Start with the diagnosis, not the symptoms
A dystonia enquiry is different from a general neurology first visit. The specialist is not starting from unexplained symptoms; they are asking what type of dystonia has been diagnosed, when, by whom, and on what basis. Write the diagnosis exactly as it appears in your records, including any terms such as focal, segmental, generalised, cervical, blepharospasm, oromandibular, laryngeal, task-specific or inherited. If the diagnosis is still uncertain, say so clearly rather than presenting a working label as confirmed.
Include the date of diagnosis and the clinician or centre that made it. If genetic testing, imaging or electrophysiology contributed, list the test, the date and the reported conclusion. Do not summarise a report as 'normal' or 'abnormal' without the actual wording; the receiving team needs the original conclusion to judge whether the diagnosis is secure.
This matters because treatment history only makes sense against a confirmed diagnosis. A therapy that failed for one dystonia subtype may be irrelevant to another, and a specialist cannot judge whether previous care was adequate without knowing what was being treated.
Build a dated therapy table, not a narrative
The most useful document you can prepare is a simple table with one row per therapy. Columns should cover: therapy name, start date, end date, dose or settings if applicable, who prescribed or performed it, the result, and why it stopped. Keep each cell short. A specialist can read a table in minutes; a long narrative often hides the sequence and the reason a treatment ended.
For oral medicines, record the generic name, the dose, how long it was taken and what changed. For botulinum toxin injections, record the product if known, the muscles injected, the dose, the interval between sessions, and the response over time. For surgery, record the procedure, the date, the centre and the stated outcome. For physical, occupational or speech therapy, record the goal, the frequency and whether function changed.
Do not merge several therapies into one line such as 'tried medications without benefit'. That sentence tells the specialist almost nothing. Separate rows show which drug, at what dose, for how long, and with what effect. If you do not know a detail, write 'not recorded' rather than guessing.
Describe results in functional terms
Specialists need to know what changed in daily life, not only what a rating scale showed. For each therapy, write two or three sentences covering: what improved, what did not, what worsened, and how long any change lasted. Use concrete examples such as 'could eat without choking', 'could drive again', 'neck posture improved for about six weeks', or 'no change in handwriting'. Avoid vague words like 'better' or 'worse' on their own.
If a formal scale was used, include the name, the score before and after, and the date. If no scale was used, say so. Do not convert a clinician's impression into a number. The receiving team can interpret a clear description; they cannot interpret an invented score.
Also record side effects and reasons for stopping. A therapy stopped because of intolerable side effects is a different history from one stopped because it did not work. Both matter, but they point to different questions.
Explain what you want the China review to decide
A therapy history is only useful if it is attached to a clear question. Before you send records, write one or two sentences stating what you want the specialist to assess. Examples include: whether the diagnosis is correct, whether any previous therapy was underdosed or too brief, whether a treatment not yet tried is worth considering, or whether a device-based option such as deep brain stimulation should be evaluated.
Deep brain stimulation uses implanted electrodes and a pulse generator. In Parkinson's disease it may help selected symptoms but does not cure the disease. Whether it is relevant to a particular dystonia case is a clinical judgement that depends on the dystonia type, the previous therapy history and the individual assessment. Do not present it as a recommended next step; present it as one option you want the specialist to consider or rule out.
This section is where you avoid rewriting a first-visit guide. You are not asking 'what is dystonia'. You are asking a specific question that the previous therapy record is meant to answer.
Prepare the records the specialist will actually read
Send a short summary first, then the supporting documents. The summary should be one page: diagnosis, date, treating centre, therapy table, current symptoms, current medicines and your specific question. The supporting documents should include clinic letters, discharge summaries, injection records, operative notes, imaging reports and genetic reports where relevant.
Label every document with its date and source. If a document is in another language, ask whether a translation is needed and who should provide it. Do not send a complete archive in the first message; the initial enquiry only needs a brief summary. After first contact, the team can explain how to share records securely.
If some records are missing, say which ones and ask whether they are needed. Do not delay local care while gathering documents. If symptoms are worsening or urgent, seek local medical assessment first.
Keep the summary and the supporting file separate. The summary is what a clinician reads first; the file is what they consult when a detail matters. If you merge the two, the therapy table gets buried under scan reports and the specialist has to reconstruct the sequence themselves.
Give each supporting document a short filename that states its type and date, for example '2023-04 neurology clinic letter' or '2022-11 botulinum injection record'. A folder of files named 'IMG_0421' and 'scan' forces the receiving team to open everything before they can judge relevance. Clear filenames let them go straight to the records that answer your question.
If the therapy table and the supporting documents disagree, note the discrepancy rather than silently correcting one. For example, if a clinic letter records a higher dose than your table, write 'table shows 100 units; letter of 12 March shows 150 units - please advise which to use'. Flagging the mismatch is more useful than presenting a tidy version that hides the uncertainty.
Ask the team which records they want next rather than sending everything at once. A movement-disorder specialist may want the original injection records and the most recent clinic letter first, and may not need older imaging until a specific question arises. Sending only what is requested keeps the review focused and avoids the specialist spending time on documents that do not change the assessment.
If you are unsure whether a document is relevant, include it in the supporting file but do not feature it in the one-page summary. The summary should carry only the items that bear directly on your question. Everything else can wait until the team asks for it.
What the China team can and cannot confirm from records
A records-based review can clarify whether the diagnosis is well supported, whether previous therapies were adequately documented, and what questions remain. It cannot confirm final eligibility for any procedure, guarantee hospital acceptance, or replace an in-person assessment. The treating hospital decides suitability after examining the patient and reviewing the records.
That limit shapes how you write the enquiry. State what you already know, state what you want assessed, and mark clearly which items are unconfirmed. A specialist reading a well-ordered history can tell you which gaps matter and which do not. A history that presents every previous therapy as a failure, or every diagnosis as settled, gives them less to work with, not more.
Ask the provider what its written plan includes: which consultations, which tests, which therapy options and which follow-up arrangements. Ask what is still undecided and what would change the plan. Do not assume that a remote opinion establishes access to a specific treatment or device.
For deep brain stimulation specifically, ask whether the hospital offers assessment, implantation and programming, and what the patient would need to bring. Do not assume remote programming or device compatibility. These are questions for the named provider, not general facts about China.
One practical next step: send a one-page summary built from the therapy table, with your specific question at the top, and ask the team which records they want next. An initial enquiry is free and does not commit you to any treatment or travel. Keep local care in place while that review proceeds, and seek local assessment first if symptoms are worsening.
Sources & scope of this guide
References and official service information relevant to this guide.
This is general planning information and has not been individually reviewed by a doctor. Medical decisions and personal treatment advice come from your treating clinicians.