Thursday, January 21, 2010 Myriam asks

Q: Please help, I just cannot take it anymore... extreme pain and no help...

Dear All, I got double mastectomy on Sept 14 2009. I woke up from surgery in extreme pain like my side was still completely open. My first memory from it was to yell like I never did. They had to sedate me in order to stop me to yell... Since, the pain never stopped...Shortly after I was diagnosed with PMPS and put in the hand of an anesthesist to help me control the pain. I have been on oxycontin and oxycodon, and neurontin full blown dose (2700 mg/d) since then... Each and everytime the expanders were filled I ended up even worse, until I couldn't take it anymore and decided to have them replaced after only 400 ml put in. First thing after Sept 15 1009's surgery was than the worse side (left) was the most quiet since the mastectomies. I thought at last my peace was back, but few days after the surgery, my chest began to swell so much I ended up at the ER the 12/25... xmas... Was diagnosed then with huge hematoma but my plastic surgeon being in vacations, no one wanted to touch me and I came back home with nothing... again I cried. I have been crying everyday since the mastec.... Since then, I found a new plastic surgeon. I saw him on 12/31 who told him to "hang in there", the swelling will decrease and I will be better... I have NOT been better. My right side is getting again extremelly thight; the massages are now causing extreme pain for hours after; any movement from my right arm causes pain/pain/PAIN! I just cannot take it anymore. I am miserable and I begged my PS to remove it. He said to "hand in there" AGAIN!!! at least 2-3 more months... Why, why I am supposed to be subjected to pain 24/7 without having any rest from it? Why am I suppose to wait and just cry my eyes out? Is my life suppsoe to be like that? Am I going to get any peace sometime? Am I alone suffering like that?

Pleae, please, help me... I just cannot take it anymore...

Myriam

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Answers (3)

Phyllis Johnson, Health Guide

1/22/10 6:12am

Myriam,

I haven't had expanders or reconstruction, so I don't know much about it. However, your plastic surgeon needs to follow your wishes about continuing with reconstruction. Your level of pain from this surgery has been more extreme than most people experience, so you may be especially sensitive to surgical pain, and there is no reason to think that is suddenly going to change since you have been having this problem ever since the initial surgery.

Is there someone who can go with you to see the plastic surgeon and be your advocate in getting him to do what you want? Have you asked for a referral to a pain clinic to try to find more options for controlling the pain? I'm sorry you are going through so much pain. Be persistent in consulting with pain specialists and other appropriate doctors until you find someone to help you.

PJ Hamel, Health Guide

1/22/10 6:34am

Myriam, Phyllis is right - you need to see a pain specialist. AND you need to see the social workers at your hospital, as they could help you talk through the decision of whether to continue through the pain, hoping it abates soon; or whether to remove the expanders. I'm so very sorry you're having this experience; but trust me, no one's goal is for you to be in pain 24-7. Doctors will usually try different painkillers to see which one works for you - have you been through a number of different drugs? Again, this is something a pain clinic would address with you, so call those social workers ASAP - like today! They can help you find the nearest pain clinic, I'm sure; or point you towards other resources that could help. Hoping you feel better very, very soon - PJH

Myriam

1/22/10 10:10am

Dear Phyllis and PJ,

I am followed every month by the pain clinic. Prior to change the plastic surgeon, I requested to have a social worker to help me to get another plastic surgeon in this hospital. I got nothing... beside being sent to their "risk managment" department... they took my "complaint" and did nothing. Then I went "shopping" for another plastic surgeon. My concerns are at different levels: while I am kind of "functioning" using the pain meds and the neurontin, I am still in pain and my activities are quite limited due to it. When I saw the plastic surgeon yesterday, he told me again to hang in there. He doesn't want to go in as it is still inflammed from the surgery in Dec 2009 when they put in the definitive implants. I am just so tired of this. My life is completely meaniless and the pain is just killing me everyday, little pieces after little pieces... I asked again and again how anyone could actually ask any woman to be subjected to this pain for so long. They just look at you and say: hang in there.

I don't even understand why I have been in such pain in the first place! "Post Mastectomy Pain Syndrome": they even have an acronyme for it, so I am not the only one who is waking up from mastec surgery in full blown pain!!!!

Is there any Expert here that have any advise, info anything that I can do to help myself? obviously the docs cannot do a thing, or if they can, why I ams till in pain?

Please, a name, a place, anything to I can do/talk to? Anyojne here that have been diagnosed with PMPS? and what happened to them? are they still in pain? for how long? what do they that can help?........... please, anything...

PJ Hamel, Health Guide

1/22/10 3:15pm

Have you seen a breast specialist at a Comprehensive Cancer Center, Myriam? If there's one within reach of where you live, you might consider getting a referral, as that's where you'll probably find the nation's best breast doctors. Also, have you asked about never blocks? I believe they can give you a shot to cut off sensation in your breast area... you might ask about that, too. I'm not a doctor, just relaying things I've heard over the years; and no, there are no experts in pain management at this site, so we can't help you there. Readers, does anyone have any advice for Myriam re: post-mastectomy pain? PJH

Myriam

1/22/10 5:15pm

Dear PJ,

My Oncologist belong to a comprehensive cancer center at UPENN. She is the one who sent me to the pain clinic. From there on, no real contact with anyone from the cancer center anymore. My pain doc does know about the PMPS. Actually they were talking about it while I was still at the hospital for my double mastectomy... so very little doubts in their minds already very early on this whole roller coaster thing. I am just surprised, (amazed?), that once in the pain clinic, everything should assumed that the pain is going to be controlled and that the pain will disappear somehow? or maybe this is a wishing thought from my mind?... Obviously, i wasn't proposed the nerve block, at least yet, but I'll talk about it next time I see the pain doc.

My concerns are also at 2 levels: 1) I never heard of this complication anywhere before I pretty much woke up in excrutiating pain, so nothing that i read before or that my docs (oncologist surgeon and plastic surgeon) would have told me prior the surgeries, not even here on this website, hence my question: am I alone with this problem? they actually did diagnosed me pretty soon after the mastec, so I have a assume that this syndrome is in fact known but not disclosed?...2) if I am not alone, then why there isn't any awareness about it PRIOR any mastectomy?...

I am feeling very much alone in this battle, and if even on this site, this syndrome is unknown, then I am even more alone that I thought in the first place...

PJ Hamel, Health Guide

1/22/10 5:50pm

Myriam, here's some information I found by Googling post mastectomy pain syndrome - and there's lots more, if you'd like to try Googling it on your own. Here's what they advise for treatment - maybe you should show this to your pain clinic?

Anti-inflammatory agents (Ibuprofen, Naproxyn and other NSAIDs)
Low-dose antidepressants (Elavil, Pamelor and other SSRIs) although maximum benefit necessitates consistent usage for several weeks
Topical counterirritants (capsacian and mentholated creams) although the overall efficacy is poor. Caspacian cream acts by interrupting transmission of pain impulses through small diameter nerves by decreasing substance P (a neurotransmitter). It is effective in patients with neuromas
Local anesthetic and corticosteroid injections for scar neuromas -- serial injections over several weeks/months are often needed to see dramatic improvement If there is only temporary but complete relief following injections, improvement may be seen with excision of the painful area of the scar along the neuroma. If there is no improvement following injection, removal of the scar is unlikely to be effective.
EMLA (eutectic mixture of local anesthetics: 25mg lidocaine, 25mg prilocaine per ml water) application prior to surgery has been shown to decrease the need for post-operative analgesics, and the incidence/intensity of chronic pain. Since post-operative pain is associated with continuous firing of nervous system from the wound area and axillary lymph nodes, analgesic drugs are needed until the wound heals. Further confirmatory studies on EMLA are needed.
For otherwise intractable pain, the following may be used as a last resort. There are a variety of options depending on the circumstance and personal need to control suffering:
a)thoracic sympathectomy
b)intermittant corticosteroid or anesthetic injections into the epidural space
c)implantable spinal cord stimulators
d)regional nerve blocks or neurolytic agents (alcohol)
e)sacrifice nerves (surgical)
It should be noted that narcotics have been shown as ineffective against chronic neuropathic pain, and generally results in dependency.

Adjunctive Therapy

In addition to pharmacologic treatments, several studies have shown the importance of adjunctive therapies to improve the physical and psychological health of women diagnosed with PBCPS. Acupuncture, for example, was shown to significantly increase the range of arm motion, and reduce pain following axillary dissection. Other suggested modalities include:

Guided imagery training
Biofeedback
Physical therapy to prevent "frozen shoulder" syndrome as a result of inadequate movement
Psychological counseling has also been shown as effective: improvements in both comfort and function were seen when patients underwent behavior therapy in addition to their medication. By consulting with psychologists/psychiatrists trained in chronic pain syndromes, these patients were able to address the psycho-emotional component in the limbic pain reinforcement pathways.

I hope you can find something in this informaiton to help you. Again, I'm sorry - we're not doctors here, so can only try to guide you to sources that can help. Wishing you healing energy - PJH

Myriam

1/22/10 7:40pm

Thanks PJ, I appreciate your help and do not be sorry, please. This is not your fault. I am trying on my side to live with this monster... some days are better than other, even though I am thinking now that maybe the double mastec was an error and that i should have not done that...

Thanks again.

Best and take care of yourself

PJ Hamel, Health Guide

1/22/10 7:50pm

Wishing you a restful night, Myriam- PJH

Myriam

2/25/10 10:41am

Dear All,

I am giving some follow up on the situation. My pain meds regimen has been adapted but still not controlling the pain. I am scheduled for 3 thoracic nerve blocks next week. Hopefully it will allow me to rest from this unrelentless pain... I am keeping my fingers crossed (and toes...) and hope for the best.

Thanks again for your support.

Best,

Myriam

PJ Hamel, Health Guide

2/25/10 12:45pm

I'm glad they're doing the nerve block, Myriam. I think that'll be a great help. Till then - hang in there. I'm sending you good karma- PJH

Myriam

3/ 4/10 10:55am

Dear All,

I did the intercoastal nerve blocks yesterday, and ouch... one of them (I had a 3 level injections) was so painful that I almost passed out... Today it is still feeling very weird (difficult to explain the sensation). The anesthesic is gone (it was feeling pretty good while still there!) but I believe it is still too early to feel the steroid effect (if any), hence I am pretty much in pain.

My pain management doctor is now talking about spinal cord stimulator (also called neurostimulator. It is from St Jude Medical), and this is scaring me quite a lot... He sent me home with a brochure and a DVD about it, so he is getting pretty serious about it. I am also scheduled for another set of nerve blocks in 2 weeks... and I am already feeling very fearful after this first set...

any advice or input from someone who is using a neurostimulator?....

Thanks for your help again.

Myriam

PJ Hamel, Health Guide

3/ 4/10 12:14pm

Myriam, think of it this way - you're making progress. "If you do what you've always done, you get what you've always gotten." Kudos to you for forcing yourself to march through this process. I hope and pray that something will kick in for you and relieve you of your pain. PJH

Angi

1/23/10 1:19pm

I'm sorry I was unable to get to this sooner. The wi-fi in my hotel has been horrible, therefore I have not been on at all. PJ's pretty much covered it from every possible angle. What works for some, does not always work for others. I see a pain management specialist who has me on Lyrica for my nerve pain which is associated with both post-mastectomy, post cancer, and I even think post-chemo. In all honesty, I think they just place blame on it all cause they really don't know what it's from. It took me a long time to find something that worked, and in the process I built up a bit of a drug resistance because they had me on morphine which would make me stupid on most days. I would doze off talking to people. Now my doctor has me on Opana and I don't get that effect from it at all, and it completely covers all my pain. It took me a good 2 1/2 years of trying before we found the right combo. Keep at it. No one should ever suffer through pain for any reason!

Good luck!

Angi

Myriam

1/23/10 8:29pm

Dear Anji,

May I ask who is taking care of your care for the PMPS, only the pain management doc, or is your oncologist is helping too? I never heard of opana but i'll do a search right after the email is on its way. From your email, it seems to have been quite a long road before to get the appropriate treatment. I tried Lyrica but got too much side effect, hence back on neurontin at 2700mg/d, but still on oxycontin + oxycodone for breackthrough pain. I will keep at it to try and find the right combination in order to have some life back from all this mess... Have you been diagnozed with PMPS short time after your surgery(ies)? and how knowledgeable were (or still are) your medical team about this? did you find any other support to help you go through this?

Thanks again for your help and your input in this. I just think that if I had been told prior the surgeries of a possibility of this happening, then I would have had more choice of doing things and at least would have not had to tolerate a completely idiotic plastic surgeon who was (is) mean and incompetante, and just plain wrong... Just knowing that the pain was in fact from PMPS would have stop me to try to get help from the wrong people...

Am I to believe that you are doing ok as of today with the medications that you are taking? and did anyone told you if this pain will stop or at least regress somehow after sometime?...

Thanks for your help.

Best,

Myriam

Angi

1/24/10 3:15pm

My Pain Management doctor is the only one dealing with my pain. I was diagnosed following chemo completion, so it had been a few months following the mastectomy and the pain was a combonation of things that had just increased. The pain doctor I was seeing at the time in NV immediately labeled it as post-chemo/surgical pain--whether he knew or it was a stab in the dark is unknown to me, but no one has ever questioned the diagnosis. I was never told that this was a risk of either treatment, not that it would have stopped me. It will be 5 years this summer, and there's no end in site. There is no cure for this, no surgical block to relieve pain. Sure it could get better, but chances are it will just stay the same--I mean it hasn't improved on it's own in 5 years. I can't go off the meds for more than 12 hours without being in intense pain. So for now, I just take what works. Keep at it, till you find yours.

Q: Please help, I just cannot take it anymore... extreme pain and no help...

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