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.

Cervical Ribs-Do they always cause TOS?

Since my son, daughter, and I were diagnosed with cervical ribs and Thoracic Outlet Syndrome, I have read statements regarding cervical ribs rarely causing problems that made me question their validity in light of my own experience.

Statements like: From the UCLA Vascular Surgery website-
"Some people are born with an extra rib called a "cervical rib". Although most often this causes no particular problem..." 

Or this statement from The Journal of Bone and Joint Surgery-
"It is estimated that only 10 per cent of cervical ribs cause symptoms."

Reading statements like those causes my one eye to squint as I mutter "yeah, right", sarcastically.
It's tough for me to swallow that's the truth when three out of three in my family with cervical ribs have developed TOS.

But then I got to thinking...

It's true that for most of my own life, I didn't even know I had cervical ribs, not until my early thirties, and I lived just fine.
I had no arm pain. I participated in sports. The cervical ribs were there but caused no problems for me.
Some neck issues started in early adulthood, and then a car accident several years ago, and I've not been the same since.

I've read that TOS can develop in previously normally functioning people after a traumatic event such as an accident or a fall.

For my kids, they were also born with cervical ribs but we had no idea. They were normal kids and rode bikes, were active and had no symptoms...until puberty kicked in and they each went through a growth spurt around age 13/14. Then their arms started aching just from walking around. We went to the doctor and learned about the ribs and TOS.

I have experienced living with cervical ribs and having no problems, the first 19 years of my life.
I've also experienced painful physical issues that have developed because of them.

Recently it has been hard for me to believe people with cervical ribs do not have pain or function issues. I think living with chronic pain makes you forget what it was like to not have the pain.

But looking back, I see that my kids and I all lived just fine, for a time, with our extra ribs.
And then we didn't, which began our journey with Thoracic Outlet Syndrome.

So when someone asks me if having cervical ribs always means you have or will develop Thoracic Outlet Syndrome, I say, I'm no medical expert, but I've read that not everyone does. Three out of three in our family have, but lots of people don't have problems with their cervical ribs...so I'm told.

TOS...it's complicated.

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 - son and daughter, have the same condition and how it has affected our lives. I blogged my way through healing from rib resection, and my continuing journey...with TOS.

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.

How I was diagnosed - A 20 Year Journey

"I can make a diagnosis of thoracic outlet syndrome but the etiological factor can escape at the present time unless there is a severe case of a large cervical rib."
-Carlos A. Selmonosky, M.D

~ ~ ~

I was recently asked how I was diagnosed with Thoracic Outlet Syndrome.
The answer is complicated, as it seems to be for most folks with TOS.

I began with symptoms of Torticollis in 1987, with many repeated rounds of neck-locking up occuring, followed by meds, physical therapy, xrays, MRI's, CAT scans, referrals, chiropracters, at home traction, neck braces, TEN's unit...you name it-I tried it.

I went on living normally inbetween these episodes of frozen neck until 2003.
I was in a car accident and the whiplash stopped me in my tracks.
I was sent for more x-rays and physical therapy.
When three months of that only left me in more pain, I sought out yet another chiropracter, who upon inspection of my xrays, informed me I have cervical ribs.

All those years, all those tests and Doctors and xrays and no one thought to point out to me I have these two extra bones in the area where I have had so much pain.

I began reading and learning about cervical ribs, and continued attempting therapy at home.
The following summer my son went through a growth spurt and his arms began aching terribly. When xrayed, it was noted he has cervical ribs and would need to consult a specialist for possible surgical decompression.



It was in the appointment with my sons surgeon, as he was receiving his diagnosis of TOS, that I knew I also have TOS.
But it would be four more years before I would visit the same doctor for my own symptoms...because my teenage daughter cropped up one year after my son with arm pain and-you guessed it--cervical ribs and TOS!

So eighteen months after my daughter went through surgical decompression, I decided pills and physical therapy, massage and deep breathing were not going to change the situation with these extra bones causing pain in my body.
Besides, if my kids could be brave enough to go through rib resection, so could I!

Once I went to see our family TOS surgeon, I was an easy diagnosis.
My Dr. ran tests-the in office tests-bp, raise hands, twist, turn, strength check, push, pull--then Doppler tests, MRI, x-ray.
Doctor said with my history, my childrens history, and the cervical ribs it was plain as day I have TOS and could benefit from decompression.

And there you have it, my Twenty year journey to a diagnosis.