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.

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.

Givin' up some praise

I recently took part in a TOS survey.

One of the questions asked if I used social media to praise or give credit to my doctors/surgeons. Another question asked if I used social media to refer others to the doctors who have treated me for TOS.

I have and will continue to refer people to my TOS doctor.
But I must confess, I have not given proper acknowledgement nor been nearly as thankful as I should have been for the treacherous work he does attempting to fix peoples bodies. I mean, he literally gets inside, delicately rearranges the things that cause pain- it's just amazing to me the work that fine surgeons do!  The possibilities for renewed life and hope people can have through the work doctors do...so awesome.

Nurses, a caring nurse is seldom thanked for going out of their way to do extra little things to make their patients more comfortable. We leave the hospital and move on with our lives. I know for myself, I intended to send a few thank you notes to some nurses that never got sent in the postop haze of life.
But I do remember them. And I am so very thankful for the nurses who were excellent in their care of me and my kids after our rib resection surgeries.

I think what has me expressing all this gratefulness is that our personal family doctor moved away recently, and I will miss that doctor greatly.

Unfortunately it seems to be true in life, you don't appreciate what you have sometimes until it's gone.
A doctor who listens...really listens, takes time, works with you, and takes you seriously is a treasure.

A treasure that all of us with TOS should be thankful for.
Don't be afraid to tell your doctor you appreciate them either.

After my sons rib resection, he was all healed and back to normal teenage life, playing football.
I sent his surgeon a thank you note with a picture of my son in his football uniform, so he could see that he had indeed helped restore him to a normal life.

We've all read about and even experienced alot of difficult situations regarding some doctors lack of care . It's easy to find the bad stories.

Let's try to give equal time to those in the medical profession who have done a good job and are worthy of our respect and appreciation.

When you have a child, or in my case two kids with TOS, and they are in constant pain, and a doctor does his best to help them, and your child goes on to live life and not have so much pain--that is worth more than words can even say!

So to all the TOS surgeons, physical therapists, nurses, pharmacists, all those in the medical profession who have dedicated themselves to helping ease our suffering-
@>--Thank You!

My Doctor

I am happy to see the vascular/TOS surgeon who has treated my son, my daughter, and myself for TOS now has a web presence. Dr. John Collins Jr. at Borgess Hospital, Kalamazoo, (South West) Michigan. He knows his stuff! My decision to delay rib resection on my left side has nothing to do with my doctor and everything to do with recovery. And a bit of stubbornness. I hate depending on people to help me while recovering. Hate it. We are fortunate to have him and his TOS clinic in the area. If you're looking for a good TOS doctor in the midwest, I recommend him. http://www.mysurgicalgroup.com/ThoracicOutletSyndrome.html

TOS specific MRI

I am pleased to have corresponded with Dr. Werden and to include a link to his website on this blog. After reviewing the information on his site, I wish I lived closer to California so I could consult with him. For my fellow TOSers who do live closer, looks like a great option to pursue. We need all the options we can get! http://www.tosmri.com/index.html

Tension Myositis Syndrome -Maybe it really is all in your head after all!

"Be a professional apple-bobber!"

"...or a soccer ball tester."
"...or a grape stomper/juice maker."

These are some of the ideas I've received after I tell people about my doctors assesment of my employability at my appointment with him today.



When I asked my doc about going back to work and what I had to avoid he said-

"NO doing any; overhead, shoulder level, repetitive arm motion, lifting, or office work using a computer/mouse. No excessive talking on the phone without a headset."

But other than that, I can totally go back to work. (smirk)

So if you have any bright ideas what someone might do to be gainfully employed without using their arms, feel free to suggest!

I'm an Ogre, or an onion

I really am in a bit of shock after my doctor's appointment today.
Doc acts like its perfectly 'normal' to have shooting jabbing stabbing pain down my arm. At least for the whole two minutes he had to talk to me before leaving the room.

I'm just flabbergasted b/c my kids both did great, and now here I am feeling so stupid for going ahead with this rib resection, over-riding my own doubts.

Honestly, I feel my family sorta pressured me into the surgery b/c they were concerned for me and tired of my hurting all the time and just wanted me 'fixed'. But now instead of being fixed I'm just complicated!

The last thing I wanted to hear today from my doctor was that -"You're(I'm) an onion with layers of problems."
Yep, he actually said that to me.

Remember from the movie Shrek-

". . .Layers. Onions have layers. Ogres have layers.
Onions have layers. You get it? We both have layers.
-Oh, you both have layers. Oh. You know, not everybody likes onions."

I really do not know how to mentally deal with this. Instead of progressing and getting better I am feeling like my life is regressing.

My doctor is an old military surgeon, and sure he knows his stuff, but he almost has a suck it up attitude.
I dont have alot of suckitup in me, I'm a wimp.

I never figured being bent and twisted into my life plans.
It is what it is I suppose.

Might explain all the crying...ha.

All I can do is keep on keepin' on.

Doctor visits and sleeping situations~

I saw my doctor/surgeon today.
He looked at my underarm scar,asked how I was doing, asked me to lift my arm up as high as I could, said I was doing well for 3 weeks post op.
I talked to him about my shoulder being frozen, and the chest soreness, he explained some shoulder anatomy to me and said its all normal for the healing process and he is pleased to hear that much of my TOS symptoms are gone now...(the TOS throbbing, not the healing from surgery throbbing-yes, I can tell a difference).

"Keep up with the exersizes-twice daily, and check back in 3 weeks."

ok.

So I will dutifully follow his orders and see where I am in 3 weeks.
I've been so inactive for months that just the little trip to the doc and stopping at a couple yard sales on the way home have made me so sore now.
I did find some fat pants at the yard sale though, which I unfortunately need.

I slept in my bed last night for the first time in 3 weeks.
Made an incline/wedge out of pillows and blankets...which all fell apart in the middle of the night so it feels like my back has those knives stuck in it again.

Motrin's not cuttin it today....ugh.
That's day 24 for ya.