Cardiomyotomy post-operative advice

[Steve-C]

Hello again. I've not got anywhere yet with the two local surgeons (see below), I'm still looking.

But looking ahead, I wonder what general advice people who have had myotomy have for the post-operative period. I live alone, have no relatives and just one local friend (sad I know) who has an extended family of his own. I had thought of booking a week in a nursing home but given Covid19 am none too keen on that now. I wonder if people can offer advice for the situation 1) if I get local treatment, or 2) most likely in London.

Many thanks,

Steve.

[neil-acac Administrator]

Hi Steve,

If you contact the charity direct, I am sure you will get some assistance re treatment [e-mail]

In times like this, friends like yours are holding the world together, I am so happy to hear you have that lifeline. Whilst addressing treatment in this critical time for you, it is really important to keep your calorie intake up. I personally recommend a breakfast of double cream (if you are good with dairy) and honey as this holds close to 1000cal for a very small bowl. Re nutrition, you can ask your GP to prescribe Ensure 2.4 drinks. These are actually very tasty, and full of Cals and Vitamins etc...Please do have a good look around the ACAC website if you haven't already achalasia-action.org

Neil

[Steve-C in reply to neil-acac]

Thanks Neil. I really am getting desperate now, had a bad night with the los hurting and liquids from earlier in the day gurgling away. I’m not sure double cream alone will get through easily, it needs something with it to provide body. A sprinkling of corn flakes?

The gastro had prescribed Fresubin which I’ve loads of and I’m not sure the GP will change to Ensure without instructions from her.

Even liquids are now just dribbling through the los.

I’ve been looking for a private Achalasia specialist actually operating but hitting a brick wall. I will contact the charity direct again.

I am feeling abandoned by the system now.

Best wishes

Steve.

[neil-acac Administrator]

Hi Steve,

Regarding post HM recovery, I had the HM with Wrap in November at UCLH. The Op is laparoscopic so involves 5 incisions into the stomach. The only discomfort I had was basically waiting a week or two for the stomach muscle entry points to heal. I was moving around straight away, but was pretty limited. I didn't find it that painful, it kind of felt like a bad sport injury, that just needed to heal. Certainly no lifting or strenuous activity for a month or two. Your Consultant will advise re eating, but most likely a liquid diet for a week or two, slowly moving onto soft foods. Re real solids, It's a case of trying a small amount at a time, post soft foods...I was working from hope - laptop based - after about 10 days....I wouldn't plan too much though, and its best top treat the recovery period as real rest that you need and deserve....

Warmest,

Neil

[Cairn1]

Hi Steve

I had a cardiomyotomy laparoscopically about 10 years ago. Besides occasional spasm pains I have a normal diet. So pleased to have been sorted!

I had it done privately by Mr Marcus Reddy At St Anthony’s hospital in North Cheam. London .

He is based at St George’s Tooting.

I used to find warmed drinks helped relax the sphincter to get things down . Just a thought if you haven’t tried.

Trust you will get sorted soon.

Sue

[Steve-C]

Many thanks for the info and advice Sue.

Steve.

[theswallow]

Hi Steve, did you find a surgeon? I have recently had my surgery (just over a month ago) after a failed balloon dilatation and the improvement is as dramatic as everyone else has described. The surgeon I went to said he is willing to see new patients, although I don't know if you would want/be able to travel to Essex. Do let me know if you would like further details.

Reshma

[Steve-C in reply to theswallow]

Hi Reshma,

It's complicated, but should be having surgery at the local teaching hospital soon. Still trying to sort out aftercare as I live alone. Shame they closed the NHS convalescent hospitals years ago. Many thanks for the suggestion. I'm very glad you've been helped, that's great.

Best wishes,

Steve.

[theswallow in reply to Steve-C]

Good luck, I hope you get your op date soon. I would echo Sue and Neil’s comments on the whole about post op recovery. The surgical ports hurt like a sports injury and it’s quite important not to do anything strenuous. About 3-4 days on, I was able to carry out most routine activities including cooking and other light housework. I’d only add that having been on liquids for so long and being quite wary about the spasms (which I still do have, now reduced to about once a week), I was often tempted to go back to a liquid diet every time the spasms came on. Fortunately my surgeon has been very good with the follow up and strongly advised not to go back to liquids. He said it was important to keep the oesophagus moving and supple with whatever solid foods possible, to avoid scar forming too quickly.

I still do have my fresubin about once a day most days to top up and I have a few liquid supplements (magnesium, vitamin e and vitamin b).

I hope that helps and wish you the best of luck getting back to eating.

Reshma