[rbn4jsus]

Hello to all,
My two teenage kids & I all have cervical ribs. My kids have each had a rib resection due to arm pain. I've had recurring episodes for 20 years, chronically since an auto accident 5 years ago.
My question is-I know and trust the surgeon who did surgery for my kids. He runs a TOS clinic, and I've consulted with him about my situation. I have A-TOS, surgery is recommended. I might like a second opinion, but everyone I call requires a referral from the diagnosing doctor. Why??
In the land of the free, I cant just gather my records and test results, xray & mri's and go see a doctor for a second opinion?!?
I dont want to infer that I dont trust the opinion of the surgeon who has helped my kids by asking for a referral. And I dont feel I NEED a second opinion, im just curious.
What do you think?
Did all of you who've had rib resection surgery get 2nd opinions?
Did you get referrals from your diagnosing doc?
Thanks for your thoughts and experiences-its awesome to know I'm not alone.
~Robin

[(Broken Wings)]

Originally Posted by rbn4jsus

Hello to all,
My two teenage kids & I all have cervical ribs. My kids have each had a rib resection due to arm pain. I've had recurring episodes for 20 years, chronically since an auto accident 5 years ago.
My question is-I know and trust the surgeon who did surgery for my kids. He runs a TOS clinic, and I've consulted with him about my situation. I have A-TOS, surgery is recommended. I might like a second opinion, but everyone I call requires a referral from the diagnosing doctor. Why??
In the land of the free, I cant just gather my records and test results, xray & mri's and go see a doctor for a second opinion?!?
I dont want to infer that I dont trust the opinion of the surgeon who has helped my kids by asking for a referral. And I dont feel I NEED a second opinion, im just curious.
What do you think?
Did all of you who've had rib resection surgery get 2nd opinions?
Did you get referrals from your diagnosing doc?
Thanks for your thoughts and experiences-its awesome to know I'm not alone.
~Robin

Yea, you need a second opinion, but take it with a grain of salt. I had too many opinions. Are you comfortable with the 1st doc? I still would want to get more advice and understanding for your unique problems.

[tied]

some insurance requires a referral in order for the visit to be covered. in the land of the free it costs to be free.

i am nagging the hospice for a prescription for a lift recliner. 2 days of nagging so far. dad is depressed that his wife may not live long enuf for this his probably last gift to her. the chair dealer can give us a $400 medicare credit with scrip, or we can pay full price and #$%^( medicare.

docs get punished the more they spend so they may not see 2nd opinions & chairs as necessary.

[dabbo]

I have had mixed/positive results with 2nd opinons- I didn't particularly care for the 1st doc I saw, but the 2nd doc poked at me ith a pin, and said he could move my ulnar nerve to the inside of my elbow . Never went back to him....
So, I went back to the first doc, got referred to my Pain mgmt doc. About once a year I go see a vascular surgeon for a fresh look at me, and so far, they didn't recommend surgery.

[gibbrn]

hi Robin,

Just make sure you are comfortable with whatever doctor you choose or go to and don't let any of them hurt you during the exams!! I have seen many many doctors to get to a vascular surgeon who didn't tell me it was in my head or I had to go and live in pain. (I'm in Canada)

Make sure you know the doctor and his/her track record and know that they have done the surgery lots of times as it is tricky and should NOT be done by just any doc. ....okay reading backwards see that you do!! That is a huge bonus!!!! Now in saying that, Arterial TOS is NOTHING TO MESS WITH. I'm sure you know this and likely have been told this. It could be a MAJOR issue very quickly at any time. I only say this having had a 90% occlusion in my subclavian artery and vein and having my 1st rib removed along with a scalene and I am blessed with bilateral cervical ribs.

It is your comfort and your body so if you are SURE then you are SURE. Comfort and knowing a good surgeon are 2 of the most important things in a tos surgery consideration.....the other in my mind is urgency. Only you can do the next thing necessary........

Welcome to our community glad to have you!! I am sure you have some advice to give us too!!

love and hugs,
Victoria

[astern]

It's been my experience that Insurance companies WANT you to have a 2nd or 3rd opinion BEFORE having a major surgery.

When I was first dx with TOS, the neurologist said I needed a surgery but he would not be the one to do it. 2 years later when the pain was unbearable, my GP wanted ME to find a surgeon (result: failed surgery and damage beyond the TOS). That's when Beth took me aside and recommended Dr Annest in Denver. One visit to him and it was like suddenly, someone KNEW what to do and had the experience to DO IT! My confidence level increased 1000%.

Analogy: If your refrigerator had a short in the wiring, you'd take it to a refrigerator repair place. Not an auto mechanic. Sure, an auto mechanic may have knowledge of wiring and electricity, but how many refrigerators has he repaired? And would going to an auto mechanic void the warranty on the frig.?

[rbn4jsus]

I've called around for appointments with a few well known TOD docs-I've heard 3 times now that my current doc has to refer me...thats bs, my ins. co dosent require it, and with the great outcome both my kids have had with their rib resections-i dont want to jeopardize my relationship with my doc here close to home whos done so well for my kids by asking for a referal....grrr.
I'm calling a couple more docs tomorrow-but if I get the run around Im just going with my guy the forst week of April...
frustrating.
I dont feel I NEED a 2nd opinion, just wold feel more responsible if I got one I guess.
thats my update...cheers!

[Jomar]

How frustrating...
good luck with your next batch of calls.

[rmurphy7978]

I would love a 2nd opinion since my vascular surgeon told me that I need surgery. I asked what my other options were and he said point blank "nothing". I do not have an extra cervical rib, my 1st and 2nd ribs don't "stay down" and he wants to remove the 1st rib and do a scalenectomy. I just don't know about this but I don't know of any other vascular surgeons in Pittsburgh that deal with TOS.

[Jomar]

Hi Murphy,
did you check our-DOCTORS & PTs List and saved PT info threads -
http://neurotalk.psychcentral.com/thread135.html
There might be new ones out there since this list is about 2 yrs old.

are you hyper mobile, is that a part of why the ribs keep popping up?

but I would guess that spasmodic neck muscles are what is actually pulling them up..scalenes and/or SCM

Do you feel you have/had the neck tightness under control at some point? Were your sx less at that time?
For myself , I have to keep my neck, pec minor & upper back muscles loose or I will start to flare with sx.

If you have ever been in a car accident or played rough sports or had a hit to the head/neck or shoulders you might consider a very good chiro esp one that uses many other modalities for pain relief.
I don't know how you feel about that option, but the one I found sure was/is a great help for me.

one thing is surgeon will usually advocate for surgery

did you have any tests that showed a visible reason for surgery?
sorry if you said so already..
large bones or other large structures causing a compression?
possible scar tissue ??- I think you can get this even from soft tissue damages if you have a tendency from producing scar tissue.
extra large scalenes or anomalies in the area compressing the vascular structures?

just tossing these out, I think I would want some sort of proof that surgery was really needed and not just one surgeons opinion.