Erika’s Broken Brain Corner

 

Thought I’d start a diary of sorts about my, or rather, our saga with brain tumors, CSF Leak, Intracrainial hypotension, and the crazy things we do to “fix” the brain. In the last three years we have learned the medical community knows surprisingly very little about the brian, and even less when things go wrong.

 

 

Quick synopsis of “our saga”

4/2011 ~got sick, mostly GI in nature, felt seasick all the time(land and sea).

6/2011  ~found tumors surrounding pituitary,

7/2011  ~surgery to remove tumors revealed a complex and perplexing growth and debris that wrapped around my pituitary, traveled up the stalk and into the hypothalamus of my brain. 

~UPDATED- reviewing my records, the docs now believe I had a pituitary apoplexy with tumor involvement. In other words, my tumors invaded my vascular system of the pituitary stalk causing a rupture. Thankfully I’m not dead :-), my body was able to stop the bleeding on its own, but left a pretty big mess behind.

7/2011-12/2012  ~ no one knows exactly what they dug out of my head. Advice from the medical community was to relax and get better. But my situation was not improved. In fact, seemed worse. I suffered from disabilitating head pain, light and sound sensitivity, and cognitive issues included memory loss, critical thinking impairment. I couldn’t think straight, I had ringing in my ears and the sound of waves crashing behind me( strange aye?). I had to quit my wonderful job as a nurse in the operating room. 

 

12/2012  ~Many mis-diagnosis and lots of wild goose chases later, I went to Cedar Sinai and saw Dr Schvink who said I had to have surgery again. This time to fix a CSF leak caused by original surgery.

9/2013 ~ plateau in recovery

12/2013 ~ 8 months of physical therapy and though I’m stronger physically my head pain is still bad. doctors suspect…? All sorts of things. Another CSF leak, more tumors, aliens have invaded my body. My latest neurologist told me I was way out of her league and that she really couldn’t help me. A refreshing change actually, most docs throw meds at me and schedule a three month follow up.

1/2014 ~I’m now scheduled to see Baylor Pituitary Center. So I’m gathering up my labs and doctors notes for yet another shot at fixing this.


4/2014 —-after failed EBP at Cedars in California, a new Neurologist here in Houston put me on Diamox, which sounds counter intuitve for someone with a CSF leak.

 But the reasoning is :

 I do not have a fast leak, or it would have showed up on the MRI. A slow leak will heal itself IF you have normal Intracrainial pressure. This means that if my symptoms are caused by a leak, I must have high pressure ( leak unable to heal). Diamox should stop the leak, and once it is stopped, it will heal itself in time.


I’m doing really well on diamox, it has some crazy side effects but it has completely stopped my leak symptoms. Only on week three of diamox, so will see how things progress. Doc says this diamox could be temporary or a forever thing….who knows. It does cause memory loss which can be embarrassing when you don’t remember someone you just met last week, and forget about names, new people don’t have a chance. But it hurts when I cannot remember the name of someone I’ve known for years. Sigh. But again it is better than the alternative!!

 

 

 I guess this is where I write all sorts of wise words of discovery of ones self, where I describe the beauty in the storm. But I got nothin. I have been knocked down and have yet to get up. I don’t know why, I’m very strong. I have surmised that things are a bit different when you have a broken brain as opposed to a leg or even heart. But knowing that has not made my path any clearer.

 

I’m the one in the shell. The beautiful creature trying to coax me out represents the wonderful world we live in and the beauty that has yet to be discovered and explored.

 

 

I was always so good at seeing beauty in the most unlikely and even horrible situations. Working in a hospital will show you the grittier side of life. But to find beauty, to see people and situations past their illness, past their anger and fear, it came rather naturally for me, like it was whispered to me from somewhere deep inside.

 

 

I remember a patient who was a gang member. When they rolled him into the room, I was struck by his appearance, he was such a contradiction. His face and body covered with tattoos and scars, tattoos meant to scare, meant to warn. The scars authenticated it all. His anger and mistrust just engulfed the room. And more obvious, he was scared. 

 

 I wasn’t supposed to be in that OR. I had just stopped by to check on things. But when I saw him, I saw fear, and he was clearly someone not used to feeling helpless. His nurse was a bit busy, working at the chart. So I began by helping anesthesia, getting caught up to speed about his condition. This placed me right at the patients side. Talking gently and as soothing as could be, I tried to relieve his fears. He wouldn’t look at me or answer any of my questions, I didn’t press him. He, like most patients, are overwhelmed by the operating room, and the whirlwind of activity, and who could blame him.

It took at least 25 minutes to get him ready. About a minute or two before we started the induction, to put him asleep, he opened his eyes, looked at me, and asked me my name. It was the first time he had even acknowledge our presence. Such a simple request, my name, but in the OR patients rarely, if ever, ask our names. With all the sensations, bells, beeps and alarms ringing, people darting around in masks and hair coverings, it is such a foreign hostile terrain.

As a patient, at least for me, the operating room really tore down any wall of denial I had built. The room had a way of exposing the reality of my situation. The minute I rolled into that cold brightly lit room, the reality that my Brain had a stowaway, an invader, unwanted and out to hurt me, became starkly clear.

 

My Hubby Brian, Who Always Makes Me Smile

 

So I had to smile at my patient through my mask, because he honored me with that question. A dozen people in that room, and he asked me my name. I said to him ” my name is Erika, and you are going to be alright, we are going to take good care of you”. He asked if I was going to be there with him, be in the room while he was sleeping, another honor. I could stay and told him so. He nodded to me and closed his eyes. A second later he reached out for my hand and grasped it tightly. He fell asleep holding my hand. That’s beauty in the darkness. A gang member, black panther tattoos, tough and strong, holding the hand of a stranger, trusting me to stay and watch over him. Beauty.

 

Out beyond ideas of wrongdoing
and rightdoing there is a field.
I’ll meet you there…”

― Rumi

 

When I got sick, it was out of the blue. Though there were signs here and there, fatigue, lack of appetite, etc. I just blamed it on my busy nursing life. I worked split shift and also helped out next door at the Heart and Vascular Center. When I found out about the brain tumors, I was ok. I was a bit in shock, but I was generally “OK”. What I did feel was guilt. I felt guilty for getting sick. My husband had proposed two weeks earlier, we were getting our boat ready to go cruising, to go play for a while. So much planning, and then I got sick. I felt like he got the shaft, making him fall in love with me then popping the old “I got brain tumors” surprise on him. No matter how illogical it sounds, no matter how many times I tell myself that it isn’t my fault I got sick, I still feel guilty.

 

Brian, my hubby, has been amazing. No words can express how much I adore him, how much I admire his strength. And he is so damn smart!

 I’ll keep adding to this page…

 

My family has been amazing. My sister and brother-in-law took shifts at the hospital. Noel, my brother-in-law would take Brian out for dinner everynight to get him away, to decompress. Noel also brought me my favorite water(Fiji) and a nice cup of tea every morning.

The bringer of tea and happiness 🙂

 

 

And maybe soon I’ll be able to adjust my sails.

 

Hope this made sense ( broken brain disclaimer )

 

UPDATE 3/21/2014

Well Baylor pituitary center found nothing definitive. One thing they did do is thoroughly go through my pituitary MRIs with a radiologist that specializes in pituitary problems to paint a clearer picture of what my original tumors were up to. They believe, and I agree cause it makes the most sense, that I had a nonmalignant tumor apoplexy. An apoplexy is when tumors rupture blood vessels. Thankfully, my rupture wasn’t life threatening. The abundance of leukocytes and odd tissue was a responce to try to clean up the blood and such. Gross aye? Plus they told me I had bone remodeling due to the tumors size, I find that very interssting( the nerdy nurse in me).

 

 

 

So once we confirmed my tumors are not back. 

Wait, I should put that differently…MY TUMORS HAVE NOT RETURNED!!!!!

 

 

 

 

 

So we sent my info to my neurosurgeon at Cedar Sinia in LA. Dr Schievink, thinks I have another CSF leak (booooo!).  So we will be flying to LA the first week of April to run some tests and have a procedure, possibly surgery again. My cognitive issues have gotten a bit worse. My head pain is just down right off the charts. But once the leak is repaired my cognitive issues should clear up and head pain either gone or greatly reduced.

 

 

 

The big issue with CSF leaks is that it causes low intracranial pressure, this in turn leaves my brain rather unprotected from getting roughed up. Think of CSF fluid as a big cushion for the brain, if the cushion is not there your brain can get beat up by the hard skull. So leakers ( we call our selves) can get cuncussions and contusions from the most innocent of movements. For me riding in a car that suddenly brakes will put me in a tail spin!

 

 The Brain responds to low pressure in many ways. These responses can manifest in obscure symptoms, which are poorly understood, frequently mismanaged, and misdiagnosed. Research is at its infancy. 

 

 

 

Will write more when I get back from LA

🙂

Back from LA. The doctor wanted another procedure done, a blood patch. He could not locate where I was leaking CSF again, but did say my original repair site looked good. So he patched just above it, or rather an interventional radiologist did the procedure. I had a rather bad reaction to the procedure so they kept me overnight ( ugh, I hate hospitals!) .The up side, the patched worked and my head pain and related symptoms were mostly  gone :-). So my mom, Brian and I flew back to Texas for my 4week mandatory bed rest ( more ugh!!).

Getting me from Texas to California and back was no small task. Thanks to mom and hubby, all I needed to do was hang on.

 

4/28/14

Patch failed, I’m leaking again. But the leak seems smaller( symptoms are not as bad). So my doc wants to repeat the patch procedure in hopes that it will reinforce the earlier repair. As you can see, this is more art than science. I’ve decided that we do not have to go back to Cedars for the next patch. I will have it done in Texas with my Cedars doctor overseeing the progress. I have an appointment this week(5/15) to see the neurosurgeon, and should have my final, yes, final procedure to fix the elusive leak.

 

I gotta a lotta light!!

 

I’ve spent the last month recovering at my sister’s house. Our dog scupper especially loved it cause his best pal is there.


Stormy and scupper are devoted to each other, and it is very sweet to watch them play all day. My sister is a dog whisperer, so scupper picked up some good habits, like not running out the door every time it is opened. Thanks Alecia!

 

So next step another EBP, hopefully, that will improve my condition.

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Update:5/13/2014

The Texas Neurosurgeon ( DrPatil Baylor Neuro) wants to run some tests before doing another Blind Patch, sigh, so the saga continues. At least I’m back on the boat!!!

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 Update 10/17/2014

Seeing a new neurologist at Baylor. We are certain that now I have High Intracrainiial rPessure. 

My doc has wanted to admit me to monitor my pressure. But this involves invasive procedure, so I’ve been reluctant to move forward. Now my symptoms are getting worse I’m ready for them to turn me into a human pin cushion again.

 

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Update 1/3/2015

We decided not to perform any procedures, period. I found a great pain management doctor at Baylor college that has me on an extended release med. This med ( tramadol) has not worked for me in the past but I had never tried or even new about an extended release version. It works very well, giving me almost complete pain relief for a good 5-8 hours WITH activity. This also doesn’t make me sleepy or dopey :-). Some days are better then others but with the combination of Diamox which lowers my intracranial pressure and thie ER pain med, I am getting my life back :-). I think my CSF leaks are repaired and now my brain is just trying to find it’s equilibrium. I still suffer from the vertigo, visual disturbances, memory lapse and such but it is very mild compared to just 6 months ago.

I also went through extensive neuro/optholmolgy testing to make sure my visual disturbances were not causing damage. My neuro testing also showed complete healing in my cognition and memory functions. Any issues I have are medication related. So as soon as I am able to ween offthe  drugs I could look at  being a nurse again 😀😀😀😀😀. But right now we are focusing on healing and recovery. Our sailing adventure is just the therapy I need. Hugs to all.

 Thanks to everyone for their incredible support. Especially my Family, my mother who sacrificed so much to get me through the tough times. My sister Alecia and brother-in-law Noel who was always ready to help with whatever we needed. And of course, my hubby, who pulled me from the fire more than once. I love you all, thank you.

Hugs

Erika

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Broken Brain Update 9/6/15

 

Since starting this adventure post brain surgery, we were unsure how I was going to handle the traveling. I had lived and worked on boats since I was 19. I delivered boats across oceans. I know this life. But I was unsure my brain would remember. Unsure my brain would accept the constant movement and stimulus. So far I have had a blast. My heart and spirit is content, happy. My physical body though has shown me just how much these last three years of illness has taken its toll. I’m pretty sure this is a stamina thing, I just need to build stamina. Also, muscle recovery. I’m using muscles more and demanding more of them. That’s great, builds stamina. But my muscles don’t seem to be knitting themselves back together very fast, they need a lot more time to recover then before my illness.

 

My brain still goes crazy and begins to rebel ( hurt like hell with my old symptoms including slight confusion) but if I’m careful, it Is not a common occurrence.

 

So we have revised our travel plan. Two days of light travel 40-50 miles, and one day of rest. See if that gives my body time to recover, and build stamina.

Beautiful

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 UPDATE 8/20/2015

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We’ve been cruising aboard our sailboat Rain Dog for 9 months now. I still have brian issues but I have spirits of rather normal days( as normal as a broken brain can get). 

My days have dissolved into a routine 

I wake up early might take some sunrise pictures, go back to sleep until brian is ready to get up and have a tea, read, maybe nap, then swim around the boat or dinghy over to a snorkling spot, have lunch, take another nap, swim , have dinner, read , do small boat project, or watch a movie, then bedtime. Brian does all the work, cooking, dishes, engine maintenance. I try to help. I do general cleaning of boat, constantly tidying, and am in charge of the head maintenance and cleaning. 🙂 . I sew when I can. Sewing seems to be the least taxing on me as far as boat work goes. Sewing, I’m sitting rather still, in a cool place with fans blowing on me.

The swims have really the biggest physical therapy impact, and also emotionally calms me. I do not get overheated as I’m in the water, it is low impact exercise using water as resistance.  I mainly float about, dive down here and there. If we do something that stretches my tolerance of activity, the biggest help or equalizer is the water. Sometimes I’m so far gone I don’t even get my bathing suit on, just slip over the side and start floating. It almost always works. My pain subsides to a background level and my body slowly relaxes. 

My cognition:::Well, it really hard to say what is my broken brain and what is the meds, my neuro doc says the meds do not impair memory, critical thinking. Not sure how much of that to believe. My memory is pretty bad compared to my pre surgery days. I always had hard time with names but I always remembered a face. Now, post surgery, I cannot recall names and most times faces. So that can get awkward, to say the least. Since we started cruising last December, we  have run into people that I had known during my boat delivery days, the cruising world is quite small and I was deeply entrenched in that world for over half my life. Many times, meeting friends again, I felt I had to fake knowing them, gently probing where we might have know each other, how close we were, the friends we hung out with. Hoping that these little nuggets of info would trigger my memory. One wonderful couple I had spoken with a couple times since running into them was most gracious when I finally explain that I have a broken brain and needed just a few hints about how we knew each other. God! Old friends, good times, and I don’t remember them. Even after their description of where we used to hang out and who our general gang of friends were, I just don’t have those memories. It also extends to new friends, folks I strike up a conversation with at a dock or anchorage. Names, I try but cannot recall, but faces, shouldn’t I be able to remember a face?  Is this the new norm? My brian surgery was years ago, the Cerebral Spinal Fluid leak just repaired or still repairing, we can only guess as there is no technology to measure my CSF pressure without endangering yet another leak. But when do I just wave a white flag and say “this is my memory capacity “?

Learning new skills is a hit or miss, post brain surgery. Pre-surgery I was very quick to learn. I was an operating room nurse at a major hospital. I also was loaned out to the Heart and Vascular institute when they required additional help. Daily, I was learning new procedures on a myriad of instrumentation and machines. In that world, the technique of teaching something new is to tell me what to do, show me how to do it, then I demonstrate how it’s done, and we are good to go. No time to practice, just absorb the knowledge and be sure that I can retrieve that knowledge when it’s needed, which may be weeks from that initial teaching moment. Ive worked in open hearts, robotic surgeries, and even neurology. Ive had gunshot patients, emergency situations where you must think faster then the normal fast and every step, every movement, could not be wasted.  Every movement critical to being a part of a team that was saving a life, stall and you stall the team. Make a mistake and you can derail the whole rhythm,  making others alter their work to pick up the slack. Post surgery, I have not ventured back into nursing. In fact, I haven’t been able to work as an RN at all. In the last year, I have taken up sewing, which I abhorred pre broken brain. And I’m very happy sitting at my sailrite making something for the boat. I free form most projects as I always make a mathematical error( it never fails) and rarely remember how I sewed something before. So each project, even multiple identical sewing projects like spray cloths can be different. At first this stressed me out and I endeavored to do the project exactly as before, but that was very defeating emotionally. So I don’t try to adhere to strict guidelines which as you probably know is a integral part of Nursing. Sigh.

Emotionally/Character:: the brain tumors/surgery/complications  has had one of the biggest impact on my emotional state and even my character. It’s strange, there are times I feel like a completely different person, alien in my skin. My spirituality pre surgery was I thought rock solid, I was known at work for being Zen, always knowing that there was a power that guided and protected me. Never letting a doctor get under my skin, much to the dismay of my nurse friends. Only times I ever butted heads was over a patients care. Post surgery, actually, I had some character changes before surgery. I remember, about three months before we found the tumors, a friend saying it was the first time she has ever seen me mad ( this was at work, I had worked with her for years). So there was some subtle changes presurgery that I chocked up to working too hard. But I also felt a drift in my spirit that I couldn’t explain. Post surgery I started to cuss, wished smoking a cigarette didn’t make me ill, got frustrated with new situations, hated surprises, saw my self as the adversary. I was my own adversary..? Strange. My perception of myself and of my behavior was very different than what my family and hubby thought of me. With a broken brain, it was very hard to parcel what was a legit problem and what was my faulty perception. Plus, we had the added factor of  the doctors claiming the meds or the high cranial pressure causes behavioral changes and I would regain my old self when these influences were removed. But a couple years into this saga I realized that my old self could be gone for good. If I didn’t like myself and my life, well no big deal really. But I did like myself, I loved my life, I felt blessed. 

I guess I need to mention that from my first surgery right up to December of 2014 when we left for the cruise, I was in constant pain. This pain was disorienting and unrelenting. Daily hard core head pain. At first the swelling of my brain from surgery was the culprit, then later the CSF leak took its toll on the brain. Unprotected my brain suffered mild concussions weekly, if not daily. This could definitely account for my loss of zen :-). I have not much to add to this aspect of my life, even though it was a major daily companion. Robbing me of sight, I was extremely photosensitive so had to wear blackout eyeshades. Robbing me of sound, I was extremely sensitive to sounds, loud sharp, multiple sounds at once, all forced my to wear ear plugs. Restaurants were out, utensils clanking, people talking, a sudden outburst of laughter

 


14 thoughts on “Erika’s Broken Brain Corner

  1. hi Erica, I sure hope everything goes well and that your cure is simpler than surgery. It seemed like CSF leaks affect everyone differently but yet same. I really hope you have a safe journey,. I guess I’m going to get nosy and personal for a minute if you don’t mind.. Do you have a religious preference. I never read where you mentioned anything pertaining. No matter how that is, I’m a Christian and your in my prayers.
    I get those headaches to. Mind are right between the eyes spreading to the forehead part.. it seems to be in the general area where they did my reconstructive cancer surgery from. I thought for a long time that is what was causing my headaches. I had very unusual coughs at night and sometimes cannot quit unless I sat up. it started becoming a habit that when I slept, I often slept in my computer chair. This was not fair to my wife but we cannot understand the coughs. Needless to say. I found out later that my brain would was going into my ear and running down my eustachian tub into my throat… I also found out why the weather changes especially rain my whole metabolism changed. Depression seemed to be a big one. could not remember and mast confusion…I would start. My heartbeat in every breath.. the only things they ever gave me that helped my headaches were things like Darvocet’s and other narcotic drugs. They did not want to give them to me and I did not want them either. But the problem was that headaches. The closest thing to over-the-counter that somewhat work was a Aleve… I ended up taking so many that they hurt my kidneys very bad. Needless to say, creating a new illness by trying to come up with a solution to another. I finally get the gets up to try something different that I had not thought about in years. I get my son to acquire a marijuana joint. I don’t know what it was about it. But it seemed to help a lot. I don’t understand a lot of medical jumbo. But I often wonder if why they started using marijuana as a medication. Sometimes we learn in strange ways.
    Praying for you in LA. If I could remove the headaches and take them all myself I would do so. I hate to know when people hurt like that because I have walked in similar shoes. I like your heading about the broke brain. I guess that’s just what I have. When the brain gets damaged from the lack of fluid. I understand there is no going back. it’s very Hard living a life a new way when you were accustomed to an old way… I miss my work, my focus, my concentration, and my lack of memories. old memories do not seem to be that much of a problem. But new ones disappear in the blink of an eye..
    once again Erika,, I’m praying for you and I’m sure many others are to. It be nice to get one of those hugs from you one day and as talk about CSF leaks as a things of the past… If I have many text errors here,,, I am very sorry because I use voice texting a lot because my vision seem to cause me headaches.
    James Mc

    • Howdy! Sorry it takes so long to reply. As far as religion, I associate most with Quaker. I love Jesus. I also love exploring and learning from other spiritualities ( Sufi, Greek Orthodox, Unity). I’m a bit “lost at sea” as my illness has kinda knocked me off course. But, I know God carries me in the palm of his hand, even if I don’t always feel it.
      Hope you are doing well.
      Hugs 🙂
      Erika

  2. Hello Erica! I am very new here on forum, swept by site months ago but was always so down n out and in pain could never muster up energy to follow forums. But i am better and back. Not fully recovered , but back.
    I am inspired by your story, interestingly I started a blog on seeing the ” beauty in the beastly brain world” lol… I really do/did try to see the beauty in the mess!
    My story is they can not find leak, Spain resident, no way I can do Duke or Sinai $costs….I was told to stay on bedrest ( 8 months now!) and it will close on its own! I do believe it had closed a couple of times, but i broke it by straining and laughing!
    I lay around writing, reading and praying! My blog also tells of the mighty grace of God that keeps me in His hands thru all of this! ( i’ll prob write James -reply above, also!)
    Praying for you and everyone, hoping to get to know most on forums! Jesus truly is the amazing God, provider, healer, and friend in all the fire! This horrid turmoil surely refines and makes us tough as diamonds!
    Also would love to subscribe to your blog for updates, and if you know of anyone else who shares their story on their blog?

    Regards and blessings,
    Maura
    http://www.beautyseeker.blog.com

    • Sorry so long in reply!! I hope you are doing well. I love your smoothie recipes!! Just made a blueberry strawberry yogurt smoothie, yum.

      I started diamox 3weeks ago and it has completely changed my life. Even though I have a slow leak, I have high pressure. If you are confused you are in good company!

      My hubby says it best. so here is a quote from his discussion with DrPatil on why Diamox.

      “Patil stated that you do not have a fast leak, or it would have showed up on the MRI.
      A slow leak will heal itself if you have normal pressure.
      That means that if your symptoms are caused by a leak, you must have high pressure. Diamox should stop the leak, and once it is stopped, it will heal itself in time.”

      So now on week 3, my head is fine, back to normal!!!! BUT diamox causes memory loss 😦 tingling in hands and feet, fatigue. But I gladly take it over the condition I was in before! Ask your doc about it, I will try to find some research papers to support this theory. I’m on 250mg every 8hours.
      Hugs
      Erika

  3. Erika! This is Angi, your Massachusetts friend of days gone by! Would love to hear from you, it has been way too long! Please contact me at your convenience at izzybaby55@hotmail.com… Wishing you all the best!! Xoxo

  4. So sorry to hear about your continued problems, Erika. Will be thinking of you; I had brain surgery twice and had CSL leakage after a CT scan with contrast and the second surgery but thankfully the patches worked. Thanks for reposting your dog potty mat this morning on WWS. I’m an MD myself, e-mail me if you need a referral for a great surgeon and/or pain center. Take care, Corine

    • Thanks for the kind words and offer, hopefully getting my high pressure under controll will solve my leaky problem 😉. Hope your puppy likes the pee mat!

  5. Erika, I really hope you find time to read my post to you. I had posted my CSF issues once on CSFLeak.org back on Dec 20, 2012 and you replied which I thank you for that. If you can go to that site I see the post is still up (I didn’t want to repeat if you are able to find it) But I had to do a search using my diagnosed condition of ” Meningoencephalocele” which I still can’t pronouse it correctly. It was then I saw
    my post still there with other replies. I picked yours out cause just tonight I read your web journal. I wished I had noticed it much more sooner and that I want to start a journey of some type. As you read more then u will see why I think I need something like u started.

    I’m writing you (2:49 am) is because I think the leak is back and can’t sleep. My two craniotomies were Nov 2010 and four months later March 2011. But something is changing and I think you can appreciate those types of feelings.

    There is so much I need to write in hopes someone like you can give me more information about what you have had to go through and still going through. Specifically, what have/are you going through AFTER the surgery. The balance, forgetfulness, etc.

    My Neuro-Surgeon and specifically my ENT doctor who found my problem saved my life. I know you can appreciate that statement and know it not an overstatement. Had it not been found, I was told it would been a matter of days. Once my ENT doc who was doing surgery on my right ear to removed Chestotoma saw dead brain matter and a small protrusion of my brain that was caused by Chestotoma he then called in the Oncall Neuro-surgeon of the day that happen to be one of Athens, Ga’s best.

    As days went by while in the hospital I learned that I had great docs looking after me but I also learned I was their first case either had with my diagnosis. Nurses, student nurses and student doctors, and some regular docs would often show up at my ICU bedside and want to hear the story. Especially how it was found and thought I was very lucky.

    Looking back, I had no idea of what I should be concerned about. What I was told at that time they didn’t see any leaks and made repairs of what was exposed. This was Sept 2010.

    After going home, really thinking about it I did more research and learned things I should be asking but the docs were honest and said they thought it was fix and I just need to tak it easy while it healed.

    Then by end of October the headaches were Bad! I have been one who never had problems with headaches and I soon understood a little of what ones maybe with migraines go thru. Big eye opener!

    Ericka, I know this is long but I do hope u read because I would like to hear from you. I need to say this, I actually only had my ENT to talk to if I had questions because I learned the Neurosurgeon who was on call didn’t take my insurance. And even if he did, I had to wait six weeks before I could see him even after he had done surgery on me. Six weeks went by and my insurance didn’t approve him until three hours before my appt time with him. That is the truth and it took my ENT to push the issue up to that point. So from Sept to Nov I did a lot of research. My now ex made a statement that I shouldn’t be researching like I am because all I’m going to do,is convience myself I have issues which I may not have.

    That statement from her was hard for her to swallow. What I mean, I knew the headaches could be due to leaks and knew if I laid down and the headache stopped then that may be a sign of leaks. I mentioned this to the ex and got same statement that I’m looking for problems. For me, I thought I could deal with the headache but I was not ready for the sure sigh of a leak.

    Ericka, I read that sometimes the fluid will build up and drain from an ear or nose is the two places I remember in my research. I had about a week left before my first office visit with my Neuro-Surgeon. My surgery was right ear and right temporal lobe so I shouldn’t have been surprised when I actually leak fluid from my right nasual and it happen when I bent over to feed the cat. I was 48 yrs old at the time and knowing what I read and why fluid was coming out made me realize this could get worse before better.

    Now, all I could do was learn more about what happen to me by whatever I could read. Ericka, if I hadn’t found that fluid could come out with those with leaks then I would have thought nothing of it other than it must be allergy making my nose run. But when it happen I knew what it was because it felt like a lot of fluid and the effect is nothing like it is just sinus stuff. My info and examples I provided to my new doctor convince him enough that I was in ICU starting with a lumbar drain in hopes that will heal the leaks. I left the ICU two weeks later with high hopes and the following week the headaches were worse than before. By end of Nov my doc had fixed 4 leaks. Four months later, the headaches, the drainage just started. Doc repaired three other areas that time.

    If you would share anything you are dealing with physically and mentally. This rare disease took my job, I let the pain get me hook on pain pills then, and depressed not just from two major surgeries, not feeling I can provide for my family, then forgetting things, especially short term. Balance is bad. I will say my wife and kids told me that I used the surgery and I just need to “snap out of it”. Since those comments, I learned from my psychologist that just having that type of surgey will make anyone depressed. He would be worried if I wasnt depressed. So adding losing my job, which was my second career job after retiring from the Air Force and me not ready for this life change while my family members went on without me.

    I am not blaming my family because they didn’t understand. what I hope I can get from you and any others that experienced similar dieases is what have u delt with, is there a doc who may have a little knowledge, but I rather first hear from any of people like us who have went through it and wants to share. This disease WAS the cause of me losing everything. That everything is my family, house, friends, dog. What if a family member found a website (that we never had) that might helpe the family understand or try to understand with the info provided.I haven’t even found one professional who can share what they think because they the knowledge. They want to learn but as for my disease they don’t know where to start.

    • Randy, I’m sorry for the delay in reply. I’ve had a cold and wasn’t checking my emails.
      There is so much I want to say!! You are spot on, it is amazing how this condition effects every aspect of your life!! I think we should talk via email if it is ok. My email is oceangirlcd30@yahoo.com.
      Dr Schievink at Cedars Sinai is great and very up to date with us leakers.
      One thing that was unique with me is schievink kept saying I had another leak, ( I’ve seen him for years), but we would patch with no success. I went to a local Baylor Neurosurgeon dr Patil, who took a different approach. He thought I had HIGH pressure which was why I kept blowing out my patches and repairs. Śo I was leaking, displaying low CSF symptoms but I had high pressure!!
      I’m now on diamox which lowers my ICP. We are at a wait and see. I can be active, but must rest every couple hours. My neurologist in Houston is also a Baylor doc, Dr Das. I can say I’ve improved dramatically since the diamox. Also, don’t dis pare about the balance and cognitive Issues, they will get better as you get better. My last neuro metric showed no brain damage or deficit 😀. I’ve had bad neuro metric reports so this was proof that the. Rain can come back!!!
      Anyways, wish I had a magic wand that gives others an understanding of this complex and sneaky condition but considering the leading experts are flying blind a lot, it is an up hill battle.
      Look forward to your email.
      Hugs
      Erika

  6. Hello Erika,
    I stumbled upon your blog via scuppers. I want to thank you. I have been dealing with memory loss, pain, muscle issues- as in not wanting to work right, forgetting words in mid sentence, driving and not knowing where I am but knowing I should know. It’s scary. Brain tumor is gone but this all lasts. I’ve not gone back to the dr becuase I won’t do chemo again. I thought I had to live like this so I just deal with it. The drs here just said it might get better it might not- so I just gave up. Thank you for being open and sharing, I just quit looking for answers.

    • I hope you find your answers! It is pretty amazing how little we know about the brain, how little dr know. We pretty much have to explain what CSF leaks can manifest as, how brain surgery itself can knock us off the tracks long after the rumors are gone and wounds healed.
      We really started getting traction with my treatment when we went to john Hopkins, Cedars, and then Baylor in Houston. Teaching hospitals are the way to go, research facilities too. If you spot a research article that might pertain to you, track down the author, that dr is likely to be very interested in hearing your story. Researchers are seeking more knowledge. Doctors with a big busy practice and fancy waiting room tend to only want to write me a script and see me in three months. A two week trip to Cedars in California did more for me then a year with the local run of the mill neurologist.
      Anyways, I’m glad my blog helped, you’ve inspired me to updated it :-).
      Hugs to you!
      Erika

      • Hello Erica my friend ..I am so happy to hear you are faring well so far.. I doubt you remember me because I do not think we’ve had contact in over year… I am the one who had the CSF leak caused by Emory hospital doctors that refused to acknowledge and repair the problem… When I fell back on the veteran’s hospital file. The same doctors existed there.. I still have bad headache and nothing I can do.. They put me on a medication and I swear is making these headaches worst and more frequent.. I would just about swear they were trying to kill me off.. What better way to get rid of a problem.. My memory in extremely poor and cannot hold any sort of thought pattern. Had been searching the net for a any sort of records that might have pertaining to pass medical history to maybe turn this over to the VA secretary general.. I came across you and one that you are doing there. still praying for you. James ( Jason ) McCord
        PS Please forgive all my typo errors for me to try and stare at the board hurts so I tried to voice text

      • Hello my friend!! All I can say, and I KNOW it’s lame, but, Hang In There!! Keep pursuing, you don’t have to make great strides everyday, just pick one thing, one action that can lead to getting the right DX, the right treatment. Be it an email, or just logging in a journal what is happening to you that day, one or two words is all it takes.
        I promise it gets better. After my brain surgery there were times I was as close to hell as a beating heart could get. It’s crazy to say that, surrounded by loving family, a loving husband, but it’s true. It’s as if we have two lives, an outward life full of good things, simple pleasures. Then there is the broken brain life. Confusing, hopeless, helpless. I don’t think anyone can relate unless they have walked through this. We all struggle, but when your brain is not your own, it is a whole nother ball of wax.
        Man I remember the drugs!! It’s as if they (docs) think we are test rats, that the side effects are just words, not real. Have you checked out the CSF forum? ( csfleak.com) some good reading and a great place to get info, even find a local leaker that might be able to give you some tips, refer a VA doc, etc.
        Jason, you have my email right? My memory is, well, you know :-). I thought you had it. We will be out of Internet but can get email every few days. My email might if changed due to getting a new iPad, but I know my old email still works (erikajacobus@yahoo.com).
        Sending a thousand hugs your way!
        Erika,

        PS
        That voice type app is pretty cool.

  7. Hi there Erika 🙂 I found your site through the CSF forum. I was wondering if you are available to reach through email? If so, I believe my email should come through to you when I fill in my details. Thanks!

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