Osteoradionecrosis ORN .. what to expect?

Hi Lamina 

We have chatted on F B

Have you had an opinion from Cardiff as to who can treat you with PENTO? 
It’s the standard treatment now for ORN

if you have heard nothing then ask for a referral to Vin Patel at Guys. 
The length of treatment depends on the extent of the necrosis. 
Even severe necrosis leading to fracture can be treated. 
If you put osteoradionecrosis in the search at the top of the page you will find a few posts, some mentioning treatments 

You might find this useful 

www.dailymail.co.uk/.../Saved-jaws-wrecked-radiotherapy.html

Thanks Dani

Really appreciate you keeping me informed.

I've contacted Dr Patel and now  waiting for an appointment. 
I am hoping to hear from anyone whose going through this.. what to expect in terms of how fast it  might progress, things to do and things to avoid, how it might impact my daily life, my marriage.. so many questions..

Mina x

Hi Mini,

I’m so sorry to hear about your experience with Maxillofacial and the situation you now find yourself in. (Especially on top of what you’ve already gone through).

Unfortunately my partner has had a very similar experience with Maxillofacial after the removal of a wisdom tooth post-radiotherapy.

Last week I was concerned enough to request an emergency appointment for him and he’s now awaiting the results of an exploration and debridement of his molar socket, plus biopsy, to confirm if he has osteoradionacrosis.

(Which I think they strongly suspect that he has…and so do I).

I can see that you are waiting for your appointment with Dr Vin Patel at Guys.
Do you mind me asking how you went about getting the referral?

Was it via your GP or Maxillofacial consultant, or have you had to go private?

I’m trying to gather as much information as possible, (before we actually get his biopsy results), about the best route to go down and the most effective treatments if he’s got ORN, as I’m afraid we’ve lost a lot of confidence in our Maxillofacial dept.

Are Maxillofacial on board and supportive with the path you’re taking to deal with this?

I’ve pretty much read all of the post on the Head and Neck forum that mention osteoradionacrosis and

Dani’s posts have been particularly enlightening and very educational and have also given me a little bit of hope about the effectiveness of some of the treatments now available for ORN.

I wish you well with your current journey Mina and that you respond well to the treatment offered at Guys.

Hi Coolforcats. 

I’m pleased that the information you’ve got here has been helpful. ORN used to have such a bleak prognosis but newer treatments have been so encouraging. You still read of folk being on antibiotics for a year though. A lot of cancer centres are on board with PENTO which is good news. 
Do let us know how you get on. Xx

Bless you Dani!

Thanks for your very supportive reply.

I think I read on someone else’s post that they’d been prescribed antibiotics for 12 months and nothing else.
If we get the worse case scenario result I’ll be sending him in with all of this information!

Once again thank you for highlighting the PENTO treatment and including the link to the article.

You’re welcome. Good luck xx

Hi Coolforcats

I am sonsorry you and your partner are going through this. It was awful not knowing.

The results of my bone biopsy confirmed stage 3 ORN. Started PENTO and saw Vinod Patel. Met  a lovely helpful lady with ORN who is seeing good results with PENTO and who gave me more confidence in the treatment and in Dr Patel. You can see him privately at King Edwards but I think most of his work is NHS via Guys & St Thomas .. 

guysandthomas.nhs.uk/our-consultants/Vinod-patel

Although the ORN diagnosis isn’t good I am thankful that I’m finally on a course of treatment to manage it and that I will get to see the same person, someone who inspires confidence whereas I felt my concerns were dismissed for too long, two years of being fobbed off with a constant trial of antibiotics by different ‘members’ of the hospital oral and maxfac team.  I must say though once I told them that I wanted to start PENTO they were on board and gave me my initial prescription, 

Ive just started my PENTO journey and have decided to remain with Dr Patel rather than my local hospital maxfac team. I’ll update as I go along and look out for others here and on the FB HANC page who are on a similar pathway.

Wishing you well in your journey . All the best XX

Thanks Lamina23 for the really helpful update. I hope your results are good.

Lamina23 said:

 I must say though once I told them that I wanted to start PENTO they were on board and gave me my initial prescription, 

I wonder, could you ask Mr Patel if this thing can be dealt with quickly if caught early? It's mind boggling that teams can still mess about with antibiotics for so long considering ORN is such a well known, if uncommon, late side effect and a lifelong risk. It's unsatisfactory that we have to do our own research considering most of us don't know where to start.

Hi Lamina Glad to hear you E  been seen and started on PENTO everyth)ng x for you. Just so sad as Dani days we have to research for ourselves 

. Look forward to your updates. 
Hazel x