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The sorry state of Tarlov cyst sufferers in the U.S.

Hospital del Valle, Mexicali

Hospital del Valle, Mexicali

I am making a great recovery from the operation done in Mexicali to eliminate my two Tarlov cysts.

I was so enthusiastic, that I decided to spread the word, and joined two forums – the first of which was inspire.com.

Most of the people in that forum seem to be in hopeless situations. Here are some of their comments:

John Hopkins Hospital in Baltimore has a 6 month to a year waiting list.

My surgery was Aug. 21, 2007 … the pain is lingering from the nerve damage, but it’s decreasing slowly.

I live in Australia and have an appointment with Dr Mark Sheridan in Liverpool [England] and wondered if anybody has been to see him or heard of him.”

I am in the same situation, I have it at S-4. It is very painful and I am almost disabled from it. You tell the doctor your symptoms and right away they say – oh it’s not from that, it’s something else and they don’t do anything about it.

My MRI showed bilateral Tarlov cysts … When I asked my surgeon he replied ‘everyone has them.’ … I have talked with many Drs. who never heard of them.

So far I’ve been getting nothing but a run around from the doctors.

I still strongly suggest Dr. Frank Fiegenbaum of Midwest Neurosurgery, Kansas City, MO for your surgery. The surgery bill was $82,000, hospital was $100,000, doctor bill was 50,000. I believe those numbers are close. Tammy told me what they were, however insurance won’t pay that much.

$232,000 supposedly paid for Dr. Feigenbaum to do the operation! Who can afford that? What insurance company will pay that amount?

I couldn’t believe what I was reading. Compared to my experience with my Tarlov cyst  operation in Mexicali, these comments seemed like they were coming from some other world!

I made a comment to inspire.com, and gave them my website, so the people could learn how easy it is to get a Tarlov operation – and a fraction of the U.S. cost.

One of the inspire.com moderators sent me an email informing me that my comment had been deleted because I gave my website name.

Huh? I guess the only website inspire.com is promoting is that of Dr. Feigenbaum.

You deal with Dr. Feigenbaum pretty much exclusively on remote basis – by phone and by mail. When Dr. Feigenbaum is ready, his website states, “You may plan to travel in to Kansas City the day before your scheduled office appointment for consultation. Surgery will already be scheduled and pre-arranged for the following day should you choose to proceed.

Looks like Dr. Feigenbaum sees you once just to get your “yes” or “no” on the operation – sounds a bit impersonal to me. One woman wrote, “Well, it’s been 5 full weeks since I sent my MRI to Dr. Fiegenbaum. He has been out of the office for about 2 of these weeks. I am trying to be patient.”  That’s crazy – I can walk in and see my Tarlov cyst doctor, whenever I want.

I also joined straight_talk_tarlovcysts.

The comments here were pretty much the same as inspire.com. But there was more emphasis on the problem of getting insurance companies to pay for the operation.

Most likely, the insurance companies are never going to pay. Here’s my suggestion: Since most folks in the U.S. pay about $1,000 a month for insurance, stop the insurance, and save the money for a year. You’ll have more than I paid for my operation, and can get the operation in Mexicali.

In this forum as in inspire.com, I felt like I was at a party where everyone was talking to someone else, and no one was talking to me.

I canceled my membership in both groups. The people’s ideas were just unreal.

Now, I understand what the folks in Washington mean when they say our health care is “broken.”

The doctors don’t know anything, the insurance companies don’t want to pay anything, and the government wants to force us to take insurance or be fined and jailed.

Thank God we live in Mexicali!

 

 

30 comments to The sorry state of Tarlov cyst sufferers in the U.S.

  • Helen:
    If you have a Tarlov cyst you have a very big problem that should be attended to as soon as possible. The doctors in America never diagnosed my Tarlov cyst for 15 very long years. All they did was give me cortisone shots which make be gain a ton of weight. In Mexicali, Dr. Carlos Maya sent me for an MRI. The MRI technician wrote in his report that I had a Tarlov cyst – something the MRI technicians in the U.S. missed completely.
    From your email, it looks like you live in Mississippi, which is a long way from Mexicali. I do not know what your resources are, but, if you can, you should either see Dr. Maya, or send him an MRI – then you will know for sure. Dr. Maya’s contact information is on our site at page .
    Please let me know if you need any additional help on this.
    God Bless,
    MaryAnn

  • I have a Tarlov cyst but but they say it’s not my problem .but I have back pain ,hip pain,leg pain in both legs have headaches and my neck hurts I can’t stand very long can’t walk much for it makes my back hurt I don’t know how big it is. I have numbness in left arm and leg. I’ve seen specialist but they say that’s not my problem .the Dr got me to resign my job. Thanks Helen

  • admin

    Claudine:
    Thank you for sharing with us. It will be a great help to others.
    God Bless,
    MaryAnn

  • Claudine

    Dear MaryAnn

    I wished I had had my surgery made by another doctor. Honestly, I wish I could go back to when I was only suffering from TarlovCysts. I developped pathologies that are not curable and I do suffer each second of my life, more and more. I am allergic to all painkillers, so you can imagine what my life looks like. It lifts my mind to read your blog and a few others, and makes me sad to read not correct information.
    God bless you and all people in pain.
    Claudine

  • Claudine:
    So wonderful to hear from you and thank you so much for your support. Neither you nor I have hidden agendas, but certainly others d0, including AIMIS (American Institute of Minimally Invasive Surgery). I have been so lucky to be where I am after my operation and wish all Tarlov sufferers to have great outcomes. Unless you have had this disease, you cannot imagine the pain. I hope all is well with you, Claudine.
    God Bless,
    MaryAnn

  • Claudine

    MaryAnn

    I am in touch with you for years, and I know what surgery you have been through. It is the same as mine in 2002, same as the one made by Dr Feigenbaum and all specialists in the world, except for a little part in Germany.

    You described honestly and entierely your surgery, there is nothing hidden. I read on so many forums, pages, groups, approximative information about TarlovCysts, surgery, post-op outcome, and people that do not dare to say their real outcomes or that are harassed to not speak about. Your website is honest, you tell your experience, and you have no agenda hidden.

    I wish the best outcome to all that go to surgeries. I have now an experience of 11 years and the real outcome of the thousand of patients that had surgery..not words of mouth. Have all an nice day…
    Claudine
    P.S. What is “incredible” is that AIMIS has the manager that came as a spy on Forums for patients on Facebook to get in touch with patients, find new customers, and this is really something that should be reported. If all goes so well, why the need to spy forums and groups to find new “clients”.

  • Nancy:
    Sorry to hear you are in pain. I understand as I was in pain for 12 years in the US, as my Tarlov condition was never diagnosed until I came to Mexicali. Dr. Maya doesn’t just drain the cyst. In addition to Dr. Maya, I had a neurosurgeon, two anesthetists, and two nurses in the operating room. The operation took several hours. I have written somewhat extensively in this blog about my operation, and whatever information I have is there.
    God Bless,
    MaryAnn

  • Nancy

    MaryAnn,
    I am not promoting Dr. Feigenbaum without knowing what his surgery entails, nor am I promoting him at all, I am searching for answers. I am in pain. And I need to figure out what to do. I really don’t understand your angst if what you are trying to do is help people. Doesn’t really make much sense. And I didn’t spell out Dr. Feigenbaum’s name, because everyone knows what I mean when I say Dr. F. as petty and underserving a response as your comment was.

    You answered my question. If that’s what Dr. Maya does is just drain the cyst, that’s the information I was looking for. Thank you for your time.

  • Nancy:
    I am sure that Dr. F. (why not name him?) is very caring and a great salesman. Thanks for the comment that I should NEVER put up a site like this promoting a procedure with a doctor unless I knew exactly what I was promoting. But isn’t that what you are doing for Dr. F? All doctors have the same basic treatment for Tarlov cysts – they drain them, as they cannot be removed.

    The difference is that in the US, they dope you up with addictive narcotics which makes you FEEL GOOD. In fact, you feel so good that you move around after the Tarlov surgery and generate painful and harmful scar tissue (often requiring a second operation).

    Instead of doping me up on narcotics, my Mexicali surgeon ordered me to stay in bed for one month. The usual narcotics that are prescribed in the US are Oxycontin and the like. They don’t even use such drugs here. In the US, there are doctors who prescribe Oxycontin, etc. to those who then re-sell it to addicts. Grind up Oxycontin, snort it, and you will have the same high as with cocaine (to which Oxycontin is chemically related).

    Sorry, I don’t need the benefit of your doubts. Go with the info you have and good luck with Dr. F.

    God Bless,
    Mary

  • Nancy

    MaryAnn,
    I would love to have more information as I am facing surgery with Dr. F. I found him to be very caring, knowledgeable and responsive. I have good insurance, will only have to pay the remainder of my out of pocket when I have the surgery and if I went to Mexicali, insurance would still pay. What I don’t understand is what the surgery entails. I would NEVER put up a site like this promoting a procedure with a doctor unless I knew exactly what I was promoting. But because I’m also wanting to weigh all my options, how do I find out more about his procedure for treating Tarlov cycts? As you know, there is no such thing as removing a Tarlov cyst. Many are much more serious than others. Perhaps yours was not as serious. I also kind of feel that you have a huge chip on your shoulder, so I’m not inclined to go plunging into your advice. But again, I want to give you the benefit of the doubt. Can you point me to more info?

  • Chuck: You are right about having a car in Mexicali. Also, since we are in the free zone, there are no complications as in other parts of Mexico. We drive here with our US plates – no problem. Very kind of you to offer to help.
    God Bless,
    MaryAnn

  • Chuck: You have taken a courageous step, which was the only thing to do. Take it very easy and don’t move much after the operation to prevent the formation of scar tissue. I lay in bed for four weeks and it really paid off. Best of luck to you.
    God Bless,
    MaryAnn

  • Chuck M

    I would also like to say finding a room here is fairly easy and cheap on craigs list. It’s hard to do any thing with out a car. If I can help any one My contact is blackmetal_13@yahoo.com
    Help is out there.
    -Cuck

  • Chuck M

    I lived in michigan. I’m low income and was diagnosed with a tarlov cyst and suffered for years. I read about Dr. F. and said what the heck. Moved to Mo. got on medicaid and made an appointment with no referral it took a couple months but much to my surprise I am scheduled for surgery this Month with Dr. F. ..I just showed up with My records in hand he looked at My MRI explained every thing to Me and said lets get it done so you can move on with your life. Couldn’t ask for a better out come. Except waiting so long has affected My marriage and My relationship with My children..Don’t wait like Me now that I will be having surgery I will be having 56to rebuild life as I know it…Hope this story helps someone in My situation some how.
    -Chuck

  • Janet K

    Lori,
    I’m so sorry to hear your pain. I can hear your screams by reading your post.
    I don’t have health insurance, and I suffered from 2Tarlov Cysts as well.
    I came across Maryann’s blog, read every post she had on her tarlov surgery progress. she saved my life!!!
    I contacted Maryann, and she got me going to see Dr Maya. I had my surgery, Dr Maya and his partner, a neurosurgeon, and it was a SUCCESS!…thanks to Maryann!
    If not for her, I would still be still in great pain. Now I am able to walk pain-free, and am on just Aleve, Lyrica and Soma!
    I wish you all the best Lori, it’s terrible to have this illness, at such a young age. I know as i am in my 40s. But, I’m glad you are getting taken care off.
    After your surgery, you just lie in bed and don’t do anything hon, and you’ll be just fine.
    the reason is the damn scar tissues that will form inside of u if u run around.
    keep us posted on yr progress!
    Janet
    San Diego

  • Lori: First off, I am very sorry to hear of your condition. I understand the pain and frustration you must be enduring.
    Somehow, just my mentioning of Dr. Feigenbaum brings all sorts of people out of the woodwork to attack what I said about him. All I had to say about Dr. F. concerned his availability and cost – nothing rude about the truth. In Mexicali, I can see my doctor any day I want – no appointment – it doesn’t work that way in Mexicali. I just go to his office and wait my turn – any day. It would not be proper for me to go into the cost of my Tarlov operation, here. Suffice it to say, we have no insurance, and the cost was a small fraction of what you would pay in the states. Also, the recovery is different for me – no Vicodin which masks the pain, and lets you move too much and damage yourself without knowing it. You say, “Once I am home you can do what makes you feel right.” I respectfully disagree – once at home you had better stay in bed for a month and avoid moving around. I am sure with your determination, you will succeed.
    God Bless,
    MaryAnn

  • Lori

    I just read this entire sheet and I am just blown away and the way you are so rude about dr f and the other dr. Look I have suffered with Tarlov Cyst Disease for almost ten years now and I JUST MET WITH Dr. Feigenbaum already once. No I don’t have the best insurance and there may be a problem but that is a road I will cross when I get to it. Right now, I know this is the only man in the entire country who would see me after ten years and now I can’t pee, I can’t have a bowel movement for more then ten days!I can’t make love to my boyfriend, I can’t sit, I can’t walk, I have no nerves in my entire right side of the body and I am constantly falling and breaking things or ending up in the hospital with an extended belly and severe cramps with awful pelvic pain and the most severe migraine I have ever had and NOTHING HELPS!!! NOT ONE TYPE OF PAIN KILLER HELPS THOSE MIGRAINES, unless mixed with a KNOCK YOU OUT PILL or Drip into your IV anyway. DR F will c me as many times as I want to schedule an appt with him. I saw him once flew home and just incase you don’t all realize there are programs out there for woman like us. Oh yea I didn’t tell you I am a 37 year old single mother of two. I have worked 3 jobs almost their whole lives and now I don’t work at all and I suffered the pain thru most of that atleast the first five to six years anyway. I am grateful that DR F will see me and will attempt to repair my Tarlov Cyst Disease as I have them Sacral, Thoracic and Cervical so I get it all ladies and gentleman and they all afect my life but dammit. If I have to pay this man $500,000 to fix my back then so be it I will find a damn way to fix it and just take what that other person said, “just stay in bed a little longer then he said” Dr F has you in the hospital for 3 days and then I will stay in the hospital for another 4 and go home. Once home you can do what makes you feel right its your body not theirs and I will take that advice thank you but as for Dr F.???? Give me a break, I am a single mom too ya know but at times like this in dangerous times we have to do what ever we have to make sure we are still here for our kids when it is all said and done….. Good Luck to you all and I do hope my procedureS!

  • Claudine

    Hello Janet

    Congratulations and thank you for sharing your experience…

    Sincerely
    Claudine
    TarlovEurope

  • Janet K

    Hi Maryann,
    I read your blog on Tarlov very carefully. Like you, I can’t afford health insurance. I knew that I was in great pain in my lower back, and my husband n I were given the roundaround here in the US.
    Out of desperation, we went to see Dr Maya, in the evening. From my MRI report, he told me I had 2 tarlove cysts!
    I had the surgery, soon after, we drove back to San Diego, with me lying straight down.
    You have the best blog! I love you, Thank You so much, as you and your blog have saved my life!
    Janet K

  • As to Tcs surgery, it is not better in france as having had surgery in 2002, before was disabled to 40%, now to 90%.

    I am dreaming of moving to Mexico too, as feed up with so many things.

    Take good care

    claudine

  • Claudine:
    First off, I am sorry for your Tarlov story. Secondly, unfortunately, you can’t tangle with health care in America. The heath care industry is now destroying Obama, and the chances of many Americans to have the type of free health care that is found in all civilized countries. Let the Americans have what they want and leave them to their fate. Now the American health care bill pending a final vote will fine and imprison Americans who do not sign up with the insurance companies. This is the greatest gift to insurance companies, ever. Maybe all those people who suffer after Dr. Feigenbaum operated on them deserve their fate. You are lucky to be in France, and I am lucky to be in Mexico.

  • Hello MaryAnn,

    I say that because all some of us are doing to to help others and make for all have a better knowledge, a better understanding, and a better cure,

    are rejected when what they propose is not in the USA. I am very sorry that people living in a country I consider and is a great country, can be so chauvinistic, even if what is done is for all people. I am not living in USA, I live in Europe. I know the USA very well as having family there. I consider that Tarlov disease is so bad that if a safer cure is found, chauvinism must disappear.

    I am sad because the fight we do in Europe to having this disease when bad results of surgery, to have it on the list for Disability…and it is in several countries including France. Nothing has been mad ein USA, depite the fact that it is existing an Association and a Foundation. Our european group have been trying several times to work hand in had with other continents: South America works with us, but The foundation refuses.

    The more we are Stronger we are is so true, and when it is about health, nobody can refuse hand in hand for chauvinistic reasons.

    I am sorry to vent, but really, having been having 3 good friends of mine (USA) that went to suicide because of such facts makes me angry. What somme little people, with no importance have been able to do in Europe, Powerful Association of foundation should be able to do the same, for all their members, as it is supposed to be their goal.

  • Thanks, Claudine (Goze-Weber). I assume, “Dr F” is Dr. Feigenbaum in Kansas – just a guess. I can understand the abuse you have suffered. My good intentions of informing folks in America of my successful Tarlov surgery, just brought heaps of criticism on me for not having my operation done in the USA. You say that for Tarlov surgery, “the only success must come from the USA.” I think the USA is the worst when it comes to health care. For me, my hope was Mexico, and it paid off – big time.
    God Bless,
    MaryAnn

  • Who promoted dr F and Dr K (that is the cause for as many health problems post op as dr F. : The Foundation.

    It was a great idea that to make a Foundation, but the result ….is that a single person commands the Foundation and speaks as if they were several.

    It was very close to be successful to ahve NS to meet one another: the meeting could not happened because people that had been acting for this to happen, was not all in USA, and the only success must come from the USA.

    If something is to be positive, it is to be for all tarlovians all over the world. We know what it is to suffer, we know of the liver destroyed because of medics, we have the same health system and we have to go each month to our doctor, to wait to have some medics that help or not.

    I have been trying to help since 2002..working each day for 4 hours to learn anatomy, neurology, Csf flow dynamic..and I go on to be libelled, slandered for I don’t speak the same, and not consider their favorite NS as good people. If they were, they would stop and learn to avoid to go on to hurt people, they would not leave people that have no more money on their own, when e new cyst grow because of the surgery. It is not of charity, it is not of helpin poor people, they are not “courageous” doctors…they are paid for the surgery and have not to pay their whole life for the consequences.

    I am not bitter, I am simply angry, refusing to read each day of people that are worse because of some told as “wonderful courageous NS”.

  • I’m not a doctor, so I don’t know the details of the operation.

    All I know is that before the operation I was in constant pain. After the 3 hour operation, I woke up feeling NO PAIN.

    After six weeks, I am like I was many years ago, before this all started – PAIN FREE and with NO NERVE DAMAGE.

    Oh yes – Dr. Maya said bed rest for 28 days. This is to prevent internal scar tissue from forming which can cause the pain to return.

    Probably the problem with Dr. Feigenbaum’s patients is that he tells them to stay for only 10 days in a hotel in Kansas City. That is not long enough, and may explain some of his results.

  • Debra

    Maryann:

    On the forums here in the US many of us have posted our op reports so that others can see exactly what the surgery was that we have undergone. There are many variables with TC’s. Different surgeon do differnt types of surgeries. Would you be willing to share yours with us?

  • Margaret:
    You wrote, “Don’t know Dr Khoo, but while on the subject I live in Australia and have an appointment with Dr Mark Sheridan in Liverpool.” Since you did not qualify this as being Liverpool AUSTRALIA, a small town out in the boondocks, anyone would assume you were referring to Liverpool in the UK. Only a rube, dongo in Australian, would fail to specify that you were not referring to Liverpool in the UK. Or maybe you didn’t know there was such a place. Get your facts straight, dearie.

    Why do you call me dangerous? Seems like you are the dangerous one, trying to give a lie to my Tarlov cyst operation.

    Continue to live in denial and support those who are taking you for a ride, and it will pull you down as the Tarlov cyst eats through your bones. You are not helping others, who need something better than the exorbitant prices Dr. Feigenbaum charges.

    I am 100% pain free after my Tarlov cyst surgery – which I could never have afforded in the U.S.

    Happy trails!

  • Margaret

    Hi Mary Anne

    I am glad you are better, I just wonder if you had Tarlov cysts in the first place as it is not that easy to recover from the surgery, and you quoted me as trying to see Mark Sheridan in Liverpool (England) darling he is Auistralia like me at least get the facts straight. Wish I could believe you but I can’t and think you are dangerous

  • Debra: Sorry, but no one is paying me anything to write this blog. For your information all the posts are written, not copied as you suggest.

    You sound more like the one writing the infomercial. You are the second person who has claimed that they paid only $5,000 for the operation in the US.

    You guys sound like the health care lobbyists in Washington that are shouting down the single-payer option. If anyone is getting paid here, it sure isn’t me.

    And stop making excuses for doctors that can’t make time for their patients – which is one of the big problems with American health care – lack of availability. When you go to the doctor in the US, he has only 15 minutes to see you. He uses this time to write referrals – more business for the doctors.

    Don’t criticize doctors in Mexico for making time to see their patients. Dr. Maya stays in his office until he has seen the last patient – sometimes long into the night.

    You sure don’t get that in America, where you need to wait weeks or months to see your doctor.

    Debra – don’t defend something which is not right. Defend something that is right – otherwise you are just another lobbyist – not for the people, but for the doctors and the insurance companies.
    God Bless,
    MaryAnn

  • Debra

    Just because you have been on some forums and copied some postings hardly makes you an authority on forums or doctors in the US. This sounds like an infomercial to me. How much is Mexico paying you for this blog? I have had surgery with a wonderful doctor in the US and the doctor himself was paid $5000.00 for performing the surgery. Yes a TC surgery. My guess is if you can walk in and see your doctor any time he’s not a top notch surgeon. Good doctors especially one’s performing surgery on rare diseases are few and far between and they are busy seeing many patients and are not available at a drop of the hat. Get Real.

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