Severe Pain in arm after Mastectomy

michka · 07-09-2007, 12:52 PM

Help Ladies! I am reposting my message since I only got one answer. I'll try to complete my message:

I was operated 5,5 months ago. (mastectomy and axillary nodes removed). After three weeks, I had severe nerve pain under my arm. The surgeon told me it was neuropathy due to the section of some nerves during mastectomy. He said it is rare but happens. He gave me a medication you give to epileptic patients. (Rivotril in France, molecule called Clonazepan)
3 months later, as it was only giving me temporary relief, he sent me to a specialized "pain" center. They gave me another product of the same type (Neurontin, molecule called Gabapentine) and I started mild electricity putting electrodes on my arm and chest 4 hours a day. The result is worse.
Did anyone who had this kind of pain after surgery ever get rid of it?
It is just an additional pain to the rest but I can tell the difference between nerve pain and my other pains.
But the worse pain is in my head: the surgeon said I could not have reconstruction until this pain disappears. But what if it never disappears?
Please tell me about your experience if you have or had this problem.
What treatment did you get and did it work?
Thanks.
Michka

Andrea Barnett Budin · 07-09-2007, 03:26 PM

You can read in my signature what my story is. I had a lot of pain in my left armpit and down my inner arm. I would swing my arm forward nd up and back and down to get the circulation going, when it got a bit devastating. I would lay in bed and reach my left arm over my head and around to my right ear. Eventually I could do this standing, but it hurt to much to follow doc's orders re exercising the bad arm. Laying down helped me do it and stretch the ?muscles or whatever.

Doc told me not to carry my bag on my left side ever again. Not to lift anything over 20 lbs with my left arm, ever. Not to sleep on my left side, ever.

It felt like someone put a really tight tourniquet around my upper arm and left it there. It was a stinging sharp pain that went up and down the arm. I took, and take, a muscle relaxant nightly (Flexerol) which I think helps. All these yrs later I occasionally have pain in left arm. I elevate it on pillows, sometimes for hrs. I never lift w/my left arm. I never sleep on my left side. It took getting used to, but it is now accepted.

I did the walking up the wall with my fingers exercize in the hospital. It was excrutiating, but I did it. Along with the exercize reaching over my head and grabbing the opposite ear. It also hurted really really badly. But I kept doing it. Have you been given exercizes like these?

It took over 6 mnths, if memory serves, for the pain to begin to subside. I was lucky enough to have tram flap reconstruction WITH my mastectomy. I was determined to have NO COMPLICATIONS. No lymphodema. Less and less pain. My arm and armpit felt a bit numb and still do, yet there is enough feeling to feel pain. Now it is only occasional.

It is hard not to focus on pain. It grabs our full attention. I used to take OUT OF BODY MIND TRIPS, meditating to escape my body, intentonally not concentrating on the pain, but instead on blood flowing and circulating. It is very difficult, but I didn't want to obsess about the crippling horrible pain. I would swing that arm while waiting in a restaurant for a table, on any line, any time I felt it getting worse. I didn't care what I looked like. I truly believe it helped.

Stay strong and positive, Michka. Call upon every reserve you have, with passion and determination. It sounds like there is not a problem, other than coping with the pain, and believing it will subside. Make that your mission. Do the exercizes. I honestly think they helped enormously.

Please let me know how you do with your project of rehabilitating yourself. It was my plastic surgeon, who had an oncological background, that gave me the exercises to do IMMEDIATELY, in the hospital. AND, he insisted that I keep my arm propped up on several pillows, at a sharp angle to my elbow, getting the blood flow going from the getgo. As I say, I still do this from time to time, when that numb panging pain comes. I take the muscle relaxant and it helps. Often, I take an Ativan at night, which relaxes the mind! We all need help. Nothing to be ashamed of. Docs must assist us. My onc insists there is absolutely no reason to suffer. If an anti-depressant is called for, allow yourself to get yourself chemically balanced again. Going through what you have is a major trauma demanding a well-rested, upbeat attitude, which can mean you must rely on medicines to get you there. There is no reason for you to suffer. You deserve better than that!

Are you getting a good night's sleep? That is tantamount to healing and becoming well. Your body needs to restore itself. If the Ativan isn't adequate, ask for a sleeping pill. I'm sorry to keep pushing pills, but it helps you psychologically deal with this tremendous challenge you are faced with. Hang in there, Michka.

Sending you loving, healing energy... ANDI

tousled1 · 07-09-2007, 03:33 PM

Michka,

I had a bilaeral mastectomy and on my right side had 26 nodes removed and the left only one node. I have an area under my right arm that is completely numb but not painful. My surgeon told me that I may have this numbness the rest of my life. Neuropathy pain with a mastectomy is not uncommon. Has your surgeon referred you to a physical therapist? About a month after my surgery I saw a physical therapist whose speciality was dealing with lymphedema patients. Perhaps if you got some PT it would help to alleviate the pain.

Catherine · 07-09-2007, 07:21 PM

Thank you to those who have replied to Michka. She was really disappointed not to get a response to her other post. Now that she has changed the title, I think we can get more people to help her.

I did not experience this much pain or discomfort. It has been 10 months since my surgery and 7 months since my radiation. I still need to constantly stretch my arms. Especially the right one where the nodes were removed.

Everytime I log on, I am still impressed with all of you and this site.

We are lucky. Thank you Joe and Christine.

Catherine

Andrea Barnett Budin · 07-09-2007, 07:39 PM

It may sound like an odd question, Catherine, but I missed radiation. In '95 1 onc said, Think about. After the chemo. And never brought it up again. Another onc said, If there's no breast tissue, there's nothing to radiate. I was confused and chose to wimp out after 8 mnths of 4Adria and 8 CMF, and lots of Epigen. Now, I often wonder if I'd done radiation, maybe I wouldn't have recurred. But w/Her2+ 80% (back in the day) it was pretty certain I would, I believe at this point in time.

Anyway, I was interested in knowing where they aimed the radiation. Those who've added it to their protocol seem to get good results, I have learned.

I wish you NED for many decades to come, Catherine! ANDI

sarah · 07-10-2007, 12:21 AM

Micka,
Definitely go to a physical therapist. If it's your main arm, you must work on it. take whatever pain medication to make it possible for you to exercise the arm otherwise it may 'freeze' (my word) and become difficult to use. Maybe try during arm exercises in a jacuzzi.
Keeping the arm movement is vital.
I'd suggest doing a lot of research about it and if the surgeon (they think everything is solved by surgery) suggests surgery be sure you understand any consequences it may have.
My neighbor had a double mastectomy and radiation in the primitive 80's and her left arm hurts and her hand has now lost all feeling. Surgery for the pain in the nerve was ruled out as the benefits might be very low and she would then lose some brian/arm movement "talk"
I don't mean to scare you, only having seen the way she is, has pushed me to exercise my arm more vigorously.
Here in France they generally give us Dalfagan a pill you can take several times during the day for pain. try to keep your arm elevated as much as possible.
good luck, you will get through this
stay strong
sarah

SoCalGal · 07-10-2007, 08:36 AM

Hi Michka,
I have had bilateral mastectomies with reconstruction using my TFL (outer thigh area) muscles as flaps. I have long scars down each leg.

Then I had skin spread, so I had yet another surgery, this time a latisimus dorsi flap. I am cut and pasted, and ironically was not heavy to begin with but needed my own body parts to get clear margins.

I also had radiation twice, and when first diagnosed had a lymph node dissection - which removed 20 nodes and took a big scoop from my left arm pit.

Then I had a ton of chemo's following this massive, and I mean massive amounts of surgery.

I have terrible nerve pain. Everywhere. I lived on pain meds from all the surgery. It was viewed as the least of my problems. I could not lift a bag of groceries out of my car.

In 2004, at a check up with my plastic surgeon, I told him of all my pains - my legs, my arms, the phantom itching, the electric shooting pains, etc. He said to try pilates.

I came home that day to a post card in my mailbox from a neighbor, teaching pilates (ON THE REFORMER) in her home studio. I have been going ever since. I go twice a week - it's changed my life. My whole body healed from this exercise machine. I used it only to stretch for a long time. Then gradually added weight. So, long story short (it's too late for that) exercise will help.

By the way, when I skip a week, my legs get the shooting pains again. I have practiced yoga, and I walk a lot, which helps but not in the same way as the Pilates reformer. It's important to work with someone certified in the JOSEPH PILATES way - as the original intent was to rehabilitate dancers. I hope this info helps you. --Flori

TSund · 07-10-2007, 08:49 AM

Flori,

I had never heard about the Reformer machine, interesting! Did you buy one?

Regarding neuropathy, in addition to stretching, I think I've read here that some take B vitmains, (B6, B12?),L-Glutamine, Evening Primrose oil, Alpha -lipoic acid, maybe some others? Thought this was more in reference to hand/foot syndrome, I would think it might help any neuropathy?

TRS

SoCalGal · 07-10-2007, 09:03 AM

Here's one link to show the machine. That's me

Seriously - It's pricey so I did not buy one. Also, it takes up a bunch of room, and it's VERY IMPORTANT to find a qualified instructor. Someone not only certified but with EXPERIENCE. The reformer gives you a dancer's body. Long, lean, strong, toned. The instructor keeps track of your routine, your weights, and makes sure you are breathing correctly, etc. etc.

http://www.infinitedynamics.com/pilates.php

Emelie · 07-10-2007, 09:09 AM

I too had nerve pain in my left arm after my MRM in March. I saw my surgeon 14 days after surgery and told her about it. She immediately sent me to a physical therapist and within 1 week of 3 tx my arm was almost normal. I had exercises to do at home and she massaged my arm each time I saw her. I highly recommend this if you have not tried it.
Good luck,
Emelie

Catherine · 07-10-2007, 09:38 PM

Michka and Andi,

First, I too try and do a fair amount of stretching. I stretch my arms while walking, while watching tv and while I am on the telephone. If I do not stretch, my under arm feels puffy and "full." After PT, I started going back to my massage therapist. She does "maniupulation" of the facia on my chest. Also works out the build up of fluid in my lymphs. (not sure if this is really what she does, but it feels very good). I work with 2-pound weights once a week.(suppose to do 4 times a week). Walk a fair amount. Again I do not have pain, just a little "fullness." Michka, I am so happy that people are giving you their helpful ideas.

Andi...re: my radiaiton.

I went 33 times. I think their were 4 "quadrants" in my chest area that they radiated. One area was close to my neck and went thru to my upper back shoulder area. I had a bilateral, but they only radiated the side with the cancer and the node cancer. If I could draw a picture on here I would. Picture this....1. under arm and close to neck. 2. top of where breast use to be. 3. where breast was. 4. not sure.

Hope this helps.
Catherine

michka · 07-15-2007, 09:08 AM

I thank you for all your answers! I do go to a physical therapist but this is to recuperate my arm and prevent lymphedema. I can tell the difference between the types of pains. The "pain center" even told me to stop the physical therapist because it can make things worse.
What I am complaining about is nerve pain. The surgeons know it is because they cut some nerves and some women go through horrible "neuropathy": burning, shots, stabs and tingles. I suffer every minute even with the "Neurontin" medication. I would have liked to know if I will stay with this for life.(I know, for "life" would be a good problem).
I stopped Arimdex for a 3 weeks so that is a big set of different pains less! But I'll have to go back on it soon.
Micka

Alice · 07-15-2007, 04:44 PM

Hi Micka,
I also have quite a bout with neuropothy. I have nerve pain in my affected arm down to my hand, and shoulder. Also I have numbness there and pain and numbness in my chest. The last time I went to my onc I asked how long I would have this pain seeing that It had been over a year since surgery. Her reply was to think of it in a different way. I have residual pain from the surgery and most women do not. She said that I should think of it as having bad days with my arm and having not so bad days with my arm. If I keep thinking I am going to have "good" days with it I will just be dissapointed. I know this isn't what you would like to hear but it did help me look at it in a little different light. The worse thing I think is the neuropothy I have from chemo. It affects my arms, hands, legs and both feet. There was one point that I was just climbing the walls. Couldn't sleep over a couple of hours a night until the pain and burning were unbearable. Now I take Neurontin for it and it does help quite a bit. I wasn't thinking it was getting any worse until I went for a walk with my family and I couldn't keep up with my dad who is 81. I thought that they were going to have to get the car for me. My legs just wouldn't go any further, and I'm no whimp.
Sorry I have gone on and on. I guess I just needed to get some things out. The main thing to remember in all of this is we are still here! There are so many that are in a worse way than I am and when I get down I try to think of them and be thankful that all I have is neuropothy!

Andrea Barnett Budin · 07-15-2007, 09:12 PM

I so want to help. I was just reading (Googling) on the Net about boosting my red blood count with supplements.

I came across this information and thought of you, Mishka -- B-12 (which I take 1500 sublingually each day) + FOLIC ACID (which I used to take and some how fell off my list, and I am reading it INVOLVED IN THE PRODUCTION MYELIN SHEATHS THAT PROTECT NERVES AND RED BLOOD CELL PRODUCTION are a combination used for both issues.

Also, ALPHA LIPOIC ACID (which I 300 AM and PM) is involved in nerve regulation, neurtalizes free radicals and can cross the blood brain barrier.

You may want to look into LYCOCAPS (Google).

I am now taking LYCOPOM, but the above sounds very worth your while.

Your nerves need to regenerate. I too had nerve damage from the severing of nerves in my armpit and upper arm (removing lymph nodes, cutting muscles, and so on). I had neuropathy. I did find getting the oxygen flowing to that area, and propping it helped. But my doc was explicit about choosing a trainer who is familiar specifically w/breast cancer patients recuperating and their specific problems. You can do more damage than good if you do not have the right rehab person, with training in unique area. I wish I could offer my exact directions in finding such a specialist, but my fantastic plastic man (who did my tram flap recon) had tapes in his office, along w/cards for just such a person. Perhaps that is a route you could follow in France, with a potential reconstruction expert who is in to follow up care to the nth degree.

Keep us up to date on your progress, and I have no doubt you will get a good handle on this as you appear to be intelligent, forceful, insightful and motivated by your suffering. None of us should be in such pain. It is not a necessary part of accepting your lot. You can find help. Keep on track. And consider the supplement route. I have an onc in NY who specializes in supplements, meditation, guided imagery, healing the whole person. His integrative oncological approach has helped keep me STABLE I have no doubt. He is a rare find, but surely there are others. The above supplements have a means of rectifying your problem substantially. That is what I pray for you... You deserve to feel joyful, harmonious and without pain. Stay on top of this till you find resolution. With loving energy sent your way, ANDI