Neurosurgeon Visit Didn't Bring Good News

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creampuff91344
creampuff91344 Member Posts: 988
edited March 2014 in Breast Cancer #1
Well, for those of you who have been following my plight, I just got home from the neurosurgeon's office. In a few words, he looked at the MRI, read all of the reports, and says there is nothing that can be done for the pain in my jaw. He says that I have neuropathy in the nerves in the facial area where the pain is located, and it is just like the neuropathy in my hip and right foot. The nerves were damaged by the chemo. Nothing to snip, nothing to cut out, and probably no improvement in the future. This is so disheartening, as I was so hoping he would say we can just cut that out, and you will be fine. Now, I need to change my mindset, and come to grips with the fact that I will always have this pain, and find a way to stay comfortable. Currently on pain meds and anti-anxiety meds (which he says I should continue on a regular basis). Other than that, I will just find another way to think about the pain, and send it out of my mind. This stinks, but at least it isn't another cancer. Always something to be thankful for, as has been said by many of our fellow board menbers. Thankyou all for your concern. Onward and upward! Hugs, Judy
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  • mwallace1325
    mwallace1325 Member Posts: 806
    #2
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    So sorry
    to hear it can't be cut out and you'll be done with it. Glad however it isn't cancer. Isn't it amazing how after the first diagnosis we've become able to look at the bright side of just about anything.
    Hopefully you'll find meds or yoga or meditation or whatever that'll keep you as comfortable as possible without killing too many brain cells. : )


    marge
  • mariam_11_09
    mariam_11_09 Member Posts: 691
    #3
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    I am sorry to hear what you
    I am sorry to hear what you are going through. It can be rather disheartening. I hear you.

    I have neuropathy in my hands and feet. It appears that my feet are getting better and according to the neurologist it will take a year for my feet to fully recover. My hands are another matter since I have developed carpal tunnel as well. My fingers feel like the skin has been peeled back on them and the nerves are exposed and raw. This partciular area of my each fingers is getting bigger and bigger. Everything I touch is like static electricity and now it is even hurting to type (i earn a living from being on a computer), I can't even write with a pen. The neurologist has no idea if this will ever go away or subside. He has suggested steroid injections for the carpal tunnel in the hopes that at least that will clear up without having to have surgery for that but the rest of the pain, numbness, tingling, shooting electrical like pains in my hands there is nothing that can be done about it.

    I have been taking large doses of B vitamins along with amino acids in the hopes I can help my body to help this neuropathy problem. It may take a long time.

    If you are up for it and can afford it you might want to try acupunture for the pain. For some people it works really well.

    I hope you are able to find some relief.
  • carkris
    carkris Member Posts: 4,553 Member
    #4
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    mariam_11_09 said:

    I am sorry to hear what you
    I am sorry to hear what you are going through. It can be rather disheartening. I hear you.

    I have neuropathy in my hands and feet. It appears that my feet are getting better and according to the neurologist it will take a year for my feet to fully recover. My hands are another matter since I have developed carpal tunnel as well. My fingers feel like the skin has been peeled back on them and the nerves are exposed and raw. This partciular area of my each fingers is getting bigger and bigger. Everything I touch is like static electricity and now it is even hurting to type (i earn a living from being on a computer), I can't even write with a pen. The neurologist has no idea if this will ever go away or subside. He has suggested steroid injections for the carpal tunnel in the hopes that at least that will clear up without having to have surgery for that but the rest of the pain, numbness, tingling, shooting electrical like pains in my hands there is nothing that can be done about it.

    I have been taking large doses of B vitamins along with amino acids in the hopes I can help my body to help this neuropathy problem. It may take a long time.

    If you are up for it and can afford it you might want to try acupunture for the pain. For some people it works really well.

    I hope you are able to find some relief.

    I tried neurontin and didnt
    I tried neurontin and didnt do well, but that could be a consideration along with Lyrica. Some people get relief with this. Also the antidepressant cymbalta seems to help. I hope you find something to help, it stinks to have no answers. Have you seen a neurologist?
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #5
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    Judy, I am so sorry to hear
    Judy, I am so sorry to hear that, just one more thing picking away at your quality of life. I hope the meds help and you find a liveable place for this pain. YOu have such a great attitude and I know it doesn't come easy. Take care my friend,
    jan
  • creampuff91344
    creampuff91344 Member Posts: 988
    #6
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    carkris said:

    I tried neurontin and didnt
    I tried neurontin and didnt do well, but that could be a consideration along with Lyrica. Some people get relief with this. Also the antidepressant cymbalta seems to help. I hope you find something to help, it stinks to have no answers. Have you seen a neurologist?

    Carkris
    Yes, I have been through two neurologists, and now the neurosurgeon. Brain MRI, multitude of meds (including neurontin), all of which caused the exact opposite reaction to how it was supposed to work. The only thing the neurosurgeon has to offer is to "kill the nerve" in that side of my face, which he says may or may not work on a permanent basis. In fact, he said if he was faced with the same situation, he wouldn't do it, so that tells me it isn't the direction I want to go. Pain meds and anti-anxiety (ativan) are my current treatment, and he says I should continue with this. Probably will be the rest of my life, but at least there is some relief. Thank you for the suggestion. I also tried accupuncture, and it did relieve some of the pain, but I was having to go five days a week, and two days after stopping treatment, the pain was right back. Guess we all have issues we have to deal with, and this is mine. Thanks to all who were concerned. Hugs, Judy
  • QuiltingMama123
    QuiltingMama123 Member Posts: 124
    #7
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    So sorry...
    I wish I had words of wisdom for you, or a magic wand to take the pain away, but please know you are in my prayers. I have had to live with chronic pain since high school (severe knee injuries) so I know a little of what you are going through. It does become easier - the human body and brain are remarkable at adapting - but it doesn't really go away. I know that is not what you want to hear, but the important thing is that it does get easier.
  • Scotch Freckles
    Scotch Freckles Member Posts: 273 Member
    #8
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    Just a Suggestion
    I suffered with tendonitis for years with no relief from doc's in sight. Than one day I say to myself "Self, why don't you try acupunture?" I did. After 4 trips my pain was gone. And to think after 9 years of suffering and several doc's I haven't had any problems since and that was at least 11 or 12 years ago. It never hurts to try something different when it comes to pain. Though nerve pain is quit different it might be worth checking into.

    Kathryn
  • aisling8
    aisling8 Member Posts: 1,627 Member
    #9
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    Scotch Freckles said:

    Just a Suggestion
    I suffered with tendonitis for years with no relief from doc's in sight. Than one day I say to myself "Self, why don't you try acupunture?" I did. After 4 trips my pain was gone. And to think after 9 years of suffering and several doc's I haven't had any problems since and that was at least 11 or 12 years ago. It never hurts to try something different when it comes to pain. Though nerve pain is quit different it might be worth checking into.

    Kathryn

    Sorry
    to hear this news. It sounds frustrating, dispiriting, and painful. I'm sure we all wish this weren't happening to you. Sending you a big hug and some positive energy as you figure out "what next."

    I'm hoping you'll find a good pain management specialist and get some relief.

    xoxo

    Victoria
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    #10
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    Ahhh, Judy...
    Am so sorry for this news. Seems "final"... Truly wish it wasn't so. Really wish there was some other solution for you. Sucks (please excuse my "french") that the treatments required to save our lives so very often seem to cause such problems later on.

    You are experiencing what my med pros term a "setback" - hopefully, very temporary. I know you, friend. One step backwards will eventually hurl you three steps forward.

    Sending hugs backatcha...

    Kindest regards, Susan
  • jo jo
    jo jo Member Posts: 1,175
    #11
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    Judy im so sorry to hear
    Judy im so sorry to hear about that...having to adjust your life to deal with constant pain...that just sucks!
    But on the other hand...WOOOOO HOOOOOO...its not cancer!!!!!!!
  • jo jo
    jo jo Member Posts: 1,175
    #12
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    Bump cuz of spammer
    Bump cuz of spammer
  • sausageroll
    sausageroll Member Posts: 415
    #13
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    jo jo said:

    Bump cuz of spammer
    Bump cuz of spammer

    Neuropathy is a PAIN!
    I really feel for you Judy. Neuropathy in the jaw must be so difficult. I know you will find a way to deal with it. I have neuropathy in my feet from diabetes and chemo. I take Lyrica and Alpha Lipoic Acid. I don't notice much difference until I stop taking either and then it gets worse...so they must be some help.

    I'll be thinking of you. Pat
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #14
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    creampuff91344 said:

    Carkris
    Yes, I have been through two neurologists, and now the neurosurgeon. Brain MRI, multitude of meds (including neurontin), all of which caused the exact opposite reaction to how it was supposed to work. The only thing the neurosurgeon has to offer is to "kill the nerve" in that side of my face, which he says may or may not work on a permanent basis. In fact, he said if he was faced with the same situation, he wouldn't do it, so that tells me it isn't the direction I want to go. Pain meds and anti-anxiety (ativan) are my current treatment, and he says I should continue with this. Probably will be the rest of my life, but at least there is some relief. Thank you for the suggestion. I also tried accupuncture, and it did relieve some of the pain, but I was having to go five days a week, and two days after stopping treatment, the pain was right back. Guess we all have issues we have to deal with, and this is mine. Thanks to all who were concerned. Hugs, Judy

    **Hugs**
    Try alternatives
    **Hugs**

    Try alternatives and things that keep up your spirits as your time/energy allow. This journey sucks but it beats the alternative.

    Maureen
  • ms.sunshine
    ms.sunshine Member Posts: 707 Member
    #15
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    sausageroll said:

    Neuropathy is a PAIN!
    I really feel for you Judy. Neuropathy in the jaw must be so difficult. I know you will find a way to deal with it. I have neuropathy in my feet from diabetes and chemo. I take Lyrica and Alpha Lipoic Acid. I don't notice much difference until I stop taking either and then it gets worse...so they must be some help.

    I'll be thinking of you. Pat

    So sorry Judy
    What a bummer. I didn't know one could have neuropathy in the jaw. I guess neuropathy can occur anywhere. I learn new things on this site every week.
  • skipper85
    skipper85 Member Posts: 229
    #16
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    Alternatives may work

    I'd try a chiropractor or the acupuncture. You'd be amazed how pain can be reduced or eliminated by working on the correct pressure points and/or spinal column. A consultation wouldn't hurt.

    Wishing you the best.

    ((Hugs))
    Skipper85
  • warrrior3
    warrrior3 Member Posts: 92
    #17
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    So sorry
    to hear of your disappointing news. Seems so unfair. Once we are diagnosed with cancer that should be the worst of it. Pain sucks!
  • Annette 11
    Annette 11 Member Posts: 380
    #18
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    Judy
    Hi Judy, Sorry to hear this but as you said Thank God it's not cancer.
    My friend was telling me that she has neuropathy in her leg, she started to get laizer (SP?) treatments and she said it's helping. Someone told her that it takes 2-3 treatments before you start feeling results. We didn't talk much about it but I will ask more if your interested or you could ask your dr. if he knows about this. Have you heard of these treatments to relieve neuropathy?
    Hang in there sister.
    Hugs,
    Annette
  • sal314
    sal314 Member Posts: 599 Member
    #19
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    Don't Give Up Hope!
    So sorry the news wasn't what you wanted to hear! Yet, I wouldn't throw in the towel just yet! You really should consider accupuncture. You have to go to a good one who has experience in Jaw pain, which may be hard to find, but I would definately give it a try!

    My father, who has terminal esophageal cancer, was having terrible pain in his shoulder from radiation damage to a nerve in his back that was traveling up to his shoulder. My father is a tough, strong guy, but the pain was so bad he ended up on morphine. Well, it made him totally out of it and because he still drove and went to work he hated being on it. SO, he went to this accupuncturist who did about 2 months, 3 times a week of heavy duty accupuncture (which my dad said wasn't very pleasant), but it worked! He is completely off of all pain meds and feels NO pain!

    So...keep an open mind. It may be able to help you! You should also think about seeing a pain specialist. There are so many things they can do these days to help chronic pain.

    Good luck and keep us posted.

    Blessings,

    Sally
  • smalldoggroomer
    smalldoggroomer Member Posts: 1,184
    #20
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    I'm so sorry Judy, At least
    I'm so sorry Judy, At least it isn't cancer that part is a relief. There must be things that can be done to manage it? Massage, acupuncture,acupressure, Yoga. At least the Internet makes this easier to research. I wish there was some thing I could do for you. I sure hope you are feeling better. I pray for you everyday. Take care Kay
  • cahjah75
    cahjah75 Member Posts: 2,631
    #21
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    Judy
    I'm so sorry you didn't get the news you were hoping for from the neurosurgeon. I deal with arthritic pain every day and no it's not easy. I think pain in the jaw is probably worse. At least I can get injections to help relieve my pain. I do know there are pain management options (biofeedback kind). I don't know if it would help your situation. Wishing you some peace of mind and relief of your pain.
    {{hugs}} Char

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