#55380 08-15-2004 10:52 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | OP  Gold Member (100+ posts)
Joined: Apr 2004 Posts: 156 | Oh boy do I have a doozy for you all!
Remember when we had that wonderful discussion regarding tension headaches? Well my spine- nervous-system-muscles-God-only-knows-what now has a new trick.
When I bring my chin to my chest (doing my now ever-so-popular neck stretches compliments of PowerLifter), my butt muscles (or just my butt b/c I haven't worked out since April and I've lost anything related to tone in conjunction with resembling an anorexic teen-idol of Brittney Spears) spasms. Yes, you read correctly. My neck is apparently tied to my butt. For added kicks and giggles, my pelvis occassionally chimes in with a spasm, as does the muscle-tendon-God knows-what from my butt to my right knee.
Go ahead - tell me this is normal.
Sabrina | | |
#55381 08-15-2004 11:45 AM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 146 | Sabrina, Sorry that I can't tell you if it's normal or not but I hope you don't mind that it did give me a chuckle just reading your post!  I tried to visualize these spasms happening and, well, I just chuckled. I hope someone out there has a medical reason why these are happening or at least have experienced something similar. Do the side effects never end????? Hugs, Nancy
Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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#55382 08-15-2004 11:58 AM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Wow, that is THE way to get your thrills Sabrina!  Love from an envious Helen
RHTonsil SCC Stage IV tx completed May 03
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#55383 08-15-2004 01:14 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | Sabrina, I wonder if this is related to the tingle/shock sensation that the chin-to-chest move produces in a percentage of post-rad patients. This is definitely a chin-to-lower spine deal. That fades away gradually, so perhaps whatever you are experiencing will too, although neither of my knees was ever involved. Very interesting description of your problem (grin). | | |
#55384 08-15-2004 02:00 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Just when I thought I'd heard of everything... 
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#55385 08-16-2004 11:06 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Apr 2004 Posts: 156 | If only it were that thrilling......it'd make things MUCH better and the day MUCH brighter.
Sabrina | | |
#55386 08-16-2004 04:01 PM | Joined: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jul 2004 Posts: 188 Likes: 1 | Sabrina,
It sounds very similar to the tingling sensation I get when I tuck my chin down towards my chest, or sometimes just when I look down. It varies in intensity, and doesn't always happen, but when it does!!! Sometimes it just causes a tingling sensation in my hands, but every once in a while it will feel like I've grabbed hold of an electric cord, shocks all the way to my butt and down the back of my legs
There's a name for it, I believe it's called L'Hermite's Syndrome. My radiation oncologist says it's "normal" and should clear up in time.
Good Health
Chuck
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
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#55387 08-17-2004 06:25 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Oh Sabrina, you are wonderful. Picture this. You now have about 2000 people worldwide with their chins on their chests checking to see 'if hip bone is connected to the neck bone' or muscle as the case may be. I just love it.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#55388 08-17-2004 06:55 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Yep, I tried it, Sabrina, and it is not nearly as much fun for me as it is for you  . (I feel like a new Budhist monk trying to reach nirvana!) Maybe you could give us all a few lessons in Las Vegas.  What Chuck is explaining could very well be the culprit. I get it real bad when I am walking and especially down stairs. Stupid me, though, because I always try it as I am walking down stairs and sometimes it almost makes me dizzy. My medical oncologist insists it was from the radiation and the radiation oncologist insists it is from the Cisplatin. I found a data sheet on Cisplatin that lists it as a potential side-effect. Vitamin B-12 has been recommended to lessen the effects. Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#55389 08-17-2004 11:16 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Apr 2004 Posts: 156 | At least I figured out what was causing the feeling. For about a week I thought it was diarrhea heading down for battle. You know that feeling you get just before the "OOO!! Squeeze butt cheeks. Must get to bathroom"? It's that "just before" feeling (no panic of bathroom needs - that's ONE blessing). Now I find out the name sounds suspectfully like it's French for Hermit Crabs. I'm also curious to the number of doctors proclaiming x, y, and z are a "side effect of treatment" and should "clear up in time", when in fact they're going "what the hell is this person talking about." Life! Gotta love it. Sabrina | | |
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