CSF leak at T7 with 2 blood patches and continued symptoms

@sharonthelen
You may need to go back to the ER if your symptoms worsen.

Do they know the cause of your CSF leaks? Have you seen a neurosurgeon?

Here is what I learned about the causes of spontaneous CSF leaks:

Connective Tissue Disorders: Conditions like Ehlers-Danlos syndrome or Marfan syndrome can weaken the connective tissues, making them more susceptible to leaks.

Increased Intracranial Pressure: Conditions that lead to elevated pressure within the skull can cause the CSF to push against the membranes, potentially leading to a leak.

Trauma: Although spontaneous leaks are not caused by direct trauma, previous injuries or surgeries can weaken the membranes and lead to leaks over time.

Idiopathic Factors: In many cases, the exact cause of spontaneous CSF leaks remains unknown, which is referred to as idiopathic.

Age-Related Changes: As people age, the tissues surrounding the brain and spinal cord may become thinner and more prone to leaks.

Structural Abnormalities: Congenital abnormalities in the spine or skull can predispose individuals to leaks.

Overexertion or Straining: Activities that involve heavy lifting or straining can sometimes trigger a leak in susceptible individuals.

@sharonthelen
Do you have an autoimmune disease or high blood pressure?

Here are some possible treatments for CSF leaks I read about:

Conservative Management

Bed Rest: Patients are often advised to rest and avoid activities that could exacerbate the leak.
Hydration: Increasing fluid intake can help replenish CSF levels.
Caffeine: Caffeine may help constrict blood vessels and increase CSF production, providing temporary relief from headaches.

Medical Interventions

Epidural Blood Patch: This is a common procedure where a small amount of the patient’s blood is injected into the epidural space near the site of the leak. The blood forms a clot that seals the leak.
Intravenous (IV) Fluids: In some cases, IV fluids may be administered to help restore CSF volume and alleviate symptoms.

Surgical Options

Surgical Repair: If the leak is persistent and conservative measures fail, surgery may be necessary to locate and repair the tear in the dura mater (the outermost layer of the meninges).
Endoscopic Techniques: Minimally invasive techniques may be used to repair leaks, especially in cases involving the skull base.

Urgency of Treatment

Urgent Cases: If a CSF leak is accompanied by severe symptoms such as significant headaches, neurological deficits, or signs of infection (like fever or stiff neck), it may require urgent evaluation and treatment. This is particularly true if there is a risk of complications such as meningitis.
Non-Urgent Cases: Many spontaneous CSF leaks can be managed on an outpatient basis, especially if symptoms are mild and the patient is stable. However, monitoring and follow-up are essential.

@sharonthelen

I also looked up what types of doctors to see if you have CSF leaks.

Cerebrospinal fluid (CSF) leaks are typically managed by specialists with expertise in the central nervous system and related conditions. The following types of doctors are commonly involved in the diagnosis and treatment of CSF leaks:

## Types of Doctors Who Treat CSF Leaks

### 1. **Neurologist**
- **Role**: Neurologists specialize in disorders of the nervous system, including the brain and spinal cord. They can evaluate symptoms, perform diagnostic tests, and manage non-surgical treatment options for CSF leaks.

### 2. **Neurosurgeon**
- **Role**: Neurosurgeons are specialized in surgical interventions for conditions affecting the brain and spine. If a CSF leak requires surgical repair, a neurosurgeon will perform the procedure to locate and fix the tear in the dura mater.

### 3. **Pain Management Specialist**
- **Role**: These specialists may be involved in managing the pain associated with CSF leaks, particularly if headaches are severe. They can provide non-surgical interventions, such as epidural blood patches.

### 4. **Radiologist**
- **Role**: Interventional radiologists may assist in diagnosing CSF leaks through imaging studies and may perform procedures like blood patches under imaging guidance.

### 5. **Otolaryngologist (ENT)**
- **Role**: If the CSF leak is related to the skull base or involves the sinuses, an ENT specialist may be involved in the diagnosis and treatment, especially if surgical intervention is needed.

### 6. **Rheumatologist**
- **Role**: In cases where connective tissue disorders contribute to CSF leaks, a rheumatologist may be involved in the overall management of the underlying condition.

If you suspect a CSF leak, starting with a neurologist is often a good choice, as they can guide you through the diagnostic process and refer you to other specialists as needed.

Thank you for your response. I’ve had genetic testing for a connective tissue disorder which came back negative. My leak was spontaneous and I am seeing a neurosurgeon here in WI but he doesn’t treat this condition. He said he believes I will need to have surgery to repair the dural tear at T7. I am having worsening symptoms, headaches, constant tinnitus and some numbness in my lips. I really want to be seen by an expert in repairing these leaks but can’t find anyone close to where I live. I hope and pray Mayo comes through and will treat me.