Hello to all, Sorry its been a while since my last posting,I have been with martyn in Gloucester hospital for the 3 weeks since he had his Laryngetomee.He had his surgery on 15th May and was in ITU for the next 24hrs.He has encountered a few set backs,the first being a huge leak. He was told that he could have a pureed food diet on day 5(Sat) after surgery, and this went down a treat as he has always had a great appetite. On day 8 (tues) he had leaking out of his neck where the staples were. The following day martyn felt unwell and his breathing felt very tight, he started to cough and as he did, 3 days worth of food and drink burst out from the wounds in his neck.The doctor on duty called for a senior registrar to come and they put the NG Tube back in. This was a huge set back which also meant that Martyn was unable to use the speech valve that was inserted at the time of surgery.I was extremally unhappy as treatment for martyn seemed to have come to a halt,as the leak was so bad he had colostomy bags stuck to his neck!He was like this for 9 days and morale was at a all time low. He had serious wound break down and was very depressed. He was finally allowed home last monday after 3 weeks in hospital with the feeding tube still inserted. We went back to Gloucester yesterday and Martyn had a Barium swollow and he still has the leak, they are going to check again next week to see if it has healed. The last few weeks have been a real emotional rollercoater, I just hope things will improve, Martyn is very down at the moment,Does this happen some times ?

Hi Julie
There do seem to be problems sometimes with any 'insertions' My husband's problem was slightly different in that his tube leaked, it took about 5 weeks to settle it but for that time he had stomach contents and stomach acid leaking all over him, went through about 6 shirts a day in spite of huge absorbent pads! He was in hospital for 8 weeks after his laryngectomy, although a lot of that was because of problems before the surgery.The main thing is to try and keep his spirits up, I know it's very hard but hopefully they will be able to sort the leak soon.
Best wishes
Jennie Sankey

HI Juliee,

What happended to Martyn is news to me, but from Jennifer's post not unheard of.

The one thing that is not clear from your update is whether Martyn was given a Barium Meal x-ray prior to be given pureed foods. After my operation on day 5 I was given the x-ray but before I left the Ward I was informed that I would only be allowed food if the x-ray proved there was no leakage. Also I did not have the puncture for the valve fitting done for several months post operation. Again in my case the Barium was postive and I returned to the Ward with permission to eat soft food, but in the event I was able to eat normally from that point on with plnety of fluids to wash down, which is still the case 11 years on.

It looks like Martyn was very unfortunate but I am also confused as to why the material from his oesophagus was penetratuing into his wound area, the danger I would have thought was this material going striaght into his lungs.

The postive news is that although slow to heal this should be a problem that will eventually resolve itself with time, but perhaps you would wish to ask more questions about the nature of the problem and why it has manifested itself in the way it has.

No Martyn was not given the barium swollow, he was told on day 5 after surgery to try a soft diet. It wasnt until 3 days later he started leaking food through his neck. He was then put back on a Ng Tube. he has been back to have 2 swollows since, and this was our request as the consultant doesnt do this test routinly. The leak is getting smaller and hopefully on tuesday he may have the tube removed.I do feel annoyed that this test wasnt done first as this leak would have been pick up alot sooner. Martyn hasnt had any food or drink orally now for over 4 weeks and he cant use his speech valve while the NG tube is in place.

Hello Juliee,

I am surprised that Martyn was permitted to eat without this basic test. I live in Aberdeenshire and the hospital I attended was Aberdeen Royal Infirmary. I like Martyn enjoyed my food but expected a period of intravenous feeding post op but by day 5 was pestering my team to get some "real" food. They wold not hear of this until I had the test, and when explained it seemed so logical. I did not have the blom singer puncture of course which may have helped me recover sooner, but when I returned from my test I was so elated that I ordered a roast chicken dinner which I thoroughly enjoyed but the nurses were surprised and scolded me for not being more conservative.

I have learned to speak without the aid of the valve though I did have it for about a year (it being fitted about 6 months after my intial operation)it was not actually inproving my voice strength and over time the puncture site closed naturally so I was not putting the valve in properly. I also tried an external valve but my propensity to cough made that impractical to. I have quite good speech a bit gruff on the ear admitted but understandable and I do not need to cover my stoma for extra pressure for volume, although if I did this it probably would help, but it is such a nuisance and of course it draws attention to the stoma which some people feal queasy about.

I know that Martyn will eventually heal and this will just become a bad memory, but it is such a shame that for the lack of a simple test his recovery was set back by some weeks but more concerning he and you had to suffer the trauma of the consequences of the leaking wound.

Please do not be discouraged however, I am 11 years post operation and although I will never be the same as before I am still alive and I can converse reasonably well. Apart from the stoma and the sound of my voice I am really quite well (touch wood) and I have no reason to believe that Martyn will not have a similar experience.

God Bless, DWR

Martyn had his swollow today and there is now no leak visable, which is great news, after having no food or drink orally for 5 weeks. He has been told to take it slowly starting with sips of water for a few day and then slowly progressing on to soups, custard, etc. He said it is very sore to swollow.He still has his feeding tube in as he has to continue with the NG feeds for the time being. We also has good news as they think martyn may not need to have radio therapy after his surgery, apparently if the manage to get 1cm of tissue surrounding the tumour this is normal practice.

Wonderful news Juliee, it can only get better! DWR

It is great news, however he was told to take it steady with the oral feeding, he still has the Ng tube in, as he can top up with his feeding as and when,until he get a pattern established.He has started leaking fluids through his stome, not sure if this is normal, will have to check with the head and neck nurse.
I wanted to ask is it normal for inside the stoma to be crusty? At the top of martyns it seems like this. He wears a bib to help with keeping the air warm, he has a stoma plug in at the moment as the stoma area around the outside it still a little red.

Hi Juliee,

Not so good about leaking fluids through the stoma, this may be caused by the valve not being fitting properly. When I wore a valve between my stoma and oesphagus I sometimes (rarely) got leakage in which event I removed and refitted the valve or put in a new one as they are not very robust. It may be that the valave needs to be resized i.e. the width or thickness as the wound has healed over time to ensure it goes through to the oesophagus.

Regarding crustiness yes that is normal it is simply the mucus drying out at the stoma opening I get this most mornings more so when I have a chest infection which is now quite common. I clear my stoma regularly as I cough a lot, but of course during sleep this is not possible. If the stoma site is still tender, painful and red it may hurt and aggrevate the tenderness to clean the stoma but you should try to ensure this is done regularly, preferably by Martyn himself as he can sense the effects.

I use a square of foam called "laryngafoam" to cover my stoma, I don't like the bibs, but need to use the bibs when doing strenuous work as the foams are self adhesive but sweat breaks down the adhesive quality and the foam keeps coming off when I am particualtrly active, like DIY, gardening or dancing.

Keep Martyn perservering it will get better as he gets accustomed to his new circumstances. Has he attempted to change his valve yet or is that done by the Head & Neck nurse? With indepedence comes confidence and with confidence you worry less, this was my experience, just now it is all new and frightening, coping with a completely new set of personal hygiene and self treatment needs but Martyn will get accustomed to it, as I say independence of the nurses brings its own confidence and rewards. Please give Martyn my best regards, I can appreciate what he is going through, not least you Juliee.
Take care, Alan

Martyn went to see the speech therapist yesterday as he had fluid leaking through his stoma, she thought it could be the speech valve, being stuck open, it turns out it wasnt open, he has in fact got another leak,so back on the NG feeds again. He has been asked to go on thursday, back to Gloucester for the ENT consultant to have a look to see what is going on.He will be seeing a different one as his usual consultant is on a 4 week break.I did how ever shed a tear of happiness yesterday as for the first time since his op (6 weeks) he used his voice. He covered his stoma and said HELLO. It was very overwelming for me as I had forgotten what his old voice was like, he was so pleased. We both realise his old voice has gone, but he has a new one now.The speech therapist did say however that he shouldnt use it as it would maybe put pressure on his leak.

Hello Juliee,

Great news about Martyn's voice shame about his continuing problems with leakage, the medicos must get to the bottom of this problem ASAP.

You will find that although gruff and strange Martyn's voice will become better with use and training, and he will still have the same accent/dialect as before just perhaps more difficult to recognise until your ear becomes attuned, but yes what a breakthrough!

Most of us take communication for granted and it is only when we are robbed of a sense that we truly begin to appreciate it's full worth.

There is only one way Juliee that is onwards and upwards I am so pleased for Martyn, may they resolve his leakage problem without any more undue delay.

Alan

We went to Gloucester yesterday,and he does in fact have another fistula.It has just about healed, after the consultant gave him a cup of water and asked him to swollow and could see where it may have come from as the area looks slightly red.He has been advised to start drinking in 2 days time, just enough to make sure it has healed, are these leaks a common problem with this op.

Hi Juliee,

I was not aware of fistulas until I came on this site, fortunately I was spared that experience.

Keep us posted, you shall both be in my prayers at Church today.

Alan

Thank you so much, He had drinks through the say yesterday and no leaks, which was great news.He will carry on today with just fluids and tomorrow he will start on a soft diet.

Hello all, Just to let you know that martyn is doing well, he is now on a soft diet and is coping well, no more leaks which has been such a relif.He has a follow up appointment on wednesday when we will find out if he needs to have radiotherapy. We have been told that they need to have taken 1cm of healthy tissue around the tumor they removed for him not to need it. Best wishes to everyone xx