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.

TOS ~ Life XIX

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.

Our kids' TOS-the daughter

So you know our son had TOS, a rib resection, and did fabulous.
The following summer his kid sister grew a couple inches and began... having arm pain.
Yes, here we go again.
We xrayed. There were bilateral cervical ribs.
We tried some physical therapy for a few months, to no avail.
We requested a consult with our sons surgeon.
He did the tests, recommended a rib resection.
So, the summer of 2005, our daughter had a right rib resection.
She did great, she even emailed her friends from the hospital within hours of waking up from surgery!
She went home the next day.
Six weeks later, she was riding a bike and loving life again.
She did a month of physical therapy.
Shes doing great now.

Her only complaint, as is our sons, is that her armpit is numbish, which makes shaving difficult.
But the arm ache is gone.

So after all that, when I showed up 2&1/2 years later to see the sugeon for myself, I suggested we should get a punch card discount family plan for these rib resections!!
And I meant it:)