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15 lymph nodes removed - tingling in neck and face - HELP

C21sue
Posts: 2
Joined: Oct 2013

17 years ago I had papillary thyroid cancer.  3 months ago I had a reoccurance and had 15 lymph nodes removed from left side of neck.  I have had not only the numbness from check bones down to chest, but also tingling.  Tingling like when dentist novicaine wears off, irritating and painful. 

Every day I wake up to these symptoms somewhere.  My surgeon has no ideas or the second surgeon.  They both just threw up their hands and said they didn't know why.  No one has done any testing or tried to find out WHY. 

Have also seen regular Phd, physical medicine - he put me on gabepintine (nerve blocker) takes edge off but have had to increase dose and don't like the side affects of the pills.  He also told me I would have this without the surgery ~ seriously? , physical therapy and chiro. 

Does anyone have any idea's???  At my wits end.

Baldy's picture
Baldy
Posts: 226
Joined: Mar 2011

Hi Sue,

You wake up with this tingling "somewhere", do you mean at or near the site of the surgery? or other places on your body?

If it's at or near the surgical site, for me this included my right shoulder and the right side of the top of my chest, I think it might be a reaction to the surgery.  I had a total thyroidectomy and 50 plus lymph nodes removed from my right neck a little over two and a half years ago.  The weird sensations that I felt, short very sharp pains, a deep itching that I can't scratch, sensitive skin and some minor things all in the general area of the surgery have decreased over time.  For the first few months, I had the sensation that someone was pulling on my right ear lobe every so often and the seam in my shirt felt like a back back strap across my shoulder.  This kind of thing, {nerves reawakening?}, has decreased over time, and now most of the symptoms no longer occur.  Hopefully, you are experiencing a severe type of this, and you can look forward to it eventually going away.

If this is anywhere at all {legs, back etc.} than maybe you're having some sort of reaction to a drug that you started taking about the same time as the surgery? or maybe something they gave you during surgery?

Alan

C21sue
Posts: 2
Joined: Oct 2013

Alan  ~ Thanks for information!!

The tingling can be any where from my eyes down to my chest.  Surgery was on my left side of neck.  For the first 3 weeks surgeon told me it was the nerves healing, after that he just said he didn't know why.  And everyone I see says they don't know why..my issue is that no one has tried to figure it out. No MRI's, No CT scans, No blood tests (except to check calcium levels, which are fine) nothing.  They just give you pills, pat you on the head and ask you what else do you want from me then tell you to go away. This nerve blocker has bad side affects for me and it really only takes the edge off. 

Unsure who to turn to next....

Baldy's picture
Baldy
Posts: 226
Joined: Mar 2011

Sue,

From what you're saying, this does sound like either healing nerves or damaged nerves complaining from the surgery.  I don't know why your surgeon said it should go away in weeks, that was definately NOT the case with me or what I was told.  My surgeon and two different nurses I know said it would take much longer than 3 weeks.  I know it can be a problem, for you a bad problem, but if what you are experiencing is similar to what I experienced, it will take months (three or more?) for the major symptoms to go away.  Some of my minor post surgical symptoms are still with me two and a half plus years later.  My surgeon thinks they may slowly improve over time but doubts all of them will ever go completely away.

Maybe some sort of massage therapy might help.  I thought about this for a while, but never tried it.  It was never recommended to me, I just thought it might help speed things up.  I asked my surgeon about it and all he knew about was lymphodema therapy.  Do you have any lymphodema symptoms? swelling in the area of the surgery that seems like water retention?

You might at least want to talk to a message therapist, what you have may be better known to that branch of medicine and they may be able to do something about it.

Alan

rcsieg
Posts: 6
Joined: Feb 2012

had 25 lymph nodes removed from my neck 12 days ago.  Same symtpons of tingling, but now it has turned to severe pain.  Surgeon said after the numbness of surgery wore off the nerve endings are "waking up".  Advil, tylenol and pain meds do not help.  Hopefully it will get better soon.  I am going to ask my dr about the nerve blocking medication. The pain is awful!

Phyllis900's picture
Phyllis900
Posts: 21
Joined: May 2009

Hello sue,

         I had total thyroidectomy with radical neck dissection, with more than 90 lymph nodes removed together with parathyroid removed 5 years ago(13 inch scar). I can fully understand what u mean with the tingling. After 5 years, the tingling and numbness on the chest and itchiness is still there.... But you will get used to it... 

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