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#196445 - 05/15/18 09:10 PM replacement parts?  
Joined: May 2018
Posts: 1
susansmc Offline
Member
susansmc  Offline
Member

Joined: May 2018
Posts: 1
Hello all. I was diagnosed with stage 4 mandibular cancer in August 2017 and had left side of jaw removed then. Thank heavens my leg did not need to be used for a replacement part but, rather, the initial replacement is titanium. I am now advised that I should have $15,000+ worth of dental reconstruction work done, none of it covered by any insurance. I am advised by docs that I "really should" have this work done as without it, over time, my remaining teeth (nine were removed) are likely to shift and they advise I might be more comfortable with what I call "replacement parts."
My current thinking is that this expenditure in not at all worth the cost. I am 70, don´t look very much disfigured at all right now and I keep thinking of the better uses to which I can put this sum. I am still in a fair amount of pain in my jaw area but no one advises that prothesis will help in this regard at all.I would very much appreciate what others of you might share on this issue. Thank you.
Susansmc


Susansmc
#196447 - 05/16/18 10:54 PM Re: replacement parts? [Re: susansmc]  
Joined: Jul 2012
Posts: 3,117
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,117
NYC
Welcome Susansmc!

I’ve had a mandibularectomy with a fibula free flap from osteoradionecrosis, and haven’t had a problem since a month after surgery, but did have delayed healing with the fistula closing from the trache, and fibular flap, which required further surgery.

I’m not sure of your case, maybe the same, but I had to wait months, actually a year, for healing before dentures were even discussed by my ENT, and lesser chance with implants from all the radiation I had. Unfortunately, right when i was going to see the Dr, I had a heart attack, so it’s another years wait due to the blood thinners.

Another, I assume you’re all clear as far as cancer? I had to be cancer free for several months before dentures or anything was discussed.

It’s possible to have oral changes with the missing teeth. I did, when slowly my teeth eroded, and were ground or fell out, due to not being able to have any corrected due to ongoing treatment.

Maybe you should see the doctor regarding the pain. I had none pretty much after surgery or maybe they can prescribe medication.

I hope this helps, and good lick!

One question that came to me after posting, was I assumed you had radiation, did you?

Last edited by PaulB; 05/17/18 12:33 AM. Reason: Radiation

10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
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 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






#196450 - 05/17/18 01:55 AM Re: replacement parts? [Re: susansmc]  
Joined: Jun 2007
Posts: 10,148
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,148
PA
Welcome to OCF, Susan!

Ive also had a mandibulectomy done. I had previously undergone radiation treatments so had compromised healing among other complications. I had already lost my teeth due to radiation damage so my dental issues didnt affect the big surgery (4 months later) at all.

The very first thing I thought of when reading your post was I wonder if she already went thru radiation treatments. I see Paul also asked about that. Radiation treatments can cause patients to have many long lasting issues, some dont show up for years after being treated. Theres a big difference in how to answer your questions depending on if you had rads or not.

I also thought like Paul and was thinking your doc needs to know that you still are continuing to have pain. Some patients can have the pain from having major surgery never seem to go away. Others are luckier, like Paul and have improved in time so they arent hurting anymore. I was like you and had constant pain issues with my shoulder and the left side of my neck and face (surgery side). My doc eventually sent my to a pain management doctor who tried a couple things to no avail. Your pain must be addressed! Nobody should have to go thru having pain every day. Being in pain is actually detrimental to a patients overall health. I know pain also can have a negative impact on the mental health part of being a cancer survivor. Call yoru doc and make an appointment to get some pain meds to alleviate your pain.

Which of your doctors advised you to get $15,000 worth of dental work? Im not sure what you mean by "replacement parts" or "prothesis". Im guessing you are talking about dentures or implants??? After what you've been thru you should be seeing a dental specialist (even more important if you have had rads). If you can find a dental oncologist that would be a very good choice, or a prosthodontist. Do you think your current dental situation was from your cancer or its treatments? Sometimes it all comes down to what codes are used for billing which can be from someone selecting the wrong one making that procedure where its not covered.

Sorry I wasnt more helpful. Once I know a little more about your situation my reply will be geared more towards your current situation.


Christine
SCC 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 smile
#196451 - 05/17/18 02:00 AM Re: replacement parts? [Re: susansmc]  
Joined: Jun 2013
Posts: 239
KristenS Online content
Gold Member (200+ posts)
KristenS  Online Content
Gold Member (200+ posts)

Joined: Jun 2013
Posts: 239
alabama
Have you figured out what the pain is? I was having pain, nerve pain we think, before my recent dental work. Was on my second neurologist to sort it out, because as far as we could tell it wasn't technically related to any of the cancer surgeries I had. (Could have been nerve damage due to treatment, who knows...) Anyway, I ended up having to have all my teeth removed, unexpectedly, due to damage ... was expecting only a handful to have to come out ... and as a bizarre side effect, the pain has gone away. We had narrowed my probabilities down to trigeminal neuralgia and / or TMJ ... it probably still is or was, but it's kind of hard to grind your teeth when you don't have any, so if that's what it was, that pressure was relieved, at least! (It's the one good thing to come out of this insanity.) I'm in my 40s and wasn't planning to face any of this sort of dental work for a long time yet, since my cancer wasn't as big a deal as what you dealt with, but radiation does what radiation does.

Not sure if any of this will help you at all or not ... but the pain relief was an unexpected bonus out of a bad situation for me. Might be for you, as well.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery

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