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A New Chapter In My Journey: The Diagnosis

Roughly 5-6 weeks ago I began experiencing some lower back pain.  Initially, the pain was bearable and it wasn’t disrupting any of my daily activity.  I figured I must have tweaked something or perhaps pulled a muscle during one of my lifts.  ‘Standard’ protocol calls for ice, ibuprofen, and rest. I took a minor step back from DUP to be safe, did what I could, but tried my hardest not to push things too much.  When you are around so many people with herniated bulging disks and constant back problems, you can’t help but be slightly more cautious than usual.

After the second week in the same condition, I noticed the pain getting worse .  At the time, mornings were never too bad, but by the afternoon I found myself laying on the couch with a constant pain in my lower back.  Every now and then, the pain would radiate into my right hip, upper glutes, and down my leg, sometimes all the way through my calf.  Around the same time, I began to notice that my equilibrium felt a little bit “off”.  Whether I was sitting or standing, the room seemed to spin a little bit.  Nothing major at the time, but enough for me to notice.  I had just gotten through a long caffeine and supplement “detox” and had barely introduced those back into my routine/diet.  I figured that the odd dizziness was coming as a result of too much, too soon with caffeine.  I just felt ‘off’.  I also thought perhaps I wasn’t eating enough so made sure in the following days to increase my food.  Laying off caffeine again for a couple of days, eating more, and taking it even easier with training didn’t seem to make the symptoms any better.  I began to grow more and more worried that I had a did in fact have serious back injury and at that time, my biggest fear was “Oh my God.  When will I ever be able to lift again?”  It seemed like every day the pain grew more and more intense.

After a few days of nearly constant pain, I decided to go into Urgent Care to get checked out.  At the very least, I could get some pain medication.  I was seen, treated for a possible pinched nerve, sciatica, and/or muscle strain (she honestly had no idea), and sent home with a prescription for percocet and anti inflammatory meds.  That week, I took my meds, did VERY light isolated lifting (biceps, triceps, some shoulder work, etc.), and tried to at least walk for 20-30 minutes each day.  5 days passed and the pain continued to grow, as did my concern.  I had a new burning sensation that ran across the top of my hips/buttocks that was nearly constant, especially when I was sitting down.  I booked an appointment with my primary care physician in hopes she would request an MRI.  I was absolutely positive I had herniated disks and felt like I at least needed to know for sure.

After being examined, she agreed with me, but sent me home with more pain meds, prednisone, a referral for physical therapy, and said if PT and meds did not work to contact her for a referral to a back specialist who would then probably request the MRI.  I was told that regardless of whether or not I have herniated disks, pinched nerves, or anything along those lines that the ‘treatment’ would be the same.  I wasn’t completely satisfied, but reluctantly went along with her “treatment” plan.  HMO’s at their finest.  Let’s throw medicine at you and hope it works.

By this time, I was in constant agonizing pain.  Sitting, standing, laying down… no position offered any relief for more than 5-10 minutes at a time.  It was now 24 hour pain.  The newly prescribed morphine was doing very little to help manage the either.  It took some of the ‘edge’ off, but the ache in my lower back, shooting pain into my hip/leg, burning feeling, and light headed/dizzy feeling were getting to the point where I could barely think or see straight.  I fought back the tears when my daughter was around and hid most of them from my husband.  I remember forcing myself to go on short 5-10 minute walks outside with my dog simply because I needed to cry.  I needed to be outside to breath, deal with the possibility of an injured back, and be left alone in my pain.  I was angry that I wasn’t able to train/lift, I was frustrated because my body wasn’t able to do anything I needed it to, I was sad that I began missing out on once simple everyday ‘activities’ like my daughters volleyball practices, and I felt horrible that my husband was working 40+ hours a week and then coming home to cook, clean, do school drop off/pick up, run errands and take care of me.

September 25, 2015

This is the day that my life would be forever changed…

After spending most of the morning on the couch laying down, I had gotten up to grab myself something to eat.  I prepared my salad as usual, added my dressing, and while I was tossing it all together I felt like I had to go to the bathroom.  I was SO hungry and thought, “OK I just need a bite, then I’ll go!”  By the time I even realized it had happened, it happened.  Other moms know the feeling after having children and you are either jumping, have big sneeze, or are laughing very hard… sometimes we just get a little “leaky” if you know what I mean. However, I certainly wasn’t jumping and my salad wasn’t making me laugh uncontrollably.  To be sure, I went to the bathroom and sure enough I needed to change my undergarments.  That’s all I’m going to say about that issue.  This is something one may expect when they are elderly, but not something a very active & otherwise healthy 37 year old would even think about dealing with.  It’s embarrassing enough for me to share and you get the point.  Moving on…

It was at that very moment, I lost it. Luckily I was alone, but I cried so hard that everything in my body hurt.  Pain was heightened by at least 500%.  I was more scared than ever, embarrassed, and I felt completely alone.  I knew something was very very wrong and even if it was herniated disks or spinal issues, I needed to know for sure.  I sent a message to my doctor about my new urinary “symptom” and was told to go to the emergency room immediately.  I packed a bag (because I knew I would be there for a minimum of 5 hours) and as soon as my husband came home, I asked him to drop me off at the ER while he took my daughter to volleyball.  There was no need for all of us to wait and in all honesty, I didn’t want them to be there.

I needed time to process.  I needed time to gather my thoughts.  Again, I knew something was wrong with me.  However, even at this time one of my top 3 concerns was “Great, when will I ever be able to workout again?”  My ONLY hope for this ER visit was to have an MRI done. I knew 100% with all my heart and soul that I was not walking out of that hospital without that scan.  Something in me told me regardless of what it said or didn’t say, I needed an MRI.  I can’t express the overwhelming gut feeling I had that something was very WRONG with my body.  It’s almost as if I knew without a doubt, everything in my world would be changed.

Here I am post MRI scan waiting for a doc!  Still scared, but smiling through the pain!!!  That’s how I roll.. sometimes!

Me- Hospital

Thankfully I didn’t have to fight too hard to have the scan done.  The first doc that saw me in triage took one look at me and immediately ordered the MRI.  I could barely walk, I had tears running down my face, he did a couple of minor stability tests to check my legs, and that was that.  After a total of 6 hours, another doctor finally came in to see me to discuss the findings.

In addition to some minor arthritis around L4 L5 and hydronephrosis in my left kidney, we also found this…

A cyst located posterior to S2.

corinanielsen-tarlov

At the time, I wasn’t sure how to feel about having a cyst on my spine.  I mean, just hearing you have a “cyst” can’t be a good thing.  I guess I was a little numb and hadn’t began to process everything that just happened.  The ER doc was useless in terms of knowing anything about this condition.  I left the hospital with tranquilizers and told to follow up with my primary care doctor.

My husband and daughter picked me up, we went home, I ate something, put our daughter to bed, and felt absolutely confused.  If I didn’t herniate anything, why was I in so much pain and what would explain all of the other symptoms I had.  I didn’t know what to think or how to feel, but something kept telling me I needed to know more about that mass that was found. Can this be fixed?  Did it need to be fixed?  What’s the treatment protocol for this?  Will I be in pain for the rest of my life?  Am I going to die?  I certainly had no idea of the long journey ahead of me.  That night as my research began, I realized nothing would ever be the same.  My simple, boring, amazing life would forever be changed.

What is a Tarlov Cyst?

Obviously the first thing you do when you want to know what something is?  Google.  As soon as I put in “Tarlov Cyst” into the search box, the first link is to NORD (national organization for rare disorders) as well as the ORDR (office of rare diseases).  My anxiety grew from an already 100 to 1000 real quick from the words rare “disorder” and “disease”.  I couldn’t help but cry and I still barely knew anything about anything at that point.

“Tarlov cysts are fluid-filled sacs that most often affect nerve roots in the sacrum, the group of bones at the base of the spine. These cysts can compress nerve roots, causing lower back pain, sciatica (shock-like or burning pain in the lower back, buttocks, and down one leg to below the knee), urinary incontinence, headaches, sexual dysfunction, constipation, and some loss of feeling or control of movement in the leg and/or foot. Pressure on the nerves next to the cysts can also cause pain and deterioration of the surrounding bone.”- ORDR

Basically, I have fluid building/built up at nerve/s located at the bottom of my spine (sacrum).  Due to the swelling and location of the cysts, it compresses and impacts the surrounding nerves.  This area contains the nerves for your legs, feet, ankles, toes, hip/hip bones, buttocks, rectum, sex organs, and genitalia.  In the majority of TC cases, problems/issues are usually asymptomatic.  Individuals can have smaller cysts and are not affected greatly.  95% of those who show Tarlov Cysts wouldn’t even know it.  Perhaps they may only feel some slight pressure on their tailbone every now and then, mild lower back issues, headaches, sciatica, etc. that would easily be overlooked and chalked up to a great number of other minor issues that don’t effect your life.  Unfortunately, I now have SYMPTOMATIC Tarlov Cyst/s which seemed to be progressively getting worse.

Google helped explain what the disease was, but didn’t offer too much else.  If you do a search for yourself, you will see there is SO little information about this disease.  At this point I knew it was a very rare condition and very few people will ever be truly affected by the symptoms.  Unfortunately, that’s not the camp I was in because looking at the list on the Tarlov Cyst Foundation site, I had quite a few symptoms and most were already so bad they were was disrupting my ENTIRE life.

  • Pain in lower back (particularly below the waist) and in buttocks, legs, and feet
  • Pain in the chest, upper back, neck, arms and hands (**this was a new symptom that started this week**)
  • Weakness and/or cramping in legs and feet / arms and hands
  • Paresthesias (abnormal sensations) in legs and feet or arms and hands, dependent on cyst locations
  • Pain sitting or standing for even short periods of time
  • Pain when sneezing or coughing
  • Inability to empty the bladder or in extreme cases to urinate at all (**explains the swelling shown in the MRI in my left kidney**)
  • Bowel or bladder changes, including incontinence
  • Swelling over the sacral (or cervical, thoracic, or lumbar) area of the spine
  • Soreness, a feeling of pressure and tenderness over the sacrum and coccyx (tailbone), extending across the hip and into the thigh with cysts in the sacrum. Same feelings in upper sections of the spine dependent on cyst locations
  • Headaches (due to the changes in the CSF pressure) and sometimes accompanied by blurred vision, double vision, pressure behind the eyes and optic nerve pressure causing papilledema (optic nerve swelling)
  • Other sensory system symptoms: Tinnitus/Ear noises (ringing, buzzing, snapping,popping, cricket sounds,etc.)
  • Dizziness and feeling of loss of balance or equilibrium, especially with change of position (** pain in various areas of my body and THIS are the WORST for me **)
  • The feeling of sitting on a rock
  • Pulling and burning sensation in coccyx (tailbone) area, especially when bending
  • Sciatica
  • Vaginal, rectal, pelvic and/or abdominal pain
  • Restless leg Syndrome
  • PGAD (Persistent Genital Arousal Disorder)
  • Sexual dysfunction and painful intercourse

As you can see, Tarlov Cyst symptoms can mirror MANY other conditions so it’s EXTREMELY difficult to diagnose without the help of MRI imaging.  Even with the MRI, most doctors know next to nothing about it.  If anyone had these issues (minus the bladder symptoms), ANY doctor would immediately think strained muscle, pinched nerve, stress, over training, not eating enough, and a whole other long list of minor healthy concerns.  As much as I want to blame doctors for not knowing, it’s not fair to and I can’t.  This was a very short chapter in their medical school books and such a small amount of people who have real symptomatic problems.  It’s just not something a doctor sees let alone treats in their lifetime OR they overlook the symptoms patients come in with.

Next, I went to YouTube… one of the first things to come up in the search? This video about a young girl’s journey with Tarlov Cyst.  This was the one video that put me over the edge.  I went from a regular cry to being hysterical in a matter of 30 seconds. You can click the video to view on YouTube.

YouTube- Tarlov Cyst

I’m NOWHERE close to where she was before surgery AND most other TC’s sufferers wot get here either.  However, just seeing this as I began my research sent me totally over the edge!  I’m SO happy to see she was able to regain some of her life back!!!

OK, so now that I have a somewhat better idea of what me and my family might be up against, now what?  Where do I go?  Who do I talk to?  Will my symptoms progress this far?  What’s my prognosis?  Will this ever get better?  Will I eventually lose my ability to walk?  How much greater will the pain get?

When you are confronted with something like this, you cannot stop your mind from racing in every single direction possible.  A thousand questions run through your head and unfortunately, very few (if any) have been answered at this point.  Luckily, I found these two amazing groups on Facebook that have been a wealth of knowledge over the past week.  At times it’s also been very disheartening to hear their stories, struggles, pain, and journey they have been on.  Definitely scary, but at the same time I do find comfort in being able to ask questions from actual TC patients.

Tarlov Cyst Disease

tarlovcyst disease

Tarlov Cyst Disease Awareness

tarlovcystawareness

So now what?

Problem #1: Because this is such a rare disease, there are VERY few doctors in the world who treat it, let alone know about it.  There are less than 20,000 registered cases of this in the world and less than a handful of neurosurgeons who truly specialize in it.  To be honest, there are really only TWO to be considered using the surgery method with the highest success rate: Dr Feigenbaum in Dallas and Dr Schrot in Sacramento.  There are neurosurgeons who perform surgery on TC patients, but the success rate is less than desirable.  They usually only drain the cyst/s,perhaps add a special glue to help prevent future leakage.  However in many cases, the spinal fluid only ends up leaking back in.  You end up in the same condition and/or worse.  Not the best odds.  Dr. Feigenbaun and Dr. Schrot both drain the cyst AND place a special mesh type material where the spinal fluid is leaking into the nerve (not just a fibrin glue).  Success rate is very very high.  Great!  Thats the route I want to go.  Sounds good huh?  Brings me to my next problem…

Problem #2: I have Kaiser insurance.  Great for those who are otherwise healthy, not ideal for anyone with a serious condition.  Not only that, the likeliness of being given a referral/permission to see a non Kaiser doctor (let alone a neurosurgeon), is next to none.  This is a whole other separate issue that I’m sure I will be discussing further at another time.  We are in for an uphill battle and if/when push comes to shove, all of my treatment will most likely need to be paid out of pocket.  We may have no choice.  I cannot live in my present condition for years on end fighting with our insurance company.  Cost of surgery/treatment with these doctors ill be anywhere from $45,000 to $60,000.  I can’t even think about where that’s going to come from.  Thats a bridge we will need to cross at a later time.

Problem #3: The effects this disease will have on my husband and family.  Regardless of how much I hide the pain from my kids and even my husband, its already prevented me from doing so many things.  I went from brining my daughter to/from school everyday, doing intense weight training for 1.5-2 hours each day, running errands, cleaning, cooking, walking my dog, driving everywhere, and being extremely active from the time I woke up to the time I went to barely being able to function because my pain was so excruciating.  My entire world seems to be surrounded by either pain management, scheduling phone consults and doctors appointments, worrying, and/or research.  I’ve spent nearly every single waking hour laying down in pain.  At some point, even the most chipper, happy, positive person will have their breaking point.  I can’t tell you the amount of times Ive been in tears the past 3 weeks.  Can’t be counted on 10 peoples hands and toes.

Since I can’t sit or stand for more than 5-10 minutes at a time without feeling the painful repercussions, I’m extremely limited in EVERYTHING I do.  Simple things such as picking something up I dropped, reaching up in a cabinet to get something, preparing meals, driving anywhere, bending over to throw my hair into a bun, and even taking short 10 minute walks outside are a huge challenge for me.  It either hurts too bad OR I’m so dizzy and lightheaded, I fear I will fall.  At this point, I’ve already lost my footing/stability so need to be holding something when I’m walking.

Also, for the past 2-3 weeks, my husband has already had to pick up ALL of the slack regarding the kids, the house, caring for me, and on top of working.  Of course he does it all without a single complaint and tells me every single day he wishes it were him having to go through it all.  Personally, I prefer it this way because I know my heart and soul would NOT be able to stand seeing him endure all of this.  It’s completely debilitating.  Physically, emotionally, and psychologically.  Symptomatic Tarlov Cysts are one of those ‘silent’ chronic pain diseases you simply would not wish on anyone.

Problem #4: Coming to terms with the fact that I will NEVER be able to lift or train the same as I have these past 4 years.  Best case scenario is having a successful surgery, being able to walk or use a machine for “cardio” so I can hold onto something, and doing only isolated lifting movements… most likely under 10 pounds.  To some, this may not seem like a huge deal.  For those who are SO passionate about fitness, training, lifting, being active, and chasing goals, can you imagine how devastating something like this is?  Sure, I can try and push myself to do things and work through the pain (I tried that the first 1-2 weeks before I knew what was wrong) and while adrenalin was pumping and I felt awesome (even doing lighter weights), my body wanted to curl up and die that night and/or the following day.  Those days were probably the most brutal for me in terms of pain.  Words won’t ever be able to express the sadness I feel.  Knowing I will never be able to squat or deadlift again… heartbreaking.  At this point, I would settle for the ability to walk for 30 minutes without any symptoms.

Prognosis

There is no telling how long I’ve actually had this condition, but up until these past couple of months there were no real symptoms.  Now that I have a very active “flare up” though, I fear it will only progress.  At what rate, how severe, what other organs/issues will be effected… we honestly have no idea.  Regardless, we do know this condition will never go away.  It is something I will live with for the rest of my life, even after surgery.

Best case scenario is finding a way to have surgery with one of the TWO doctors in the world who specialize in this disease and then hope its ‘successful’.  Hearing stories from those who have had had treatment with these docs does give me some hope.  After a 2 year recovery period (because our nerves are extremely slow to heal), they say some can get to about a 90% “normal” life.  Most are still on pain meds and go through minor flare ups that are manageable.  I’ll take it.  Anything is better than what I’ve been dealing with the past 2-3 weeks now.

The Plan

In terms of the immediate future, we have already been in contact with both neurosurgeons who specialize in Tarlov Cyst Disease.  My MRI has already been sent off to Dr. Schrot.  After he reviews it, we will set up a phone consult to discuss the findings and hopefully get a better understanding of everything.  We have also scheduled an in office visit with Dr. Feigenbaum in Dallas for November 5.  BOTH of these doctors are out of my insurance network which again means we are paying 100% out of pocket for any and all services, visits, treatments, etc.  At this point, I haven’t decided to speak with any other ‘out of network’ neurosurgeons because there really is nobody else who truly specializes in this.  I am obviously extremely apprehensive of seeking treatment elsewhere… this isn’t something like removing a cyst on your arm or something.  This is your SPINE.

As for my own insurance network… I will most likely be fighting a losing battle.  We do have an appointment with a Kaiser neurosurgeon on October 14.  We are NOT going into this appointment optimistically simply because of the horror stories we have heard from Tarlov Cyst patients and what they have had to endure with Kaiser.  They have basically spent YEARS being bounced around from doctor to doctor being treated for symptoms (urology, pain management, ortho, etc.) but NOT the Tarlov Cyst disease itself.  I should know more in a couple of weeks though.  Crossing my fingers that at the very least, they do not dismiss the finding (again, MANY horror stories about doctors saying Tarlov Cysts do not cause any problems).  Sounds strange, but trust me… sadly happens very very often.

In terms of work for me, fortunately I had already been transitioning away from newborn photography to focus on food styling/photography this past year.  As of this week, I will officially not be doing anymore regular newborn/family sessions.  It’s far too difficult for me to bend down, hunch over, and move around like I would need to.  I will miss my babies, but it’s just going to be impossible.

All graphic design/business branding work will also need to stop.  Because I have so much pain sitting (thats actually the worse pain for me) and I never know how bad things will get each day, it’s not fair for me to keep clients waiting until I’m ready to work again.  Giving myself 5 minutes here and 10 minutes there to “work” will simply not work.  Branding is now officially a closed chapter in my life.  I loved it and helped hundreds of photography businesses launch new looks!  I’m very proud of that business I created, managed, and maintained for over 7 years!

Fortunately, this blog has brought so many amazing opportunities to me already and it’s been a great source of income for my family for the past year.  In addition to the blog publishing network I’m partnered with, I am extremely lucky to already work for a handful of amazing companies for recipe development.

All of the recipes I can write laying down and then create/make/style/shoot food in batches.  As long as I plan ahead and am diligent about keeping a ‘schedule’ as best as the pain/symptoms will allow, I will be A-OK!  Even through all of this crap the past few weeks, I have made ALL of my deadlines with the companies I am currently contracted with.  I guess that’s a silver lining in all of this gloom… my body may not be happy, BUT this girl can still whip up recipes and EAT!!!  Nothing wrong with my tummy 🙂

Other than dealing with doctors and work, I plan to try and keep things as “normal” as I can with the kids & family.  It will be lots of pain and symptom management, patience with myself, and trying to hold my shit together in front of them as best as I can. This is one roller coaster ride I never wanted to be on, but one I am now stuck on.  I know I will have my bad days and better days.  In all honesty, there is nothing I can do at this point, but continue to power through.  Good news is I’m still alive and I will continue to be thankful for each and every single blessing in my life.

This disease will test everything I have in me, but I will be DAMNED if it breaks me…

Next up… “Life With Tarlov Cyst Disease”

  • sarah - O Corina, I am so sorry! I understand how heartbreaking the idea of giving up lifting would be- I experienced something similar with running at one point. Your post was hard to read because I really look up to you as such an incredible model of health and fitness. The good news is that I know you will continue to be just that; regardless of whatever challenges you face. Hang in there, babe! Sending you prayers and loveReplyCancel

  • Megan Dolan - Corina,
    I am so incredibly sorry about this condition and what you have been going through. We love you and are thinking of you. You are so strong- don’t forget that.
    Love,
    Megan and all Boston DolansReplyCancel

  • Rebecca - My dear Corina, you have always been such a huge inspiration to me in everything you do. I’m sure that you will continue to inspire, not only me, but many, in your new journey. Keep being you xoxoxoReplyCancel

  • Blair - Corina, my heart breaks for you because I know how it feels to receive devastating health news and to be faced with fear and uncertainty. I have only been reading your blog for a couple of months but you have been a great source of inspiration to me. Through my experience with my own health problems, I have two pieces of advice. 1) Do not let this disease define you. Your attitude and determination will set the course for your recovery. 2) Do not accept whatever the doctor or insurance company proposes to you in terms of cost. You can and should negotiate the price since you are paying out of pocket. That being said, my thoughts and prayers are with you. Selfishly, I have to add – Please keep posting your journey. It really is an inspiration to us all!ReplyCancel

  • Cheryl - My heart just breaks for you. I have been through something similar, in regards to your life you once had and loved is turned upside down with a rare incurable disease. I fight with fury most days but there are the days I have to let the dark fog settle and embrace my losses. You will be in my thoughts and prayers. I’m so sorry.ReplyCancel

  • Gretchen Tseng (FitQuestMom on Insta) - Corina you have given me so much inspiration. I herniated a disk earlier this year and was so scared that I would not live a normal pain free life again…I can only imagine what you are going through. From one mom to another I am praying for you.

    I started a GoFundMe Page where your followers can help donate funds for your medical expenses. I hope we can help provide you with some hope.

    https://www.gofundme.com/qu5295h4ReplyCancel

  • Harmony - Hugs????! You seem to be going through a lot recently. I’m sending health and loving energy your way.ReplyCancel

    • corina - Gentle hugs are the best 🙂 Thank you so much!ReplyCancel

  • Lisa - Hi Corina, I have been following you for months and you have been such a huge inspiration to me. I have suffered from sciatica in the past from work-related duties and I know how devastating that alone can be. Would it be possible for you to switch insurance from Kaiser to one that cover’s either Specialist Sending warm thoughts and prayers your way!ReplyCancel

    • corina - Our insurance enrollment isn’t up until July of next year. At this point, I’m not sure I can last that long for possible relief 🙁 I’m sorry for the pain you have as well. Hope it gets better! XOReplyCancel

  • Lindsay - I can’t imagine your pain emotionally and physically. Giving up something that you’re so passionate about, something that makes you, YOU is incredibly difficult. Keep your head up and know that prayers and positive energy are being sent your way. The best of luck to you and your family as you begin this healing journey.ReplyCancel

    • corina - Thank you so much Lindsay for your kind words! They truly mean to much to me!ReplyCancel

  • Erica @ SmartGirlsLift.com - I am so sorry you are going through this! Have you considered setting up a GoFundMe to help with the costs of the surgery and post-op care? It might be a good idea – even a little bit will help.ReplyCancel

  • Beth - I just stopped what I was doing to lift you up in prayer. I will continue to pray for you. I hope for relief from your pain soon.ReplyCancel

    • corina - Thanks so much Beth! You are very kind!ReplyCancel

  • Jennifer - Corina, I am so sorry for your pain and suffering. I am glad you found out what it is and have a plan. If anyone can beat this thing it is you! You have inspired me in so many ways, I know you can overcome. I will pray for you and your family. I wish I was there to help you. Big hugs from Ohio.ReplyCancel

    • corina - You are so sweet! Thank you so much for your note!!! Have a great day!ReplyCancel

  • Michelle - I am so sorry to hear of your diagnosis. My prayers are with you. Keep that positive attitude!ReplyCancel

  • Staci - I am just so shocked that this news is hard to process. I feel like I have had such a connection to you through this blog that a member of my family has received this diagnosis and I am so sorry. Maybe you should go to a site like gofundme.com and get donations toward your surgery. You have inspired SO many people and I know they would want to repay you by helping you regain your health! This is just crazy…but I think if anyone can overcome a scary diagnosis it is YOU! Thoughts and prayers will be with you and I know you are going to not only find the sunny side of this, you are going to find a way to beat it.ReplyCancel

    • corina - Thank you so much Staci! I appreciate it! Until we know for sure that our insurance won’t help, I don’t want to do something like that yet. Hopefully it won’t come to that!!! Crossing fingers!ReplyCancel

  • Margo - I’m so sorry to hear what you’re going through. Maybe this is not the most ideal, but my husband works for SD County Sheriffs Department and open enrollment just started for health insurance so I’m assuming it did for you too. I know how bad the benefits packages are but if you can choose a PPO now, maybe you can see the Sacramento doc or Dallas doc January 1st and have it covered? You don’t have to worry about pre-existing condition getting in the way anymore. I know it’s a long time to wait while in excruciating pain but just an idea.
    Im not going to say “I’ve been there” exactly but I have had major back injuries from lifting and I can sympathize. It’s amazing how much we use our backs and how little we can do without it. I once had to use my weight belt just to empty he dishwasher and cried the entire time. Hang in there… You’ll figure out a solution and be on your feet in no time!ReplyCancel

    • corina - Hi Margo! SDPD enrollment is in July 🙁 We will be contacting the POA though to see if we can switch over in January. Crossing fingers, but I doubt Kaiser will refund for 1/2 the year! Thanks so much for the suggestion though! I appreciate it! And YES, we don’t have our backs, we have nothing it seems!ReplyCancel

  • Kelsey - Oh sweet Corina!!! I’ve been missing you on Instagram and Periscope and it breaks my heart that this is the reason!!!! I hope and pray that God will put you in the hands of the right doctors!!!ReplyCancel

  • Michelle - Corina, you have been such an inspiration to me and I’m so sorry to hear this terrible news! You and your family are in my prayers and I’m praying for a full recovery to show His love and mercy. Thank you for sharing your journey. You are stronger than you know, mentally and physically.ReplyCancel

  • Courtney - Corina, I am so sorry to read about your diagnosis. You have been so inspirational to me on my fitness journey. I learned about macro dieting from you.
    I am a physician in Phoenix. I have started asking me neurosurgeon friends if we have any specialists at Barrows Neurological Institute that could help you. If I come up with anyone I will reach out and let you know. As you know- you want the best for this type of the. That said, with your level of fitness you will do great with this. Your body is better conditioned than any of the women I see in practice and that will get you through!!
    Good luck my friend. Prayers from Phoenix.
    CourtneyReplyCancel

  • Jhanell - Corina, I have ALWAYS Admired you! I’m so sorry to hear this terrible news. My thoughts and prayers are with you and your family. Prayers for an amazing medical team to take great care of you! Stay strong! (Hugs)ReplyCancel

  • Sascha - Thank you for sharing. I can’t remember how I found you but it was surely through something fitness related. I understand your fear of the unknown and the heartache of what was to be. My son has a rare disease (Alstrom Syndrome) that only effects around 1,000 known people in the world. I, like you, don’t fault many doctors for not “catching” it sooner. Most will never even hear of the disease let alone encounter it. We just keep looking forward even in the face of an awful disease. It’s the only thing we can do. I hope you find the medical help needed. We have gotten used to the mounting medical bills. Just keep going to the specialists and when the bills come in, give them a call and talk kindly about a payment plan. I have done it for so many years I feel very comfortable when I offer very minimal monthly payments installments. Thank you again for sharing your story.ReplyCancel

  • Leah - Thank you for your story and I’m so sorry you must deal with this. You are an inspiration and I look forward to hearing how your going to kick butt in this! Thoughts and prayers are with you and your family. I suffer from similar pain like this but nothing has ever been found. However, my back has never actually been scanned. I will continue to watch over your blog as I always have. You will not loose a fan!ReplyCancel

    • corina - HI Leah! If you have unexplained back pain, symptoms with your legs/feet, headaches, etc. and they are beginning to cause issues to daily life, definitely consider getting an MRI. It can’t hurt!!ReplyCancel

  • Irene - Thank you for sharing your story. You’re so unbelievably strong and brave for enduring this. Please, if your insurance won’t cover all the health expenses, start a gofundme or whatever it is called so we can help you.

    I am so sorry you have to give up one of your passions and I admire you very much for going through this with such graciousness and positivity. I seriously hope it all goes well for you and your family.ReplyCancel

    • corina - I should know more about the insurance situation next week, hopefully!!! Thanks for your kind words!ReplyCancel

  • Kristen - Oh Corina…I’m so sorry! I just returned from a trip and read this. You’ve been such a source of knowledge and motivation for me over the past year…my thoughts and prayers are with you!ReplyCancel

  • Sally - Corina- your’s was one of the first “fitness” accounts I followed on Instagram, and one of the few I still do. Your passion for a healthful yet balanced life has always been inspirational to me, particularly when I was struggling with an eating disorder. It seems so unfair for such a debilitating thing to happen to such a strong woman, but I hope you are able to find new ways to honor your health and to thrive. Sending you prayers and positivity!!ReplyCancel

    • corina - Thank you so much Sally! Have a great day!ReplyCancel

  • Mike - I’m so sorry to hear that you are going through this ordeal. I recently, nearly two years ago, had major low back surgery after having major neck surgery and can relate to the whole getting cut in and recovering. I live to lift and it has been a huge part of my life. I have found that Cardio is the hardest for me, due to the metal rods in my neck and low back, but it is not impossible to push through. Pray a lot, scream when you need to, and never give up. I wish I could tell you that the pain will go away, but it doesn’t. I’m Prior Service and the sayings that get me through are the sayings that we used at the 82nd ABDV. 1) Never Give Up 2) Pain is Weakness Leaving the Body & 3) You Quit, You Die. I have followed your blog for some time now and feel that you a a very strong person. I hope and pray for the best for you.
    MikeReplyCancel

    • corina - Thank you so much for your kind words and advice. I appreciate it so much! Once I get to see the specialist, first question I will be asking is “Will I ever be able to lift again?”!!! I don’t care if I need to stick to 10 lb dumbbells for the rest of my life, something is better than nothing now haha!!!ReplyCancel

  • adrienne - Oh my goodness!!!!!! I am and will continue to pray for you !!!!! You have been so inspirational in my life!!!! please keep us posted on how we can help you and you family!ReplyCancel

  • Mel - Hey, I read your blog I just want you to know you are not alone in your journey. I have Tarlov Cysts in my sacrum. 5 of the buggers, although all smaller than yours. I’m waiting for all my tests results to come back before they will operate as my surgeon wants to be 100% sure it’s them. Since becoming symptomatic my life has changed, like you I am no longer able to workout, much to my frustration. I used to train 5 times a week. Although I’m still at work the increase in pain levels and symptoms mean I don’t have a life when not in work. Sitting, standing are also a problem. Due to their location I experience bowel and bladder issues. I’m waiting to get tests results and visit my consultant in London end of November for decision on op. I hope your journey is smooth and quick!ReplyCancel

    • corina - Wow, another ‘cyster’! I’m so sorry to hear about your condition. Yes, life is definitely much different now that things are so symptomatic. I wish you all the best on your journey and I will have you in my thoughts!ReplyCancel

  • Katherine - Corina,
    This is heartbreaking news and I know that you have rough times ahead of you. You have another support team here as you can see from the comments above, we are all rooting for you and are here for you in spirit. You were my inspiration for getting healthy a year and a half ago and since first stumbling upon your blog I have lost 35lbs and have changed my lifestyle completely. In dark times look to these comments of love and support and hopefully you will find the strength in yourself that you have inspired in the rest of us. Praying for you and your family.ReplyCancel

  • Stephanie Somerville - Corina- I just began follwing you a few weeks ago on periscope through skinny Meg’s referral and love all of the foods you make. I want you to know in this small world my Mother just had Dr.F. (Not going to try to spell his name)preform surgery on her earlier this year. She had 5 or 6 cysts herself and I would love to help you make the connection if you’d like to pick her brain or ask anything at all. Please let me know if you’re interested and I would be happy to give you her info to get in contact. I am going to FWD this post to her so she will probay reach out to you as well but I just wanted you to know you are not alone. When I heard you say on periscope “a doctor in Dallas one of the ONLY” I knew I needed to look up your blog and see if the connection was right. So sorry for this hard time and I hope you can find all the comfort you need to handle this life change. God Bless!ReplyCancel

    • corina - Wow, that is a small world! How ironic! I wonder if your mother is part of the Tarlov Cyst group on Facebook? I may have already been connected with her? Since this is such a rare disease, there aren’t too many people in the group… roughly 1,400 or so! Thanks for letting me know about your mom!ReplyCancel

  • Clara Toro - Hi corina. I am writing you from Venezuela. I am a very huge fan of you. Sorry about my English since it is not my mother tongue. I feel very identified with you. I am a mother of two I have a wonderful husband and a wonderful live. Around 10 years ago I began experiencing some troubles with my eyes. Then I was diagnosed with something call Uveitis I thought it was something like conjunctivitis. The pain was terrible and I lost sense of sight from one eye. I knew something was wrong with me, to get the story short the doctor told me that the eye was the manifestation of some immune disease we need to discover. I got tested from everything you can imagine from lupus to cancer. Then they discover I have a gene from a disease called kron. Something to do with the intestines. Trough these 10 years I have had 6 flares very painful and the only way to stopped it is trough a shoot of steroid directly in the eye and awake. These depress me a lot. And like you I am very active and very into my family live, I lift weight and run and love sports and fitness lifestyle. That I want to tell you is that is always a light at the end of the tunnel. For five years I have been taken an immunosuppressive med and had no more flares. I recovered my life step by step. I always go to the doctor to get my eyes and blood checked. You’re very strong and determined person that will find the way to struggle with these, use your wonderful inner recourses never look back always looking forward and be grateful for what is behind. We always have the power to be happy with what we have if we have the most important: a wonderful family. Give time to the situation and you will be a winner. For the time I do lift weight and play tennis. ????????????????????????ReplyCancel

  • kim - omg, my wife just got diagnosed with tarlov cyst……its been going on for 2-3 yrs since its been on and off for her…then we got the mri resulits today and it said she has a small tarlov cyst s2…i got worried instantly and got stressed…googled it…she is the bread winner or the family….Praying that it wont get worsen or something.ReplyCancel

    • corina - I’m so so sorry to hear about your wife. This disease is brutal. She will need ALL of the support and love to get through each day. If she is symptomatic, I would strongly suggest seeing a neurosurgeons who actually treats these. It’s not a definite cure or anything, but talking with someone who can answer your questions will help. Check out the support groups on Facebook… LOTS of great information and stories shared! Good luck to both of you!ReplyCancel

  • Michella Schroeder - Corina, I too suffer from Tarlov cysts. My surgery is scheduled for February 21st in Cyprus with Dr. Feigenbaum. I HAD to do something. I know nothing BUT pain. I’ll let you know how it turns out it you respond back to me.ReplyCancel

  • Ginger Kean - I’m in the exact same boat as you are. I’m older than you but I also have always been very active and worked out hard my whole life. Your story sounds so much like mine. Being a health conscious person it’s hard to consider surgery but when no one else can help; what do you do?? Have you had the surgery yet? I’m on the list for late March early April and scared to death. I’ve been doing ozone treatments as they say they can heal Autoimmune diseases which Tarlov cysts are supposed to be…I’ve had 6 treatments so far and in the beginning I thought it might be helping (placebo effect?)but the last few days I’m not so sure. I’m willing to give in a try in hopes it gets better before I have to do the surgery. I would love to know where you are at as far as the surgery. Most of the posts (reviews) on Dr. Frank Feigenbaum’s website had the surgery years ago (2007) I can’t find anything on more current surgeries but I’m continuing to search.ReplyCancel

    • corina - I have chosen not to have surgery at this time… I’ve improved so much the past 8-9 months. I’m controlling all pain/symptoms using natural and diet supplements. You will find quite a few support groups on Facebook that can be of help and guidance!!! Good luck, I’m so sorry you suffer from this horrible disease!!! XO CorinaReplyCancel

      • lesley - Hi Corina, My heart goes out to you and I can empathise as I too have a tarlov S3 which was found 7 yrs ago after I was given an MRI fI doctor refused to acknowledge that the pain i was suffering was caused by the cyst and said it was an incidental finding as they never cause symptoms!!! He admitted that he knew little about them ( im in the UK) and suggested it was muscular. I have got progressively worse and still no one seems to think that its caused by the cyst, my pain is in my right buttock hip and groin and goes into my thigh, i have pins and needles in my hands, dizziness, headaches and bowel incontenence, Im sure my gp thinks im a hypochondriac and its so very frustrating as im also in pain every day although i dont think im suffering as you are. The report from my MRI suggests its a large Tarvlov cyst and a few years ago , i had a fall and really hurt my coccyx and having read that trauma to this area can cause the cysts to grow im convinced this is the reason for my worsening symptoms. Anyway, i jus thought id shared this as it does seem to help to know that others know exactly how you feel and although doctors etc are suppposed to be supportive, ive not found that which is why ive turned to google and found myself identifying with you and probably several others. Anyway, im glad to see youve managed to get a little relief from the intensity of your pain, i just wish they’d find LesleyReplyCancel

  • Dixie - I too have a symptomatic Tarlov cyst (discovered on MRI last week). I’ve had symptoms for 10 years without this rare condition ever being identified. I will continue to follow your blog, and hope that most of the problems you are experiencing become manageable, if not totally resolved. If I find a satisfactory treatment, I will share it with you. Thank you for raising awareness about this debilitating condition.ReplyCancel

  • Joan - I came across your blog when I searched for Tarlov cyst because I was diagnosed a week ago. I am 43 years old with a 15-month old daughter and I’m so heartbroken that I might not be able to keep up with her as she grows up. Reading your blog lifted my spirit. I am trying my very best to keep a positive mindset. I’m on Lyrica now as prescribed by my doctor. It helps a bit but by late afternoon till evening I can already feel the pain in my right butt radiating towards my right thigh. I also started taking turmeric and will soon be adding serrapeptase into my arsenal. I’m glad I have your blog to inspire me to keep going and continue living my life despite this new roadblock.ReplyCancel

  • Andrea AK?? Johnson - Hello I seem to have a lot of the same symptoms and problems that you do with the Tarlov cyst I’m if you can reach out to me you have my email letting wings at Gmail.com that would be great I did go see Dr. F and it was good it’s just more searching still because I didn’t have enough information on the MRIs that I had brought
    AndreaReplyCancel

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