Should I wait for operation
Posted , 3 users are following.
I'm a 48 year old male and have just been diagnosed with type 2 Achalasia, a condition I've deffinately had for 12 years but may have had longer. I've been fortunate that I don't suffer like a lot of people on this site which may be just a matter of time. It doesn't stop me having a normal life and doesn't affect my weight. I've read a lot of posts and it seems know two sufferers suffer the exact same symptoms.
With me probably 1 mouth full in every meal doesn't go down normally. I know this immediately but unlike a lot of people I can't wash it down with water or anything else. I have to do nothing but wait. If I was to eat or drink on top of this bad swallow I would get pain and an eye watering panic.,
I regurgitate food and liquids but just some, not all of what I've eaton which seems worse while at work (manuel work).
Occasionally I will wake up, sit bolt upright in bed with water coming out of my nose (something my wife and I refer to as one of my Drowning episodes). The first time this happened I thought I had a nose bleed and went rushing off to the bathroom to discover no blood just a watery liquid.
I've also lost approximately 70% of my sense of smell.
My specialist thinks I should have the Hellers operation which I'm willing to do but can't help worrying that it may only last a few months and I could end up with more damage than I have now. It could also bring on reflux which I don't have at the moment.
My next step is to meet my surgeon but I would really like to know what other sufferers think I should do. My gut feeling is to carry on living with this condition as long as I can with annual endoscopies and then go for the operation when my symptoms get worse or am I being naive.
0 likes, 8 replies
jacarr1
Posted
You may want consider a dilition before you have a hellers if you hav'nt already had one. this from someone who has been same situation for some time and is saving the operation till the very last
cheers jim!
PhilBS
Posted
thanks for replying and sorry for not getting back to you sooner. I sometimes stop reading these discussions as they can make me anxious and my symptoms get worse. I hav'nt had a dilation, have you? how was it? and has it been a success?
Thanks again for the reply
PhilBS
jacarr1
Posted
Just to fill you in on my condition I had an upper endoscopy late january which I have every 12 months or so,the only difference was this time I had a dilition using fluroscopy I've had a number of dilitations over the years but this one seems to have an excellent result,considering prior to I could only swollow liquid foods.
If your hospital or consultant doctor offers fluroscopy with dilitaion I think it may be worth a try, I'am going back in next month for another stretch and my doctor seems to think that sould be enough I'll wait and see so far it's been really positive
cheers jim!
Marie111
Posted
Don't know if you have had treatment yet? I am 37 and my achalasia started like yours with having one mouthful in every meal being a struggle. It does deteriorate over time and this year I have gone to regurgitating everything I eat and drink. Usually sick over three times with every meal. Doing nothing is not really an option as I believe it does also damage you oesophagus which stretches as the pressure is put on it. I have seen a surgeon who said that surgery is the most effective option in someone my age as dilatations are fairly inaffective in people under 40, neeeding repeating several times. The problem with them is that once you down that route, the Hellers Myotomy is more difficult as they have to operate through scar tissue so the success rate can be less. I found it helpful to talk to a surgeon who is experienced in the HM. Not all doctors/surgeons are experienced with achalasia so it is worth getting a second opinion!
I think whatever you do it will be much better than what you have now but you probably are best to do something rather than nothing. After all, you deserves a quality of life! Both procedures are performed under general so there is nothing to worry about.
PhilBS
Posted
Thanks for your reply. I still haven't made a decision on an operation but know I need to do so soon. Good luck with your op and let me know how it goes. Phil
Marie111
Posted
The op itself is fine, not painful, tiny keyholes - mine are so small they haven't got stitches. Just an uncomfortable bloated feeling which is normal and will pass soon. Food is going straight down and not the slightest sensation of it being trapped. It is great!
The problem with Achalasia discussion sites like this is that the people who use them are the minority for whom things aren't right and people like yourself and I who are pre-procedure and trying to work out what to do. It is a seriously distorted representation!
My own research (with the help of a doctor friend) ensured I didn't just go to my local GI dept...I went to the best in the south of England. It is crucial that you are having advice from someone who is very experienced in HM surgery and hasn't just done it a handful of times. At my local hosp I was told to go for a dilitation which is the cheap option so beware! My surgeon did stress that HM can be performed after dilitation but it can be less successful. Age and other factors are also important with which method is best because dilitation is best for some groups. I think by reading people's stories it certainly looks like it is the group who have had the dilitations first seem to be the ones saying it is not working. The people who have the Hellers first seem to be better. Obviously this is my own thinking as to how I went about making my decision which may not be right for you.
Do get something done. Achalasia should really only be a mild inconvenience.
Best of luck.
PhilBS
Posted
How you doing? Are you fully recovered now? I thought I had sent you a couple of messages but I think dopey here has been sending messages to him self.
I've been to see a surgeon who thinks I should have surgery and told me to get in touch through his secutary when I was ready. I've done this several times but still not heard anything. I'm interested to know who the best in the south of England is just in case I need a second opinion . Did you also have some sort of fundoplication with your surgery, if so which one?
All the best. Phil
Marie111
Posted
Doing really well since op, best thing I ever did. I do have to drink water with meals and very ocassionally will bring food back up (if stressed!) but really no more than very mildly irritating at its worst. I can hardly see the keyhole scars (5 of them) and I have forgotten all about Achalasia to be honest.
My surgeon was Shaw Somers who practices from Portsmouth. He has a website and was highly recommended. He trains other doctors and is a leading oesophagus expert. He is also a really nice guy, very real and not full of all the jargon. A real sense of humour. He is actually a consultant on Channel 4 'The Food Hospital'.
He is not a 'money grabbing' doctor and seems to really care about his job. His consultation fees are £95 which is very reasonable given his expertise. I am sure if you email him he will recommend someone close to you. I think he said to me that there are only a handful of places he would recommend doing the op.
I did have a fundoplication with my op. For the first couple of months I had quite severe acid reflux and was on Omeprazole and Domperidone plus loads of Gaviscon! The past two months I haven't taken a thing and rarely have anything than mild indigestion.
Mr Somers said there is a small chance the Achalasia could return slightly and he will just do a very small balloon dilitation then but was insistant he didn't want any old gatroenterologist doing it.
Best of luck...you won't look back once you have it done..normality is possible!
Maree