brand.

It provided glorious pain relief for the first 48 hours after going home, morphine I believe.
 A friend who is a nurse came over and removed it because I was squeamish, but I could do it now that I've seen and experienced it.

Highly recommended.

Friday, March 14, 2014

Big TOS Medical Word of the Day - Hyperalgesia

Hyperalgesia = increased sensitivity to pain or enhanced intensity of pain sensation

http://www.merriam-webster.com/medical/hyperalgesia

This happened to all three of us, the back of our arms have spots that are numbish, sensitive, hard to explain but we all have it. Maybe nerves were stretched and didn't fully recover postop? It's not a problem for us unless a dog or a kid or unknowing person taps or touches just the wrong spot on the back of the arm....eeek.

Wednesday, March 12, 2014

TOS Diet days 28, 29, 30-Final

I got a copy of my medical records from when I had rib resection last week. 
The first thing I noted was that I was, at the time of surgery-almost five years ago, 37 lbs lighter than I am now.
I began the TOS Diet journey using a few different materials as inspiration. One is the book Diet for a Pain Free Life.
The main point of the book is excess weight leads to increased inflammation and thereby increased pain.
There are recommendations in the book I disagree with, such as: using sugar substitutes, moderate soy consumption. I do agree that excess weight may be a contributing factor, one of many, in my own pain cycle.

The smoothies will always be part of my diet. Gas and bloating can be an issue at times, but the absorbable nutrients can't be beat.
Much of my struggle with My TOS Diet was regarding coffee consumption.  You will probably not be surprised to know I am back to my daily one large cup of caffeinated coffee. 
I continue to cut out refined foods, sugar, white carbs. 
Having said all that, it seems to me nerve pain does not care what I eat. I have low pain days and bad pain flareup days, even when I've been virtually perfect in my anti-inflammatory diet.
And for me, when pain gets reeeeally bad, I want to self-soothe with food so much! A cookie or three, a vanilla shake, some dark chocolate. After all, I deserve some happiness in life with all I have to endure-right?!

So I apologize if my TOS Diet wrap up is a bit of a let-down. I'm disappointed too.  I was hoping for more of a wondrous change. I still think diet does play a part in pain issues, and I'll keep at it as best I can.
Gentle hugs to all my fellow TOSers~