Frequently Asked Questions
Tarlov Expansions or "cysts" are sacs or lesions in the spine in the tailbone or sacral region. The sacral region consists of five sacral vertebrae at the base of the spine right above the tailbone. Spinal fluid fills up the cysts, which can vary in size. Smaller cysts may go undetected, while larger cysts tend to cause more symptoms. Cysts often start small and grow larger and more problematic as the sac fills with spinal fluid. Unlike other cysts that can form in the spine, Tarlov cysts contain nerve fibers within the cyst walls. Its positioning around a nerve root earns it alternative names of perineural or sacral nerve root cyst.
As fluid fills the cysts, the expanding size causes pressure and may compress nerve roots, which can cause a host of symptoms and side effects. The pressure can also cause deterioration of the bones in the area.
The condition, however, is very rare. Only about five percent of the adult population is affected by Tarlov cysts. Women are more likely than men to deal with the condition.
The symptoms of Tarlov cysts vary significantly depending on the severity of the cyst. In some cases, a Tarlov cyst doesn’t produce any noticeable symptoms. These minor cases may go undetected. As the cysts grow and expand, they press on the nerve roots, which often causes symptoms to appear. You might first feel pressure and then eventually pain. The symptoms you feel may also vary depending on the exact location of the cyst.
Patients have expressed common symptoms, such as:
The pain associated with a Tarlov cyst may present as an ache in the lower back. Others feel a sciatica-type pain that radiates down through the buttocks and into one leg. The nerve pain associated with the cysts may gradually become worse over time. Some patients feel some relief from the symptoms while lying down. Sitting or standing may cause the pain to increase in severity.
Tarlov cysts are divided into one of four categories based on the severity of the experienced symptoms:
Diagnosis of a Tarlov cyst often happens once the symptoms occur. The doctor may perform a physical exam first. An MRI is an effective way to determine if the source of pain is a Tarlov cyst. The cyst looks like a dilated area or a balloon-like structure in the sacral area of the spinal column.
In other cases, the patient doesn’t have any symptoms but may have an MRI for another reason. During that MRI, the cysts may be discovered. CT scans are sometimes used as part of the diagnosis process, as are myelograms. In these tests, contrast dye is used to get a better look at the structures in the area. Once the dye is injected, the physician uses a CT scan to create the images.
Because of the still unclear pathogenesis of Tarlov Cysts, there has yet to be a consensus on their optimal treatment. Treatment is handled on a case-by-case basis depending on the specific symptoms, cyst location and severity of the case. The medical care team treats the specific symptoms and effects of the cyst to provide as much relief as possible while preventing damage to the spinal cord. In minor cases with few or no symptoms, the patient may receive no treatment at all. The medical team may simply watch the cysts to ensure they don’t grow and cause problems.
Surgery is an option for some patients if the cysts do cause serious pain or other complications. This typically happens when the cysts grow in size and cause significant compression in the spinal cord. Two commonly utilized surgical procedures include the draining and extraction of cerebrospinal fluids from the cyst and the complete or partial removal of the cyst from the area.
If the decision is made to drain the cyst, the procedure can provide relief right away from the pain and pressure. However, the effects are not usually long-lasting. The fluid often begins filling the cyst again after the draining procedure. This can cause the pain and pressure to return.
In cases of severe pain or if the nearby bone begins deteriorating, a more invasive surgery may be required. Surgery for a Tarlov cyst can be particularly risky and complicated. Not only does the surgery take place in the spinal cord, which is risky enough, but it also involves the nerves, which adds to the complexity of the procedure. During the procedure, the surgeon opens the cyst to drain the fluid and remove the nerves from the wall of the cyst. The surgeon then seals the area where the spinal fluid enters the cyst to prevent it from refilling the space.
The surgery can involve a lengthy healing period, especially for the involved nerves. This means the surgery doesn’t always provide immediate pain relief, but the patient may feel better after recovery.
Another option that is sometimes used involves injecting fibrin glue into the cyst. The glue includes several different substances that create an effect similar to blood clotting. The cyst is first drained to remove the spinal fluid that is already inside. The glue is then injected into the area to seal it closed, preventing more spinal fluid from entering the space.
The results of this procedure are mixed. Some patients receive only temporary relief, while others experience longer-lasting relief. Some find relief right away after the procedure. Others find that relief is delayed.
If surgery isn’t an option, many patients with Tarlov cysts rely on medications for pain relief. Oral or injected corticosteroids are sometimes used to treat the pain. These medications come with many potential side effects, including fluid retention, high blood pressure, psychological effects, weight gain, and glaucoma. Non-steroidal anti-inflammatory drugs (NSAIDS) are also used in some patients to help control the pain. Long-term use of NSAIDS can cause stomach ulcers, high blood pressure, leg swelling, and liver or kidney problems.
Another technique used for pain management is Transcutaneous Electrical Nerve Stimulation (TENS). This treatment method involves electrical impulses that travel through the skin and into the nerves to relieve pain. Some patients may experience mild irritation at the site of the electrodes, but otherwise, TENS is a safe option.
Tarlov Cyst Support Groups Overview
Uniting for Understanding and Support:
Welcome to the Tarlov Cyst Support Community, where compassion, understanding, and shared experiences form the foundation of our journey together. Below are key support groups dedicated to individuals affected by Tarlov Cyst Disease:
Tarlov Cyst Support for Cysters and Mysters: https://www.facebook.com/groups/cystersandmysters/
Description: This support group provides a safe and uplifting environment for those affected by Tarlov Cyst Disease. Whether you're a patient, caregiver, pre-op, post-op, or non-op, all are welcome to share experiences, ask questions, and find support. Managed by TCD sufferers, it welcomes individuals from all faiths and beliefs, fostering a sense of community
Tarlov Cyst Disease Open Forum:
https://www.facebook.com/groups/661181774804285/
Description: An open forum that welcomes discussions on doctors, treatments, and experiences related to Tarlov Cyst Disease. The group encourages the sharing of both positive and challenging experiences, aiming to enhance understanding and management of the disease.
TARLOV CYST DISEASE AWARENESS:
https://www.facebook.com/groups/157071409314
Description: Dedicated to spreading information and awareness about Tarlov Cyst Disease, this group aims to reach affected individuals and medical professionals. Members discuss their struggles openly, addressing the challenges of a disease often misdiagnosed or dismissed. The group seeks to bring attention to this misunderstood neurological condition.
Tarlov Cyst Society Of America: https://www.facebook.com/groups/LIFEAFTERTARLOVCYSTSURGERY
Description: A private and closed group ensuring confidentiality for its members. The Tarlov Cyst Society of America fosters a supportive community while emphasizing confidentiality and respect. It serves as a hub for national and international updates, connecting members with sister groups globally.
Sister Groups:
Tarlov Cyst Society of Europe
Tarlov Cyst Society of Canada
Tarlov Cyst Society of Australia
Tarlov Cyst Society of Spain
Tarlov Cyst Society of New Zealand
Note: The sister groups provide localized support and information.
Tarlov Cyst International Research & Support:
https://www.facebook.com/groups/Tarlovcyst
Description: This group supports education and research related to Tarlov Cyst Disease. It is one of the largest support groups globally, with members from various countries. Privacy is a priority, and discussions focus on maintaining respect and unity. The group also encourages members to participate in surveys for research purposes.
Joining the Community:
Feel free to explore these groups, connect with others, and share your journey. Each group offers a unique space for support, information exchange, and unity in facing the challenges of Tarlov Cyst Disease.
Explore Tarlov Cyst Society of America
Contact Moderators for any inquiries or suggestions.
Together, we stand strong in the face of Tarlov Cyst Disease. Welcome to a community where understanding and support prevail.
Frequently Asked Questions
A DAO is an organization represented by rules encoded as a computer program that is transparent, controlled by the organization members, and not influenced by a central government. It operates on a blockchain, typically Ethereum, and its financial transactions and rules are maintained on the blockchain.
A DAO's financial transaction record and program rules are maintained on the blockchain. The transparent and democratic nature of DAOs provides a new way to make decisions without traditional centralized control.
https://youtu.be/miuksno5fHA?si=VgRPh0EXejyDT_Xr
A Decentralized Autonomous Organization (DAO) can potentially contribute to helping Tarlov cyst patients in several ways, leveraging its decentralized and transparent nature. Below are some possible initiatives:
Community Support and Awareness:
Use DAO resources to build and support an online community for Tarlov cyst patients. This platform can serve as a space for patients to share experiences, discuss treatment options, and provide emotional support. Additionally, the DAO can invest in awareness campaigns to educate the public and healthcare professionals about Tarlov cysts.
Treatment Access Funds:
Establish multiple funds within the DAO to assist Tarlov cyst patients in covering the costs of treatments, surgeries, or therapies. This could be particularly beneficial for patients facing financial constraints in accessing the care they need.
Funding for Research:
Allocate funds from the DAO to support medical research focused on Tarlov cysts. This could involve collaborations with research institutions, universities, or medical professionals working on finding better treatment options, understanding the causes, and improving the overall understanding of Tarlov cysts.
Telemedicine and Patient Care Initiatives:
Explore the possibility of implementing telemedicine solutions for Tarlov cyst patients. This could involve creating a platform where patients can connect with healthcare professionals specializing in Tarlov cysts for remote consultations. The DAO could fund initiatives that improve access to specialized care for patients who may not have easy physical access to medical professionals.
Advocacy and Policy Influence:
Utilize the DAO's resources to engage in advocacy efforts. This might involve lobbying for increased awareness of Tarlov cysts within the medical community, influencing healthcare policies to better accommodate the needs of Tarlov cyst patients, and supporting initiatives that aim to improve the overall quality of care for those affected.
Research Collaboration with Blockchain in Healthcare:
Explore partnerships with blockchain projects focused on healthcare to leverage decentralized technologies in the collection and sharing of medical data. This could enhance research capabilities, contribute to a better understanding of Tarlov cysts, and potentially accelerate the development of effective treatments.
Educational Initiatives:
Develop educational resources for both patients and healthcare professionals to enhance awareness and understanding of Tarlov cysts. This could include creating informational websites, organizing webinars, and distributing educational materials.
If you're interested in contributing to a project focused on helping Tarlov cyst patients or any healthcare-related DAO, here are several ways you can get involved:
A blockchain is a decentralized and distributed digital ledger that records transactions across multiple computers in a secure and transparent way. It is a foundational technology underlying cryptocurrencies like Bitcoin, but its applications extend far beyond digital currencies. Blockchain enables a tamper-resistant and decentralized system of recording and verifying transactions, providing trust and transparency in various industries
Here are key features and concepts associated with blockchain:
Decentralization:
Blockchain operates on a peer-to-peer network, with no central authority or intermediary. Each participant in the network has access to a copy of the entire blockchain, creating a decentralized and distributed ledger.
Distributed Ledger:
The ledger, or record of transactions, is distributed across all participants in the network. This distribution ensures that every participant has the same information, reducing the risk of fraud or manipulation.
Immutable:
Once data is added to the blockchain, it is extremely difficult to alter or delete. Each block contains a cryptographic hash of the previous block, creating a chain of blocks. Changing the data in one block would require changing all subsequent blocks, making the blockchain tamper-resistant.
Consensus Mechanism:
To validate transactions and agree on the state of the ledger, blockchain networks use consensus mechanisms. Common mechanisms include Proof of Work (used by Bitcoin) and Proof of Stake (used by Ethereum 2.0), where participants must agree on the validity of transactions.
Cryptographic Security:
Cryptography is used to secure transactions and control access to the blockchain. Public and private keys are used to sign and verify transactions, ensuring the integrity and authenticity of the data.
Transparency:
All participants in the network have visibility into the entire transaction history. While the data is transparent, the identities of participants can remain pseudonymous.
Smart Contracts:
Smart contracts are self-executing contracts with the terms directly written into code. They automatically execute when predefined conditions are met. Smart contracts run on the blockchain, providing automation and programmability.
Use Cases Beyond Cryptocurrency:
Blockchain has diverse applications beyond cryptocurrencies. Industries such as finance, supply chain, healthcare, and real estate are exploring blockchain for its potential to enhance transparency, reduce fraud, and streamline processes.
Permissioned and Permissionless Blockchains:
Permissionless blockchains, like Bitcoin and Ethereum, allow anyone to participate in the network. Permissioned blockchains restrict access to designated participants, often used in enterprise applications.
Blockchain technology has the potential to transform various aspects of how information and value are exchanged, providing new solutions for efficiency, security, and trust in transactions.
A smart contract is a self-executing contract with the terms of the agreement directly written into code. It operates on a blockchain, a decentralized and distributed ledger technology. The code and the agreements contained within it exist across a network of computers, providing transparency, security, and immutability.
Here are key characteristics and components of smart contracts:
Self-Executing:
Smart contracts automatically execute and enforce the terms of an agreement when predefined conditions are met. This automation eliminates the need for intermediaries or third parties.
Code-Based:
Smart contracts are written in programming languages specifically designed for blockchain platforms. Solidity is a common language for smart contracts on the Ethereum blockchain, while other blockchains may have their own languages.
Decentralized:
Smart contracts operate on a decentralized blockchain network. This means there is no central authority overseeing the contract, reducing the risk of manipulation or interference.
Transparency:
The code and terms of a smart contract are visible to all participants on the blockchain. This transparency ensures that all parties have access to the same information, fostering trust and accountability.
Immutable:
Once deployed on the blockchain, smart contracts are typically immutable, meaning their code cannot be altered. This ensures that the terms of the contract remain unchanged and that historical data is preserved.
Cryptographic Security:
Smart contracts rely on cryptographic techniques for security. Digital signatures and cryptographic hashes are used to verify the authenticity and integrity of transactions.
Conditional Execution:
Smart contracts execute when predefined conditions (often encoded as if-then statements) are met. For example, in an insurance smart contract, the payment may be automatically triggered if a certain event, such as an accident, occurs.
Cost and Efficiency:
By automating processes and eliminating intermediaries, smart contracts can increase efficiency and reduce costs associated with traditional contract execution.
Widespread Applications:
Smart contracts have applications beyond simple financial transactions. They can be used for a variety of purposes, including supply chain management, voting systems, decentralized applications (DApps), and more.
The most well-known blockchain for deploying smart contracts is Ethereum, but other blockchain platforms, such as Binance Smart Chain, Polkadot, and Tezos, also support smart contract functionality. Each blockchain may have its own programming languages and unique features for developing smart contracts.
Everyone is different in how their recovery goes. It’s important to know this isn’t like any other back surgery where you’re back to yourself in 8-12 weeks. This is surgery on the nerves and it takes a long time for nerves to heal.
The total recovery time from this surgery is 1.5- 2.5 years. The only therapy you do is walking. The key to remember is that it’s not a marathon. Slow and steady wins the race here.
You will definitely need to be off for at least 12 weeks to allow your nerves time to heal and rest. The first 8 weeks you cannot bend, twist or lift anything heavier than a gallon of milk. After that, you have to slowly work your way into doing those things again. You still can’t pick up more than 25 lbs (I think) for a while.
Your nerves will “wake up” around 8-12 weeks and cause an increase in pain and symptoms. This is known as a “flare-up” and you will experience these off and on during your recovery as the nerves heal. This is normal and part of the recovery process.
The nerves “wake up” from being compressed for so long and have forgotten their job in the body, so they fire off in different ways and areas and cause an increase in pain and symptoms. This happens within the first 8-12 weeks and will happen anytime you overdo things. You could do something as simple as putting clothes in the dryer and it could cause a flare-up that puts you in bed for a few days to a week.
The main thing is to remember to take it as easy as possible for the first few months. You will probably have to get FMLA to cover the initial surgery recovery time. Most people then go back to work part-time if they can.
Building a Healthcare DAO (Decentralized Autonomous Organization) and associated tokens requires a team with specialized expertise in both healthcare and blockchain technology. Here are additional roles and responsibilities to consider for such a project:
Healthcare Industry Experts:
Expertise: Deep knowledge of the healthcare sector, including regulatory environments, patient privacy concerns (like HIPAA in the U.S.), and industry standards.
Responsibilities: Guide the project to ensure it meets healthcare industry requirements, patient needs, and ethical standards. Ensure compliance with healthcare regulations.
Data Privacy and Security Experts:
Expertise: Specialized in health data privacy, security laws, and regulations (e.g., GDPR, HIPAA).
Responsibilities: Implement and oversee data protection strategies, ensuring patient data is handled securely and in compliance with legal requirements.
Medical Professionals (Doctors, Nurses, Healthcare Administrators):
Expertise: Clinical knowledge and practical healthcare experience.
Responsibilities: Provide insights on patient care, healthcare workflows, and the practical application of the DAO in a clinical setting. Ensure that the project aligns with real-world healthcare delivery.
Pharmacists/Pharmaceutical Experts:
Expertise: Knowledge in pharmaceuticals, drug safety, and distribution.
Responsibilities: Advise on aspects related to medication management, supply chain integrity, and patient safety.
Health Informatics Specialists:
Expertise: Experience in health information systems, electronic health records (EHR), and health data analytics.
Responsibilities: Integrate blockchain solutions with existing health informatics systems, manage health data, and leverage analytics for improved healthcare outcomes.
Patient Advocacy Representatives:
Expertise: Understanding patient rights, patient engagement, and advocacy.
Responsibilities: Ensure the DAO addresses patient concerns, promotes patient-centered care, and involves patients in decision-making processes.
Insurance and Billing Specialists:
Expertise: Knowledge of healthcare insurance, billing practices, and reimbursement models.
Responsibilities: Advise on integrating blockchain solutions with insurance processes, potentially simplifying and streamlining billing and claims.
Ethical Compliance Officer:
Expertise: Familiarity with ethical considerations in healthcare and technology.
Responsibilities: Oversee the ethical aspects of the project, ensuring it aligns with healthcare ethics and patient welfare.
Biomedical Researchers:
Expertise: Experience in medical research, clinical trials, and data analysis.
Responsibilities: Use blockchain for secure data sharing in research, maintaining data integrity, and facilitating collaboration in research projects.
Telemedicine Specialists:
Expertise: Knowledge in telehealth technologies and regulations.
Responsibilities: Explore ways the DAO can support or enhance telemedicine services, focusing on accessibility and patient engagement.
Healthcare Policy Analysts:
Expertise: Understanding of healthcare policies, reforms, and global health trends.
Responsibilities: Analyze the impact of blockchain on healthcare policies and assist in navigating the policy landscape.
Remember, the success of a healthcare DAO depends on balancing technological innovation with the sensitive and regulated nature of the healthcare industry. Your team should not only be technically proficient but also deeply aware of the unique challenges and responsibilities in healthcare, emphasizing patient safety, data privacy, and regulatory compliance.
Building a solid team for a Web3, smart contract, NFT, and DAO (Decentralized Autonomous Organization) project involves assembling a group of individuals with diverse, complementary skills and a shared vision for leveraging blockchain technology. Here's a breakdown of the key roles and expertise needed:
Blockchain Developers:
Expertise: Proficient in blockchain protocols, smart contract development, and relevant programming languages like Solidity, Rust, or Vyper.
Responsibilities: Develop and deploy smart contracts, ensure security and efficiency of the code, and integrate blockchain functionality into the project.
Frontend and Backend Developers:
Expertise: Skilled in traditional web development languages (JavaScript, HTML, CSS) and frameworks (React, Node.js), as well as understanding blockchain interactions.
Responsibilities: Build and maintain the user interface and server-side logic, ensuring seamless integration with blockchain components.
UI/UX Designers:
Expertise: Strong in design principles, user experience optimization, and familiarity with Web3 design challenges.
Responsibilities: Design intuitive and appealing interfaces, focusing on user interaction with blockchain-based features.
NFT and Digital Asset Experts:
Expertise: Knowledgeable about NFT standards, digital art, and intellectual property rights.
Responsibilities: Oversee NFT creation, manage asset lifecycle, and ensure compliance with legal and ethical standards.
DAO Strategists:
Expertise: Understanding of decentralized governance models, tokenomics, and community engagement strategies.
Responsibilities: Structure the DAO, develop governance protocols, and engage with the community to ensure decentralized decision-making.
Project Managers:
Expertise: Strong organizational and leadership skills, familiarity with agile methodologies.
Responsibilities: Coordinate team efforts, manage timelines and budgets, and ensure project goals are met.
Legal and Compliance Experts:
Expertise: Knowledge in blockchain law, intellectual property, and regulatory compliance.
Responsibilities: Provide legal guidance, ensure compliance with laws and regulations, and manage risk.
Marketing and Community Managers:
Expertise: Skills in digital marketing, community building, and communication.
Responsibilities: Promote the project, engage with users and stakeholders, and build a strong community presence.
Cybersecurity Specialists:
Expertise: Knowledge in blockchain security, smart contract audits, and general cybersecurity.
Responsibilities: Ensure the security of smart contracts, protect against attacks, and maintain the integrity of the platform.
Financial Analysts/Advisors:
Expertise: Understanding of cryptocurrency markets, fundraising, and financial planning.
Responsibilities: Guide financial decisions, oversee token sales or fundraising efforts, and manage budget allocation.
Research and Development (R&D) Experts:tokens
Expertise: Strong in emerging technologies, innovation, and staying ahead of market trends.
Responsibilities: Explore new technologies, propose innovative solutions, and keep the project at the forefront of blockchain developments.
When assembling your team, focus on finding individuals who not only possess the necessary technical skills but also share a passion for decentralized technology and its potential to drive change. Collaboration, adaptability, and a willingness to learn are key, as the blockchain space is fast-evolving and requires constant updating of skills and knowledge.
Links:
DAO Info:
https://youtu.be/pyaIppMhuic?si=AXCGBkQVT_qKyyzh
https://www.youtube.com/watch?v=pA6CGuXEKtQ
Smart Contracts:
https://youtu.be/pA6CGuXEKtQ?si=OQQT-hjMQA_fgiDD
Insurance using smart contracts:
Michael Folkson, Founder of RiskBazaar, walks us through traditional insurance contracts and how their peer-to-peer marketplace is changing the future for risk contracts on the blockchain.
https://www.youtube.com/watch?v=wkItYloSTJQ
Testimonials:
https://www.youtube.com/watch?v=zgKNd3yDLI8
https://www.youtube.com/watch?v=WByv1KHUj8I
https://www.youtube.com/watch?v=UhGfpvIkFqQ
https://www.youtube.com/watch?v=IbZYXSQQvLw
https://www.youtube.com/watch?v=AS4hA6UuP34
https://www.youtube.com/watch?v=AS4hA6UuP34
Documents:
TEDUP whitepaper:
https://docs.google.com/document/d/1K1NuI3IvVOsnqsAJUxiDLRSpVjD6UCIFqPsJwrutq5o/edit?usp=sharing
Solidity Smart Contracts created for this project:
https://docs.google.com/document/d/1nAZDWhi1XVgchwvSo-2GJH-WZGSLhkz4bGdodP_an_c/edit?usp=sharing
Tokenomicks and three year estimated budget overview:
https://docs.google.com/document/d/12YUeSKleAndDltoAmQsuCcNO_jFj-Ugtz2q7N8dVXj4/edit?usp=sharing
Disclaimer: This Site is a Proposal, Not a Live Working Product
The information provided on this website is intended solely for the purpose of presenting a proposal and does not represent a live, operational product or service. The content herein is subject to change, and any representations made are based on conceptual ideas and plans. Visitors are advised to read this disclaimer carefully and understand the nature of the content provided.
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