Why the medicine history matters more than a general referral letter
When you first saw a neurologist, the priority was diagnosis and starting treatment. When you now ask about drug-resistant epilepsy, the question has changed. The treating team is not asking whether you have epilepsy. They are asking whether your seizures have genuinely not responded to appropriately chosen and adequately taken medicines, and whether further assessment could help.
That distinction changes what you send. A general letter saying 'seizures since 2015, tried several medications' is not enough. A useful record states each medicine by name, the dose reached, how long it was taken, whether it was taken consistently, and what changed in seizure frequency or severity. It also states why each medicine was stopped or changed, whether because of lack of benefit, side effects, or another reason.
This is not administrative detail. It is the evidence a clinician uses to decide whether your case fits the pattern where epilepsy surgery can be considered. Epilepsy surgery can be considered for selected people whose seizures are not controlled by medicines, and assessment examines potential benefits and risks. That assessment depends on knowing what has already been tried.
What a medicine-by-medicine record should contain
For each anti-seizure medicine, the treating team needs enough detail to judge whether the trial was adequate. A medicine that was started but never increased, or stopped after a few days because of a mild side effect, tells a different story from one taken at full dose for months without benefit.
The practical items to include are the medicine name, the dose at the highest point reached, the date it started and stopped, and the reason for stopping. If the dose was limited by side effects, say which side effects and how they affected daily life. If the medicine was taken irregularly, say so. Clinicians need accuracy, not a perfect record.
Seizure outcome during each medicine also matters. Did seizures stop completely, reduce in number, change in type, or continue unchanged? If you keep a seizure diary, include a summary rather than every entry. If you do not, describe the pattern in your own words and note that it is an estimate.
A simple table or list is often clearer than prose. You can prepare this yourself from pharmacy records, clinic letters and your own notes. Ask your current treating clinician to confirm the doses and dates if you are unsure.
- Medicine name and formulation, if relevant
- Highest dose reached and how long it was maintained
- Start and stop dates, or approximate periods
- Reason for stopping: lack of benefit, side effects, cost, supply, or other
- Seizure response during that period, in your own words
- Any documented allergy or serious adverse reaction
Seizure records and EEGs: what to send and what to flag
Medicine history alone does not describe the epilepsy. The treating team also needs to understand seizure type, frequency and how seizures affect you. A written summary of seizure types, typical frequency per month, and any patterns or triggers is more useful than a stack of undifferentiated diary pages.
EEG records are also relevant, but their value depends on what they show and when they were done. Send the actual reports and, where available, the digital files or discs rather than only a typed summary. If an EEG was normal, that is still information. Do not assume a normal EEG rules out the need for assessment, and do not assume an abnormal one confirms surgical suitability.
Imaging records such as MRI reports and discs are often requested alongside EEGs when epilepsy surgery is being considered. Whether you need new imaging, and which type, is a clinical decision for the treating team. Do not arrange new tests solely for an overseas enquiry unless a clinician has asked for them.
If records are incomplete, say so clearly rather than leaving gaps that look like missing information. A short note explaining that an early EEG is unavailable, or that a medicine was prescribed abroad without written records, helps the reviewer understand the limits of the file.
How to describe the question you want answered
A common mistake is to send records without stating what you want to know. The treating team can review a file more efficiently if you say whether you are asking about epilepsy surgery assessment, a second opinion on medicine strategy, or whether further investigations are needed before a decision can be made.
Write two or three sentences at the top of your summary. For example: 'I have focal seizures that have continued despite three anti-seizure medicines. I want to know whether I am a candidate for an epilepsy surgery assessment in China, and what records you need.' This is not a treatment request. It is a clear statement of the decision you are trying to make.
If you have already been told you are not a surgical candidate elsewhere, say that and explain why. If you have been told you are a candidate but the assessment was incomplete, say what remains unresolved. This prevents the team from repeating work and helps them focus on the actual gap.
Avoid asking for a diagnosis or a treatment plan by email. A records-based review can indicate whether further assessment is reasonable, but it does not replace in-person evaluation. The hospital decides suitability after its own assessment.
What a multidisciplinary evaluation involves and what it does not promise
Epilepsy surgery assessment is typically a multidisciplinary process. It may involve neurology, neurosurgery, neurophysiology, neuropsychology and radiology, depending on the case. The purpose is to determine whether surgery could reduce seizures, what risks are involved, and whether the potential benefit justifies those risks.
This is not a single appointment that produces a yes or no answer immediately. It may require additional tests, discussions among specialties, and time for the team to reach a considered view. No standard investigation list or timeline applies to every case, and you should not assume one. Ask the treating hospital what its assessment pathway involves for your situation.
An assessment does not guarantee that surgery will be offered. Some people are found not to be suitable candidates, or the risks are judged too high relative to the likely benefit. Others may be offered further medicine trials or other options instead. The assessment is a structured way to reach that decision, not a commitment to operate.
If you are considering care in China, the relevant question is whether the hospital can review your records and advise on next steps. The hospital decides whether to accept you for assessment. No coordinator or enquiry service can make that clinical decision.
Preparing your summary and taking the next step
A practical way to prepare is to build one document with four parts: a short statement of your question, a medicine-by-medicine table, a seizure summary, and a list of available EEG and imaging records. Keep it factual and avoid interpretation. If you are unsure about a dose or date, write 'approximate' rather than guessing.
If you have a current treating neurologist, ask them to review your summary for accuracy. They do not need to write a referral letter unless the receiving hospital requests one. A clear patient-prepared summary is often more useful than a vague letter that does not address the specific question.
For an initial enquiry, you do not need to send a complete medical archive. A brief summary of the diagnosis, medicines tried and your main question is enough to start. The team can then tell you what additional records would be useful. An initial enquiry is free and does not require buying a proxy consultation.
If you want help identifying a suitable hospital or preparing your records for review, ChinaSpecialistCare can assist with non-clinical coordination. The treating hospital remains responsible for all clinical decisions, including whether an epilepsy surgery assessment is appropriate for you.
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.