Csf leak that wont heal
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Hey everyone
I am hoping that some brilliant minds here may be able to help me.About 8 months ago, i got a lumbar puncture. The doctor botched it, punctured my dura, and caused a csf leak.
This is actually not too uncommon, in fact, statistics now site that the dura is punctured in up to 25 percent of invasive spinal procedures, including even epidural.
Most people heal well.
I haven't.
I recieved a few rounds of epidural blood patches; where they literally inject your own blood into/ near the area where they think the leak is. They dont know exactly the mechanism, there are only 2 semi substantiated theories. One, is that the blood itself works as a sealant ( tempoeary) and then the long term and more important effect is that the blood actually stimulates tissue repair.
I did recover maybe 60 to 70 percent of the way, with likely a small residual leak after my second round of a blood patch, but then it "broke"
I am a young female, i cant really understand why my tissue is having such a hard time healing. According to the imaging there is nothing anatomical that would be interfering, it is just the way I am healing.
I was told by a physician many years ago I probably have ehlers danlos, which I think is contributing. I have been taking peogesterone, pregnenolone, vitamin d, vitamin k, t3 and t4, calcium ( via milk) magneosum,
Any ideas? This is truely awful. I cant be upright for more than 15 minutes at a time. Thank you -
@healingisposs18 Sorry that you had to undergo s botched procedure that affected your dura.
I asked the Delphi Ray Peat AI. Here's its answer:
The restoration of the myelin sheath and the recovery of a punctured dura mater involve overlapping principles in terms of metabolic and structural support, but they are distinct processes requiring tailored approaches. Both rely heavily on the body’s regenerative capacity, which is influenced by factors like energy metabolism, inflammation, and the availability of specific nutrients and hormones.
1. Myelin Sheath Restoration
The myelin sheath is a lipid-rich structure that insulates nerve fibers, and its repair depends on supporting the cells responsible for myelination, such as oligodendrocytes in the central nervous system. Key factors include:
Saturated Fats and Cholesterol: Myelin is composed largely of cholesterol and saturated fats. A diet rich in these, while avoiding polyunsaturated fats (PUFAs), supports the structural integrity of myelin [2][7].
Progesterone: Progesterone has been shown to promote myelin repair and protect against neuroinflammation. It enhances the survival and differentiation of oligodendrocyte precursor cells [1][7].
Thyroid Hormone: Essential for energy metabolism and myelin synthesis, thyroid hormone supports the overall regenerative process [1][6].
Niacinamide (Vitamin B3): This inhibits the release of fatty acids, protects against excitotoxicity, and supports the regenerative capacity of tissues, including myelin [2].
2. Recovery of Punctured Dura Mater
The dura mater, being a dense connective tissue, requires a different focus for healing:
Collagen Synthesis: The dura mater is rich in collagen, so nutrients like glycine, proline, and vitamin C are critical for its repair. Glycine, in particular, supports collagen synthesis and has anti-inflammatory properties.
Sulfur Compounds: MSM (methylsulfonylmethane) or other sulfur sources can contribute to the structural integrity of connective tissues by supporting disulfide bond formation in collagen.
Anti-inflammatory Support: Excessive inflammation can hinder healing. Progesterone and aspirin, in appropriate doses, can modulate inflammation without suppressing the regenerative process [2][7].
Energy and Oxygenation: Adequate glucose and thyroid hormone are essential to fuel the energy-intensive process of tissue repair. Avoiding hypoxia is critical, as oxygen is required for collagen cross-linking and overall healing.
3. Overlapping Supplementation
While the processes differ, there is some overlap in the supplementation needed for both:
Progesterone: Beneficial for both myelin repair and modulating inflammation in dura mater recovery.
Thyroid Hormone: Supports energy metabolism, which is foundational for all regenerative processes.
Niacinamide: Enhances energy production, protects against oxidative stress, and supports both nerve and connective tissue repair.
Glycine: Critical for collagen synthesis in the dura mater and as a precursor for glutathione, which protects against oxidative damage in myelin repair.
Vitamin
Essential for collagen synthesis and as an antioxidant to protect against oxidative stress in both processes.4. Specific Considerations for Dura Mater Recovery
The dura mater’s role in protecting the brain and spinal cord means that its repair must also address the risk of infection and cerebrospinal fluid (CSF) leakage:
Infection Control: Ensuring a sterile environment and possibly using natural antimicrobials like iodine or honey can be helpful.
CSF Support: If there’s a CSF leak, maintaining hydration and electrolyte balance is crucial to support fluid dynamics and healing.
Practical Suggestions
Focus on a diet rich in saturated fats, cholesterol, and high-quality protein to support both myelin and connective tissue repair.
Supplement with glycine (3–5 grams daily), niacinamide (50–100 mg with meals), and vitamin C (500–1000 mg daily) to enhance collagen synthesis and antioxidant defenses.
Consider progesterone (topical or oral, depending on individual needs) to modulate inflammation and support tissue regeneration.
Avoid PUFA-rich foods, as they can exacerbate inflammation and impair healing.
If you’d like to discuss specific dosages or refine this approach further, let me know. The interplay between these processes is fascinating, and tailoring the strategy to your needs can maximize the regenerative potential.
Temporal thinking is the faculty that’s
engaged by an enriched environment, but it’s
wrong to call it “thinking,” because it’s simply
the way organisms exist... - Ray Peat Nov 2017 Newsletter -
As far as electrolyte supplementation goes, here's the answer for the protocol:
Electrolyte supplementation should be tailored to your specific needs, taking into account your metabolic state, stress levels, and dietary habits. The goal is to maintain a balance of key minerals—sodium, potassium, magnesium, and calcium—while avoiding deficiencies or excesses that could disrupt cellular energy production or increase stress on the body. Here’s a practical approach:
1. Sodium
Sodium is essential for maintaining extracellular fluid balance, nerve function, and energy production. It works synergistically with potassium to regulate cellular hydration and metabolism.
Sources: Use high-quality salt (such as sea salt or Himalayan salt) liberally in your food. Sodium intake should be adjusted based on your stress levels, as stress increases aldosterone, leading to sodium loss [2][8].
Protocol: Start with 1/2 to 1 teaspoon of salt daily, divided across meals, and adjust based on your taste and symptoms (e.g., fatigue, low blood pressure, or muscle cramps). If you’re sweating heavily or under significant stress, you may need more.
2. Potassium
Potassium is primarily an intracellular ion, critical for nerve function, muscle contraction, and maintaining cellular energy production. It balances sodium and helps regulate blood pressure.
Sources: Fruits like oranges, melons, and ripe bananas are excellent sources. Coconut water can also provide potassium, but avoid overconsumption due to its high potassium-to-sodium ratio.
Protocol: Aim for 3,000–4,700 mg of potassium daily from food sources. If you’re supplementing, potassium bicarbonate or potassium citrate can be used cautiously, starting with 200–400 mg per day, taken with meals to avoid gastrointestinal discomfort.
3. Magnesium
Magnesium is crucial for stabilizing ATP, supporting mitochondrial function, and regulating nerve and muscle activity. It’s often depleted under stress or in hypothyroidism [3][6].
Sources: Leafy greens, coffee, dark chocolate, and magnesium-rich waters are good dietary sources. Magnesium glycinate or magnesium bicarbonate are excellent supplemental forms.
Protocol: Start with 200–400 mg of magnesium daily, divided into two doses. If you experience loose stools, reduce the dose or switch to a more bioavailable form like magnesium glycinate.
4. Calcium
Calcium is vital for bone health, nerve signaling, and muscle function. It also has anti-inflammatory and anti-stress effects, particularly when balanced with magnesium [2][6].
Sources: Dairy products like milk, cheese, and yogurt are the most bioavailable sources. If you’re not consuming dairy, eggshell calcium or calcium carbonate can be used as supplements.
Protocol: Aim for 1,000–1,500 mg of calcium daily, primarily from food. If supplementing, take calcium with meals to enhance absorption and avoid interfering with magnesium uptake.
5. Balancing Ratios
Sodium-to-Potassium Ratio: A ratio close to 1:1 is ideal, but slightly more sodium may be beneficial under stress. Avoid excessive potassium supplementation without adequate sodium, as this can disrupt cellular function.
Calcium-to-Magnesium Ratio: A 2:1 ratio (e.g., 1,000 mg calcium to 500 mg magnesium) is generally recommended, but individual needs may vary based on stress levels, thyroid function, and dietary intake.
6. Practical Tips
Hydration: Combine electrolytes with adequate hydration. A pinch of salt in water with a squeeze of orange juice can provide a balanced mix of sodium, potassium, and glucose to support cellular energy.
Monitor Symptoms: Pay attention to signs of imbalance, such as muscle cramps (low magnesium or potassium), fatigue (low sodium), or irritability (low calcium).
Avoid Excess: Over-supplementation can be as harmful as deficiency. For example, excessive magnesium can cause diarrhea, and too much calcium without magnesium can lead to calcification issues.
7. Special Considerations
If you’re under significant stress, recovering from illness, or experiencing symptoms of hypothyroidism, your electrolyte needs may be higher. In these cases, focus on increasing sodium and magnesium while ensuring adequate calcium and potassium intake.
For wound healing or recovery from injury, hypertonic saline solutions (e.g., seawater or concentrated salt solutions) have been shown to accelerate healing by improving cellular energy production and reducing inflammation [8].
This protocol provides a foundation, but individual needs can vary. If you’d like to discuss specific symptoms or refine this approach further, let me know!
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@yerrag wow thank you so much! Sorry can you specify which vitamin is critical for collagen synthesis? Vitamin c? It just shows up as a smiley face
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@healingisposs18 said in Csf leak that wont heal:
I was told by a physician many years ago I probably have ehlers danlos, which I think is contributing.
Gluten and lactose are very often poorly tolerated in EDS. Not everyone. This is likely due to the way EDS affects the gastrointestinal system, leading to increased sensitivities and intolerances.
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@healingisposs18 Yes. It's vitamin C.
You may want to directly ask the Ray Peat AI on follow up questions. It's been very helpful to me.
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For 8 months? This is crazy.
Some vitamin C is a good thought but I would double down on supplementing pantethine (B5), P5P (B6), biotin and choline and folate. For healing and lipid sheath synthesis.I don't hold taking T3 and T4 in good esteem in this context because it suppresses upstream TSH and TRH whereas increased TRH in the opposite would actually be promoting healing of spinal injuries AFAIK.
As for thyroid I'd rather meddle with potassium iodide to keep that Csf-production going well by the sodium iodide symporters instead of depending only on coffeine for minor symptom relief.
D3, K, Ca, Mg all seem pointless to me wrt a csf leak.
Prog or Preg I have no idea about in this context.
Sulphur compounds are another good idea, but not necessarily MSM. Anyhow the pantethine includes physiologically essential sulphur groups.
Perhaps drinking field horsetail infusion (for the soluble silicium) and some 100-200mg hyaluronic acid (<100.000kDa size) every day could be of marginal benefit.
Perhaps some red light therapy shining on your back could be of complementary healing benefit.
And this may read like a joke but is meant seriously: Be careful to never push to hard when on the toilet because that will exert pressure and reopen the leak. -
@CrumblingCookie you are absolutely right and its no joke - anything that could increase intracranial pressure including exertion while going to the bathroom is prohibited.
Can you explain more about trh?and potassium iodine i didnt understand.
Yes, 8 minths is insane and its been torture.
