Ashley’s CSF Leak and Neuro Journey

Immediate update : I will be headed back to PA to have a shunt placed in either my brain or my lumbar spine as soon as I’m able to come back . ***I am sharing my campaign again because my family and I have done everything we can , and still do, to fund these surgeries and my daily living expenses . It is becoming more and more difficult to stay afloat and get the treatment needed.
*In between all of this I am having an umbilical hernia operation and seeing an Infectious Disease Doctor for my repetitive cases of MRSA*
A spontaneous cerebrospinal fluid leak (SCSFL) is a medical condition in which the cerebrospinal fluid (CSF) held in and around the human brain and spinal cord leaks out of the surrounding protective dural sac, for no apparent reason. The dura, a tough, inflexible tissue, is the outermost of the three layers of the meninges, the system of membranes surrounding the brain and spinal cord. A spontaneous cerebrospintal fluid leak is one of several types of cerebrospinal fluid leaks and occurs due to the presence of one or more holes in the dura. A spontaneous CSF leak, as opposed to traumatically caused CSF leaks, arises idiopathically. A loss of CSF greater than its rate of production leads to a decreased volume inside the skull known as intracranial hypotension. Any CSF leak is most often characterized by orthostatic headaches— headaches that worsen in a vertical position and improve when lying down. Other symptoms can include neck pain or stiffness, nausea, vomiting, dizziness, fatigue, and a metallic taste in the mouth (indicative of a cranial leak). A CT scan can identify the site of a cerebrospinal fluid leakage. Once identified, the leak can often be repaired by an epidural blood patch, an injection of the patient's own blood at the site of the leak, a fibrin glue injection or surgery .SCSFLS afflicts 5 out of every 100,000 people. On average, the condition is developed at the age of 42, and women are twice as likely as men to develop the condition. Some people with SCSFLS chronically leak cerebrospinal fluid despite repeated attempts at patching, leading to long-term disability due to pain.

I woke up out of the blue on March 18, 2017 with severe brain pain. Without going too far into detail, I ended up in the hospital for over a month with what turned out to be a cavernous malformation that was also hemorrhaging . After doing plenty of research on my positional headache and the constant feeling that my brain was going to explode if I lifted my head out from a flat position ,even just the slightest millimeter, I began to wonder if my positional headache was in fact a CSF Leak. I was told that csf leaks are generally caused by surgical errors, lumbar punctures, gymnastics injuries, automobile accidents or something very physically traumatic ...but I had none of that ; I simply woke up on March 18th feeling like I was dying ( literally ) as I was about to make eggs for breakfast on what would have been a normal Saturday morning . Actually, this was my first Saturday morning in my brand new, gorgeous apartment with all my furniture , as my final moving day was just the day before this nightmare began. I've been in my beautiful apartment 7 months now, having spent about two of those months away from home and much of the time in between at hospitals for day visits, doctor appointments , tests, bloodwork, recovering from surgery, etc. Keep in mind that while all of this is happening I am also a past thyroid cancer patient and ever since having my Thyroid removed I have been struggling with maintaining a normal TSH range. My last bloodwork came back to show that my TSH level was at a 151.5, when I am highly medicated to be at a 0.00. My body is clearly rebelling against me and trying to fight the good fight . Since all of this began I have had two epidural blood patches , a cerebral angiogram and who knows how many MRI's and CT Scans. I've also had two CT myleograms, a drain in my spine (I cannot even put into words how painful this was ; so painful that I am still apologizing over three months later for how awful my mood was when I was kept so highly drugged to numb the pain (I thought I was in the hospital for just 3 days when I was really there for 15). In June I had a laminectomy at my C1-C2 level at the top of my spine (very painful recovery and the surgery was unsuccessful. The spine surgeon inserted a very large amount of fibrin glue into my spine, however there was a 50/50 chance that this glue would either seal my leak or create a "dead space" for my spinal fluid. Regretfully, it created a dead space . My surgery did not take and I've been suffering since June...again. At first , I was told this must be "psychiatric" or "sleep apnea" because unknown to my knowledge I apparently have a "shorter neck." I left the hospital in severe pain, still unable to sit up or stand and felt hopeless . I was severely depressed and in tremendous pain daily . The only relief I had was when I was totally laying flat , but even then symptoms were still there . After two long months of waiting , I had my follow up MRI's. Indeed, I was right . This wasn't psychiatric or sleep apnea...I have a spontaneous CSF leak and several tears in my dura. This all led to my CT myleogram which then led to the drain in my spine which then led to my laminectomy . My symptoms over a combined amount of time are as follows :
Nausea and vomitingSevere
neck pain and stiffness, almost as if I become paralyzed when in many different positions
Muffled hearing and ringing in my ears
Imbalanced and lightheaded, almost as if I feel like I am underwater
Sensitivity to light and sensitivity to sound
Terrible pain and stiffness between my shoulder blades
Brain pain as if my brain is sagging in my skull and pulling down toward my spinal cord
Drainage from my nose and a metal-like taste in my mouth
Drainage down the back of my throat and drainage from my left ear
Left eye pain
High pressure sinus aches
Horrendous migraines
Positional headache
Numbness in my face
Excruciating pain in the back of my skull
These are MRI results of total brain and spine as of June and July 2017 compared to April 2017.
There is extensive bilateral and diffuse dural thickening and enhancement which is consistent with intracranial hypertension.There is prominent epidural fluid noted dorsally at the C1 -C2 level which significantly worse compared to MRI dated April 11, 2017. The dorsal epidural fluid tracks posteriorly into the nuchal ligament and also extends caudally at least of the T6 level.Several suspicious general defects were noted posteriorly in the cervical spine for example at C2 and C3 and C4 and C7.Findings are also consistent with suspected cavernous venous malformation in the left splenium of the corpus callosum and left parieto-occipital fissure. There are several other punctate Foci of susceptibility including in the right frontal operculum, in the right corona radiata, and in the left Corona radiata; these are likely from small microhemorrhages. There are a few scattered punctate foci of T2/FLAIR Signal in the Periventricular and subcortical White matter which are nonspecific.Prominent pituitary gland likely accentuated by intracranial hypotension. There are mucous retention cysts in the bilateral maxillary sinuses. Minimal mucosal thickening in the ethmoid air cells .A smaller amount of dorsal epidural fluid is noted in the lower thoracic spine from T62T 12 which appears similar to MRI dated April 11, 2017.There are similar small disc bulges in the spine.

CT myleogram June 2017: There is questionable contrast dorsal to theCal sack at the scene one C3 level. There is a minor ventral impression on theCal sack at the T 11 and T 12 level. At the C1 and C2 levels there is a contrast extending extradurally and out into the posterior soft tissues. This appears to be leaking at the c1- c2 level although contrast is seen superiorly and posteriorly to the level of the skull base. Some contrast is seen within the soft tissues inferiorly to the level of C6 and C7. CT myleogram post laminectomy;
July 2017 (I have zero recollection of going in for this procedure)This exam demonstrated a CSF leak in the C1 and C2 region greater on the left which appears similar to slightly decreased from prior procedure.Overall findings are that contrast is again seen extravasating from theCal sack in the C1 C2 region .Post surgery I have had several follow-ups and yet absolutely no luck in any of the doctors at Yale or my several emergency room visits providing me with any relief. I was treated absolutely disgustingly during both of my emergency room visit and I was rejected from going up to the neurological unit. I have been spoken down to, treated like I know nothing of my disorder, and sent running in circle after circle after circle searching for relief. Unfortunately until November 1st I only have state insurance meeting I cannot leave Connecticut for treatment. On top of that, Yale is the ONLY hospital that I can go to for this neurological disorder but they keep sending me in circles and I am convinced they have no idea how to treat me. All emotions aside and negative opinions on my experiences with Yale and related L&M facilities , I am just desperate for a cure or at least for some relief . I have lost my job for now the 7th time in total since becoming ill (including Thyroid cancer ). I am desperate for some pain relief and to get my life back. I am 28- year young and more depressed than ever and in terrible pain 24/7. There is no relief for me . I needed to reach out and find support from others who suffer from the same condition as me and luckily I found a group for those who suffer from CSF leaks . Hundreds of leakers just like me from all over the world have referred me to Cedars Sinai in Los Angeles, CA where Doctor Wouter Schievink specializes in CSF leaks and torn duras. It is very hopeful that he is going to be soon accepting me as a patient . This could give me my life back.

Update as of 11/26/2017:I made it to Yale for 3 days on Halloween and then to Cedars Sinani 11/5 and had two DSM myleograms and a laminectomy on 11/8 of T3/T4 to remove a bone spur puncturing my dura . I've had 3 MRI's here already and have a blood patch as well. I also had a CT myleogram and blood patch at Yale. I just typed out a huge update for you all however I am quite sedated , as I'm on day 19 inpatient here in Los Angeles , and fell asleep typing and erased it ALL in my sleep. Devastated . To make this very quick before I fall asleep again, I am still leaking and have another DSM myleogram and epidural blood patch tomorrow morning . I am not quite sure what it will take to heal and am severely depressed . I hope to update you all tomorrow with better news but until then I am spreading leaker love and light and Intracranial Hypertension awareness . I'll be seeing Dr. Liu in PA for that in February!

Update : I ended up being impatient at Cedar Sinai for 28 days in the worst pain of my life . Since I arrived at Cedars Sinai, I had my T3 cut open and a bone spur removed and shaved . I then kept complaining of leak pain still and was sent for more MRI's and found another leak. I had a blood patch done and then still felt I was leaking . After yet another myleogram I was STILL leaking and had my T3 and T4 reopened as well as T5. Without going into too much more detail, I suffered with awful pains post operative and just recently had another MRI in January showing that I am yet again still leaking and now have spinal canal stenosis . My next step is to get into the CSF team specialists at Duke in North Carolina .

February update : I am currently in North Carolina where I just two weeks ago , at Duke Hospital, had surgery at T2/T3 to repair my herniated spinal cord and close my csf leak. My surgery was successful ! I immediately went into rebound high pressure and my body began overproducing Csf so a lumbar drain was inserted into my spine . My pressures fluctuated at an increasing rate and I’ve been sleeping 20+ hours a day uncontrollably with full body tingling and numbness .
Unfortunately while here at Duke we have determined that I most definitely have IIH, Idiopathic Intracranial Hypertension, also known as Pseudotumor Cerebri, where the pressure inside your skull increases for no obvious reasons mimicking the symptoms of a brain tumor . - However , on a positive note , my leak has been sealed !

April update : I am back at Duke, as I feel like I’m in low pressure again but cannot tell because high pressure is so similar to low pressure ; I am unsure if I am leaking again or just experiencing tremendously high pressure in my brain . After a lumbar puncture and myleogram it was determined that I am experiencing very high pressure .

After leaving Duke I developed a staph infection on my left leg missing several days of my part time job (that I am gracious enough has taken me back several times now) but then I developed MRSA on the same leg causing me to miss a week and a half of work. I had no choice but to pick up more part time hours at a second job trying to manage through the brain pain. Now, today, I am fortunate enough to have been able to drive to Pennsylvania to FINALLY see Dr. Liu!

June : On both sides of my brain I have very restricted blood flow from the veins and will be coming back to PA for a stent to be placed in my brain. In another hour Dr. Liu will be doing a lumbar puncture to determine if a shunt would also be a better but I’ll need to make those decisions in my time between returning back home and coming back to PA for surgery. So far it’s great news because it explains why I’m having such high pressure in my brain (an issue separate from my leak). My lumbar puncture failed as they could not get to my dura bedside without guided radiology . It caused me awful pain and therefore they decided to keep me overnight for pain management . I will be coming back soon (waiting on the date from the doctor ) to have a stent placed in my brain. There is a 50/50 chance this will work. If it goes not the next step will be to get a shunt .

The day I left PA after my brain surgery I developed MRSA on my right buttocks and ended up going right from PA to Westerly Hospital back home where my abscess was lanced. The next day I was admitted with a 103 fever from the infection and was inpatient for 6 days . Shortly after my discharge I had a syncope issue where I fainted in my hallway and blacked out . I was transferred from Westerly to Yale but they wouldn’t treat me there. I’ve had horrible experiences with Yale from the start. I emailed Dr. Liu and he immediately made an appointment to get me back to PA. Now it’s just a waiting game .

September : I’ve been working about 9 hours a week, sometimes less because of pain . I do my best . Dr. Liu is scheduled for September 17th and 18th!After my lumbar puncture we decided I am now going to need to come back for a shunt . He suggested coming back next month but finances have become unbelievably difficult . As for the shunt , he said I could choose from a VP shunt ( Ventriculo-Peritoneal - The shunt catheter goes from the ventricle in the brain to the abdominal cavity) or a brand new shunt that only 40 patients have . The new shunt is a Lumbar Atrial, where the tubing is placed into the lumbar spine and the csf drains into the atrium of the heart . There is not much research yet on this shunt because it’s so brand new but the 40 patients who have it have had no problems as of yet and no revisions needed . My family and I are trying to decide which option is best for me . Both shunts come with various risks and potential for many more neuro surgeries. These are the options I am faced with .

Everyone has been so amazing doing their best for me to keep providing medical help and living expenses help etcI just ask, with hesitation , that you please keep sharing my story. It’s still not over and impacting my life much more than I ever could have expected . I love you all. Thank you for sharing this journey with me and making a girl never feel alone in the hardest of times !
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Organizer

Ashley Sievers 
Organizer
Pawcatuck, CT
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