Mandibulectomy and Fibula Free Fap reconstruction.

Hi Brian and welcome. So sorry to see you here facing more surgery. There are a few recent posts if you look in the search here Mandibulectomy

Hopefully somebody will see your post and reply. You could join in one of the threads too

One of our most helpful and wonderful members Sophie66 might be around as well. She has had extensive jaw surgery though for a different reason. She will probably be around too. 

Best wishes

I had a similar operation two years ago. It was a rim mandibulectomy with forearm free flap - so a section of jaw only and no bone reconstruction required.

It was major surgery and involved a tracheostomy. Obviously this meant being able to neither eat nor speak immediately after surgery and a lot of swelling. I also had a neck dissection which contributed to post-surgical effects.

But the surgeons are absolutely amazing and none of the outcomes were anything like as bad as I feared. Recovery takes months to years, and some effects linger. But two years after I’m very comfortable with both function and appearance. Some numbness and slightly less jaw opening and occasional aches around the surgery area are the reminders of the surgery.

I received so much NHS help in recovery on speech, diet and physiotherapy and with lymphoedema (related to the neck dissection) and that contributed to much better outcomes than I expected.

Surgery to mouth and jaw is a very frightening prospect, but it’s all so expertly handled on the NHS with so much post-operative support that my experience was that the outcome was much, much better than I feared. 

Good to hear you’ve recovered well Daffne xx

How long was your tracheostomy in for? 

Thank you. All credit to my excellent team at Guy’s and St Thomas’s.

I think the tracheostomy was only in for five days. As I recall it was mainly a precautionary measure in case of post operative swelling obstructing breathing. 

But being warned that you would come round unable to speak or eat immediately after the operation was an alarming prospect at the time.

I forgot details, but I think it was the SALT team (speech and language therapy) that helped with recovering normal speech post-surgery which affected mouth and tongue.

(Just looked it up and it was CHANT - community head and neck therapy that oversaw all the post op therapy).

Hi Brian

So sorry to hear that you need more surgery after already having had one and radiotherapy. It is so disappointing when this happens.

  I understand your apprehension as I had a similar experience. My first jaw cancer was diagnosed in 2013 when I had a partial mandibulectomy followed by radiotherapy. I did not need a reconstruction but since have had 2 maxillectomies (2019 and 2022) more radiotherapy and a graft taken from my forearm to cover the hole in the roof of my mouth. I am doing fine after these last 2 ops and am currently cancer free. My surgeon and medical team are fantastic and I can’t fault their care.

My experience sounds very similar to Daffne’s with much the same result after the mandibulectomy. I did not have a tracheostomy for the mandibulectomy but have had one for each of the maxillectomies. The tracheostomy was only in while I was in intensive care and was removed before I went onto the ward.

With the mandibulectomy the naso gastric tube was removed before I went home from hospital.

It took me about 8 weeks after the op before I was back on my feet but then I was able to get back to work and do almost everything that I did before. My mouth opening was slightly reduced after this op but nothing that prevented me from being able to eat fairly normally. I did have some altered sensation in my face and neck where I had the neck dissection and op but over time I have adjusted to this and hardly notice it much now.

As Daffne says the medical teams are great and you will be well looked after by them.

Make sure you ask your surgeon all the questions you have so you are well prepared for the op.

Sending you my very best wishes for the op.

Lyn

Hi Brian,

I am so sorry to read that the cancer has returned. Such a blow for you.

My Dad is currently recovering from the exact procedure that you may be facing. He had his surgery on 20/02/23. He should be out of hospital within a day or two (he had a set back, which I will mention below).

It is a big and daunting procedure for the patient. For the surgeons it’s routine surgery that they perform around once a week. That should give you the confidence that they are very well rehearsed. The procedure takes around 12 hours. My Dad was in intensive care for two days following the procedure. It can be a one day stay. He was then moved onto the ward and stayed in the HDU bed for around 3-4 days. After that he was moved into a shared room.

When he first came round in intensive care he was very groggy and it took half a day for him to be fully “awake”. He had a white board and pen to enable him to communicate for the first few days until he felt able to try speaking. The reconstruction felt very alien at first and there’s swelling too. Swallowing was painful, but the morphine and other painkillers helped. He really struggled with the amount of saliva that his body was producing. It seemed to be an extreme amount. This unfortunately led to the free flap failing on day 9. This is highly unusual as only 3-4% fail. He was super unlucky. 

He went back into theatre for the free flap to be removed. They harvested muscle and tissue from his forearm. Again, it was daunting facing up to a repeat procedure and we were worried about the anaesthetic because he’s 74. However, he was remarkable and went through another 13 hour operation. We were back to square one with the recovery, but at least this time we knew what to expect. I asked if there was something they could do to prevent the saliva issue reoccurring. They put a patch behind his ear which helped to control the production. I tell you this in case you face the same issue and you’ll know there’s something that they can do to alleviate the problem. 

He went into the second operation knowing they’d fit a tracheotomy. He was not at all happy at this prospect. However, it was only in for 4/5 days and then removed. 

Two weeks post the second attempt, he looks good! The swelling is almost gone and he can almost talk normally again. He’s got a slight lisp, but that might go as the new flap swelling goes down more and/or with speech therapy. He’s walking well on his crutches and so far, the skin grafts are growing well. He’s currently drinking the milkshakes and tried his first mushed up dinner tonight. He’s frustrated because he couldn’t eat very much of it and feels that might hinder his discharge. He will find out tomorrow. 

Mum and I have met so many patients and families over the last month. There’s happy stories and harrowing stories. There’s no doubt that the Mandibulectomy and free flap surgery is a massive thing to face and go through, but the nurses, doctors, therapists and MacMillan nurses are all amazing. If you have access to a Maggies too that might be helpful.

I am sure that my Dad would be happy to answer any questions that you may have. Please message and I will pass them on.

Wishing you all the very best and a great outcome at the end.

Jenny x

Hi Jenny

Your poor dad, fancy having to go through the op a second time because of the free flap failing.  I was also given the warning of a possible free flap failure but was very fortunate that mine worked out fine. There is a very low rate of this happening and your poor dad was one of the unlucky ones.

I found the tracheotomy a bit daunting initially and had to resort to all sorts of hand signs to try and get my message across to the staff. They eventually got me a pen and paper and that helped. Thank goodness it is only short term while in hospital.

Sending your dad all the best for his recovery.

Lyn

Hi Jenny, Thank you so much for you reply and advice. I have just been told that my surgery has been cancelled, It was booked for next Tuesday. All pre-op etc done. It is now booked for the 25th of April.  Obviously the delay is very frustrating and stressful. I hope that your dad continues to improve and  that he can come home soon.

Wow, that is some journey Lyn. I am in admiration of your resilience. Thank you for your reply.

Thank you for your reply Daffne.  I hope you continue to keep well.