#41743 09-06-2007 06:15 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | If he doesn't have a suggestion, then he doesn't do enough of these surgeries to be giving you advice in the first place! Go, then, to a large university medical center or a cancer center with a good head and neck department and ask for a consultation with their prosthodontist.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#41744 09-07-2007 05:34 PM | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2007 Posts: 580 | Just can't keep quiet on this one,
August is correct, Jerry let me know your thoughts on this.
In my professional experience, Prosthodontists come in two categories those that do dentures and those that despise dentures. Prosthodontists trained in the southern states and the UK ( for some reason ) in my experience have more gravitation towards providing denture treatment. More experience in maxillofacial reconstruction and obturators (palatal plates), both immediate post surgical obturators and permanent prosthesis. Dr. Robert Hoar, Dalhousie, Class of 63-64, then continued his education in the "Big Easy" for his specialty training, was our local prosthodontic maxillofacial reconstruction expert. He was a member of the Capital Health Tumor Board until he recently retired. A loss the dental and OC community felt bigtime. He was consulted by the ENT's, plastic surgeons, oncologists and maxillofacial surgeons on most cases that may or could require prosthodontic replacement of teeth and/or oral surronding structures prior to surgery. Many times he was present during surgery to assist the surgeons in recognizing where the best surgical margins were located away from the cancer site so that an obturator would be successful. He was a mentor extrordinaire. I was lucky to have him as a professor. He made sure that every student in my class saw, adjusted and participated in a patients treatment who had/or needed an obturator. (plate)
I'm rambling again...
My point is...If your surgeon, as August has said knows of someone, visit them, if he cannot recommend someone then start calling every prosthodontist within 100 miles of you and ask them question, ask for references. Obturators can be very successful if constructed by a caring, understanding, skilled prosthodontist. Obturators get their sometimes poor evaluation from the experiences of patients who fell into the hands of inexperienced individuals who haven't constructed enough of them. Not that you don't have enough on your mind already but a detail that can make you much less miserable post surgery.
Cheers,
Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend. Live, Laugh, Love & Learn.
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#41745 09-07-2007 10:17 PM | Joined: Sep 2007 Posts: 14 Member | OP Member Joined: Sep 2007 Posts: 14 | My husband was told yesterday by his consultant (yes helen it is the LRI) that they are moving towards the obturator. no real explantion for this as they had previously told me that the decision would very much depend on the results of some bone samples they took during surgery and whether they showed any signs of cancer. This would mean he would need radio therapy and following this, the option to re-try the free flap would not be possible ever, as radiotherapy damanges the blood vessels permanently and it is a good blood supply which is the key to success. I have realised since contacting the forum how much I don't know, I am not aware of whether they have left any teeth and in fact what they have actually removed. My husband was in shock initally and was unable to discuss, and now he is recovering well I rarely see the doctors as they visit the patients outside of the visitors hours. My task now is to have a discussion with them and all your responses have at least pointed me in the direction of the right questions to ask. I am a bit nervous about the level of experience they are going to have with obturators as it is clearly not a treatment option which is not used very often by them.
Husband dx'd 18/07/07...Maxillectomy, palatectomy, neck dissection 30/8/07....clear margins, nodes dx'd 12/9/07 in the middle of radiotherapy and struggling.
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#41746 09-08-2007 01:01 AM | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2007 Posts: 580 | Katie,
I was just wondering... I know health care is different in different countries etc... My immediate family was allowed to be with me 24/7. Without them I would not have remembered anything. It was like being in a fishbowl...I talked with the doctors but 5 minutes later could not remember anything. I made a policy for myself to never talk to the doctors by myself or never be alone in the hospital..it took some leg work ... but for my 14 days post surgery there were only about 10 hours without a family member. I had a note pad with questions I came up with and my family member would ask them and write the answers down. I also had them write down what the doctors said at each visit to my bed. It helped me. You should ask if you can spend time with your husband outside of visiting hours and ask what times the doctors will be in and if able to do so be present when them come in.
I'm sure you already enquire about this but just in case I thought I would post this.
If I can be of any help or assiatance let me know and I'm sure Jerry is there for you as well.
Love and hugs to you and your family,
Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend. Live, Laugh, Love & Learn.
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#41747 09-08-2007 05:14 AM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | One thing I love about this forum is the ability to talk about the reality of these very difficult treatments.
I made a decision that I could not deal with this alone....and I made sure that my husband looked inside my mouth. One of my adult sons did also, when he took me for a checkup. It was not a pretty sight at first, and they saw it before I did....took me quite a long time to get up the courage, and then I did it when I was alone...BIG mistake! ...very upsetting.
My point is that you need to know what was done, and, for his sake, to be closer to him in his loss. If you don't even know what was taken, after six weeks, no wonder you are in a quandry about the whole thing.
You need to make someone give you an anatomy lesson, so you'll understand what was taken and what is left.
And it will bring the two of you closer. Get a small, bright flashlight, and a mirror. I use a rectangular purse-sized make-up mirror that I can get into my mouth. This is all you'll need to get a good look. For him to get a look, you'll need another mirror. I use an inexpensive shaving mirror that sits on the table. It has a magnifying side and a regular side. With the magnifying side, I can see things that are quite mysterious, since these structures are usually covered forever by the palate. I place the shaving mirror on the table, under a good light. Then I get my little flashlight, and put my little makeup mirror into my mouth, and I get a good look. I do this still to just be certain that things look ok.
Since he has just had a failed graft surgery, the area is going to appear raw and un-healed, most likely. Be prepared.
I will send you the picture I have of a final obturator. It is not mine, but mine is very similar....and a picture of a mouth that is not mine but looks similar....all healed up. The pictures are from a journal.
The obturators are changed as a person heals. The first one is usually just plate, placed at surgery. The sinus cavity above the removed palate is usually packed with antibiotic gauze, so all that is needed is a plate. When the gauze is removed a week later, then the opening needs to be filled to prevent leakage of food, liquids, and air, so the plate then is changed to an obturator, which is a plate with a three-dimensional "bulb" at the position of the opening. This upright portion helps to keep the appliance in place, and it hopefully seals the hole. If there are not enough teeth on the other side, or if the opening is too large, or if it is not prepared properly at surgery, or if the appl. is not made by a knowledgeable professional, then the chances for success diminish. I had fake teeth in this one, and they helped in opposing the lower teeth, which actually helped to hold this one in place, and they added immeasurably to my appearance and my confidence.
As the tissues heal, they change. For this reason, this intermediate obturator must change also, so every 3-4 weeks, a patient should get that appliance re-lined...soft, pliable material is spread onto the appliance, pushed into the mouth (should be relatively painless) to take the mold of the new shape of the mouth....and then it should fit better until the next re-lining.
When healing is complete, then a person may be fitted for a more permanent obturator. That is the type that I have now. It is made of metal, with an acrylic "bulb" and fake teeth set into pink "gums," much like a denture.
I'll send you the picture, though the one you would have at this point would not look like this one. However, the bulb portion would be the same, and the rest of it would be similar, but made of less permanent material, probably pink acrylic.
The "permanent" obturator does not have to be made of metal. It can also be made of pink acrylic.
But not just ANY prosthodontist is skilled at all of these considerations. The right one is one who works often with H and N cancer surgeons and does this often, likely in preference to routine dentures. They might do some denture work, but this should be their primary practice. If not, then they don't have enough experience to do a good job.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#41748 09-08-2007 06:13 AM | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2007 Posts: 580 | August you left me nothing to add...
That's why we love and rely on you so much.
I have a dental mirror with an led battery powered light that I was given at a trade show some years ago...I dont use it...if you want it, or no anybody who might, PM me an address and I'll send it.
Cheers,
Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend. Live, Laugh, Love & Learn.
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#41749 09-08-2007 06:50 AM | Joined: Oct 2006 Posts: 12 Member | Member Joined: Oct 2006 Posts: 12 | Katie I've just been discharged from having a 'free flap' on the 23rd. They took muscle from my upper abd and also skin. It looks like I tried to swallow a small football! Have a n/g tube and trach. Hopefully after my swallowing test on Mon will have them removed. They are what bother me the most. The doctor feels that I won't need my obturator anymore. Reconstructive surgery in the future. Hopefully no more recurrances! Can't wait to eat a BLT! If your defect is small like 'sister' Colleen's, I would personally live with the obturator. After my second surgery, my obturator was as big as an oyster shell and there were no teeth attached. This surgery has certainly knocked the wind from my sails and I wouldn't recommend it unless there was a huge defect and there was no other choice. Sue
Susan Holsberg ssc r maxilla r partial maxillectomy 9/25 brachytherapy 12/7 28 imrt 12/27 erbitux 12/20 recurrance 5/07 total maxillectomy keeping my fingers crossed
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#41750 09-08-2007 07:34 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Katie,
I really can't add anything significant to the suggestions and information provided by Dr. Mike and Dr. Colleen. (Colleen is now an honorary dentist after her disertation on obturators).
I will add, however, as in any profession there are those that are top notch and those that are just average. I'm sure that you have run into this whether it is your family doctor, a realtor or an attorney etc.. You do want to have someone with experience. Don't be afraid to ask to speak to patients that have been treated by the dentist.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#41751 09-08-2007 07:43 AM | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2007 Posts: 580 | Jerry, I concur with you granting the title of Dentist to Dr. Colleen. We, just need to get her published.
My greatest respect to my colleagues Jerry and Colleen.
Cheers,
Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend. Live, Laugh, Love & Learn.
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#41752 09-08-2007 08:46 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Katie As next of kin, you have the right to request a meeting with a Doc to receive a full report of your husbands condition. Knowing 2 of the consultants are not very forthcoming, your may be better with one of the senior registrars, I always found I could get better answers from them. Write the questions down if needs be, and if you can take someone else with you to be an extra pair of ears. Is he in the Kinmonth Unit? or has he been moved to a general ward? If he is still on Kinmouth find the ward sister as well and have a meeting with her. Cannot think of anything else to add to the good advice you have been given so far. Sunshine.. love and hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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