tag:blogger.com,1999:blog-2723953808291244899.comments2024-01-05T02:54:16.032-05:00Tarlov Cyst Disease - Making it One Day at a TimeCyster Nataliehttp://www.blogger.com/profile/09145095967153785626noreply@blogger.comBlogger46125tag:blogger.com,1999:blog-2723953808291244899.post-8846241440306665332023-08-05T00:13:00.393-04:002023-08-05T00:13:00.393-04:00Hi anonymous. Google won’t allow me to sign into m...Hi anonymous. Google won’t allow me to sign into my own blogger account. Yes and yes! Keep reading! TC Symptom free since 2018! There are very few (like 10 - 15 maybe) who know how to do the surgery. It is miscroscopic and I believe it might include robotics. I’m not sure about those details and I should ask, but I know it is microscopic and requires specialized equipment and training. Dr. Feigenbaum was the first to use the current method with the best outcomes. Dr. Rudolph Schrott does as well with a variation. I believe he uses a titanium plate to cover the outer sacrum. There are other as well and some more practiced than others. What country do you live in? If I’m U.S., what part? (Natalie)Natalienoreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-4804223272769007872023-08-04T15:22:25.892-04:002023-08-04T15:22:25.892-04:00Hello, I was diagnosed with TCD last year. I had a...Hello, I was diagnosed with TCD last year. I had a SCS implanted to help with pain. At first it seemed to help but has now gotten to the point that it only helps about 40% of my pain. I have had several injections & nerve block, also daily take opioid pain medication. I am to the point I can’t work or go anywhere without someone taking me. Both my neurosurgeon & pain management Dr have advised against surgery, I am at a loss! I am desperately seeking a solution to regain my life! Can anyone tell me if advances have been made toward treatment & cure? Thank you!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-8141183281421324732023-07-13T14:35:26.077-04:002023-07-13T14:35:26.077-04:00Sorry, that was me, Natalie, responding.Sorry, that was me, Natalie, responding.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-77398676569021444602023-07-13T14:32:05.881-04:002023-07-13T14:32:05.881-04:00Hi, I had surgery in 2016. I have had no symptoms ...Hi, I had surgery in 2016. I have had no symptoms since 2018. I had terrible nerve pain in my legs. Terrible. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-26022076188543816242023-07-13T13:52:48.244-04:002023-07-13T13:52:48.244-04:00I have also same you tarlov cyst in my s2
How are ...I have also same you tarlov cyst in my s2<br />How are you now?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-14187800476233274102023-04-25T11:38:49.851-04:002023-04-25T11:38:49.851-04:00Hi Mamoud. I am so sorry to hear you are suffering...Hi Mamoud. I am so sorry to hear you are suffering with this disease. Very few Neurosurgeons believe they are symptomatic because they never read the updated literature Isador Tarlov published, which was that the cysts do contain nerves. It’s not something they see very often so it’s not something they tend to spend much time learning about. At present, there are only a few who can actually treat them successfully. Many people have to travel to see Dr. F in Cyprus or find one in a country close to them. My cysts are compressed now and have not returned. I no longer have the symptoms I had from my cysts thank goodness. If you do find someone willing to treat them, be very discriminating. Ask how many times they have treated them and what their success rate has been. Depending on how they treat them, it can take a long time (2 years.) the most commonly known treatment is aspiration and fibrin glue injection to seal the hole. But if that surgery goes wrong, the consequences are permanent. It is a high risk procedure. There are people who do not have the ability to travel across the world or their country to have the cysts microsurgically treated using the new method. However, I am familiar with someone who had the procedure successfully. Some people swear by the anti-inflammatory diet. Not sure if you have investigated that. You are certainly in my thoughts and I wish you the best of luck on your journey. Feel free to reach out to me anytime. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-83222604586367891332023-04-24T14:07:51.472-04:002023-04-24T14:07:51.472-04:00Hi How are you now?
I hope you are now without tar...Hi How are you now?<br />I hope you are now without tarlov cyst .<br />I have one on my S2 on Saudi no doctor believes ghat it makes symptoms <br />Mahmoudhttps://www.blogger.com/profile/00027275866802512083noreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-29760593593767156012022-09-10T16:06:17.144-04:002022-09-10T16:06:17.144-04:00Extremely happy for your freedom from TC! God Ble...Extremely happy for your freedom from TC! God Bless!!MaryLounoreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-78713681025868901632022-09-10T16:04:17.003-04:002022-09-10T16:04:17.003-04:00Hi Natalie,
I'm very proud of your accomplish...Hi Natalie, <br />I'm very proud of your accomplishments through the years dealing with TC. Great determination and powerful strength in God!! Your blog is full of helpful information!!<br />My 43 yr old daughter has been suffering from loss of feeling in her toes, feet, legs, fingertips... about to the chest area. It's been a bit over a year since these changes started. The DRs had no idea what could be causing this. This week they found a cyst on her sacrum... I'm praying they can address this quickly. Her numbness, twitching and pain are nearly unbearable for her. She also gets severe swelling in her feet and legs which has not been completely figured out. <br />She is not vaxxed but had covid in Dec 2021, she suffered through 2 months of brain fog, depression and much more. She suffered a massive heart attack March 3... thank the good Drs and God, they revived her after 30 minutes "God is Great"!! <br />Her life has changed greatly since then. I'm blessed that she is alive! Drs have yet to find answers for many other issues she has. Her heart attack happened after finding her lungs were full of blood clots. One within her heart passed while transporting her to a larger hospital in Minneapolis Mn. She currently has many other issues yet to be addressed. I'm praying they can get her some relief after finding the TC cyst. Maybe much more is involved from having the cyst untreated for so long! <br />If you still read your comments, I would greatly appreciate any details and information you could share with us. So happy to hear you are healthier and moving forward. Sending prayers for good health and blessings from God!! <br /> MaryLou Oppelt <br />A call would be great also 320-630-6301 We'd love to learn more!! MaryLounoreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-53804688933518759122021-03-09T23:59:55.054-05:002021-03-09T23:59:55.054-05:00Thanks! I really should get back in to it. I'm...Thanks! I really should get back in to it. I'm so happy someone gained something from it even this long after I posted it! It's like a little baby legacy. Awwww. Cyster Nataliehttps://www.blogger.com/profile/09145095967153785626noreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-8370713944772681502021-03-09T05:47:27.587-05:002021-03-09T05:47:27.587-05:00Excellent post. I want to thank you for this infor...Excellent post. I want to thank you for this informative read, I really appreciate sharing this great post. Keep up your work… <a href="https://techealthinfo.com/college-of-health-and-human-services-csulb/" rel="nofollow">college of health and human services csulb</a><br />healthcarehttps://www.blogger.com/profile/10645143056622080673noreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-25294950985345767562020-11-02T01:17:13.303-05:002020-11-02T01:17:13.303-05:00I think this is one of the most significant info f...I think this is one of the most significant info for me.<br /><a href="https://www.bridgemedsolutions.com/tissue/" rel="nofollow">Bovine Pericardium Tissue</a><br /><a href="https://www.bridgemedsolutions.com/contract-manufacturing-services/" rel="nofollow">TAVR & TAVI Contract Manufacturing</a>Bridgemed Solutions, Inc.https://www.blogger.com/profile/07646342939054503980noreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-62082695530607524322020-10-18T22:31:54.342-04:002020-10-18T22:31:54.342-04:00pericardium. I imagine you could share a lot of in...pericardium. I imagine you could share a lot of interesting stuff about its usages. :) I'd never heard of it before this. Thank you cow...for your generous sacrifice.Cyster Nataliehttps://www.blogger.com/profile/09145095967153785626noreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-28210181323563436752020-10-16T07:02:30.968-04:002020-10-16T07:02:30.968-04:00I found so many interesting stuff in your blog.
Bo...I found so many interesting stuff in your blog.<br /><a href="https://www.bridgemedsolutions.com/tissue/" rel="nofollow">Bovine Pericardium Tissue</a>Bridgemed Solutions, Inc.https://www.blogger.com/profile/07646342939054503980noreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-13744570828492447242020-06-11T22:13:59.003-04:002020-06-11T22:13:59.003-04:00If you have a way to get in touch with Reta Honey ...If you have a way to get in touch with Reta Honey Hiers at the foundation, she will know about reduced rates and arrangements. Have you already ruled out everything potentially causing your symptoms? Most of the time they don't cause any but for some unknown reason, they become symtomatic in some people. It's all guesses at this point. Trauma has been linked as an instigating event. Childbirth...and strangely... Many become symtomatic around 2 years after the last child, epidurals, falls onto your sacrum, car wrecks...I think there is possibly something autoimmune related as to why they become symtomatic. Autoimmune diseases can attack the outer layers of nerves, which is where the CSF gets trapped in Tarlov (Perineural) cysts. They're genetic and run in families. But not everyone in the family will have symptoms. Some do, some don't. What kind of symptoms do you have and what have you been told about potential sources?Cyster Nataliehttps://www.blogger.com/profile/09145095967153785626noreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-39564986780434225212020-06-11T16:05:31.292-04:002020-06-11T16:05:31.292-04:00I am 24 years old and I Discovery that I have tarl...I am 24 years old and I Discovery that I have tarlov cyst. I Live in Brazil, and I can't find a doctor that could help me. The operation is very expensive?Karenhttps://www.blogger.com/profile/14115800046068139904noreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-81959226685514796122020-03-02T12:29:54.909-05:002020-03-02T12:29:54.909-05:00I am so sorry you have thos disease. But happy tha...I am so sorry you have thos disease. But happy that you found something helpful here. Cyster Nataliehttps://www.blogger.com/profile/09145095967153785626noreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-63567908849597215522020-03-02T11:53:33.985-05:002020-03-02T11:53:33.985-05:00Thank you for your blog. I am just starting my jo...Thank you for your blog. I am just starting my journey with TC. - SusanAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-9631659288671871222020-02-06T15:47:49.059-05:002020-02-06T15:47:49.059-05:00Thank you Brittany. It's a bit outdated now th...Thank you Brittany. It's a bit outdated now though. Things have changed some since this was posted. Dr. F. now does surgeries at Dallas Medical City I believe. Don't quote me on that. And....apparently they are allowing patients to use and take home cold therapy machines! So not fair! LOL!Cyster Nataliehttps://www.blogger.com/profile/09145095967153785626noreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-30868686201175323242020-02-06T04:45:29.687-05:002020-02-06T04:45:29.687-05:00This is such a great resource that you are providi...This is such a great resource that you are providing and you give it away for free. I love seeing websites that understand the value of providing a quality resource for free. It is the old what goes around comes around routine. <a href="https://www.drhasanerdem.com/en/" rel="nofollow">Dr. HE</a>brittanymlemayhttps://www.blogger.com/profile/05828142970980753025noreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-76393010972281347202019-12-30T13:05:20.304-05:002019-12-30T13:05:20.304-05:00Absolutely! If you go to the web version on the ho...Absolutely! If you go to the web version on the home screen, on the right menu at the very bottom is a form that says “contact me.” It goes directly to my email so then we can email each other. Cyster Nataliehttps://www.blogger.com/profile/09145095967153785626noreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-2738454793153063622019-12-30T00:03:14.044-05:002019-12-30T00:03:14.044-05:00Not sure if my other message posted...would greatl...Not sure if my other message posted...would greatly appreciate getting in touch with you as I believe our Tarlov cases are similar. Thank youBW58https://www.blogger.com/profile/13089790044657099127noreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-76531507762386809422019-11-19T09:57:09.702-05:002019-11-19T09:57:09.702-05:00Natalie, thank you for the information! I’m so hap...Natalie, thank you for the information! I’m so happy for you and that you’re doing well! I would do the same and not look back after this journey. I have joined the groups and have already found them to be very informative. Thank you again! Sherrie Sherrie Carpenterhttps://www.blogger.com/profile/11239090700601871928noreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-82194074573358688212019-11-14T20:56:42.333-05:002019-11-14T20:56:42.333-05:00Thank you Sherri. I don't really even have a Y...Thank you Sherri. I don't really even have a YouTube channel dedicated to Tarlov Cyst Disease. I need to get back to posting updates. After I got better, I started getting busy and didn't look at the the blog anymore. Do you have Facebook? There are several Tarlov Cyst support groups with members in the thousands. You will find a LOT of supportive cysters who are in all stages of life. They also have collections of documents and files. Many resources for learning, smart people who've been through this and have researched it for years. It always helped by to vent to people who understand and know you aren't alone. Cyster Nataliehttps://www.blogger.com/profile/09145095967153785626noreply@blogger.comtag:blogger.com,1999:blog-2723953808291244899.post-31716235403084831062019-11-12T09:46:40.941-05:002019-11-12T09:46:40.941-05:00I’m so thankful for all your information! I’m look...I’m so thankful for all your information! I’m looking for all information that I cam find. Hopefully I can find you on YouTube. <br />Sherrie Carpenterhttps://www.blogger.com/profile/11239090700601871928noreply@blogger.com