#27871 11-11-2005 01:32 AM | Joined: Oct 2005 Posts: 14 Member | OP  Member
Joined: Oct 2005 Posts: 14 | In the last week I have begun to have problems with my vision. Specifically - I am seeing lights dim and then get very bright - kind of like a power surge makes the lights in your home dim and then brighten up. These "flashes" are getting more frequent - they started out just 2-3 times per day - now they happen every hour or so. Also I'm having sharp and severe ear pain (only in the ear on the surgery side). Should I be concerned, or are these fairly common symptoms?
I have a CCC appointment in Baltimore on Tuesday 11/15/05 - should I call my regular doctor? I don't want to panic, but I don't want to be passive if this is something serious.
Thanks in advance for your ongoing support.
Jenn
Biopsy results received: 9/28/05 Partial Glossectomy right side 10/5/05 - 2 good margins - severe dysplasia on the 3rd margin...
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#27872 11-11-2005 03:13 AM | Joined: Jul 2005 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Jul 2005 Posts: 207 | Hi,
See or call your MD soon. Also see an opthamologist. Chemo caused me a stigmatism in one eye. Common I have heard. But you should be checked ASAP.
Steve
SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
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#27873 11-11-2005 03:31 AM | Joined: Sep 2005 Posts: 325 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2005 Posts: 325 | Jenn, I fully agree with Steve...your concern is appropriate, and you should get this checked out. Whether or not it is a direct result of the surgery you have had, it is a new and potentially important set of symptoms and should be looked at ASAP!
Don't cancel your CCC appointment, but hie thee to a Doctor in the meantime!!
Andrea
SCC L lat tongue,Dx 9/15/05 T1N0MX L MND and L lateral hemiglossectomy 10/03/05. Recurrence 11/15/06 2nd surgery 12/04/06 hemiglossectomy 3rd surgery 01/15/07 tonsillectomy Radiation 01/25/07 to 03/08/07 3-D/CRT X 30
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#27874 11-11-2005 03:35 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hello Jenn, Without trying to alarm you, I would suggest an immediate phone call to both your regular doc and to the doctor you are seeing on Tuesday. I have not heard anyone here express that visual symptom before. It may be related to your treatments or may not but I think it is worth the call. The ear pain is common but I would be sure to mention that as well. Don't understate the level of pain.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#27875 11-11-2005 03:44 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 | Jenn,
I have had this problem since chemo. I describe as a white blurry flash but the colors go away and it lasts about 1-2 seconds. I notice it most (I know this will sound gross) when standing up getting ready to go to the bathroom. It seems to be only as I use the muscles that start the flow. I have talked with the doctors and even 2 years later, it is less frequent but has not gone away. There have been no explanations.
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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#27876 11-11-2005 06:52 PM | Joined: Jan 2004 Posts: 316 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2004 Posts: 316 | Hi Jenn,
I had vision problems after the end of radio, saw intermittent stranges colours and flashes. My Radio Onc suggested it may be from losing weight quickly, and perhaps from losing body fat around the eyeball. I'm not sure if I really believed it, so I saw an opthalmologist and my eyes tested fine, no cause for concern. I didn't like that opthalmologist though, so have never returned. And the flashes ceased after a couple of months.
Eye tests with another doctor recently for a new pair of glasses, were fine. I don't have much problem with my eyes now.
Cheers!
Tizz
End of Radiation - the "Ides of March" 2004 :-)
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#27877 11-13-2005 01:08 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Jenn,
I second Mark's remarks. Whether anyone else has had similar symptoms is not important. I'd get this checked out at CCC and make certain you don't forget any symptoms. I'd keep a log between now and your apointment of all problems and when they occur. I'd also include what I was doing and what I ate that day. Here's hoping it is nothing but get it checked out.
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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#27878 11-14-2005 11:05 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | I agree that good communication with your care team is essential. Just wanted to let you know that I too have had weird vision problems (blurry vision and double vision) and lately been feeling like I'm going to blackout (dizzy). I've talked to the Drs about it and they blame it on changes to the ear canals (?) & some other "tube" I can't recall right now; from the effects of radiation, and possibly dehydration too. Just thought I'd share that for whatever it's worth. PS: I am NOT a Dr 
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#27879 11-15-2005 02:46 AM | Joined: Sep 2005 Posts: 7 Member | | Member
Joined: Sep 2005 Posts: 7 | I have just found this page and it has helped so much. Mum has had blurred vision and pain in her head and the top of her eye. Doctor is referring her for a brain scan as a precaution. so pleased to read this page as it seems a few people have suffered this. | | |
#27880 11-15-2005 04:19 PM | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 155 | Please get it checked ASAP. Bob too had some vison problems and lightheadedness about seven/eight months after treatment. His Rad doc thought it might be from a hardening of the arteries in the radiation field. Turns out it was from diabetes and slightly high blood pressure. They think the diabetes is from his rapid wieght loss and then wieght gain. I had to threaten him to get him to check it out but now with meds and a change in diet he is right as rain...don't mess around with these symptoms any of the causes untreated could be serious but most likely can be treated.
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
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