Nerve Damage

MelissaMF
MelissaMF Member Posts: 9
edited March 2014 in Breast Cancer #1
I am so frustrated. I was diagnosed with DCIS in August. I had my first surgery on 9/29. It was the latt dorsi surgery on the left side with an expander. I ended up with a couple of infections. I am also on Tamoxifen. I have had pain in my back, arm and chest ever since the surgery and have told my ps surgeon this and he keeps saying that I shouldn't. I have thrombosis now in my left arm, which is a clotting condition, and it won't go away for several months. They told me to take an asiprin every day and to use a heating pad. I had my expander out finally last Tuesday and I woke up from the surgery crying in pain. The surgeon couldn't figure out why. My arm and chest were killing me. He now thinks I have nerve damage from the original surgery. He wants me to see a pain management specialist and hopefully they can give me a nerve blocker or something. My arm has lost some of its mobility again and I am in so much pain again. Has anyone had this problem? I can't stand living like this! I called the pain management center and I can't get in for 7-10 days! I was hoping some of you could give me support in the meantime and let me know if you have had this happen to you. Thanks!

Comments

  • Chellebug
    Chellebug Member Posts: 133
    #2
    I'm so sorry to hear of your
    I'm so sorry to hear of your pain. I've not had reconstruction so I'm not familiar with what recovery is like from a lattismus dorsi flap. It is frustrating when doctors don't take your pain seriously.

    You might ask your doctor about your Tamoxifen. I believe Tamoxifen can also cause clots. If you are experiencing a clotting condition, could it be a side effect from the Tamoxifen? You might also ask for a referral to a physical therapist when you see the pain management center.

    I hope you get some answers.
    Chelle
  • MelissaMF
    MelissaMF Member Posts: 9
    #3
    Chellebug said:

    I'm so sorry to hear of your
    I'm so sorry to hear of your pain. I've not had reconstruction so I'm not familiar with what recovery is like from a lattismus dorsi flap. It is frustrating when doctors don't take your pain seriously.

    You might ask your doctor about your Tamoxifen. I believe Tamoxifen can also cause clots. If you are experiencing a clotting condition, could it be a side effect from the Tamoxifen? You might also ask for a referral to a physical therapist when you see the pain management center.

    I hope you get some answers.
    Chelle

    Thanks for the support
    Thanks for the support Chelle! I am so frustrated! I heard from a couple of other women that they experienced nerve damage and that it was permanent. They are now on pain medication and anti depressants. I am hoping I get something better than that as an answer from my doctor...when he finally sees me!
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #4
    Sorry to hear you're having
    Sorry to hear you're having such a hard time. Tamox can cause blood clots and aspirin in probably the best way to go for now. As for the nerve pain, gabapentin (neurontin) is supposed to be good for that. I don't know why he wouldn't recommend that. Another thought on a longer range note is Vit D. I had upped my dosage in Sept to 2000IU/day and at some point in time I noticed I didn't have to take my gabapentin for my feet anymore. Then I read an article saying Vit D helped heal nerve damage from diabetes. But you need something more immediate. Maybe if you see your general physician they can give you something, if not gabapentin then maybe some other options for the time being like even a narc to help you till you see the pain management specialist.

    Best luck to you
    love
    jan
  • MelissaMF
    MelissaMF Member Posts: 9
    #5
    phoenixrising said:

    Sorry to hear you're having
    Sorry to hear you're having such a hard time. Tamox can cause blood clots and aspirin in probably the best way to go for now. As for the nerve pain, gabapentin (neurontin) is supposed to be good for that. I don't know why he wouldn't recommend that. Another thought on a longer range note is Vit D. I had upped my dosage in Sept to 2000IU/day and at some point in time I noticed I didn't have to take my gabapentin for my feet anymore. Then I read an article saying Vit D helped heal nerve damage from diabetes. But you need something more immediate. Maybe if you see your general physician they can give you something, if not gabapentin then maybe some other options for the time being like even a narc to help you till you see the pain management specialist.

    Best luck to you
    love
    jan

    Would Neurontin work right
    Would Neurontin work right away? He gave me that a couple of months ago but I only used it for a week and it didn't make a difference. I am wondering if I didn't use it long enough or if I should have seen an immediate change. I did hear something on Vitamin D and you're right, I should try that too. I'm not very good at the vitamin thing anyway. But hopefully that will help me in the long term. It's been 5 days now and I still have not heard from the stupid pain mgt center! I've been taking Advil and Motrin constantly because I am working full time and the percoset gives me headaches and bothers my stomach...and I can't really take them anyway while I am working. Hopefully they will call me soon! Thanks for your feedback.

    Melissa
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #6
    MelissaMF said:

    Would Neurontin work right
    Would Neurontin work right away? He gave me that a couple of months ago but I only used it for a week and it didn't make a difference. I am wondering if I didn't use it long enough or if I should have seen an immediate change. I did hear something on Vitamin D and you're right, I should try that too. I'm not very good at the vitamin thing anyway. But hopefully that will help me in the long term. It's been 5 days now and I still have not heard from the stupid pain mgt center! I've been taking Advil and Motrin constantly because I am working full time and the percoset gives me headaches and bothers my stomach...and I can't really take them anyway while I am working. Hopefully they will call me soon! Thanks for your feedback.

    Melissa

    neurontin
    well, you know, it helped me with my feet. You probably already know that you start off in small doses and work up to the higher ones. You can take up to 1800 mg/day. I don't know how much you were taking. It can make you drowsy though. Too bad you have to work through this.

    Advil and Motrin are the same product. Ibuprofen. Since the percoset is giving you a hard time there are other options. I'll paste a link here that gives a ton of info for cancer pain and lists meds for nerve pain. Maybe since it's Fri you could go to emerg and get something to hold you over the weekend. I'd get a hold of my doc if I were you for something to tide you over till you see the specialists. Let them know you can't handle the percoset. Some of these meds make you drowsy but that's supposed to be only for the short term. Good luck to you, hope you find relief.

    love
    jan


    http://www.canceradvocacy.org/resources/treatment-issues/pain/treatment.html
  • survivor51
    survivor51 Member Posts: 276
    #7
    Help maybe
    Hey Sweetie,
    You sure have been through a lot and my spiritual hugs are with you. I would see about another opinion just to see if they have the same dx. In addition, ACS has a number to call 24/7. I have even called at 3am and someone is there. If they don't have the answer, they write the questions down and within 24 hrs, a real nurse calls you back. 1-800-227-2345 and they don't send you junk mail or snell mail. Being in constant pain and fear is an awful feeling so write down questions you want answers to and keep a journal to help you remember what causes the more pain and what gives you relief. We are you with sister love for you. Angela
  • MelissaMF
    MelissaMF Member Posts: 9
    #8
    survivor51 said:

    Help maybe
    Hey Sweetie,
    You sure have been through a lot and my spiritual hugs are with you. I would see about another opinion just to see if they have the same dx. In addition, ACS has a number to call 24/7. I have even called at 3am and someone is there. If they don't have the answer, they write the questions down and within 24 hrs, a real nurse calls you back. 1-800-227-2345 and they don't send you junk mail or snell mail. Being in constant pain and fear is an awful feeling so write down questions you want answers to and keep a journal to help you remember what causes the more pain and what gives you relief. We are you with sister love for you. Angela

    Still frustrated and waiting
    Thanks for the information ladies! I am cheking out the pain medication list and also may need to call someone at ACS because the pain mgt center finally called back and they can't see me until March 5th! I am so disgusted! I am seeing the PS tomorrow, so I will see if he will give me better pain med to hold me over, but I also wanted them to start checking into what is going on inside. I have a feeling I will be stuck like this.
  • MelissaMF
    MelissaMF Member Posts: 9
    #9
    MelissaMF said:

    Still frustrated and waiting
    Thanks for the information ladies! I am cheking out the pain medication list and also may need to call someone at ACS because the pain mgt center finally called back and they can't see me until March 5th! I am so disgusted! I am seeing the PS tomorrow, so I will see if he will give me better pain med to hold me over, but I also wanted them to start checking into what is going on inside. I have a feeling I will be stuck like this.

    RSD-Reflex Sympathetic Dystrophy
    Well, I've seen the pain mgt center and a physical therapist. The pain mgt center wants me to get an EMG to check to see if I have a nerve condition (I forget the name) but it should go away in about 6 months. I don't think they are on the right track though. I went to the PT the next day and he didn't think they were on the right track either and thinks I have RSD which is a permanent nerve condition, unless we can get a nerve blocker to work in the right area. He also doesn't agree with my PS sending me there for the full PT treatment because I am not tolerating it that well. So he called the pain center back and discussed it with them and they said once they rule out the other condition, they had the RSD as their second diagnosis. They also agreed that the PT routine needed adjusted and they should just stick with trying to get some strength in my arm and forget about the mobility, due to the pain and potential other issues this may cause. So at least I am learning a little more. I am also on Lyrica now which has made about a 15 % improvement. I am just concerned that I am stuck this way. I have given myself an attitude adjustment and am now in the acceptance stage if this is the way I will be left. I wasn't sure if any of you have heard of RSD before???
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #10
    MelissaMF said:

    RSD-Reflex Sympathetic Dystrophy
    Well, I've seen the pain mgt center and a physical therapist. The pain mgt center wants me to get an EMG to check to see if I have a nerve condition (I forget the name) but it should go away in about 6 months. I don't think they are on the right track though. I went to the PT the next day and he didn't think they were on the right track either and thinks I have RSD which is a permanent nerve condition, unless we can get a nerve blocker to work in the right area. He also doesn't agree with my PS sending me there for the full PT treatment because I am not tolerating it that well. So he called the pain center back and discussed it with them and they said once they rule out the other condition, they had the RSD as their second diagnosis. They also agreed that the PT routine needed adjusted and they should just stick with trying to get some strength in my arm and forget about the mobility, due to the pain and potential other issues this may cause. So at least I am learning a little more. I am also on Lyrica now which has made about a 15 % improvement. I am just concerned that I am stuck this way. I have given myself an attitude adjustment and am now in the acceptance stage if this is the way I will be left. I wasn't sure if any of you have heard of RSD before???

    RSD
    Sorry Melissa, I haven't heard of RSD. It sounds like your PT is working hard for you. Wish I could help you out more. Nerves do take a lot of time to heal but they can. All the best to you in your struggle.
    love
    jan

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