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Joined: Dec 2003
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
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If the ENT says neuralgia perhaps they could get you referred to a neurologist. Neuralgia is a catch all to mean nerve pain. It can take on many forms and constant stabbing pain like a toothache would be neuralgia. Any type of constant pain in a given area could trigger an inflammatory response that could include swelling. Many drugs could be tried although neuralgia is hard to treat per se.


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
Joined: Dec 2003
Posts: 2,606
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Just curious but have you seen a neurologist? From my experience, nerve pain is the worst of all pain. Things like ion channelopathy could cause swelling and/or intense pain. If one doc says nerve pain, ask for a referral.


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
Joined: Mar 2013
Posts: 421
Likes: 1
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Mar 2013
Posts: 421
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I have neuropathy in my toes from chemo. No pain now but I really can't feel them anymore. However, I can attest to the severity of nerve pain as I developed it from the top of my head to my torso and arms about a month ago. It was difficult to wear clothing. My team attributed it to neuropathy caused by the chemo. I was prescribed Lyrica and Tramadol which cleared it up within 5 days. It came back two weeks later from my waist down. Again, a round of Lyrica took care of it.

Yep... treatment... the gift that keeps on giving!

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
Joined: Jul 2012
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 4
I have severe neuropathy for almost 4 years now from chemo, 24/7, in the hands, legs, causing muscle paralysis. It got somewhat better, but still can't feel or move my feet or move my toes. Nothing has helped. Most clears up in time, a few months, but in some cases can last as long as 17 years, and depends on the type of chemo, the amount, infusion rate, duration, and any underlying medical issues that can contribute to neuropathy.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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