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Hello, my name is Stacy Brown and i have presented with ...

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Guest
Guest

Hello, my name is Stacy Brown and i have presented with symptoms of this condition since i was 7 years old. For years i saw an asthma specialist, being perscribed stronger and stronger asthma medication, including medication not even licenced for children. Then at the age of 18, i was finally diagnosed, after haveing lung function tests, x-rays, barium meals, CT scans, endoscopies, and ph manometry tests as haveing the condition achalasia.

i was informed that the condition had progressed so much that a laproscopic hellers procedure was my only option for treatment. i finally had the operation in 1999. i wont lie, it was a horrible, horrible operation and i'd already had 9 others on different parts of my body by that point, so i was pretty used to them, but this one was something else!! but, saying that it was worth haveing it done, it was an amazing experience after the op, asking for seconds at dinner when i was finally allowed to eat food again!!!!

Things went well for a while, then the year before last, the symptoms started to return again. so it was back to the hospital for another round of tests!! the results showed that the achalasia was back again. i didnt even know that this was a condition that could re-occur, i was always told that after i had the op that that would be it, i would be ok from then on. no-one told me that this could happen, so it was abit upsetting. the consultant told me to get back in touch when the symptoms got too much for me to handle.

well now the symptoms have been getting worse again and the nifepedine they gave me last time isnt helping any more. so i went back to my consultant. its only a few days ago now that i saw him, what he told me had just been unbelievably bad, i had no idea how bad this condition could get.

basically they cant operate on the same bit of food pipe, they have to go a little higher than the last operation site. obviously as your food pipe isnt that long, they can only perform the op 2 or 3 times in a lifetime with each operation being less effective than the last; and as this is a condition that old people usually get and they have a habit of dieing before the achalasia returns, my surgeon is largly going by text book rather than experience which greatly worries me. another thing that worries me even more is the fact that i am only 25 years old now, i have to face the prospect of being ill for as long as i can cope, without any mediciation at all, just to have a massive operation which isnt going to be that successful and only to face the whole experience again in another few years. i could live for another 70 years, how am i going to cope?

[i:d241df2688]This message was automatically imported from the original Patient Experience[/i:d241df2688]

1 like, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    Hi Stacy,

    I have sent you a reply, but it is not here dont understand.

    I hope we can mail each other.

    my mail is ****.

    Regards,

    Patrick.

    [i:16978af9e3]This message was automatically imported from the original Patient Experience[/i:16978af9e3]

    (Sorry but Patient Admin have removed either a telephone number, an email address, and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

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  • Guest
    Guest

    Posted

    Hi my name is Patrick, I live in the UK and would like to hear from other people who have the condition Achalasia,I was diagnosed at the age of 30y I am now 41yr. It is frustrating that I have never been able to locate a person in the UK with this condition, and further more there was no web site for this really to take place, until NOW!! I have spoken to others in the U.S and gained a little from them, but I hope that others will join and explain how they manage their condition, plus if they have had surgery. I hope that this will be the start of sharing information and the start of discussions and to gain support. I have always had a problem with swallowing from the age of twelve. I remember one Christmas as I had an attack of the munchies and looked at the turkey, started to eat it and was in trouble immediately, I had to go to the toilet and regurgitate, this was the beginning for me as I remember. As a young boy I would always have plenty of liquid at the table, my choice was milk never water, and I would always eat my food fast, and drink the milk quickly. After being diagnosed it was like a jig saw puzzle being completed, and now I understand my problem and manage it effectively. I have bad days like everyone, but we all know the bad days are simply from hell, and i have seen my doctor and used nifedipine to relax the spasm, which is a muscle relaxant as we know. This has helped in a small way, but it tends to be a waiting game for ease to come so that I can drink and eat again. I get my GP to agree for an endoscopy each year for my peace of mind, so that I am healthy, I have had chest infections from aspirating in bed, I am concerned about my lungs and the health of my oesophageal track (barrets disease) at this moment in time my general health is good and i am in control, I plan to stay this way too, please send your information as i am keen to know as much as I can, and share what I know.

    I look forward to speaking to you all.

    Take care and speak soon.

    [i:b7dadeae1b]This message was automatically imported from the original Patient Experience[/i:b7dadeae1b]

  • Dean68
    Dean68

    Posted

    Hello Patrick, my name is Dean and I have recently been diagnosed with achalasia. I noticed your post is from a couple of years ago but wondered how you have got on since. It would be great to hear from you.
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