| | Joined: May 2015 Posts: 18 Member | OP  Member
Joined: May 2015 Posts: 18 | My husband had hemiglossectomy and neck dissection 2 days ago. He is doing really well, and in spite of the sutures and mesh on the graft site his speech is remarkedly good. The plan is to go home with an NG tube until mesh on tongue and big holding suture come out next week and he transists to oral feeding. I am worried about our bed. Do any of you have any good short term solutions to elevating the head of a queen size bed ENOUGH. I can't see him sleep on in a recliner all the time. We are anxiously waiting pathology results, but frozen section from OR showed negative margins.
Kate, wife of husband with
May 2015, SSCA left lateral tongue, T2N2bM0 Stage 4 , Age 58
06/01/15, L hemiglossectomy, modified L radical neck, clear margins, 2 nodes positive, no extracapsular extension. Perineural invasion on lingual nerve in tongue.
Tx completed 8/28/15, IMRT and 2 high dose cisplatin.
12/15 negative PT scan
5/16 negative PT scan
2/16 fitted with partial denture
12/16 3mm area of exposed mandible identified. Started on pentoxifylline regime
3/17 completed 40 HBO dives.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | On his side of the bed, you could put bricks or something large between the mattress and box springs. Also prop him up on at least 3 pillows.
Many of us have slept on recliners when we went thru this. Its only temporary. Most important is getting him comfy enough so he can sleep.
Good luck!
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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: Mar 2015 Posts: 55 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2015 Posts: 55 | Hi Kate. My procedure was quite different, but they still recommended sleeping at a 30 degree angle or so. The solution that worked for me was to get one of those study pillows that we used to use in college - the ones with stubby little arms on the side to rest your elbows on. Using 3 firm pillows I could build a nicely sloped ramp using that as a back-base to keep me comfortable. May be this would also work for your husbaand?
I should also tell you that on returning home I really didn't feel like sharing a bed for a while - despite Deb's and my 38 years of happy side-by-side. The jostling in either direction just felt like it would be too disturbing. Plus waking up every couple of hours for pain med would be a drag on her energy. So I slept on the couch (insert bad marriage joke here) for about ten days before moving back to the bedroom.
Good luck with your challenge. I can tell you from watching Deb that it takes a lot of energy, but that your husband will be really grateful for your help and support.
Peter, age 62 at Dx
3/27/15 Dx T2N2aM0 Tonsilar P16+ G3 SCC
4/6/15 Full PET clear except for above
4/24/15 TOLM tonsillectomy/clear margins. Neck dissection 20 nodes (1 w/cancer & extracapsular extension)
5/28/15 PEG in
5/27 - 7/10/15 Daily Radiation to 66 units cumulative; Cisplatin weekly X 7
8/24/15 PEG out
9/24/15 Full body PET - N.E.D.
12/22/15 CT and physical exam. Continued clear.
3/11/16 Physical exam. Continued clear.
7/12/16 One year post-treatment! CT clear.
7/7/17 2 years post - still clear
| | | | | Joined: May 2015 Posts: 18 Member | | OP Member
Joined: May 2015 Posts: 18 | You were right about recliner and couch. Today we go in for removal of staples and tongue bolster. He can't wait to get that stinky thing out. Im afraid it's going to be painful for him. If he "passes" swallow test then NG comes out. I think of today as the official end of his surgical phase.
Kate, wife of husband with
May 2015, SSCA left lateral tongue, T2N2bM0 Stage 4 , Age 58
06/01/15, L hemiglossectomy, modified L radical neck, clear margins, 2 nodes positive, no extracapsular extension. Perineural invasion on lingual nerve in tongue.
Tx completed 8/28/15, IMRT and 2 high dose cisplatin.
12/15 negative PT scan
5/16 negative PT scan
2/16 fitted with partial denture
12/16 3mm area of exposed mandible identified. Started on pentoxifylline regime
3/17 completed 40 HBO dives.
| | | | | 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 | I had to sleep with a wedge pillow because flat on my back, I stop breathing.
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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | I have one of those electrical incline bed's, and couldn't do without it. There are so many brands available these days.
Good luck.
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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