Living with Tarlov Cyst. How to live with Tarlov Cyst?

Can you be happy living with Tarlov Cyst? What do you have to do to be happy with Tarlov Cyst? Living with Tarlov Cyst can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Tarlov Cyst

Living with Tarlov Cyst

A Tarlov cyst, also known as a perineural cyst, is a fluid-filled sac that forms on the nerve roots at the base of the spine. Living with Tarlov cysts can be challenging, but with proper management and lifestyle adjustments, it is possible to lead a fulfilling life. Here are some important aspects to consider:

1. Seek Medical Guidance

It is crucial to consult with a healthcare professional who specializes in Tarlov cysts. They can provide accurate diagnosis, monitor the cyst's progression, and suggest appropriate treatment options. Regular check-ups and open communication with your doctor are essential.

2. Understand Your Symptoms

Tarlov cysts can cause a variety of symptoms, including pain, numbness, weakness, and bowel or bladder dysfunction. It is important to understand your specific symptoms and their triggers. Keeping a symptom diary can help identify patterns and guide your treatment plan.

3. Pain Management

Pain management is a key aspect of living with Tarlov cysts. Your doctor may recommend a combination of medications, physical therapy, and lifestyle modifications to alleviate pain. Engaging in activities that promote relaxation, such as yoga or meditation, may also be beneficial.

4. Lifestyle Adjustments

Adapting your lifestyle to accommodate your condition can greatly improve your quality of life. Consider making the following adjustments:

Exercise: Engage in low-impact exercises, such as swimming or walking, to maintain flexibility and strengthen supporting muscles.

Posture: Practice good posture and use ergonomic furniture to minimize strain on your spine.

Weight Management: Maintain a healthy weight to reduce stress on your spine and nerves.

Work Modifications: If your job involves prolonged sitting or heavy lifting, discuss possible modifications with your employer to minimize strain on your back.

5. Emotional Support

Living with Tarlov cysts can be emotionally challenging. Seek support from friends, family, or support groups who understand your condition. Sharing experiences and emotions can provide comfort and valuable insights. Consider joining online communities or local support groups to connect with others facing similar challenges.

6. Educate Yourself

Empower yourself by learning about Tarlov cysts. Understanding the condition, its potential complications, and available treatment options can help you make informed decisions and actively participate in your healthcare.

7. Manage Stress

Stress can exacerbate symptoms and impact overall well-being. Incorporate stress management techniques into your daily routine, such as deep breathing exercises, mindfulness, or engaging in hobbies you enjoy.

8. Communicate with Your Healthcare Team

Regularly communicate with your healthcare team about any changes in symptoms, concerns, or treatment effectiveness. They can provide guidance, adjust your treatment plan if necessary, and address any questions or uncertainties you may have.

Remember, every individual's experience with Tarlov cysts is unique. It is important to work closely with your healthcare team to develop a personalized management plan that suits your specific needs. With proper care and support, it is possible to live a fulfilling life while managing Tarlov cysts.

Diseasemaps

Depending on the severeness, patients should rest (on bed) during the day. Lying flat on bed stabalises the pressure in some case, with can relieve the pain.
Lot of patients cannot work any more and social life is also restricted for a lot of patients.

Posted Jul 23, 2021 by Stichting Overdruksyndroom NL

If there is no way for surgery, my only suggestion is to find something in life that makes you happy and can serve as a distraction.

Even after surgery, the cyst will still be there (albeit smaller and in a location not causing damage), so always monitor your body.

There will be good days and bad days, so just ride the good days out and enjoy life as much as you can, and don't fear the bad days as it will take away from the good ones. A positive mind set can go a long way in personal recovery.

Posted Feb 26, 2017 by Amie 1250

I find that it helps to keep a positive attitude, watch my diet, take supplements for inflammation and pain. It is also important to prevent constipation with a high fiber diet. Any additional pressure causes more pain, so limiting this is imperative.

Posted Apr 11, 2017 by Kelly 5450

I joined the facebook group "Tarlov Cyst Sunny Side Up" and also spent plenty of time focusing on keeping other people happy becaude if they are happy and around other people, the happiness spreads to other people. Keeping positive vibes with listening to relaxing music and finding the light humor in a lot of situations. I also have always followed this motto even before i had the tarlov cyst. "Keep your face to the sunshine, and you will not see the shadows"

Posted Aug 14, 2017 by James 950

Yes you can. I believe a supportive family and group of friends is beneficial. Which is what I have.

Posted Oct 29, 2017 by Karen 2500

Hi
I have just had an MRI and I see on the report try found a Tarlov cyst. After reading up on it, it explains the pain, but has no
W scared the living daylights out of me.

Posted Oct 30, 2017 by Linda 100

Good Pain Management Doctors

Posted Jan 20, 2018 by dhedge42 2500

Take everyday as it comes, pain depends on how much movement you do throughout the day

Posted Jun 18, 2018 by MissLeanneM 1700

Keep a diary of each symptom, with pictures of where on your body symptom is. Also, be aware of your daily activities that complicated symptoms, ie driving, using equipment at home or work. Corre t your diet or lifestyle, try not to resort to pain medicine. The longer you take it consistly the less effective it is. Do not let a doctor tell you they are not your problem.

Posted Jun 18, 2018 by Ze 2520

Learning to listen to your body limitations is key

Posted Jun 19, 2018 by Debbie Dronfield 2500

If sitting hurts get up frequently nothing besides surgery helped mine

Posted Jun 19, 2018 by Lynn 2500

find ways to take control yourself - don't just expect to get help from the medical field because it's just not there for most of us

Posted Jun 22, 2018 by Julie 1600

Acceptance!!! You have to accept that you have a disease, and though you didn't choose to have the disease, you still have the disease. You are not the first person in the world to have it, you won't be the last, and you're not the only one who is suffering from it right now. There is no cure for it, but if you're lucky enough to have found it, or them, before too much nerve damage was done, and you can get the proper treatment, then you should be able to live the rest of your life as normal as if you didn't have the disease. If you are like those of us who were not that lucky, you can do one of three things. You accept it, change it, or eliminate it. If you have a Tarlov cyst, then you can't just change it, because you already have it, and you can't eliminate it, because it's there, and you probably don't have magical powers, but that would be cool wouldn't it, so you just have to accept it. You should do as much research as possible about Tarlov cysts, join support groups, and learn to adapt to your new life. There are many ways to address the pain, and there are other lifestyle changes that you may have to make, but you can learn to do the things that you need to do, and over time you will learn better, and easier ways to do those things, but it all comes down to one thing. Do you want to live in misery, or do you want to adapt, and overcome the change that you have had happen in your life, and make the decision to be happy with the life that you have.

Posted Jan 25, 2019 by Roy DeWyatt Smith 700

Accepting that you have this disease and learning to adjust to your new normal is a must. Find humor in the oddities of the symptoms. You will need faith. Since these cysts can never be removed accept that there is no cure, just finding what works for you. You can either choose to be depressed over it or you can learn to be a stronger more compassionate person.

Posted Dec 9, 2019 by Ze 1500

Very hard to live with this chronic pain. Find online support groups, pain relief, disability benefits if possible, compassionate friends and a healthy diet none of which will cure Tarlov Cyst Disease but will only help take the edge off.

Posted Dec 9, 2019 by Jess Carhart 2500

So much depends where you are on this journey with TCs, and how severe and 24/7 and disabling your pain is. Also, how long you have lived with the progressive nature that comes with it which can take its toll on the sufferer in many ways. It's constant deep pain can severely limited your activities, and if you find it is all you can think about, it can consume a the sufferer, and rob them of some other things like memory and concentration; which in turn creates further frustrations. Medications can only do so much to help with masking.

My sincere prayers to everyone here who is suffering. I pray that a cure and more widespread viable treatment options are available to us sooner rather than later so we don't have to travel long distances for hope of meaningful permanent help out of the pain.

Posted Oct 8, 2020 by Linda 100

Avoid things that aggravated the issue.
Rest when you need To

Posted Jul 22, 2021 by Michelle Tamplin 2500

Keep moving, stay positive and speak to the specialist about a plan of care

Posted Jul 22, 2021 by [email protected] 700

Въпреки, че е трудно, трябва даживеем пълноценно

Posted Jul 23, 2021 by Моника 800

The best way is to read about this condition, to understand what it is about. Patients have to educate themselves because still a lot of fysicians disregard this disease and the symptoms/pain it can cause. So education of fysicians should be better in future. Therefore patients and patient representatives/foundations are working hard to get this disease on the world wide map.

Posted Jul 25, 2021 by SOSNL 2500

Zo veel mogelijk liggend de dag doorbrengen, vrijwilligerswerk zoeken waarmee je je eigenwaarde behoudt en nog iets kan bijdragen aan de maatschappij.

Posted Jul 26, 2021 by Founder SOSNL 2500

You will need a good support system and a knowledgeable doctor who is onboard with TCD. You will most likely need medications for pain, inflammation, muscle relaxers etc.

Posted Jul 26, 2021 by KetoGma 2500

Try to be happy, faithful, feel like a warrior

Posted Oct 25, 2022 by Tania 2500

Translated from spanish Improve translation

Assume the limitations and accept your new body. Learn to live with the pain and the pills.

Posted Mar 24, 2017 by Simona 1060

Translated from french Improve translation

Yes, you can be happy even with Tarlov cysts. The pain and the disease and open up other perspectives, introspection and also the awareness of the power of his mind . Finally, an entourage of caring, loving and motivating, you can be happy, provided you have already self-accepted disease.

Posted Sep 30, 2017 by 1000