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Scimitar Syndrome anyone?

Posted , 6 users are following.

dragon1004
dragon1004

Apparently it's very rare so I'm probably alone in this, but it would be nice to find a fellow sufferer to compare notes!

Roughly 10 years ago I had a chest infection that just wouldn't clear and was sent for a chest x-Ray for the first time in my life. I'd been treated for asthma for some years, but the chest x-Ray revealed a very rare congenital condition. After regular consultations and repeat x-Rays over the years, I have now been discharged, something I'm not entirely happy about.

I have a hypoplastic right lung with pulmonary atresia and chronic bronchiectasis. My heart is also displaced. I've had an MRI of my heart as normal heart function tests did not allow a full view of its function. It's fine apparently.

So my main symptom is bronchiectasis. As I've had it all my life I'm not really sure what is normal! I regularly have to clear my throat/chest, am prone to chest infections and have a constant pain around my lower right rib, presumably as the lung in that area is cystic.

Does anyone else find that symptoms are worse this time of year, hay fever I suppose? It's really difficult for my GP to diagnose an infection as my lung constantly sounds crackly, so I'm told. I do worry that something more sinister might develop in the cystic region of my lung, especially now that I don't have regular x-Rays.

Does this sound familiar to anyone else? Any words of advice please?

0 likes, 9 replies

9 Replies

  • lesley05714
    lesley05714 dragon1004

    Posted

    Hi there,

    To identify the bugs, you need to get a sputem test through your doctor, they send it to the hospital dept' and let the doctor know what antibiotics to prescribe. If you don't have a sputem test, they are just guessing. My last test identified two 'lodgers' in my lungs and they have been dealt with; I recommend asking your doctor or specialist about this urgently.

    A good site to go to for extra help is called bronchiectasis r us. A forum full of people like us from all over the world. I have learnt a lot from them.

    Blessings

    • dragon1004
      dragon1004 lesley05714

      Posted

      Thanks Lesley, will take a look at that forum too. Have a docs appt on Monday about something else so will discuss my concerns re my lung. I have standby Amoxycillin 500s anyway and took a course 4 weeks ago but not sure they've dealt with it. Just not sure if it's my lung or just the pollen at this time of year!
  • paul54228
    paul54228 dragon1004

    Posted

    Hello im paul i have bronchiectasis so i know were you are coming from ,I have had it all my life and like you yes this time of year things arent good also in the winter its hell on earth with one infection after another and the way it makes you feel all the time ,Do you suffer from depression because of bronchiectasis because i do and some doctors think the depresion come first but as i say time and time again if i never had bronchiectasis i woudnt have depresion ,Also are you on a drug rotation that helps with the infections i take 3 diferent a  antibiotics on a month rotation .
    • dragon1004
      dragon1004 paul54228

      Posted

      Hi Paul, looking at other posts I think I may well be lucky in that my condition doesn't take over my life...my many other medical problems do that!! My consultant simply advised that I have a course of antibiotics (usually Amoxycillin) "every now and again". I also take symbicort daily and ventolin as and when.

      I do suffer from depression but not sure that's linked to my bronchiectasis...again too many candidates for the cause ;0) Apart from a constant sore and achy feeling around my right lung I don't tend to suffer too much apart from when a cold hits, which invariably causes an infection. 

      I'm not sure even my latest consultant or his many juniors that I saw had encountered my exact condition before. Bronchiectasis is just a part of it. But they say it's controlled enough such that I don't need regular consultations now, worries me a little that I'm not getting that annual chest x-Ray now tbh. My bottom right lung is totally cystic and doesn't function, in my mind that means there's a risk of tumours developing, but what do I know!!

      Think it's time for another chat with GP about my on going care.

  • Patient99
    Patient99 dragon1004

    Posted

    Your GP is not the one to diagnose, GP meaning General Practitioner!

    You might be best advised to go to a specialist in your condition(s) privately - OK, it will cost you something, but after the initial consultation he/she can refer you back to the NHS with specific advice/treatment, which he/she may be able to carry out him/herself

    That's what I would do in the circumstances, but obviously each to their own..................Hope that helps (HTH)

    • lesley05714
      lesley05714 Patient99

      Posted

      Hi there,

      The GP is fine if he sends the sputum sample to the hospital for analysis, you can't just guess or trust to luck with antibiotics...take the wrong one and it will ber useless; there are special antibiotics for each 'bug'.

      You should also be under a specialist anyway for bronchiectasis, with CT scans, referred by the doctor

      Trust you get it sorted,

      Every Blessing,

      Lesley

    • dragon1004
      dragon1004 Patient99

      Posted

      Hi, and thanks. My reply to Paul above explains my previous dealings with specialists, but I'm no longer on their list. I think I need to clarify exactly what my GP knows about it, previous surgery didn't send full notes on apparently. Might ask to be referred to the consultant again to set my mind at rest.
  • silviadd
    silviadd dragon1004

    Posted

    Hi There,

    There is a group in fcebook called Scimitar Syndrome. Plenty of people there to talk to. I am a mum of 1y7m old boy with SS.  I have all the symptoms you describe but I have never been checked for SS (that's because I grew up in stonehenge country). Anyway, visit the group. You could find it very helpful. I did.

  • naomijean
    naomijean dragon1004

    Posted

    Hey i see the thread is a little old now however i was diagnosed with scimitar syndrome at the age of 7, im 26 now and considering asking for surgery as it has started to feel worse. they have ept me under observation since they diagnosed me and hundreeds of different tests and scans etc but never any treatment. i dont know what your experience is with it but it would be interesting to hear as i have never spoken with anyone with it before 
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