[Biologybrain]

I'm a newbie and reading some of your posts is kind of comforting because I don't know anyone else with TOS or anything similar. I have some questions based on what I've read from you and what I personally have experienced. I know none of us are the same, but you are probably the most educated about TOS. Please, if you have the time, answer some of my questions. I'm working on filing disability & I'd like to know if most of my symptoms are purely TOS or if I've just got all kinds of crazy things going on at the same time.

1) Does your breastbone pop and/or feel pulled out of place on occasion? (It really hurts)

2) Do your chest muscles (pectoralis major/minor) across your breast bone spasm? (Sometimes to the point of painful breathing and often brought on by sneezing, a deep breath, coughing, or stretching those muscles)

3) Do your upper ribs pop and/or move out of place often? (Kind of related to question 1)

4) Is your chest sensitive to touch? (Painful kind of like thousands of needles simultaneously with sometimes very sharp pain)

5) Is the back of your arm(s) numb, but at the same time exceptionally painfully sensitive? (Light touch isn't felt, but a slight pinch is extraordinarily painful)

6) Do you have a large knot in your bicep area during painful flare-ups? (Kind of painful to palpation, but not painful without touch)

7) Does your collarbone kind of disappear from swelling during a flare-up? (Instead of a hollow above & below the collarbone the surface is smooth)

8) Are some of your flare-ups apparently random? (no weather/barometer change or stress from exercise/etc)

Thanks in advance for answering my questions.

My TOS didn't start until I had a lot of surgical trauma (and experienced PN from chemotherapy) to my chest from breast cancer. The surgical biopsy (basically a lumpectomy without anesthesia--because I was 20 weeks pregnant) of my tumor (2.5") was in the left axilla area. During my mastectomy, my skin was left about 3mm thick over an area roughly the size of an 8x11-1/2" sheet of paper in both sides. My pectorals major muscle was also raised from its anatomical home in order to place expander/implants for reconstruction. During that process the lower portion of the pectoralis major was also permanently cut away from its attachment points on my ribs.

Since that first major surgery, I've had horrible pains, muscle spasms, and wonky nerves in my chest, neck, upper back, and arms. I ended up having 2 other surgeries for reconstruction (one was for placement of 'permanent' implants, the other was removal of the implants with reconstruction with abdominal tissue) in an effort to relieve the constant pain in my chest, collarbones, and arms. I did physical therapy after the last reconstruction for almost a year with no real success. At this point my pectoralis major muscle has adhered to my skin with scar tissue/adhesions so when my pectoral muscles contract, my skin wrinkles and distorts just like the muscle must.

Since chemo aggravated my peripheral nerves, I've wondered if some of my extreme pain/sensitivity of TOS is simply bc all my nerves were at least slightly damaged from the chemotherapy. Prior to cancer I had a terrific pain tolerance, not so anymore.

My last 4 years:
7/7/09 Diagnosed with Stage 2B BRCA1 breast cancer in axillary tail of left breast while 20 weeks pregnant by excisional biopsy (lumpectomy) without anesthesia
7/31/09 port placed, started FAC chemo/1st FMLA leave granted
11/27/09 delivered healthy baby girl (8#4oz)
1/2/10 began Taxotere chemotherapy
1/16/10 switch from Taxotere to Taxol because of PN & slight allergic rx
1/30/10 all chemo halted because of worsening PN & allergic rx
2/19/10 bilateral radical mastectomy, skin & nipple sparing with expander implant reconstruction, port removed
41/10 returned to work with FMLA approval for flare-ups (continued until dismissal)
7/2/10 oophorectomy & implant exchange surgery cancelled due to low neutrophils
8/28/10 tubes & ovaries removed, implant exchanged cancelled due to excessive internal bleeding requiring 2 transfusions
10/2/10 emergency hysterectomy due to abscess on uterus from previous surgery
2/17/11 implant exchange surgery
4/?/11 began seeing a pain management dr (what a crock)
10/29/11 autologous TRAM flap reconstruction/implants removed
11/15/11 began physical therapy
12/?/11 EMG & vascular studies show brachial plexopathy -- PT continued
5/14/12 1st rib resection for TOS
8/?/12 sent by employer for 2nd opinion = same diagnosis
12/31/12 PT discontinued due to insurance & nothing further to be taught & increasing harassment at work
1/11/13 dismissed after almost 9 years of commended work due to absences & falsely accused work difficulties/inadequacies
4/15/13 SSDI application filed with lawyer
8/10/13 General Medical Exam ordered by SSDI

[jkl626]

Hi,
I'm sorry you have gone through so much already. I was diagnosed with nTOS (probably from Repetitve Strain from work)1.5 years ago, Degenerative disc Disease 2.5 years ago-. I was then diagnosed with Breast Cancer 6 months ago. i havent had surgery yet, and the dr's dont think the two conditions are related. However I do have bone lesions on both left and right ribs. I havent had surgery yet.

it seems like TOS is different things for different people.I'm not familiar with some of your symptoms but there may be others who are. Its quite possible the trauma to your pec minor and nerves have caused your symptoms. If you had radiation it can damage your nerves too. I dont have chest pain,although I had pec minor pain. Mine is mostly rib,underarm and arm pain and numbness. I have had some luck with PT and now Nuerontin is helping.

I have not applied for disability but have looked into it. It is easier to get it for BC than for TOS as it is not a known/common disease and is still a controversial diagnosis. If I were to apply and I may-I would use the BC diagnosis. Good Luck, JKL

[Jomar]

Wow, some of it sounds like it could be TOS related , but some of it could be due to scar tissue , or even RSD/CRPS...

Have you been evaluated for hypermobility? All the popping and such could be due to extreme mobility of the joints.. and any muscle spams can make it even more so..

Did your PT try any IF stim, low level laser, ultrasound for pain relief?
Any manual trigger point work? TrPs really need to be resolved before muscles/spasms can be successfully worked on..

Explore our SSDI forum for tips & help on that process..there's a sticky on tips for starting a claim..very helpful.
http://neurotalk.psychcentral.com/forum28.html

From what I understand, it isn't necessarily the dx's themselves that help with SSDI , it is that you can not do any gainful work.

[20YrsTOS]

Originally Posted by Biologybrain

I'm a newbie and reading some of your posts is kind of comforting because I don't know anyone else with TOS or anything similar. I have some questions based on what I've read from you and what I personally have experienced. I know none of us are the same, but you are probably the most educated about TOS. Please, if you have the time, answer some of my questions. I'm working on filing disability & I'd like to know if most of my symptoms are purely TOS or if I've just got all kinds of crazy things going on at the same time.

1) Does your breastbone pop and/or feel pulled out of place on occasion? (It really hurts)

2) Do your chest muscles (pectoralis major/minor) across your breast bone spasm? (Sometimes to the point of painful breathing and often brought on by sneezing, a deep breath, coughing, or stretching those muscles)

3) Do your upper ribs pop and/or move out of place often? (Kind of related to question 1)

4) Is your chest sensitive to touch? (Painful kind of like thousands of needles simultaneously with sometimes very sharp pain)

5) Is the back of your arm(s) numb, but at the same time exceptionally painfully sensitive? (Light touch isn't felt, but a slight pinch is extraordinarily painful)

6) Do you have a large knot in your bicep area during painful flare-ups? (Kind of painful to palpation, but not painful without touch)

7) Does your collarbone kind of disappear from swelling during a flare-up? (Instead of a hollow above & below the collarbone the surface is smooth)

8) Are some of your flare-ups apparently random? (no weather/barometer change or stress from exercise/etc)

Thanks in advance for answering my questions.

My TOS didn't start until I had a lot of surgical trauma (and experienced PN from chemotherapy) to my chest from breast cancer. The surgical biopsy (basically a lumpectomy without anesthesia--because I was 20 weeks pregnant) of my tumor (2.5") was in the left axilla area. During my mastectomy, my skin was left about 3mm thick over an area roughly the size of an 8x11-1/2" sheet of paper in both sides. My pectorals major muscle was also raised from its anatomical home in order to place expander/implants for reconstruction. During that process the lower portion of the pectoralis major was also permanently cut away from its attachment points on my ribs.

Since that first major surgery, I've had horrible pains, muscle spasms, and wonky nerves in my chest, neck, upper back, and arms. I ended up having 2 other surgeries for reconstruction (one was for placement of 'permanent' implants, the other was removal of the implants with reconstruction with abdominal tissue) in an effort to relieve the constant pain in my chest, collarbones, and arms. I did physical therapy after the last reconstruction for almost a year with no real success. At this point my pectoralis major muscle has adhered to my skin with scar tissue/adhesions so when my pectoral muscles contract, my skin wrinkles and distorts just like the muscle must.

Since chemo aggravated my peripheral nerves, I've wondered if some of my extreme pain/sensitivity of TOS is simply bc all my nerves were at least slightly damaged from the chemotherapy. Prior to cancer I had a terrific pain tolerance, not so anymore.

My last 4 years:
7/7/09 Diagnosed with Stage 2B BRCA1 breast cancer in axillary tail of left breast while 20 weeks pregnant by excisional biopsy (lumpectomy) without anesthesia
7/31/09 port placed, started FAC chemo/1st FMLA leave granted
11/27/09 delivered healthy baby girl (8#4oz)
1/2/10 began Taxotere chemotherapy
1/16/10 switch from Taxotere to Taxol because of PN & slight allergic rx
1/30/10 all chemo halted because of worsening PN & allergic rx
2/19/10 bilateral radical mastectomy, skin & nipple sparing with expander implant reconstruction, port removed
41/10 returned to work with FMLA approval for flare-ups (continued until dismissal)
7/2/10 oophorectomy & implant exchange surgery cancelled due to low neutrophils
8/28/10 tubes & ovaries removed, implant exchanged cancelled due to excessive internal bleeding requiring 2 transfusions
10/2/10 emergency hysterectomy due to abscess on uterus from previous surgery
2/17/11 implant exchange surgery
4/?/11 began seeing a pain management dr (what a crock)
10/29/11 autologous TRAM flap reconstruction/implants removed
11/15/11 began physical therapy
12/?/11 EMG & vascular studies show brachial plexopathy -- PT continued
5/14/12 1st rib resection for TOS
8/?/12 sent by employer for 2nd opinion = same diagnosis
12/31/12 PT discontinued due to insurance & nothing further to be taught & increasing harassment at work
1/11/13 dismissed after almost 9 years of commended work due to absences & falsely accused work difficulties/inadequacies
4/15/13 SSDI application filed with lawyer
8/10/13 General Medical Exam ordered by SSDI

Biology, to all of your questions, YES!!! I've been dealing with TOS for over 20yrs, and had two surgeries. Possibly a third one. Every question u wrote, I've had it, or I'm still dealing with them. The chest popping, numbness, etc. I'm sorry for all u are going through. I'm praying for u, and yes all your symptoms are TOS related.

GOD bless u!!!