fauxgypsy
09-16-2007, 04:19 PM
Since a week or so after my mastectomy I have been having trouble with a feeling of tightness down my arm to my wrist, almost to my thumb. It also is very tight across my chest. It feels like a steel wire from my sternum to my thumb. At first I thought it was tendonitis, but my surgeon said it was a nerve. Didn't feel like a nerve to me. Then the physical therapist, who had no training dealing with mastectomy patients said it was nerve. So maybe I was wrong. About a week into therapy, when I would try to stretch my arm it looked like it was swelling in the bend of my arm and I could see what looked like cords in that area, felt like cords as well. I did an internet search and found information on AWS. Prior to these studies it was called cording but they didn't know what caused it.
To put all of this into context, I discussed physical therapy with my surgeon the first time I talked with him about the surgery. I asked him if there was anyone in our area that was qualified. He said "several." He was wrong. Then we discussed that I would want to have this available as soon as possible after surgery (I make my living doing faux finishes). It took three weeks after surgery to get it set up. In the hospital I asked him about what exercises I should be doing. He said the woman from Reach to Recovery would explain it. She said that they didn't do that anymore because some of the surgeons didn't wat them to and gave me a book. I was in the hospital 4 days and no one would even tell me when to start the exercises or how often.
I took one of the papers on AWS in to the physical therapist. She remarked that she wished people would stay off the internet. I told her that I was tired of the medical community dismissing any thing I brought up. She is probably younger than my youngest daughter and isn't trained for my problem. I have an advanced degree in biology and when I research I don't go to quack sites. I realize that there is a lot of misinformation but I am beginning to feel that they equate being on medicaid with being uneducated. Anyway, I meet with the surgeon tomorrow for a check up and I am taking him printouts. I also meet with a lyphodema specialist tomorrow at my oncologists office, I am going to dicuss this with both of them. Whether they will listen is something else entirely. Going through this is difficult enough without having your concerns being dismissed.
Back to AWS. Here is a defintion:
. Axillary web syndrome (AWS) (from the BC cancer agency)
Axillary web syndrome is a post axillary lymph node dissection pain syndrome that occurs in approximately 6% of patients<SUP>1</SUP> It is characterized by a "visible web of axillary skin overlying palpable cords of tissue that are made taut and painful by shoulder abduction. The web is always present in the axilla and extends down to the antecubital space, and occasionally to the base of the thumb. Typically, there are two or three taut, tender, nonerythematous cords of tissue under the skin."<SUP>1</SUP> "In the majority of cases these cords extend across the antecubital fossa and into the forearm, occasionally as far as the radial aspect of the wrist at the base of the thumb."<SUP>1</SUP> It can present as early as 7 days post-op, but there is no documentation of it developing more than 8 weeks post-op. It often presents after an initial postoperative delay and resolves within 3 months of onset. It can occur in diverse populations of patients with invasive breast cancers.
The development of AWS appears to be related to an interruption of axillary lymphatics during surgery, although it has been seen in patients with stage IV disease with fixed, matted axillary metastases who have not had surgery. The removal of axillary lymph nodes may promote AWS through multiple mechanisms, and biopsies of axillary webs suggest that lymphovenous injury, stasis, and hypercoaguability contributes to its development. "Lymphovenous injury might occur in the retraction of tissue and patient positioning during ALND. Additionally, the tissue injury from the operation releases tissue factors that could cause hypercoagualability in the surrounding tissues. Stasis of lymphovenous channels would also be expected from the outflow obstruction induced by removal of axillary lymphatics draining the arm."<SUP>1</SUP> There does not appear to be an association between AWS and and lymphodema.
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=11448437&dopt=AbstractPlus
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WC2-4HF5KC8-1&_user=10&_coverDate=06%2F30%2F2006&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=3157f76f09afb6a772e08aaa89dd1194
http://findarticles.com/p/articles/mi_qa3946/is_200401/ai_n9370189
Has anyone else had these symptoms? How long did they take to go away? If you have had this, have you regained complete use of your arm? When I explained what I do to the surgeon and showed him pictures of what I do, he said I should be able to get back to work in three or four weeks, I tried last Thursday and paid for it all day Friday. I am hiring extra help for this job but I am wondering if be able to these finishes any time soon, or ever.
Leslie (fauxgypsy)
To put all of this into context, I discussed physical therapy with my surgeon the first time I talked with him about the surgery. I asked him if there was anyone in our area that was qualified. He said "several." He was wrong. Then we discussed that I would want to have this available as soon as possible after surgery (I make my living doing faux finishes). It took three weeks after surgery to get it set up. In the hospital I asked him about what exercises I should be doing. He said the woman from Reach to Recovery would explain it. She said that they didn't do that anymore because some of the surgeons didn't wat them to and gave me a book. I was in the hospital 4 days and no one would even tell me when to start the exercises or how often.
I took one of the papers on AWS in to the physical therapist. She remarked that she wished people would stay off the internet. I told her that I was tired of the medical community dismissing any thing I brought up. She is probably younger than my youngest daughter and isn't trained for my problem. I have an advanced degree in biology and when I research I don't go to quack sites. I realize that there is a lot of misinformation but I am beginning to feel that they equate being on medicaid with being uneducated. Anyway, I meet with the surgeon tomorrow for a check up and I am taking him printouts. I also meet with a lyphodema specialist tomorrow at my oncologists office, I am going to dicuss this with both of them. Whether they will listen is something else entirely. Going through this is difficult enough without having your concerns being dismissed.
Back to AWS. Here is a defintion:
. Axillary web syndrome (AWS) (from the BC cancer agency)
Axillary web syndrome is a post axillary lymph node dissection pain syndrome that occurs in approximately 6% of patients<SUP>1</SUP> It is characterized by a "visible web of axillary skin overlying palpable cords of tissue that are made taut and painful by shoulder abduction. The web is always present in the axilla and extends down to the antecubital space, and occasionally to the base of the thumb. Typically, there are two or three taut, tender, nonerythematous cords of tissue under the skin."<SUP>1</SUP> "In the majority of cases these cords extend across the antecubital fossa and into the forearm, occasionally as far as the radial aspect of the wrist at the base of the thumb."<SUP>1</SUP> It can present as early as 7 days post-op, but there is no documentation of it developing more than 8 weeks post-op. It often presents after an initial postoperative delay and resolves within 3 months of onset. It can occur in diverse populations of patients with invasive breast cancers.
The development of AWS appears to be related to an interruption of axillary lymphatics during surgery, although it has been seen in patients with stage IV disease with fixed, matted axillary metastases who have not had surgery. The removal of axillary lymph nodes may promote AWS through multiple mechanisms, and biopsies of axillary webs suggest that lymphovenous injury, stasis, and hypercoaguability contributes to its development. "Lymphovenous injury might occur in the retraction of tissue and patient positioning during ALND. Additionally, the tissue injury from the operation releases tissue factors that could cause hypercoagualability in the surrounding tissues. Stasis of lymphovenous channels would also be expected from the outflow obstruction induced by removal of axillary lymphatics draining the arm."<SUP>1</SUP> There does not appear to be an association between AWS and and lymphodema.
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=11448437&dopt=AbstractPlus
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WC2-4HF5KC8-1&_user=10&_coverDate=06%2F30%2F2006&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=3157f76f09afb6a772e08aaa89dd1194
http://findarticles.com/p/articles/mi_qa3946/is_200401/ai_n9370189
Has anyone else had these symptoms? How long did they take to go away? If you have had this, have you regained complete use of your arm? When I explained what I do to the surgeon and showed him pictures of what I do, he said I should be able to get back to work in three or four weeks, I tried last Thursday and paid for it all day Friday. I am hiring extra help for this job but I am wondering if be able to these finishes any time soon, or ever.
Leslie (fauxgypsy)