Frustration

I am doing the rounds of doctors with my son. I feel like I have walked into the middle of an old boys’ club, a secret society.

My son has had an echocardiogram done, but no one will tell us the results. I have asked, but not been given a straight answer. The surgeon who agreed to see our son has told us that, no, he cannot perform the surgery. However, he “has two pectus excavatum cases now and if [he] can just find a third [he] can get his mate to come up from Brisbane to do it here while [he] assists.” Is he advertising for one more? Do we wait for six months until a third case shows up? Do we scout around ourselves and hope to find a third? 

Do we consult with the other doctor  first – before he arrives here to operate on our son? No, it’s OK. He’ll ring his mate later and talk to him about it. He’ll just let us know later what is happening.

We are told that our son’s heart has been displaced by his ribs – it has been pushed too far to the left. We are told that he has a heart murmur that he has NEVER had this identified before. We are told that he has a significantly reduced lung capacity because of the shape of his ribs. THEN we are told that the procedure we are seeking is purely cosmetic.

I asked, “When does it move from cosmetic to medical?”, and I reviewed all of the above information. The surgeon told me that no causal link could be proven. What does that mean???? An enormous hole in your chest might be a contributing factor, but we can’t prove it. How about we pop a hole into his chest and see if he has any ill effects.

Today I rang the college of thoracic surgeons myself. I spoke to a lovely lady, who didn’t mind at all when I got teary. She told me to go back to my GP and seek a second opinion. She gave me her phone number and wants the GP to ring her.

I love that lady.

25 Comments

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25 responses to “Frustration

  1. Holy crap. I can’t believe you are having to go through this. Who am I kidding? Yes I can believe it! Good that you are strong and persistent. Stay with it and call everyone that you can!

  2. Ahh Tracey, I am so sorry that this difficult situation is being made harder by a bunch of pricks with no bedside manner.

    What is it that he needs his “mate” to assist? And they complain that women go to bathrooms in twos!

    I am glad you found a sympathetic ear in that lady. I hope she is someone who can continue to steer you in the right direction when it comes to dealing with these…these…MEN!!

  3. I really really hate having to investigate things which I know nothing about; you feel at such a disadvantage when you start asking questions. Luckily the older I get the less I mind making an ass of myself in order to get the right information. But as I say, I really hate it. You have my full sympathy.

    Your persistence in the face of these unhelpful practitioners is admirable. You are thinking well and asking the right questions, so well done you.

    I would have cried on the nice lady too!

  4. Thank goodness you found a sympathetic ear with that lady. And good on you for being persistent and phoning them in the first place. When it comes to matters medical I think you just have to keep asking, asking, asking questions and demanding answers. Your experience sounds very frustrating.

  5. Persistence is the key. I feel so sorry for your family having to go through this plus having to deal with vagueness. What a frustrating experience it must be…

  6. I don’t blame you one bit for feeling frustrated. You’re being dealt a load of crap: no straight answer on the echocardiogram, being told your son’s condition is purely cosmetic, surgeons trying to run a three for one special.

    Yes, a second opinion is in order, as are more opinions if people don’t start dealing with you straight. Good for you for not taking “no” or “dunno” for an answer.

  7. twolimeleaves

    I love that lady,too. And I’m sorry you’re having such a crappy time. Can I help?

  8. That doesn’t sound right to me… cosmetic? Press on. Make a pest of thyself. I once cold-called a brain surgeon that I found through a reputable (Mt. Sinai) hospital website. He spoke to me on the phone for a half an hour… and then I went to see him. Doctors by and large want to help. Keep us posted.

  9. WHAT A STINKER!! Get 2nd, 3rd, and 4th opinions if you need to. Is travelling south an option? Thank goodness for the nice lady on the phone!

    I wonder what the legal rights are to medical records in this country? I mean – you pay for them – why shouldn’t YOU get to see them??

    Best wishes as you and yours move forward in this…

  10. It is the squeaky door that gets oiled and the parent that asks questions and expects answers that gets results. Good luck.

  11. noisenoisenoise

    Cinnamon Fingerpainting,

    As my mother says in Cairns. “If you have a pain get on a plane.” Make an appointment with a Brisbane surgeon, get on a plane. It’s a day trip, I’ll pick you up from the airport.

    Dave

  12. I couldn’t agree more with Saucy and Dave etc – keep being the brave and great mum you are and ask all the questions you need to, and then some…seek opinions far and wide (has Paul got back to you?) and then ask someone else. Cosmetic or not (which come on…how can all that be about vanity? My heart hurt reading about his ribs taking up more than their fair share of space)…you don’t want anyone performing that type of major surgery on your child unless you have full confidence. Soldier on and advocate on Pip’s behalf. And keep on being creative and go to the top of the food chain if you have to.

  13. What Jennifer said! Nothing is so frustrating as facing a concern, especially a medical one, and feeling like no one is listening or answering your questions. Keep on fighting for Pip though. The doctors aren’t going to do it, so you have to!

  14. Some doctors seem to forget their patients are human beings, not slabs of meat! I wonder how they’d like getting such a runaround if it were their child? Good for you for seeking out answers in the face of such callous indifference! And three cheers for the nice lady!

  15. It’s strange isn’t it, how it only takes one kindly person to make all the difference.
    Best wishes

  16. I think there are so many Doctors out there that should be allowed to perform surgery and NOT be allowed to talk to their patients or their family!!! People like that lovely lady you spoke to should be employed to interpret the medical jargon from the Doctors and relay it to the family in a sympathetic, honest and caring way.

    Thinking of you all.

  17. I can’t add to what everyone else said, but thinking of you and hope you get some answers soon.

  18. Keep trying…don’t give in to the idiots. Good Luck!

  19. Tracey, I can only imagine what you are going through. I hope that lovely lady steers you in the right direction.
    Dont feel bad about crying either- you are allowed to cry!

  20. riseoutofme

    Tracey .. everything has been said already … So can I just say “Stick to your guns” … and don’t let them fob you off with ANYTHING … he’s your boy … fight like a tiger for him.

  21. You’ve got me all teary now too!! Bloody hell, the stuff you have been through and not getting a straight answer!!! Urgh. I’m glad you have this blog to splutter out all you’re feeling.

    I so love Dave’s comment of ‘if in pain, get on a plane!’. Sums up the QLD hospital state doesn’t it?

    I remember when I was about 38 weeks pregnant and I was told by my OB to book into a particular hospital, rather than the one I was booked in. When I rang the lady at the end of the phone was really horrible and said that it wasn’t possible etc., I rang my OB office and the lady there was so lovely when I was busy bawling at the other end of the phone…

    It is so lovely to have a sympathetic ear on the end of phone lines. I wish you all the luck Tracey. Keep that spirit fighting tough!!

  22. bec

    Oh crap.

    If you have to come to Sydney for specialists, you know you have a bed (or two) with me, right?

  23. h&b

    Gawd !!!

    Thank goodness for the nice lady. Everything else is as messy and confusing as !!

  24. Sending strength vibes to you – sounds like you could do with a few. Hopefully the second opinion will help.

    And cosmetic? How does this causing a heart murmur and reducing lung capacity make it cosmetic?

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