• Treatment in the USA… Only option?

    Surgeon number 1 in the States wants me to go over for further testing and possible SSCD surgery (depending on test results). Even though I’ve already had a million tests over here, they are not as ‘sophisticated’ as those in the States. Please read below for more on this!
    Ever since being diagnosed I discovered that very little research exists for SSCD. The studies that are out there mainly focused on small groups of people. I have also learnt that there is just not enough knowledge of the condition over here, particularly for those whose diagnosis is not ‘clear cut’.
    In the U.S. there are a number of surgeons who specialise in SSCD and I am fortunate enough to be in contact with a couple of them. Their surgical approach is more advanced than what it is over in the UK.
    As Tom mentioned the surgery I had in Cambridge was done ‘blindly’ so to speak, so the surgeon couldn’t actually visualise the dehiscence to repair it … The repair can also slip or just get re absorbed. Which is not ideal really! This means more surgery.
    Diagnostic tests are arguably more reliable and thorough in the States. My most recent scan in London is supposedly ‘not good enough quality or precise enough’ (according to one of the top SSCD surgeons in the U.S.). This is quite shocking really! Makes you wonder if the condition is under diagnosed over here. It’s like if you don’t fit all the specific SSCD boxes then you can’t possibly have it. This has made my journey over here so much more of a challenge. It also highlights why raising awareness of this condition is so important – so please spread the word !
    The surgery technique also differs in the States. Surgeons are more experienced in carrying out an operation where the dehiscence is visualised either by eye or by endoscopic cameras (fancy or what..) to ensure the hole is repaired. The surgery usually involves going through the skull so is classed as brain surgery and comes with additional risks. However, more and more surgeons in the states have perfected there technique to make this surgery as minimally invasive as possible. One particular surgeon I am in contact with carries out a very successful ‘combined approach’, combining the mastoid approach (through the back of the ear) and ‘mini’ craniotomy (through the skull), and therefore reducing potential risks.
    The video below comes from UCLA (Los Angeles!) and looks at the surgical approach carried out by the Neuro surgeon, Dr Yang, and ENT surgeon, Dr Gopen. It’s cool stuff! Surgical techniques used by SSCD specialists in the States differ between doctors, but are equally successful.
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