Health/ Tarlov Cyst Disease

Neurosurgeon #1

October 21, 2015
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The day we learned about my condition, I remember going on Instagram and searching for “tarlov cyst disease”.  You know you have something rare when you end up with less than 130 hashtags!  As I scrolled through the small amount of pictures, I came across this meme and could not stop laughing.  No idea why, but it cracks me up EVERY single time I read it!

Rare Disease- Meme

Leave it up to me to end up with something like this!  Seems so ironic!!!

So, after the last visit with my primary care physician, my hopes were extremely low in finding a Kaiser neurosurgeon (or any in network doctor for that matter) who truly understands the pathology, complexity, effects, and debilitation that Tarlov Cyst Disease can have.  In all honesty, my PCP was still under the impression that all of my symptoms (localized lower back and tailbone pain, shooting pain in my hips/buttocks, headaches, urinary disfunction, dizziness, shooting & stabbing pains, weakness, numbness, sciatic pain, etc.) were still being caused by a muscle strain.  My husband and I couldn’t help but laugh when we she told us what she thought my problem was.  Literally, we laughed when we asked her what she thought my pain and symptoms were coming from.  She didn’t even mention the Tarlov Cyst MRI finding to us at my follow up ER visit.  We had to ask her about it and then she proceeded to tell us that Tarlov Cysts don’t really cause symptoms.

The days leading up to this first neurosurgeon appointment were filled with SO much anxiety.  Would this doctor even know what the condition is?  Would they dismiss my symptoms and send me on a wild goose chase with other doctors and specialists to attempt to treat everything separately?  My husband and I knew that no matter what came of the appointment, the first 5 minutes would set the tone for the care I would receive for my condition.  Either way, we already knew Kaiser would not perform surgery so were prepared for that confirmation.  Our eyes were wide open and we braced ourselves for the consult.

Dr. Rhoten, please prove us wrong…

After a few questions and going over the chain of events that lead me to the ER, he went over my MRI in detail.  He started at the top of my spine, worked his way down through my lumbar, and then asked us to look closer at my sacrum.  Dr Rhoten said “Do you see this white thing here?”  Before anyone said anything else, I blurted out “That’s a Tarlov Cyst”.  He confirmed what it was and proceeded to tell us that I actually have a cluster of 3 cysts running through my sacrum, the largest being roughly 1-1/4″.  He said that looking at the rest of my spine, he would have thought it was the back of a 15 year old though!  Yup, I already like this doctor 🙂  Thanks doc!

He went over the basics, brief history, the pathology of Tarlov Cysts, etc.  Then much to our surprise, Dr. Rhoten proceeded to tell us he was totally familiar with Dr. Tarlovs work, research, and findings.  This was amazing news for us because it showed us that Dr. Rhoten knew exactly what he was dealing with.  Although Tarlov Cyst Disease and treatment are extremely “controversial”, Dr. Rhoten made NO questions about my diagnoses and made no other judgements on my symptoms or where they stemmed from.  I felt 100% heard and understood.

Huge huge huge relief to us!

Alright, so 3 cysts instead of the 1 which means a larger collection of spinal fluid.  Aside from the pain and other symptoms I already have, my concern was that there was already significant erosion that had already started to take place.  Erosion in your spine could lead to fractures or even permanent damage which would obviously make my condition and symptoms worse, especially in the future.  Unfortunately, Dr. Rhoten confirmed that some erosion had already taken place.  He gave estimates on how much bone I had compared to what I should have.

Tears began to softly stream down my face and Dr. Rhoten kindly handed me a tissue.

Dr. Rhoten then proceeded to tell us that there was basically not much he could do, he was sorry that he “didn’t have better news”, and in his opinion, surgery was not recommended.  Again, fortunately we already knew and were prepared for all of that.  We went ahead and told him about Dr. Feigenbaum’s work, that he was the leader in Tarlov Cyst disease, has treated over 1,300 patients, has an extremely high success rate with his specific surgical technique, and that we would like to get his opinion on my condition.  Surprisingly, Dr. Rhoten was entirely open to us seeing him and even encouraged us to see him.  SHOCKED!  He said he would go over Dr. Feigenbaum’s report once we were done in Dallas next month and go from there!!!  When we asked about Kaiser covering the costs though, he had no idea how that process even works.  I’m guessing since he is fairly new to Kaiser (from Cedar Sinai I believe), we would need to contact member services for more info.

And so begins the battle with Kaiser… something we already anticipated though.  I emailed Dr. Rhoten the following day and told him that member services informed me that he would need to speak with the head of the Kaiser neurosurgery department about getting the out of network referral.  It was then suggested that I see a Kaiser spinal specialist in Los Angeles.  While I definitely want to get other opinions (the more information we have, the better), I also don’t want to be forced to see a ton of different doctors who will all basically tell me the same thing… “surgery is not recommended.”  We are already aware of their position and appreciate the opinion, BUT these doctors also are not familiar with Dr. Feigenbaum’s work and his success rate with HIS technique.  I think if more neurosurgeons researched Dr. Feigenbaums method, they might just change their minds regarding surgery and treatment.

Sigh… so our November trip to Dallas, travel expenses, and the office visit with Dr. Feigenbaum are still a go, but also still coming entirely out of our own pocket.  It’s a shame that we have paid THOUSANDS and THOUSANDS and THOUSANDS of dollars into our insurance and still can’t get the medical care we need for my specific condition.  Up until now, the entire family has been fairly healthy and only needed a few minor things throughout the ALL of these years.  We realize that Kaiser doesn’t recommend surgery, but that should still ultimately be the patients choice AND patients should have the opportunity to see out of network doctors in cases similar to mine where there little that can be done.  I’m still crossing my fingers that Dr. Rhoten advocates for me and since he knows he can’t help much, he will try to get me in with someone who might be able to.

Bottom line is we LOVED Dr. Rhoten and feel fortunate to have been paired with him specifically by the head of neurosurgery.  We appreciated his honesty, his knowledge, his bedside manner, his kindness,  his willingness to help, and the time he took to help ease my fears and concerns.  Very very grateful we found someone with Kaiser who can help me through this difficult time.  Dr. Rhoten has been great thus far with referrals, medications, and emails we have sent.  Truly a blessing!!!  Furthermore, Dr. Rhoten also wants to make sure my kidneys are functioning properly so wants me to see a neurourologist.  Absolutely fantastic that he is taking a proactive approach to my care!!!!  Kaiser… you did good getting your hands on this one!!!

For now, we wait a few more weeks until we see Dr. Feigenbaum.  We should know SO much more after that appointment.  Prognosis, the damage that’s already done to my spine, if I’m a candidate for surgery with him, etc.  Until then, life goes on.  Not the life I had 3 months ago of course, but life nonetheless!  We are all adjusting even though everyday is usually different from the previous and settling into somewhat of a “new norm”.  Slowly but surely and taking one day at a time!  Some days my pain, fears, and concerns are greater than others, but with the support of so many people around me… I know we will get through this!!!

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  • Reply
    November 6, 2015 at 7:47 pm

    So sorry to hear about your diagnosis. Just curious why you talk down on kaiser. That’s really sad to see that you don’t feel as if your actual insurance, Kaiser, will do anything for you… I happen to work there, and work next to dr.rhoten, and what your posting online is in appropriate, and looks bad on your part.. We serve a huge population of San Diego and I am proud to work there as I know we give wonderful care to our patients. You might want to think again before you continue to bash on Kaiser and the treatments they can’t give you, and the money they won’t spend for you to go get treatment elsewhere. You have Kaiser… Obviously, why we we pay for you to go somewhere else. Consider switching insurance if you don’t like the care you are receiving. Before this gets back to the doctor that you don’t like that supposedly knows all about your disease???

    • Reply
      November 7, 2015 at 3:32 am

      Hello Sarah. I’m not really sure where to start here. Not once have I ever said anything negative about Dr. Rhoten. Quite the contrary actually. We really really liked him and left the appointment happy knowing I had a doctor who was familiar with this rare condition. I had concerns seeing him AFTER the treatment I received from my primary care physician who disregarded the MRI finding completely. In regards to your comment/question “Obviously, why we pay for you to go somewhere else”. Well, the way I see it, if Kaiser doctors don’t recommend OR can’t perform the appropriate surgery needed and the patient would like to see someone who can help them, the insurance we have paid for for YEARS should cover at least a consult. Then BOTH doctors can determine an appropriate course of action. That seems pretty reasonable to me.

      Lastly, considering you are employed with Kaiser (perhaps even in the same neurosurgery department at Zion), it kind of disturbs and worries me that you would go out of your way to bash a patient like this. Saying my post is “inappropriate and looks bad on my part”? Last time I checked this was my personal blog, a public space, and I never even said anything negative about Dr. Rhoten. I’ve made it very clear how scared I am about my diagnoses, how much it has already effected my life and those around me, how anxious I feel about the future, and yet you make these judgements about me. Until your message here, I’ve been extremely happy with the care I have received with Kaiser for this new journey I am on. I have only received love, support, and concern from friends, family, and even complete strangers since I have made my diagnoses public. Your post is the first negative message I have received and knowing its from someone within Kaiser (my insurance) really disappoints me.

  • Reply
    November 8, 2015 at 4:36 am

    Clearly your comments about kaiser and what we can’t do were completely negative..while reading all your posts about your condition, it was also very evident that kaiser isnt an instance you would want to have if you were “seriously ill”, which is sad… We take care of people who sprain their ankle, to ones who are dying of cancer. This is your personal blog and you can say whatever you want but have some respect. We provide excellecnt care for each and every patient that walks through our doors

  • Reply
    Julie Evans
    November 30, 2015 at 1:40 am

    Kaiser doctors that treated Corina were not knowledgable about the latest treatments nor were they qualified to preform them. Corina had to educate the kaiser doctors about the latest medical research and treatments of here disease. Hence, the reason for the necessity of out of network care that should be covered by Kaiser.

    • Reply
      December 2, 2015 at 6:49 pm

      Thanks for the comment Julie! I appreciate it! Can you believe this is an employee with my insurance??? Still can’t get over it!

  • Reply
    December 7, 2015 at 8:53 am

    Hello Corina, I came across your blog while looking on pinterest at ab workouts, and then found your blog and started reading more. I had never heard of Tarlov’s cyst, and that made me curious! I can’t imagine how difficult this must be, but I am so impressed with your positive attitude, and the straightforward no bs way you are sharing your experience. I have read through a lot of your blog this morning and was also impressed with how you responded to the negativity of a Kaiser employee. As a person able to understand that people and business are and can be multifaceted – I took from what you wrote that Kaiser has been amazing for you in Dr. Rhoten and that they might not be able to serve you well in other ways. While Kaiser may be able to do many good things, they cannot fight all battles, and the Kaiser employee takes this very personally for some reason. The facts are the facts. And your reactions and feelings are just that, and moreover you relayed them without negativity and gave credit, acknowledgment and appreciation where due, expressed disappointment where due. I am concerned however, to see a Kaiser employee posting in that way on your personal blog – I realize it is not a HIPAA violation for her to do so, and I believe in free speech – but it is definitely a conflict of interest for her in that she is not representing the company well with what she wrote, it makes Kaiser look bad. But I think you are handling things just fine without my input. Just wanted to let you know that I admire you, support you and wish you the best and I’m going to follow your progress on your blog. You are inspirational!

  • Reply
    December 12, 2015 at 7:21 am

    Dear Corina,
    I am very sorry to hear of your recent health diagnosis of Tarlov’s cyst disease. Recently I was diagnosed with this awful disease.
    I live in England and was trying to find further information but could find hardly anything. So I went on Pinterest and that’s where I seen your post.
    There NO surgeons in the UK that perform this surgery! This I find astounding considering it was discovered in 1938!
    There is virtually no information on our NHS website, (normally if there is a medical condition out there it covers at least the facts), nothing!
    In fact the National Board in England that decides what medication, treatments, etc known as NICE, well they have literally no information either! I am blown away by all of this.

    However what blew me away even further were those mean, nasty comments made by that dreadful Sarah who apparently works for your health insurance!
    There was absolutely no reason for her to comment except to be an utter bitch. Shame on her. She is an utter disgrace to the company she works for and as a human being. A busybody with nothing better to do than trawl through blogs about topics that are irrelevant to her. The very fact she works for your consultant is awfully unprofessional. Put an official complaint in to your consultant/ dept dealing with you. Negativity is not on the agenda from anybody so block her posts as well. In fact print off the earlier comments and attach to your official complaint.

    Very best of luck with the next step of a frightfully long journey! It will be interesting to read how you get on.
    I notice you are so young and beautiful, to be diagnosed with such a debilitating disease.
    Good Luck and God Bless You.

    Kindest Regards

  • Reply
    Michelle Lear
    March 29, 2016 at 5:12 pm

    Thank you for sharing your story Corina. I was diagnosed in December 2015 and it’s been a lonely journey dealing with the medical profession. I hope to get some positive feedback from my meeting with Dr. F. You have truly motivated me to press on.

  • Reply
    Bruce Bebb
    September 18, 2016 at 12:44 am

    Hi Corina, Thanks for your balanced and thoughtful comments.
    Marda (spouse) is in he exact same boat. In Oct 2014 Dr. Jason Weinstein in Portland OR Kaiser performed his first Tarlov cyst obliteration and placed clips on the top and bottom of the cyst. Success!… for about 18 months. Aug 2016 MRI shows it’s back accompanied by the same painful symptoms. Dr W referred Marda to to Dr Feigenbaum in Dallas, TX (out of network), but was informed this week that Kaiser is trying to “find an experienced neurosurgeon within Kaiser”. We’ve been in contact with Dr. F in Dallas, but can’t move forward until Kaiser authorizes the “out of network” doctor and procedure.

    I would like to know what happened to you how you are feeling.
    Best regards. Bruce

    • Reply
      September 22, 2016 at 4:03 pm

      Hello Bruce, I’m so sorry to hear about your wife. This disease is absolutely brutal. I’m extremely shocked you found anyone at Kaiser to perform any procedure on these! Unfortunately there are no guarantees with surgery, even with neurosurgeons who are familiar with Tarlov cysts. If you guys are still considering another surgery, definitely see Dr F in Dallas. He is the pioneer for this disease and has perform over 2,000 surgeries at this point. I would love to know how your Kasier steps unfold. We were denied 3 times for an out of network referral and also denied by the state of california medical appeals. It’s ok though, I’ve changed my mind about surgery and no longer pursuing it at this time. I’ve been fortunate in getting a bit better and I’m managing my pain and flares up a bit better as well. Surgery is a huge risk and often times I see people in the same condition or worse even with Dr F. Im just not ready to take that risk right now! Please keep in touch though, I would love to know what Kaiser does for your wife!

  • Reply
    Nicolette Iveson
    January 3, 2019 at 11:02 pm

    Hi ive just been diagnosed & was wondering if you are still surgery free

    • Reply
      January 8, 2019 at 9:22 pm

      Hi Nicolette! I am absolutely surgery and med free!!!

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