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

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.

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.

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"

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

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.

Good Pain Management Doctors

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

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.

Learning to listen to your body limitations is key

If sitting hurts get up frequently nothing besides surgery helped mine

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

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.

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.

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.

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.

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

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

Въпреки, че е трудно, трябва даживеем пълноценно

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.

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

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.

Try to be happy, faithful, feel like a warrior