Post-mastectomy pain syndrome

280 Posts | Page(s): Prev 12...5 6 7 8 9 ...2728 Next 

RE: Post Mastectomy Pain

by mamakishbaw on Tue May 11, 2010 05:55 PM

Quote | Reply

Please just know that I will add myself to the multitude of others who do not have implants, but still have incredible tightness and pain. I would hate to see anyone opt for removal of their implants solely on the complaint of tightness and pain, since those of us who remain boobless have the same symptoms. Just get all the info you can and don't be hasty. Sounds like you are checking it all out, though, already!

RE: Chronic Post-mastectomy Pain

by mamakishbaw on Tue May 11, 2010 06:09 PM

Quote | Reply

Wow, I am sorry for your troubles, but I am excited to find someone who has had a similar experience to mine. I had a double mastectomy in May 2009, Stage 3 ductal on one side and Stage 1 lobular on the other, 19 nodes out - 8 positive, immediate reconstruction. Two weeks after the surgery the left implant shifted down and the incision below split open. The plastic surgeon treated it thru my visiting nurse by phone with an antibiotic wash. Two days later when my oncologist saw it he immediately sent me to another surgeon and had them removed due to the severity of the infection. I, too, was left with a large hole the size of a pita pocket, you could slide all your fingers into it. After nine months and a KCI vac unit it finally healed. I want to kick that plastic surgeon, but have been told I probably don't have a case as infections happen. I was never put on an antibiotic after the initial surgery and wonder if others have been, as a routine procedure. Perhaps that would have saved me so much infection. I have continued pain and tightness in my left side, chest, armpit, back all around the scar. When I brought it up to the doctor he said it would ease. It has been a year and lately it seems worse. I am an occupational therapist and have practiced all the stretching and scar massage that I know of, and it still persists. It hurts for no reason, lying in bed. I feel horrible for shying away sometimes from picking up my sweet little 2 yr old granddaughter. I cannot do my duties at work, but thankfully have co-workers who help me. Looking for any other thoughts on the pain and tightness issue. Feels like a vise grip around my chest. And I wanted to relate to your situation. Thanks for sharing!

RE: Post-mastectomy pain syndrome

by Renemarie on Fri May 14, 2010 04:00 AM

Quote | Reply

On Mar 15, 2004 12:00 AM Linda_D_13 wrote:

Hello - I'm wondering if anyone else has had experience with intense, unrelenting burning pain after a mastectomy, in the armpit and on the incision. It's been about a month since my mastectomy and I haven't been rid of this pain one minute; it's only relieved to a certain degree by narcotics. My surgeon knows nothing about the syndrome, apparently. I've read a little online and plan to set up an appointment with some pain specialists, but I'm astounded that there's so little information about this. Nothing on Susan Love's site either. Thanks. Linda D.

Hi Linda, I know what you have been going through as I had my bi-lateral mastectomy with reconstruction in Nov. 2008. Several month went by with the burning, itching, tightness  and pain you describe. Ten months later I visited my  osteopath for another health reason and he asked me if I was doing OK with the breast surgery that I had had earlier. Clearly it was obvious to him that I was distressed. Since that time, I have been treated weekly by him and gradually the tightness, itching and burning are subsiding. I do often have the feeling in my breasts of being icy-cold and clamy. He believes that will also improve with time. I still have discomfort but happily I do now have a few quite acceptable days, which is encouraging. I have not been given any medication to ease the condition and would prefer to be treated in such a way that corrects the problem rather than masks the pain. My oncologist is aware of the problem but does not have knowledge on how to deal with it. He said "You look great, but I know that you feel horrible." That pretty much describes the situation.

Linda, I am so sorry that you are suffering with this condition. There seems to be a real lack of interest in the problem. I live in the Southwest and hope that you and other sufferers will be able to learn about the treatments I am receiving. Renemarie

RE: Post-mastectomy pain syndrome

by keepmeabreast on Sun May 16, 2010 01:47 AM

Quote | Reply

On Mar 15, 2004 12:00 AM Linda_D_13 wrote:

Hello - I'm wondering if anyone else has had experience with intense, unrelenting burning pain after a mastectomy, in the armpit and on the incision. It's been about a month since my mastectomy and I haven't been rid of this pain one minute; it's only relieved to a certain degree by narcotics. My surgeon knows nothing about the syndrome, apparently. I've read a little online and plan to set up an appointment with some pain specialists, but I'm astounded that there's so little information about this. Nothing on Susan Love's site either. Thanks. Linda D.

Hi Linda, I had my surgery exactly wto weeks ago, bi-lateral mastectomy and sentinal and 10 lymph node removed.  I have been in continous pain.  The burning sensation started after about a week after the surgery, it is relentless and when i tell all of my docs they look at me like I am crazy or say huh, that means you are healing that is a good thing.  I continue taking lortabs, motrin and started benedryl the other night which seemed to help with the itching.  Have you or anyone else found anything to help? Are you still experiencing pain? I will try anything.

RE: Post Mastectomy Pain Management

by hfcns on Mon Jul 12, 2010 08:59 AM

Quote | Reply

On Dec 17, 2006 12:00 AM Pmpsros wrote:

 

On 11/21/2006 Neighbor wrote:

Can you e:mail me with information about the therapist you are seeing? Thanks.

Hi

My therapist is in Sydney Australia. 

Hello pmpsros 

Yr description fits pretty well with my circumstances. I am on Neurontion which takes the edge off, but leaves crushing right round the front of my ribcage, and rt top part of my arm in a vise. As it wears off I get the "hedgehog in the armpit". It began immed after double mastectomy and axilliary clearance 3 june 09. I am in Cairns and haven't found any others with this, or any medical help either. If I could have yr physio's name perhaps I cd interest a Physio here to contact them. I'd really love to hear how much improvement you have had?  [I too have post surgery "flubs" of flesh at my sides that are just awful.} Helen

RE: Post-mastectomy pain syndrome

by ashlynnicole88 on Mon Jul 12, 2010 01:56 PM

Quote | Reply

Hi Linda,

Often after a surgery, adhesions will form to help in the healing process. These adhesions are made of strong fibrous bands that can attach to delicate tissues and cause the pain and tightness that is often associated with post mastectomy pain syndrome. 

There is a manual physical therapy called the Wurn Technique® that decreases pain and increases function caused by these adhesions. If you would like to learn more, you can visit  www.clearpassage.com/ebooks/post_mastectomy.pdf.

I hope you find this information helpful.

Ashlynn N.

Clear Passage Physical Therapy

 

RE: Post-mastectomy pain syndrome

by maggigioffre on Sat Jul 17, 2010 09:22 PM

Quote | Reply

On Mar 15, 2004 12:00 AM Linda_D_13 wrote:

Hello - I'm wondering if anyone else has had experience with intense, unrelenting burning pain after a mastectomy, in the armpit and on the incision. It's been about a month since my mastectomy and I haven't been rid of this pain one minute; it's only relieved to a certain degree by narcotics. My surgeon knows nothing about the syndrome, apparently. I've read a little online and plan to set up an appointment with some pain specialists, but I'm astounded that there's so little information about this. Nothing on Susan Love's site either. Thanks. Linda D.

The clinical information is abound. Just use keywords such as intercostobracial neuralgia or post mastectomy pain syndrome.  It has been research since late 1970s but drs. will not tell you this.

There are many interventions but watch out.  if you tell them you are depressed or anxious they will send you packing.  We depressed wome who have lost our breasts are not candidates to help relieve our pain.

It is completely unfair and discriminatory.

I have had unrelenting burning pain.  Use ice, lots of it.

also pain meds help as well as lots of neurontin or lyrica., but long term treatments include neurilysis or spinal stimulators. I just got back from Johns Hopkins Pain Clinic and they sent me away because I am depressed and anxious.  Nice, huh, but get used to it.

Please write me if you can help me.  I will go anywhere.

Maggi 

RE: Answers...

by lonicera on Thu Jul 22, 2010 09:13 PM

Quote | Reply

On Jul 07, 2005 12:00 AM Pmpsros wrote:

Dear fellow pmps sufferers I too have been experiencing horrendous pain after breast surgery – postmastectomy pain syndrome is the diagnosis, and it’s been a long search to find someone who can treat it. The pain is debilitating and feels like someone has taken a knife to my chest and shoved a sharp blade up under my arm. It developed about 8 weeks after mastectomy and has continued unabated. The only time I get relief from it is when I go to bed and don’t move - once I move any part of me the pain is there. The pain extends across my chest right down my arm to my wrist, and I am also hypersensitive to touch. I have been to numerous doctors, psychologists, psychiatrists, physiotherapists. Because I had not much movement in my arm, the initial diagnosis by the physiotherapists of my condition was frozen shoulder. I received treatment and pain medication for a frozen shoulder condition for quite some time without any improvement. The diagnosis has since proved to be incorrect. I had the mastectomy in September, 2003, and it wasn’t until February this year after searching for answers that I found someone who understood the symptoms I was presenting and was able to treat this condition. While I do have to travel quite a distance to access treatment it is worth it because I didn’t know how I was going to live the rest of my life in this state of pain. In the four months since treatment began, I have been able to stop taking Neurontin which is one of the main drugs and reduce Endep being used for my nerve pain. They were drugs that did not take the pain away, but at least took the edge off it, and made it a bit more bearable. I’m now able to move a lot better and my sensitivity to touch has improved incredibly. My chest used to feel like it was set in concrete. The person I found to treat me is a physiotherapist who specialises in treating postmastectomy pain syndrome patients. She is currently doing a PhD thesis on the treatment of this condition. Because I have to travel a long way for treatment I only see her once a month and she gives me a very precise programme of massage and exercises to perform daily. Because I’d been suffering for such a long time prior to receiving the correct type of treatment, it was difficult for me to believe that I could be helped. I have been extremely diligent in doing exactly what she has advised me to do in between consultations and I have to say that my pain has decreased about 50% in the past four months. Although I may have some degree of this problem for the rest of my life, the improvement achieved so far is significant and my life is so much better already. The continuing progress gives me hope that by Christmas I may have a tolerable level of pain without meds. The process is slow and painful, but it is worth it and I have so much more movement in my arm as well. My physiotherapist has explained to me that muscle and nerves in the area have been damaged by both the surgery and the radiation and the whole area is ‘pulling’ tightly. The therapy I am receiving is designed to progressively ‘release’ the tightening in order for the pain to decrease. My hopes are now high for a substantial improvement and I feel that the problem doesn’t just go away with the passage of time. Based on my experience, it is important to seek treatment that can have immediate effect. Unfortunately, medical practitioners in the area where I live did not seem to know how to recognise or treat this condition in a severe form as they just don’t see it - only a small amount of patients present with this problem to the degree that I have it. I understand that possibly up to 30 percent of patients are affected to some degree after breast surgery. The good news is that there is help for this condition out there, you just have to find the right practitioner who knows exactly how to treat it.

please tell me wht type of message helps your condition of tightness and pain, i need it too so badly.

thank you,

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

RE: Post-mastectomy pain syndrome

by lonicera on Thu Jul 22, 2010 09:23 PM

Quote | Reply

On Jul 17, 2010 9:22 PM maggigioffre wrote:

On Mar 15, 2004 12:00 AM Linda_D_13 wrote:

Hello - I'm wondering if anyone else has had experience with intense, unrelenting burning pain after a mastectomy, in the armpit and on the incision. It's been about a month since my mastectomy and I haven't been rid of this pain one minute; it's only relieved to a certain degree by narcotics. My surgeon knows nothing about the syndrome, apparently. I've read a little online and plan to set up an appointment with some pain specialists, but I'm astounded that there's so little information about this. Nothing on Susan Love's site either. Thanks. Linda D.

The clinical information is abound. Just use keywords such as intercostobracial neuralgia or post mastectomy pain syndrome.  It has been research since late 1970s but drs. will not tell you this.

There are many interventions but watch out.  if you tell them you are depressed or anxious they will send you packing.  We depressed wome who have lost our breasts are not candidates to help relieve our pain.

It is completely unfair and discriminatory.

I have had unrelenting burning pain.  Use ice, lots of it.

also pain meds help as well as lots of neurontin or lyrica., but long term treatments include neurilysis or spinal stimulators. I just got back from Johns Hopkins Pain Clinic and they sent me away because I am depressed and anxious.  Nice, huh, but get used to it.

Please write me if you can help me.  I will go anywhere.

Maggi 

don't give up, go to another pain clinic, god bless

claireship claireship
(Inactive)

RE: Post-mastectomy pain syndrome

by claireship on Sun Aug 01, 2010 10:00 PM

Quote | Reply

I had a mastectomy on my right side and full lymph gland removal on that side in May this year 2010. I have experienced some of the burning stabbing pains mentioned on this discussion thread. However I have found that if I do a lot of stretching exercises over and above the basis stuff given by the hospital physio they go away and now I am pain free except when I am tired. What I do is stretch out the arm and shoulder through all the different angles possible. So far this seems to have stretched out the "cords" and now I only have one area where the scar tissue is still stuck to my chest wall. It goes against your instinct to stretch out the recent scars but they are tougher than you think and it has worked for me. I am 49 years old and have also had radiotherapy and the exercises seemed to stop the skin toughening up as much as it was. Massage helps and calendula oil in a base of beeswax or olive oil helps the skin condition and reduces redness after radio therapy (SHOULD NOT USE DURING TREATMENT just afterwards when reaction calmed a little)

I think it is the immobility that causes the pain as I had a similar experience with scar tissue following spinal surgery. Once a physio had broken the scar tissue down the awful pain I had experienced went away.

280 Posts | Page(s): Prev 12...5 6 7 8 9 ...2728 Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.