Lhermitte's Syndrome??

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  • adventurebob
    adventurebob Member Posts: 691
    #22
    Greg53 said:

    Hey Bob
    Bob,

    Definitely sounds like L'hermittes. There were several posts prior to mine that discussed this (and actually my original post is 6 or 7 months old). My L'hermittes is fading now. Almost sad to see it go. It was a good way to wake myself up in the afternoon if I dozed off at work. Actually this was an easy sympton, kinda weird at first and then not to sound weird, I kinda liked it. Only happens occasionally now and I'm 10 months out (dang, almost 11 months).

    Have you been hiking any??

    Postive thoughts!

    Greg

    Lhermittes?
    Ah, now I see the original date. Perfect timing it coming back around today as I just started experiencing it a few days back. Not too unpleasant but of course my thinking about it was. Very relieved to know what it is. I've been hiking a bit out on the coast. I rented a little cabin out there for the last month and a half. Mainly just long walks up and down the beach; sunrise and sunset. Nice place to recover. How bout you?

    Bob
  • JUDYV5
    JUDYV5 Member Posts: 392
    #23
    Mine started the same time
    the Lhermittes sydrome started to fade, but then the neurophy set in. It isn't painful, just a little uncomfortable. I have spent quite a bit of time teaching my self how to type and write again with the different sensations of my fingers. Another big one was grabing a large drink from the drive through. Do you drop it or crush it?? I blame the citsplatin for the nerve problems - Judy
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #24
    JUDYV5 said:

    Mine started the same time
    the Lhermittes sydrome started to fade, but then the neurophy set in. It isn't painful, just a little uncomfortable. I have spent quite a bit of time teaching my self how to type and write again with the different sensations of my fingers. Another big one was grabing a large drink from the drive through. Do you drop it or crush it?? I blame the citsplatin for the nerve problems - Judy

    Gotta love that neuropathy
    When I walk briskly, the soles of my feet feel tingly and numb. When I walk long enough, my ankles do the same. I think this is beginning to fade now, nine months later.

    Never had any problems typing, but grabbing a drink - no way. I've knocked over a lot of beverages since end of treatment. Running low on glassware.

    Deb
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #25
    D Lewis said:

    Gotta love that neuropathy
    When I walk briskly, the soles of my feet feel tingly and numb. When I walk long enough, my ankles do the same. I think this is beginning to fade now, nine months later.

    Never had any problems typing, but grabbing a drink - no way. I've knocked over a lot of beverages since end of treatment. Running low on glassware.

    Deb

    last July-
    I added to this thread that it's 10 months and counting...still counting. No sign of it lessening to any degree, and I'm now 23-months post-treatment. Not just looking down- also hits me when I'm shaving and get my arms in certain positions.

    One thing I do wonder some about is of a condition I had before treatment- arthritis in the lower-right back. During treatment with all the hydrocodone, etc., I didn't have a bit of the old back pain. Since treatment it has gotten much worse than it ever was before. Yes, I'm getting older and physical activity ain't what it used to be, but I'm wondering if the rads/chemo could have affected the arthritis. I know Greg would say it's cause I spend too much time worrying about the north side of Chicago, which is a given, but any other opinions or info on treatment and arthritis would be appreciated.

    kcass
  • Greg53
    Greg53 Member Posts: 849
    #26
    adventurebob said:

    Lhermittes?
    Ah, now I see the original date. Perfect timing it coming back around today as I just started experiencing it a few days back. Not too unpleasant but of course my thinking about it was. Very relieved to know what it is. I've been hiking a bit out on the coast. I rented a little cabin out there for the last month and a half. Mainly just long walks up and down the beach; sunrise and sunset. Nice place to recover. How bout you?

    Bob

    Hikes
    Bob,

    Nasty winter here in the Midwest cut into my outdoor activities big time, including hiking and fishing. I'm hoping the Spring weather cooperates and I can get out and enjoy those pastimes more. Don't have a choice though now, just bought a new pair of boots and I need to go break them in!

    Will be sending good mojo to you and everyone else here while on my next trek!

    Greg
  • uvm1978
    uvm1978 Member Posts: 33
    #27
    D Lewis said:

    Gotta love that neuropathy
    When I walk briskly, the soles of my feet feel tingly and numb. When I walk long enough, my ankles do the same. I think this is beginning to fade now, nine months later.

    Never had any problems typing, but grabbing a drink - no way. I've knocked over a lot of beverages since end of treatment. Running low on glassware.

    Deb

    Thank you
    Thanks for all the feedback everyone - it is so helpful. Deb
    btw - my maiden name is Deb Lewis, what a coincidence
  • Slowlane
    Slowlane Member Posts: 4
    #28
    adventurebob said:

    Lhermittes?
    Ah, now I see the original date. Perfect timing it coming back around today as I just started experiencing it a few days back. Not too unpleasant but of course my thinking about it was. Very relieved to know what it is. I've been hiking a bit out on the coast. I rented a little cabin out there for the last month and a half. Mainly just long walks up and down the beach; sunrise and sunset. Nice place to recover. How bout you?

    Bob

    I got it too
    Wow mine started at 3 months out as well. Still got it now at 4 1/2 months and it is strong. Put me on the ground 2 weeks ago bending over a lot doing yard work. My doc said to avoid nodding my head as much as possible. This is a very helpfull thread. Slowlane
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #29
    Slowlane said:

    I got it too
    Wow mine started at 3 months out as well. Still got it now at 4 1/2 months and it is strong. Put me on the ground 2 weeks ago bending over a lot doing yard work. My doc said to avoid nodding my head as much as possible. This is a very helpfull thread. Slowlane

    Welcome
    Welcome aboard sloooowlane....

    Most cases the sensation goes away around a year or so out, or nearly goes away I should say.

    Best,
    John
  • CajunEagle
    CajunEagle Member Posts: 408
    #30
    D Lewis said:

    Gotta love that neuropathy
    When I walk briskly, the soles of my feet feel tingly and numb. When I walk long enough, my ankles do the same. I think this is beginning to fade now, nine months later.

    Never had any problems typing, but grabbing a drink - no way. I've knocked over a lot of beverages since end of treatment. Running low on glassware.

    Deb

    Ha---Haaaa !!
    Having finger Neuropathy is a daily mystery. I stopped the other day for a large Iced Tea in a styrofoam cup, and when the girl handed it to me from the service window, I began to insert the straw. Before I realized it, I had pushed the straw through the bottom of the cup and had sweet...Ice Cold Tea all over my lap and the front seat of the car. I just broke out laughing, as the girl gave me this weird look, and another serving of Tea in a waxed cup instead. Guess she figured that this guy ain't right.

    Larry
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #31
    CajunEagle said:

    Ha---Haaaa !!
    Having finger Neuropathy is a daily mystery. I stopped the other day for a large Iced Tea in a styrofoam cup, and when the girl handed it to me from the service window, I began to insert the straw. Before I realized it, I had pushed the straw through the bottom of the cup and had sweet...Ice Cold Tea all over my lap and the front seat of the car. I just broke out laughing, as the girl gave me this weird look, and another serving of Tea in a waxed cup instead. Guess she figured that this guy ain't right.

    Larry

    A lot of times my left hand
    A lot of times my left hand goes numb. Especially when I am driving too long. When I went back to Staten Island in Novemeber for my HS reunion, I got out of the car after the three hour drive. My back and neck as well as my shoulder and left arm was killing me. (neck dissection side) My left hand was numb. I opened the trunk with my key and took out my little suitcase and I closed the trunk. I never felt the keys drop out of my hand. :( my dress for the reunion and the keys were locked in the car. The extra set were 185 miles back home in PA. thank goodness I had Toyota roadside or something. They sent a guy out and he opened my car door and I popped the trunk. Cost me nothing. When I food shop now, I open the car doors first, then the trunk and put the key in my pocket. I have an extra key in my wallet, plus the extra key that has always been at my parents. Just in case.
  • bpell0402
    bpell0402 Member Posts: 61
    #32
    sweetblood22 said:

    A lot of times my left hand
    A lot of times my left hand goes numb. Especially when I am driving too long. When I went back to Staten Island in Novemeber for my HS reunion, I got out of the car after the three hour drive. My back and neck as well as my shoulder and left arm was killing me. (neck dissection side) My left hand was numb. I opened the trunk with my key and took out my little suitcase and I closed the trunk. I never felt the keys drop out of my hand. :( my dress for the reunion and the keys were locked in the car. The extra set were 185 miles back home in PA. thank goodness I had Toyota roadside or something. They sent a guy out and he opened my car door and I popped the trunk. Cost me nothing. When I food shop now, I open the car doors first, then the trunk and put the key in my pocket. I have an extra key in my wallet, plus the extra key that has always been at my parents. Just in case.

    i know im new here but...
    thought i would add my two cents...

    there are many treatment options for "nerve pain and symptoms".. your brachial plexus is a large collection of nerves stemming from your neck, into your shoulder and goes all the way down.. i would assume Head and neck radiation would affect these cluster of nerves. you could then develop carpal tunnel syndrome as well.

    treatments options i am aware of include: wrists splints at night time if the hand/fingers are most affected, Vitamin B6, exercising and stretching of course! Injections in the neck, elbow and wrist can decrease the inflammation around these nerves and decrease symptoms. Radiofrequency ablation can be used in selected patients to "burn" nerve endings in severe cases to eliminate pain. medications exist such as neurontin (gabapentin), lyrica, amitriptyline and others. spinal cord stimulators can block pain signals that the nerve send out..

    there are options.

    an EMG/NCV (nerve test) might be useful to diagnosis the probelm if possible.. information such as were the nerve is being irritated could lead to other treatment options. although i have not dealt with this.. it would make sense to me that radiation could cause a person to develop carpal tunnel or cubital (elbow) tunnel... there are medication such as above and also ambulatory surgical procedures available for patients who are interested.

    just wanted to be the one to share some information for a change! seems like the symptoms may be temporary post treatment.. but if they are not..there are options =)
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #33
    bpell0402 said:

    i know im new here but...
    thought i would add my two cents...

    there are many treatment options for "nerve pain and symptoms".. your brachial plexus is a large collection of nerves stemming from your neck, into your shoulder and goes all the way down.. i would assume Head and neck radiation would affect these cluster of nerves. you could then develop carpal tunnel syndrome as well.

    treatments options i am aware of include: wrists splints at night time if the hand/fingers are most affected, Vitamin B6, exercising and stretching of course! Injections in the neck, elbow and wrist can decrease the inflammation around these nerves and decrease symptoms. Radiofrequency ablation can be used in selected patients to "burn" nerve endings in severe cases to eliminate pain. medications exist such as neurontin (gabapentin), lyrica, amitriptyline and others. spinal cord stimulators can block pain signals that the nerve send out..

    there are options.

    an EMG/NCV (nerve test) might be useful to diagnosis the probelm if possible.. information such as were the nerve is being irritated could lead to other treatment options. although i have not dealt with this.. it would make sense to me that radiation could cause a person to develop carpal tunnel or cubital (elbow) tunnel... there are medication such as above and also ambulatory surgical procedures available for patients who are interested.

    just wanted to be the one to share some information for a change! seems like the symptoms may be temporary post treatment.. but if they are not..there are options =)

    L'HERMETTES JUST KICKED IN TODAY
    I think my bout with L'Hermettes started today. I was walking, looked down and felt a big time tingle or shock go all the way to my feet. It about buckled me at the knees.

    Sounds like from all of these posts it will eventually go away??

    Mike
  • adventurebob
    adventurebob Member Posts: 691
    #34
    luv4lacrosse said:

    L'HERMETTES JUST KICKED IN TODAY
    I think my bout with L'Hermettes started today. I was walking, looked down and felt a big time tingle or shock go all the way to my feet. It about buckled me at the knees.

    Sounds like from all of these posts it will eventually go away??

    Mike

    That's it
    You got it Mike. Strange isn't it?
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #35
    luv4lacrosse said:

    L'HERMETTES JUST KICKED IN TODAY
    I think my bout with L'Hermettes started today. I was walking, looked down and felt a big time tingle or shock go all the way to my feet. It about buckled me at the knees.

    Sounds like from all of these posts it will eventually go away??

    Mike

    Should
    Mike, most everyone here that has had it usually goes away or significantly deminishes within 9 - 14 months...

    Best,
    John
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #36
    adventurebob said:

    That's it
    You got it Mike. Strange isn't it?

    VERY STRANGE
    As I write this, I now do not have the shock effect when I lower my head. My neck had allot of fluid in it earlier today, I wonder if this has anything to do with it?

    Mike

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