I'm sorry to hear your news. I have a mammogram on Friday and I worry every time. Like you, I am so deep in TOS world, I'm not sure I have enough space in my head to keep up with other important stuff.

My closest friend was going through breast cancer at the same time I had my rib resection eight years ago. She said she felt guilty because everyone knows what breast cancer is, no one questions if it's real, there are support groups, fundraisers, helpful neighbors organizing meals. For TOS, you're largely on your own. That may be true, but each health crisis has its own unique worries and challenges.

I wish you the best of luck. You are in my thoughts.

JKL, I was out of the country, I just came back after a month. I am sorry to hear about your breast health. But I wish you all the best and pray from my heart for all your issues to get resolved soon. I have many long term breast cancer survivors as friends and family. I have seen them do amazing and they are still doing great. Please keep thinking positive and be strong in spirit. Good luck with everything

JKL -
I just read this whole thread, seems like you have been through A LOT! I'm so sorry to hear of your recent diagnosis but it does sound like you have a great support system and people who know what they are talking about.

I have a question about the PT. How did you feel about Joyce Wilkinson and did you ever see Li-Der Chan? I have been seeing someone and while I think he is a great PT, I don't think he is the right one for TOS. I am trying to get more sessions approved by my WC company and would like to start with someone new when I do.

FYI, there is no way I can handle going to Anaheim for Ando PT as driving is a huge trigger for my flare-ups. Just driving to Santa Monica from Sherman Oaks today (in traffic for an hour), I was in for the last 20 mins.

Hi Sec- Wow that must have taken you a long time!
Joyce did not help me that much- she kept saying she was treating the symptoms and she wasnt very organized with her exercises. Having said that I liked her personally and I was also in critical condition and trying the scalene block and botox aroound that time. Once I started seeing Dr. Ando i stopped seeing her.

There is a pt that studied with Ando and she is on the CFMT list. This is the list where they seem to understand rib mobilization. She is in Malibu and Century City. I spoke to her on the phone once. Her name is Leslie Rudzinski. If I go back to pt I was planning on trying her, Li-Der Chan (have you heard anything about him/) and Karen Joubert in Bev Hills. My husband went to her once and thinks she is a genious. She is on the old TOS list.

Right now I have bigger fish to fry and am seeming to do better without the pt. I want to try more massage. Do you have any dr's or pt's to recommend? Who is your main Dr?
Thanks JKL

Thank you. I will get those other names to WC and see if they will cover any of the PTs. I wish I could get a prescription for straight massage, it seems to be one of the best ways to reduce some of the pain.

My main dr is Gelabert. He is the only person I saw when I was first diagnosed 4+ years ago. I was going through so much stuff in my personal life, it never occurred to me to look at any other options. Now that I am through WC for the recurrence, he is my primary on the case. I really like him though, he explains everything you ask and seems more responsive than most doctors. Or at least his assistant is.

I am going to Dr. Bloze at SCOI to get my EMG/SSEP done again. Was supposed to have it today but there was an issue with the WC authorization. She is the one that initially sent me to Gelabert with a possible TOS diagnosis. Once we do that, I'll have a better idea of next steps.

I havent done the WC or SSI thing yet- I've always wanted to go back to work, but I may have to now. The BC diagnosis will probably be an easier way to go. Do you have a lawyer or are you doing it yourself?

If you aren't working, you should at least be on SDI. If you weren't working for yourself, you should be eligible. I'd definitely look into it! edd.ca.gov

I have an attorney for WC - they are being pretty cooperative so far but we will see. Was your TOS work related?

yes I believe it is caused by repetitive strain (I draw at a drafting table all day) but I wanted to stay with my insurance because it is a ppo. My insurance may run out tho soon-so i am going to look into it.

Hi All,

I had some good news re: my breast cancer yesterday. The medicine I am taking seems to be shrinking the tumor which means it is likely that the bone metasesis are probably receding too. I wont know for sure until I get another mri in 2 weeks, but it was quite a releif. the dr. couldnt even see it to measure it whereas 6 weeks ago it was big and easy to measure. I will be going back to the surgeon after the mri to see if/when I will need surgery. Lots of waiting which is the hardest part. So much support out there though.I found a place which offers free exercise classes and therapy for cancer patients.

If only the TOS was so easy to resolve. Mostly I have just been having muscle pain on both sides.it seems like it is in a different place every day. I only get nerve flare -ups now if I overstretch, get pt, massage or injections.It is usually gone by the next day. I got a new Cervical and Thoracic MRI to make sure there were no tumors pressing on nerves and there are not. It does show severe foraminal narrowing and some facet block hypertrophy (see below) .I saw Dr. Jordan again (before I got the mri) and now he is recomending the facet block injection and radiofrequency, but last time I saw him he recomended the intraforaminal epidural injection with pulsed radiofrequency.so i am confused about which one to do. I guess the FB one targets tiny nerves that originate in the Facet Joints and the epidural targets the large nerve coming from C5-6.the FB one is much less risky, but Dr. Jordan is one of the best to do the intraforaminal. I made another appt to see him this Thursday to go over these results before I decide which one to do-but I am definately going to try one -finally to rule out these as contributers once and for all. I feel i have nothing to lose right now-

I am also determined to find a way to strengthen without flare-ups. On my list to try: Egoscue , a good personal trainer (friend) ,massage therapist who does gentle lymphatic massage. New Physical therapy closer to home with emphasis on pilates or gentle strenghtening.I have 3 or 4 on my list. Still driving to see Dr. Ando once a month,but I got a bad flare up last time. I just have to find the time between all the other dr. appts. Want to go back to part time work soon too-now that I know the BC medicine is working I may be able to concentrate better.


From the report:
C-Spine-
"C5-C6: Mild posterior disc osteophyte complex, which partially effaces the ventral CSF space. Uncovertebral hypertrophy. No spinal canal stenosis. Severe right neural foraminal narrowing.Mild left foraminal narrowing."

Thoracic Spine-
"Known abnormal PET focal uptake along the right medial T3 posterior rib corresponds to lucency on CT image with focal enhancement on MRI likely
representing metastatic focus There is additional focal enhancement involving the left transverse process of T8" (this prob has more to do with the bone metasis)


If anybody has any ideas about the injections let me know-Thanks

Great update. :thankful:

With severe right foraminal stenosis, I would consult a neurosurgeon. I've had both types of injections and got better relief from the medial branch FB. There is also an intra articular FB which injects the joint itself but I doubt that is what he is offering (I've never had this).

With my TOS, I was never able to truly strengthen without flaring prior to the rib resections. We are all different but you may have to give up on strengthening to stay functional.