| Joined: Mar 2010 Posts: 12 Member | OP Member Joined: Mar 2010 Posts: 12 | Hi Everyone,
The last time I posted was November last year, I was diagnosed with 'Stage 1 Osteonecrosis'! and was referred to the oral surgeon/dentist at Sunnybrook Health Sciences Centre in Toronto, Ont. I was eventually told to set aside 3 months for the medical establishment in Ontario, Canada to provide treatment. They are a little vague about what that involves, however my understanding was HBO followed by more surgery.
Now I have had 15 'Dives' or treatments of approximately 2 hrs. each.
The Oral surgeon wants to perform surgery that consists of opening up my gums and scraping away the dead jaw bone & extracting my last 2 remaining teeth on the lower jaw then stitching it all up and hoping it heals.
I was to have had 20 HBO sessions before then surgery then 10 more HBO sessions immediately after.
The doctor at the facility that provides the HBO wanted the timing to be continuous, ideally finishing the first 20 dives, have the surgery the following day, then the day after, right back into the HBO treatments for as many as 20 more to maximize the opportunity for healing.
But the doctor doing the surgery has said that the continuity does not matter. My surgery is scheduled for 2 weeks after my first 20 dives finish.
I protested to no avail, and then mentioned it to the HBO centre, that doctor has said he will try and continue the dives right up until the surgery!
So what I want to know is if anyone else has had this problem?
I am getting fed up with these conflicting opinions about the procedures and am loosing confidence in the surgeon who will be doing the surgery. He wants to extract those last 2 teeth on the bottom, (I would like to keep them).
All this hyperbaric oxygen is expensive and inconvenient. Do I really need an extra 2 weeks of HBO before the surgery? Or will what I have already had be wasted by waiting 2 weeks after for surgery?
T4N0 squamous cell carcinoma of the anterior floor of mouth 2 surgeries, 33 radiation treatments w/3 chemo sesions | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hey -
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: Mar 2010 Posts: 12 Member | OP Member Joined: Mar 2010 Posts: 12 | Hi Cheryld,
My post went up before I finished writing it.
How are You?
T4N0 squamous cell carcinoma of the anterior floor of mouth 2 surgeries, 33 radiation treatments w/3 chemo sesions | | | | 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 | What you are having done is called Marx Protocol. Its 20 HBO dives prior to having extractions or in depth dental work like what you explained and then 10 dives afterwards. Ideally it would go like clockwork. Do the 20 dives and then surgery and within a couple days complete the next 10 dives. It will not make a big difference is there is a few days between this schedule.
Ive done many HBO's and they have helped me tremendously. Best wishes with your upcoming procedure and dives. 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 2010 Posts: 12 Member | OP Member Joined: Mar 2010 Posts: 12 | Thanks Christine,
I was able to search for the Marx Protocol, and found some more information; ________________________________________________________________________________
Marx Protocol for ORN and Tooth Extraction The most widely accepted and extensively documented indication for hyperbaric oxygen in chronic radiation injury is its application in the treatment and prevention of radiation necrosis of the mandible. Robert E. Marx, DDS developed the following original staging system for classifying and treatment mandibular osteoradionecrosis (ORN) and treating former head and neck cancer patients prior to extraction of teeth. Benefits of HBO2 � Vascular improvement � Expedited healing of ORN � Better tolerance to surgical wounding prior to oral surgery � Prevention of mandibular necrosis as a result of tooth extraction � Freedom from pain � Restoration of mandibular function and wearing of dental appliances, if needed � Maintenance of intact mucosa and skin over all bone Stage I ORN/Extraction Patients with exposed bone who have no serious manifestations of those in Stage III. Begin with 30 HBO2 treatments with no debridement or only minor bony debridement. If patient progresses, give 10 additional HBO2 treatments. Stage II ORN If not progressing, Stage II patients should receive surgical debridement and 30 HBO2 treatments followed by 10 post-operative treatments. Surgery for Stage II patients must maintain mandibular continuity. Stage III ORN If mandibular continuity is not achieved, Stage III patients are entered into a reconstructive protocol where a mandibular resection if followed by a planned reconstruction. All necrotic bone must be surgically eradicated. Stage III patients receive 30 HBO2 treatments prior to resection followed by 10 post-resection treatments. ______________________________________________________________________________
... and thanks for the good wishes.
T4N0 squamous cell carcinoma of the anterior floor of mouth 2 surgeries, 33 radiation treatments w/3 chemo sesions | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Show this to your surgeon! Seriously tell him you're afraid of undoing all the good that has been done - I would continue the treatments up to surgery!! I imagine the government is paying for the dives so continue. I've had the same number ofrad treatments you've had - ORN is scary!! I'm just very surprised they didn't coordinate better - is your surgeon at the same hospital?
Good luck! Hope everything goes well
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: Mar 2010 Posts: 12 Member | OP Member Joined: Mar 2010 Posts: 12 | Well Cheryld, that's what I thought too.
Skip the surgery for now, just finish the dives.
I will see the original surgeon today, and find out what he thinks.
I'll let you know.
T4N0 squamous cell carcinoma of the anterior floor of mouth 2 surgeries, 33 radiation treatments w/3 chemo sesions | | | | Joined: Mar 2010 Posts: 12 Member | OP Member Joined: Mar 2010 Posts: 12 | I have been to see the original oncologist - surgeon, he was the one who referred me to the oral surgeon who wants to pull my teeth.
The original doctor has agreed to help me get a second opinion. (in Ontario, there are not too many Oral Surgeons, so I will am lucky to get a referral to the one at Mt. Sinai hospital in Toronto).
This Hyperbaric Oxygen treatment is new in Canada, it's not widely available, so many doctors are not familiar with the procedures and effects. (More accurately, many doctors are skeptical of the procedures and effects!).
After 22 HBO dives, my osteonecrosis seems to have stopped!, my gums do not show any exposed jawbone. I am very happy. Impressed too, I didn't have a lot of faith in the healing effects of the HBO.
So following the Marx Protocol, I will just continue with my dives. The doctor at the HBO clinic has graciously extended the treatments for as long as he has the extra time and space.
All this is GOOD NEWS, plus+, for the first time in 2 years, I can finally see-feel my adams apple!, (my bottom jaw & neck had been swollen with lymphedema).
T4N0 squamous cell carcinoma of the anterior floor of mouth 2 surgeries, 33 radiation treatments w/3 chemo sesions | | | | 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 | Art, excellent progress!!! I bet you are thrilled with the results. On the 3 occasions that I did HBO, I always had positive outcomes. I have alot of faith in the HBO dives. They have worked wonders for me. Im always happy when someone comes back with such inspiring good news. It gives us all hope that things really can get better. So glad that this has helped you so much. 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 | | |
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