Patient / Survivor Header
Topic Options
#193621 - 12/22/16 03:24 AM ORN
Kate12 Offline
Member

Registered: 05/17/15
Posts: 17
Loc: Wisconsin
It's been awhile since I've posted, but continue to lurk periodically. Several weeks ago at a routine follow up with surgeon, a small area of exposed bone was identified. Depending on who we talk to they are calling it a stage 0 or stage 1 ORN. Any experiences with HBO vs medication management. Also wondering just how fast this progresses. After a long 18 months, we are slated to leave on an extended vacation on NY Eve and are wondering whether to go or not. He stopped wearing partial denture, and is using an oral rinse. We'd like to delay HBO for about 6 weeks. Any thoughts appreciated.
_________________________
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

Top
#193622 - 12/22/16 04:27 AM Re: ORN [Re: Kate12]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9435
Loc: PA
Hi Kate! There are tons of posts about ORN (osteoradionecrosis) and HBO (hyperbaric oxygen therapy). Unfortunately, HBO has as many pros and it does cons depending on who you talk to. As far as I know, there isnt much scientific data either. Ive dont more than my share of dives and have always found them very helpful. They are also very time consuming. I would spend about 4 hours a day from the time I left my house, got checked by nurse, changed clothes, did HBO, checked by nurse again, changed clothes and returned home. For major wound healing issues, both HBO and IV antibiotics may be used together. It took me over 8 months of the IV antibiotics 3x a day along with HBO to heal after a complicated surgery to an area that had been radiated.

Im assuming the ORN is a result of his rads??? If your husband has not gotten a second opinion, that would be an excellent place to start. If possible, take him to a CCC for the second or even third opinion. With a team based approach, he would have a very well rounded exam and treatment plan.

Best wishes with everything. Please keep us posted on how yoru husband makes out.

I suggest speaking to all your husbands doctors about delaying HBO and taking their input into consideration to make the decision. OCF members are patients/survivors and caregivers not medical professionals. We dont have years of medical school or experience with patients, including knowledge of their full medical histories. I would love to help but I dont feel qualified to know if waiting is ok or not.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

Top
#193623 - 12/22/16 04:35 PM Re: ORN [Re: Kate12]
PaulB Offline
Patient Advocate (old timer, 2000 posts)

Registered: 07/06/12
Posts: 2935
Loc: NY
Kate,

I'm sorry to hear that, but hopefully it can be treated at this early stage, and resolve, before progressing further.

I was dealing with ORN for several years, conservatively and surgically, but recently had invasive jaw surgery and reconstruction (segmental mandibulectomy with a fibular free flap) after progressing to stage lll, which surgery is the only way it can be resolved at that point. Mine was a result of teeth extractions (injury) after radiation, as are most ORN cases, and as most are in the the mandible too. It sounds like your husband's dentures were possibly the injury after radiation? There are some cases that it can occur spontaneously or prior use of biphosinates also.

ORN has three stages; I, II, III, with those having prior radiation, and exposed bone for more than three months, so maybe thats why some say stage 0 being it's only several weeks, and each stage has its own requisites. One can present or progress to any stage initially or in step wise process anytime.

It's usually treated in a step wise by stage with early or stage l treated conservatively, possibly with a combination of HBOT, irrigation, and medications such as Antibiotics (Augmentin), Chlorhexidine rinse, salted water, Pentoxfylline & Tocopherol. If there are good results like reduction of exposed bone, stabilizes, additional treatment may be continued, if not, or it progresses, it goes to stage ll or even lll if there is a fracture, fistula develops.

As mentioned, HBOT is controversial with some, but all who I saw recommended it, 20/10 for extractions with the Marx Protocol, and think most will to err on the side of caution, and recommend its use. As suggested, see a CCC that is experienced in ORN. I'm not sure how fast this may progress, infection develops with increased pain, as it may depend on the person health, how it's treated, oral care as the mouth is a hostile environment, aggravating conditions like smoking, alcohol, diet, even the dentures, bone health, and other factors.

I had a number of panoramic x-rays, CT scans to monitor my progression, and followed closely by several Oral Maxillofacial Surgeons, ENT, Radiation Oncologist, sometimes on a weekly basis for examination and debridement, and medications for infection and pain from abscess, osteomyelitis.

Good luck
_________________________
10/09 PET T1N2bM0 Tonsil
11/09 Taxotere Cisplatin 5-FU IC Hosp 6 Months
07/10 PET
08/10 PET
01/11 35 IMRT 70Gy
06/11 30 HBO
07/11 PET
08/11 RND PNI
04/12 PET
06/12 SND PNI LVI
07/12 CT
08/12 RND Pec Flap Graft, IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotete Erbitux
03/13 PET
08/13 PET
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy
12/13 25 Proton Therapy 50Gy 6 weeks Carbo
06/14 PET
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Segmental Mandiblectomy Fibular Free Flap







Top
#193652 - 12/30/16 06:12 PM Re: ORN [Re: Kate12]
Neumann Offline
Member

Registered: 06/27/15
Posts: 11
Loc: Il
HI Kate,
My husband Steve did 30 dives prior to surgery for ORN exposed infected bone in his maxilla and also to remove a wisdom tooth lodged in his sinus. He suffered along taking antibiotics on and off for 6 months before surgery was decided. The HBOT was time consuming but needed before surgery. We were told the hole left in Steve's upper jaw after surgery would never close and he would wear a huge prosthetic. Well thanks to the HBOT the hole closed nicely in 2 months. He was considered a grade 4 before surgery. I could see the exposed bone and lots of infection. He hated the HBOT treatments but I really believe they helped him heal. He went to a facility for HBOT where it was a multi chamber. There were other people in the sessions along with a great team of specialists. Every day it took 4 hours but 2 hours of that was driving. I went with him everyday to encourage him and make sure he completed the 30. It was tough but well worth it.
_________________________
Husband diagnosed 2/13 lower lip scc in situ 2 surgeries never scanned. 8 months later diagnosed soft palate scc stage 4A, tonsil and nodes involved. Hpv positive. Told by ENT small t1 tumor brought in to surgery for tumor removal and neck disection. Aborded surgery. Stage 4!! Finished rads and chemo Jan 2014. Grade 4 ORN of the maxilla, 30 HBOT , sinus surgery , maxilla surgery, buccal flap 4/2015. Doing good. 9-2015 red patch on soft palate , waiting to see.

Top

Support OCF


Help OCF

Shop Amazon and Help OCF

Who's Online
0 registered (), 19 Guests and 4 Spiders online.
Key: Admin, Global Mod, Mod
Forum Stats
11,119 Registered Members
23 Forums
16,829 Topics
189,190 Posts

Most users ever online: 306 @ 08/21/16 04:53 PM
Top Posters
ChristineB 9435
davidcpa 8311
Cheryld 5260
Brian Hill 4734
Gary 3552
Newest Members
Lyndy Lu, Nick B, Linda Fla, Mapar, whatnext
11119 Registered Users
Brag Box