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Which advice would you give to someone who has just been diagnosed with Tarlov Cyst?
See some advice from people with experience in Tarlov Cyst to people who have just been diagnosed with Tarlov Cyst
To read about this disease. There are a lot of scientific articles, to understand this disease can help patients in an acceptance. There are also a lot of support groups, wich is nice, because lot of question and advices are given by patients with the same condition.
Posted Jul 23, 2021 by Stichting Overdruksyndroom NL
Don't take the word of all doctors as gospel. This disease is such that many doctors don't know how to treat it but will act as if they do. Search for your own answers as soon as you know what is wrong, and find a supportive doctor in the meantime.
By best advice to those newly diagnosed is this: don't wait, and don't be afraid. When you know what it is, find a doctor and push to get answers. For my the leading physician in the field took too long, so I found another. When I was told surgery was an option, I practically threw myself on the table. I had seen and heard enough from other patients that fear of surgery had made them wait too long, and now recovery was much harder.
Another point is that the symptoms tend to flare and go. When on the low end you, you will think it's fine and to just let it go. Each flare can get worse, and the cysts can even cause bone erosion even if you don't always feel it. Dont stop until the symptoms are unbearable, but be proactive for yourself.
Finally, be brave and surround yourself with friends and family to help you float through the chaos.
By best advice to those newly diagnosed is this: don't wait, and don't be afraid. When you know what it is, find a doctor and push to get answers. For my the leading physician in the field took too long, so I found another. When I was told surgery was an option, I practically threw myself on the table. I had seen and heard enough from other patients that fear of surgery had made them wait too long, and now recovery was much harder.
Another point is that the symptoms tend to flare and go. When on the low end you, you will think it's fine and to just let it go. Each flare can get worse, and the cysts can even cause bone erosion even if you don't always feel it. Dont stop until the symptoms are unbearable, but be proactive for yourself.
Finally, be brave and surround yourself with friends and family to help you float through the chaos.
Posted Feb 26, 2017 by Amie 1250
I have had my diagnosis for several years now, and I know it is extremely tempting to want to jump right into surgery, but after all these years I am extremely glad I did not jump into it. I have seen several people who are much worse off after surgery, getting new cysts, or developing arachnoiditis, and the recovery time alone can be two years. Learn as much as you can about it and look at all of the options, talk to people like me who have managed without surgery and limited pain medication. It is possible to live like this, don't lose hope.
Posted Apr 11, 2017 by Kelly 5450
Definitely do the research for what kind of medications might work for you. I am by no means a pill pusher, but lyrica has managed to help my back severely with the pain. By the end of the day i may still feel worn down but i can sleep more easily because i know i have gotten a decent amount of work done and i dont end up on the floor buckled from pain. I can also manage to sleep through the night with only changing positions 3-4x a night where as no lyrica and i can barely even get to sleep and end up waking up literally 8 or more times a night. Lyrica is also very expensive without a prescription and wprks with many people in different ways, so it does have its down falls. Best thing is to always push yourself and keep track of how you are doing, so if you notice either a significant increase or decrease in your activity, at least you can notify your primary care provider and try to work out solutions. Remember that doctors may not have much or any experience with this disease but if you work with them and document everything you are going through,they will be able to help you help them get a better understanding and better outcome for your visits and health
Posted Aug 14, 2017 by James 950
Don’t give up. See a specialist like Dr. Feigenbaum.
Posted Oct 29, 2017 by Karen 2500
Find a good GP Doctor. Needs to be willing to refer to experienced Pain Specialist
Posted Jan 20, 2018 by dhedge42 2500
Do your research, everyone is different but chatting to people can help & you have options
Posted Jun 18, 2018 by MissLeanneM 1700
Step back, breathe, research, and find a support group. See only doctor's that understand them fully. Do not waste you emotions on any doctor that tells you it is in your head. When trying to find a drug that might work, only get less than 7 days worth, you can waste a ton of money on things you throw away. Read all possible side effects on line before fill in your script.
I would have attempted the clean eating lifestyle change, or a more paleo diet first. Food triggers inflammation which triggers pain. I would have had my whole spine MRI'd to look for other issues with nerves, all rare of course.
I would have attempted the clean eating lifestyle change, or a more paleo diet first. Food triggers inflammation which triggers pain. I would have had my whole spine MRI'd to look for other issues with nerves, all rare of course.
Posted Jun 18, 2018 by Ze 2520
Research your condition thoroughly and listen to your own body pains
Posted Jun 19, 2018 by Debbie Dronfield 2500
Seek a TC doctor as soon as you can to seeif it is symptomatic
Posted Jun 19, 2018 by Lynn 2500
read the book by Dr Terry Wahls and begin to look within to reduce symptoms
Posted Jun 22, 2018 by Julie 1600
Do as much research as you can. This is your body and it is up to you to become an “expert” on your condition. Finding a doctor or pain management that is supportive is very important. I have been really lucky with my medical care. I bring all of the paperwork I have on Tarlov Cyst to my doctors and leave them copies of it. I ask them to do their research before making their diagnosis.
Posted Nov 30, 2018 by Connie 1740
1. Use doctor Google. 2 find a support group, 3. Stay away from shots in your spine, therapy that adjust the spine, and read all information of medicines the doctor's will throw at you. 4 stand up for yourself. 5 allow only a doctor that specializes in the Tarlovs touch you. You have maybe 5 total to choose from. 6. Learn how opioid and other drugs can trick your system into thinking you are in pain. 7. Start a gluten free lifestyle.
Posted Dec 9, 2019 by Ze 1500
Research and connect here:
https://www.tarlovcystfoundation.org/
https://rarediseases.org/rare-diseases/tarlov-cysts/
https://www.tarlovcystfoundation.org/
https://rarediseases.org/rare-diseases/tarlov-cysts/
Posted Dec 9, 2019 by Jess Carhart 2500
To be referred to the proper Doctor/Doctors who have the knowledge to treat this rare disease. My advice kept me going through a revolving door, costly out of pocket expense, time not well managed and it is ONLY I who advocated for myself in finding the right Doctor.
Posted Dec 15, 2019 by Pam 1700
Please be seen my a neurosurgeon that knows about TCS
Mr Casey or Mr Chopra in UK
Mr Casey or Mr Chopra in UK
Posted Jul 22, 2021 by Michelle Tamplin 2500
Търпение, сила и разум
Posted Jul 23, 2021 by Моника 800
As said before, patients have to educate themselves and read scientific studies. But also it is advisable to join suppert groups and/or foundations who support symptomatic Tarlov cysts patients.
Posted Jul 25, 2021 by SOSNL 2500
Lees je goed in, praat er over met je omgeving, leg het je omgeving uit en probeer te accepteren dat je leven er anders uit gaat zien.
Posted Jul 26, 2021 by Founder SOSNL 2500
Join a Tarlov Cyst Facebook group. You will get more education, advice and support from these groups than from most doctors.
Posted Jul 26, 2021 by KetoGma 2500
Keep calm and search for doctors how really understand o out the condition
Posted Oct 25, 2022 by Tania 2500
Translated from spanish
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I would like that the doctors will be informed more about these cysts and the symptoms. In general say they don't give symptoms.
Posted Mar 24, 2017 by Simona 1060
Translated from french
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First of all check with people diagnosed with, you will probably get more response from your doctor. Be followed by a centre anti pain, as well as by a psychologist for the acceptance of the disease and to evacuate a maximum of frustrations. Finally, keep hope , accept it is not to be resigned. Learn to appreciate every little moment of happiness daily.
