Plan for your appointment... - Target CSF Leaks

Living with a suspected CSF leak can be exhausting — physically, mentally, and emotionally. Navigating the healthcare system while managing symptoms like orthostatic headaches, brain fog, or visual changes isn’t easy.

This guide is here to support you plan for your appointment. Whether you’re seeing your GP, attending A&E, or preparing for a specialist appointment, this page offers tailored suggestions to help you feel better prepared and more in control.

Page Contents

🩺 Initial GP appointment

For many people, a GP is the first point of contact. However, CSF leaks are still under-recognised in general practice, so a focused approach can really help.

Before your appointment:

Write down your symptoms and when they started.
Pay close attention to patterns, especially whether your symptoms:
- Worsen when upright (sitting, standing, walking), and
- Improves when lying flat.
Note any procedures you’ve had that might be relevant (e.g. epidural, lumbar puncture, spinal surgery).
List any additional symptoms you’ve noticed, such as:
- Neck pain or stiffness
- Nausea
- Tinnitus (ringing in the ears)
- Photophobia (sensitivity to light)
- Cognitive issues or fatigue

The key red flag for a CSF leak is the orthostatic nature of the head pain worsening when upright and resolving when you lie down. This alone should warrant further investigation.

During your appointment:
Clearly explain your symptoms, using simple phrases like:

“My headache eases when I lie flat and comes back when I sit or stand.”
“It feels like there’s pressure in my head that gets worse the longer I’m upright.”
or “It gets worse as the day goes on and I can’t tolerate being upright for long.”
Mention any other notable symptoms (from your list).

Gently raise the possibility of a CSF leak.

Ask whether they would consider:
- Referring you for an MRI of the brain
- Referring you to a neurologist or a specialist with experience in CSF leaks.

If your headache began suddenly, your GP may suggest going to A&E to rule out a brain bleed with a head CT scan. This is a reasonable step — and while brain sag (a sign of low CSF pressure) can sometimes be seen on a standard CT, most A&E clinicians won’t be looking for it, or may not recognise the signs. It is always worth returning to your GP afterwards to request a follow-up MRI for further investigation.

If you are struggling to be listened to, here’s a few tips:

Take someone with you to your appointment for moral support, and to help reinforce the impact and severity of your symptoms.
You are entitled to a second opinion. Consider asking if another GP can be brought into the consultation.

After your appointment:

Make a note of what was discussed.
If you feel your concerns weren’t taken seriously, don’t give up — you can book a follow-up or see a different GP in the same practice.

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🚨 A&E Visit

Some people first seek help from A&E, either because their symptoms are sudden and severe, or they’ve been advised to rule out other causes like a brain haemorrhage. While CSF leaks aren’t typically diagnosed or treated in emergency departments, it can still be a useful step — and there are ways to make the visit count.

When to consider going to A&E:

If your headache came on suddenly or after trauma
If your GP has advised you to go for a CT scan to rule out a brain bleed
If your symptoms are intolerable and escalating, especially if you’re struggling to stay upright

What to expect:

You may be offered a non-contrast CT scan of the brain to check for signs of haemorrhage or other serious concerns.
Signs of a CSF leak (such as brain sag or subdural fluid collections) can occasionally be seen on a head CT, but most A&E doctors will not be trained to look for these, nor will they be considering CSF leak as a possible diagnosis unless you raise it directly.
You may be discharged with pain relief or advised to follow up with your GP.

Tips for your visit:

Be clear about your symptoms, particularly:
- “The pain gets worse the longer I’m upright and improves when I lie flat.”
- “It feels like something is pulling down inside my head.”
Mention if symptoms began after a procedure like a lumbar puncture or epidural, or after an accident involving your spine or head.
If a CSF leak is not considered, ask the doctor to record your positional symptoms and your concern about a possible CSF leak in your notes.

After A&E:

Request a copy of the discharge summary and any scan reports — these can be helpful for your GP or future referrals.
Book a follow-up appointment with your GP and ask for:
- An MRI of the brain and/or spine, and
- Referral to a neurologist or CSF leak specialist.

🧠 Initial Neurology Appointment

You’ve probably waited several months for this appointment — and it may feel like a big moment. By now, you may already have had MRI scans of the brain and full spine, which are key tools in diagnosing a CSF leak. If not, or if you’re unsure, you can ask the neurologist whether these can be arranged. If you’ve had scans but haven’t yet received the results, this is usually the point at which they’ll be discussed.

Your first neurology appointment will likely be in-depth, so it’s worth preparing in advance. Bring a short summary that includes:

A timeline of when your symptoms began
A clear description of how they affect your day-to-day life
Your current health status
A list of medications or supplements you’re taking

This can help you stay focused and avoid forgetting important details.

What to expect during the appointment:

The neurologist should carry out a full neurological examination, which might include:
- Motor function and balance tests
- Reflex and coordination checks
- Sensory exams
- Looking at the back of your eyes with an ophthalmoscope

If CSF leak is suspected, you can ask whether:

Any signs were seen on your scans
Further imaging (such as spinal MRI, or CT myelogram) would be appropriate
A referral to a specialist centre is possible if local expertise is limited

Helpful questions to ask your neurologist:

What happens next?
What treatments are available if this is a CSF leak?
Will you refer me if you’re unable to treat me here?
Are there risks to leaving this untreated?

Top tip: If your neurologist doesn’t mention CSF leaks or seems unfamiliar with them, don’t panic. You can briefly explain the orthostatic nature of your pain and share one of our leaflets. It’s reasonable to request that your concerns are documented, and to ask about referral options if needed.

🧠 Neurosurgeon Appointment

This appointment can be unpredictable. If you’re being seen at a centre with experience in CSF leaks, it will likely be a productive session with a clear plan of action. But in hospitals less familiar with the condition, some patients unfortunately report feeling dismissed or even gaslighted. Go in prepared, and try not to let one appointment shake your confidence — you know your symptoms best.

Just like your neurology appointment, it’s worth preparing a summary to bring with you, including:

A brief account of when and how your symptoms started
The main symptoms you’re experiencing and how they affect your life
Your current health and daily functioning
Any medications or supplements you’re taking

The neurosurgeon will likely review your scans. You can also mention any previous treatments (e.g. blood patches) and how they affected your symptoms.

If surgery is being considered, you might want to ask:

What is the surgery called and what will it involve?
How long is the operation expected to take?
What are the risks or possible complications?
How long would I be in hospital afterwards?
What kind of recovery period should I expect?
How will pain be managed post-surgery?
Will I be given medication to manage potential rebound high pressure?
When can I drive again?
Will I need physiotherapy or any other rehab support?

If the appointment doesn’t go as expected, or you feel your concerns are not being taken seriously, don’t hesitate to follow up with your GP or referring consultant. You are entitled to a second opinion — and you are not alone in this journey.

Remember, you are entitled to receive the care and attention you deserve — don’t be afraid to advocate for yourself.

🩺 Coping with Disappointing Healthcare Appointments

When a healthcare appointment doesn’t go as planned, it’s completely understandable to feel disheartened and frustrated. You may have gone into the appointment with high hopes or urgent concerns, so it’s normal to feel disappointed when things don’t go as expected. Take a moment to acknowledge and validate those feelings — it’s okay to feel upset. Give yourself some space to breathe deeply and process your emotions, which will help you regain a sense of calm.

Once you’ve composed yourself, try to reflect on what went wrong during the appointment. Was it a miscommunication? Did you feel unheard? Or was there a lack of clarity or action on the part of the healthcare provider? Understanding the root cause of the issue will help you take constructive steps toward addressing it.

Next Steps for Coping:

Be proactive about follow-up actions:
- If communication was unclear, try writing down your concerns and questions so nothing is missed in future interactions.
- Contact the consultants secretary to reschedule or ask for clarification on unresolved issues.
- If you feel that the care you received wasn’t sufficient, consider seeking a second opinion or a referral to a specialist who is more familiar with CSF leaks.
Lean on your support network:
- Talk to friends, family, or fellow patients who understand what you’re going through. They can offer emotional support, share similar experiences, and help with practical advice.
- You can also connect with our community forum, which is free for everyone and includes a messenger chat for quick conversations and peer support.
- For members, we offer a weekly virtual support group, where you can join sessions for more in-depth discussions, share experiences, and receive ongoing support from others who truly understand your journey.
Consider making a formal complaint:
- If you feel that your concerns were not properly addressed, or if the experience left you feeling dismissed, you can make a formal complaint to the hospital’s PALS (Patient Advice and Liaison Service).
- PALS can guide you through the process and help resolve your issue, whether it’s regarding care, communication, or appointments. You can usually contact PALS via email.

Remember: Your health and well-being should always be the top priority. Advocating for yourself and addressing any issues with your healthcare experience is an important part of ensuring you get the best care possible.

🩻 CT/DS Myelography

A CT Myelogram (CTM) is typically performed as a day case. The procedure itself takes about an hour, followed by a bed rest period of 2-3 hours before you’re discharged. CTM and DSM (Digital Subtraction Myelography) are similar, with the primary difference being the technology used. If you are being investigated for a venous fistula, you may need to be scanned over two consecutive days but this depends on the experience of the clinician.

Depending on the hospital’s setup, some have dedicated radiology day units, where you’ll have your own bed for the day. Be sure to wear comfortable, loose clothing. You’ll need to change into a hospital gown (though you can keep your bottom half clothing on).

What to Expect:
Before the Procedure:

Your blood pressure and heart rate will be taken.
A radiologist will come to speak with you, explain the procedure, and answer any questions you might have.
They’ll present a consent form and talk about potential risks. You can choose to decline at any time, but for many, the benefits of the procedure outweigh the risks.

Questions to Consider:

What are the risks and potential side effects?
Can I have sedation for the procedure?
What type of needle is used?
Is DSM done under general anaesthesia?
Do you take a pressure reading during the procedure?
Is saline used to pre-pressurise the area?
How is pain managed after the procedure (headaches are common)?
How much radiation is involved in the scan?
When will I receive the results (some places may give you immediate feedback)?

Items to Bring with You or Have Ready:

Water bottle (important to hydrate post-procedure)
Caffeinated drink (e.g., Redbull or Monster)
Migraine cool strips (for any headache)
Painkillers (e.g., paracetamol, as headaches may occur)

During the Procedure:

You’ll be taken to the CT room in your bed, where you’ll wait for the team to finish setting up. Once ready, you will be positioned on the scanning table with wedges and pillows to ensure you’re comfortable and in the correct position. They may give you painkillers via IV at this point.
You will be sent through the scanner to ensure the team is happy with your positioning, and this may take a couple of attempts.
Next, they’ll prepare for the lumbar puncture part of the procedure. Local anaesthesia will numb the area, so you should feel minimal discomfort after the initial injection.
Saline may be injected to pre-pressurise your system, followed by the contrast itself. You’ll be scanned in between and immediately after the contrast injection. The procedure may require several runs to view the top of the spine or to identify the defect.
Once complete, the needle will be removed, and you’ll be taken back to the ward for up to 4 hours of bed rest before being discharged, depending on the hospitals protocols.

After the Procedure:

If you experience a headache, paracetamol will usually be offered.
It’s important to rest afterwards and drink plenty of water to help flush the dye, which is absorbed by your kidneys.
Caffeine can also be helpful in managing symptoms post-procedure.

Travel Considerations:

It’s recommended to have someone accompany you to drive, as you should not drive after the procedure.
If you have traveled a significant distance, consider staying at a hotel for the night before heading home..

💉 Blood Patch

It’s important to be informed and prepared when it comes to epidural blood patches. The level of information and support offered can vary depending on the hospital, so it helps to come equipped with questions and a clear understanding of what to expect.

Here are some questions you may like to ask:

Why do you want to do a blood patch?
Where will the blood patch be given?
What needle do you use?
Will the procedure be done under image guidance?
How much blood will you inject?
Have you performed this procedure before?
What is your success rate for my type of leak?
What is the likelihood of developing arachnoiditis, and if I was to have symptoms, how do you diagnose and treat it?
What are the restrictions and after-care instructions?
When will you follow up to assess my progress?
Will I be scanned again after a few months to monitor outcomes?

If you have travelled a fair distance for your procedure, consider staying at a hotel for 1-2 nights before heading home. Make sure you have someone with you to do the driving as you should not drive after the procedure.

What to Expect During and After the Procedure

Before the patch: You’ll change into a hospital gown and have basic checks like blood pressure and heart rate recorded. The clinician will explain the procedure, outline the risks and ask for consent.
During the patch: You’ll be positioned on your side or stomach. The area will be cleaned and numbed with a local anaesthetic. A needle is then placed into the epidural space, and your own blood is drawn from an IV in your arm and injected into that space.
After the patch: You’ll be asked to lie flat for a period of time — usually several hours — to let the patch settle. Some people feel immediate relief, while for others it can take several days. Some discomfort or pressure is normal, and you may be given painkillers to help.
At home: Rest is strongly advised for several days. Drink plenty of fluids, avoid lifting, bending or straining, and gradually return to normal activities.
When to seek help: If you develop new neurological symptoms, a new severe headache, severe back pain, fever, or signs of infection, contact the hospital or your GP promptly.

💉 Fibrin Glue

Depending on the experience and setup of the hospital team, fibrin glue may be offered on the same day as your myelogram, or it may be scheduled for a later date. Not all hospitals offer this option, and practices can vary across centres.

Like the myelogram, this is a relatively quick procedure but bedrest is required afterwards for a few hours before you can be discharged.

Preparing for the Procedure

Wear comfortable, loose clothing. You will change into a hospital gown (you may be able to keep your bottom half clothing on). You’ll have your vital signs like blood pressure and heart rate checked beforehand. The radiologist will speak with you to explain the procedure, answer your questions, and go over a consent form and any risks involved. You are free to opt out of the procedure at any point.

Questions You May Like to Ask

What does this procedure involve?
How many of these procedures have you performed?
What is the success rate for my type of leak?
How much glue is injected?
What happens if I go into anaphylactic shock?

Aftercare

If you’re travelling from further afield, consider booking a hotel for the night rather than travelling straight home. You should also bring someone to drive you, as it’s not advisable to drive yourself after the procedure.

Post-procedure, it’s important to rest, stay hydrated, and monitor how you feel. If you experience any unusual symptoms, worsening pain, or signs of an allergic reaction, contact your medical team immediately or present yourself at A&E.

The Do’s and Don’ts after Blood Patching / Fibrin Glue

✅ DO’s:

✅ Rest: Take it easy for at least 24-48 hours after the procedure. Rest is important to allow the patch to take effect.
✅ Hydrate: Drink plenty of water to help your body process the blood and aid recovery.
✅ Pain Management: Take prescribed pain relief as directed. Over-the-counter painkillers like paracetamol can help if necessary.
✅ Observe Symptoms: Monitor your symptoms, particularly if the headache persists or worsens, and contact your healthcare provider if needed.
✅ Stay in Touch with Your Care Team: If you feel unwell or have any unusual symptoms, reach out to your healthcare provider immediately.
✅ Follow Up: Attend any follow-up appointments to monitor your progress and ensure the patch is working.

❌ DON’TS:

❌ Don’t Rush Back to Activity: Avoid strenuous activity, heavy lifting, or exercising for a few days after the procedure.
❌ Don’t Lie Flat for Long Periods: While lying flat is important during bed rest, avoid doing so for too long without moving, as this can increase stiffness.
❌ Don’t Drive: Avoid driving for at least 24 hours after the procedure, especially if you were given sedation or feel dizzy.
❌ Don’t Ignore Symptoms: If your headache doesn’t improve or gets worse, don’t hesitate to seek further medical advice.
❌ Don’t Skip Follow-Up Appointments: Skipping follow-up care can result in complications or missed chances to monitor your recovery.

🦻 ENT Appointments

Some patients are referred to a skulled-based ENT (Ear, Nose and Throat) specialist, particularly if symptoms suggest a cranial CSF leak — such as clear fluid from the nose (CSF rhinorrhoea) or ear (CSF otorrhoea), hearing changes, or persistent sinus or middle ear issues. While ENT might be your first stop, not all consultants are familiar with CSF leaks, so being prepared is key.

Before your appointment, make a note of your symptoms — especially if you’ve experienced clear, watery discharge from one nostril or one ear, worsened by bending forward or straining. If possible, collect a sample of the fluid in a sterile container and keep it in the fridge in case the consultant agrees to send it for testing.

Questions you might want to ask:

Could this be a cranial CSF leak?
Do you test nasal/ear fluid for beta-2 transferrin?
Can you refer me for high-resolution imaging (CT or MRI)?
Do you work with a neurologist or neurosurgeon if a leak is confirmed?
If the leak is intermittent, how do you investigate it?

If your concerns aren’t being taken seriously or the consultant is unfamiliar with CSF leaks, it’s okay to return to your GP to discuss a referral to a specialist leak centre.

🧪 Have you considered taking a sample collection tube to your ENT appointment?
Our Cranial CSF Leak Sample Kit includes a sterile tube and guidance for safe collection of suspected CSF. It’s designed to support appropriate testing when fluid is seen leaking — especially when the cause is unclear or dismissed.

Cranial CSF Leak Sample Collection Guide & Tube (UK ONLY)

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🧠 Need more detailed support?
If you suspect a cranial CSF leak or want to explore this topic further, visit our dedicated Cranial CSF Leak Resource Hub — designed to help patients advocate for appropriate testing and care when symptoms are often misunderstood.

🧠 Pre-Surgery (Cranial Leak) Appointments

If you’ve been referred for surgery to repair a cranial CSF leak, your pre-operative appointment is your chance to ask questions, confirm details, and ensure you’re well prepared for the procedure.

Some common topics that may be discussed: