Saturday, January 11, 2014

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.