| | Joined: Mar 2009 Posts: 11 Member | OP  Member
Joined: Mar 2009 Posts: 11 | Shortly after my radical neck dissection in 2008, my vision became impaired due to Intercranial Hypertension. This led to another week at the hospital for spinal taps and drug therapy. I have been on Diamox ever since. Just wondering if others had this complication and if they were able to wean off the Diamox.
Kevin
Sept 2008: SCC, Rt Tonsil & 2 Lymph nodes, Stage IV
Radical Neck Dissection, 35 session radiation
Positive HPV
PEG tube....should have done earlier. Lost 40 lbs.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Sorry, Kevin I have not heard of this before. There could be others who have experienced it but havent posted about it.
Best wishes with everything!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | Hi
someone posted about this just the other day but called it by another name. Pseudotumor cerebri???
Of course I cant find the post now but I do remember they also had issues with hydrocephaly and a shunt. Maybe you could do a search on hydrocephaly and the person will pop up?
May you could get in touch with them directly?
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | Hi Kevin
Me again - the poster was Wendy B and she posted in the Medications section. The title of the post was "stroke during MRND". So far, she has not received many useful answers either - maybe because it is an unusual complication and none of us have any idea??
However, as I already suggested, maybe you can compare notes directly?
If you find anything out yourself, it might be worth posting for future sufferers?
Good luck
Karen
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Truthfully it is very possible to have a stroke r/t a neck dissection, since the location of a dissection is close to the carotids, its very possible that scar tissue, clips or anything like that could cause a minimization or loss of blood flow to the brain, it could cause plaque to break off and move, there are numerous things that can happen. The intracranial hypertension also has a similarbcause, swelling and pressure related to build up of fluids, caused by scar tissue, compromised pathways, hypertension for the same reasons. Unfortunately you need to see a neurologist to determine the cause of both. Best of luck.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jun 2012 Posts: 24 Member | | Member
Joined: Jun 2012 Posts: 24 | Hi Kevin.
I would love to chat. Here or on the phone. Happy Easter. Hope to hear from you.
-Wendy
Wendy 48@dx
Dx 2/11 stgIVSCC BOT
Dx 3/11 stgI breast (3rd of 4 sisters dx'd)
4/11 dbl mastectomy; no further tx reqd
5/11 PEG placemt;
5/11-7/11 chemox7;IMRTx35;
MRND 9/11
11/12 Dx:papilledema;hydrocephalus;psuedotumor.
11/12 LumbarPeritoneal Shunt
12/12 PEG Out; 100 lbs lost
All scans clear
| | |
| Forums23 Topics18,259 Posts197,166 Members13,350 | | Most Online1,788
Jan 23rd, 2025 | | |
|
