2,191 Days
- mycorneroftheworld
- Aug 25, 2018
- 12 min read
That's how long it's been since I've been having daily head pain of at least 6 out of 10. 6 years is a long time and the past 11 months has been the longest.
To celebrate this anniversary I hate having, I am hitting publish on a blog that I have written countless times but deleted every time. I didn't know how to sum up the past year without sounding like I was losing it or I was giving up because I wasn't. I also didn't know how to write it all without revealing too much about some people who may not appear very nice when I tell it.
Then this came up in my FB memories...
So I decided that 2,191 days after my head pain was documented in my medical file as starting is as good a day as any.
So here's the past 11 months from my perspective. I divided it up into sections because it's long and I had some timeline memory issues once my shunt was removed.
It's going to be a long post but this past year and a half has been a long ride.
An early 2017 recap...
After years of being "threatened" with a neurosurgical consult, my nephrologist was my backup in telling neurology we just need to get on it. So I finally saw a neurosurgeon in July. But my story started getting to that point much earlier in the year.
By the time I got to VP shunt install surgery in September, I had already been hospitalized 10 times in 2017. I spent who knows how many others in the Emergency Room and was sent home. 2017 was a crappy medical year but also a good one.
Once I was finally diagnosed with Intracranial Hypertension, I spent years trying to say that my blood pressure issues had to be connected. Despite my best efforts to explain the pattern, I was constantly told I couldn't possibly be medication compliant. I was very compliant. I took my meds almost to the minute the same time every day. I took my BP in the same windows of time each day so that my cardiologist could adjust timing of meds. But no matter what I would do, I would have times being on even 6 meds couldn't touch. I could sit in the hospital and be given the same meds plus additional and they would still insist it was me being non-compliant. I would also have sections of time where my BP would crash low that they would say was my meds working (and the patient being compliant) but I kept saying it's related to the IH. I knew it was.
In early 2017, I accidentally proved it was related when I went in for an outpatient LP (that I demanded after several IH patients I knew had passed away after being told they were fine like I was constantly being told). I had low BP for weeks and had come off one med already. That morning it was a little higher but still under normal BP numbers. No matter how many LPs I get, I still get LP nerves and it jumps my BP a little. It was one of the easiest LPs I've ever had until I was in recovery. They kept taking my BP and it just kept going up. They called the ER to tell them transport was bringing me over then it shot up so much they took me instead. I spent 11.5 hours in the ER with 5 roommates who all got to go home before me. They never got my BP down they just got it to stop going up. Cardiology said I proved my point but don't do that again. And he sent me to nephralogy to handle my BP because as he agreed it's definitely related to my IH fluctuations in some way and that not his specialty.
I ended up not getting the to nephrologist he wanted me to see because I was randomly assigned to one in the hospital shortly after. I love my nephrologist I ended up with. If you have chronic illness, you may have the wonderful "it must be in your head" conversations when something a doctor things should work doesn't or they don't have an answer. Those conversations have taken to me to mental evaluations many times. Every time, the person sends me back saying nope, she's fine. I do into them saying, I'm cool with something mentally being wrong. I know they see it as a threat to send me but I don't see it that way. In fact, threatening patients with it I find to be part of the issue with people not seeking mental help (but that's a post all on it's own).
The first time I saw my nephrologist, she said before I left that we weren't going to let drs insist something was mentally wrong with me anymore. She said that medicine isn't black & white and if they knew everything about medicine, they wouldn't need all these drs because everything would be cured. Which makes sense to me but I'm also the person who keeps getting told I must be doing something to make everything off.
After a few arguments with doctors and my nephrologist realizing how hard my medical team was to work with sometimes, I ended up with another LP and a neurosurgeon consult.
July-August 2017...
I ended up with an outpatient LP that became an inpatient one because by the time I was finally on the schedule, my BP had hit a high cycle again. Despite best efforts to get it down, we couldn't. I had gone on my neurosurgeon consult the day before and he was waiting on my new LP opening pressure numbers. After weeks and weeks of not hearing back from the neurosurgeon, I got a date for the VP Shunt install.
Looking back, I should have taken the phone tag then as my second sign that I wouldn't work well with this neurosurgeon. I don't expect phone calls back that second but days and weeks of messages is a bit much. My first sign was my first instinct when I got referred to him from neurology and I googled him. I texted someone and said google him. I don't need that kind of drama in my life. If I want that kind of drama, I can just watch people argue on periscope. But I went with him anyway. I should have just gone with that first instinct.
But I saw this as the opportunity I had been waiting for...the meds hadn't worked in 5 years and I was getting worse while adding new symptoms in so I ran with this neurosurgeon.
September-October 2017...
I finally had my surgery date and I woke up from surgery feeling amazing compared to how I felt when I went to sleep. I had an amazing first 36 hours. I wasn't pain free by any means but I had much less pain. The first 36 hours is probably the only time that I went below a 6 in pain in the past 6 years.
I woke up and got sick in the night. It was almost like whatever was working turned off. I felt worse than I had before surgery. A resident came in a few hours later and turned my shunt to drain less but it didn't help. To add on to the craziness of being back to where I was...I had to go on my cane full time because I walked leaning to the right.
I got discharged that way and kept getting sent back to the ER and dr by my insurance company and other drs. It took 6 weeks of scans to get to a shuntogram. Part of the reason is the same issues as before, it would take a week or two and 5 or 6 messages to get a call back from the neurosurgeon's office (pattern? yup, it's how he works). The neurosurgeon said it was the last test he was running. He called me a week later and said I was right, the shunt wasn't working correctly. The proximal catheter wasn't doing anything. So a revision was scheduled.
October 2017...
I finally had my revision surgery. I thought I would wake up the way I did the first time. But I didn't. I was so frustrated when I woke up and felt the same. They tried to shunt tap bedside and couldn't even suction anything out. The did an LP and my OP was still high. The neurosurgeon scheduled another revision for the following week.
The revision surgery was worse than the install. The 2nd revision was even worse. I cried in a ball for the first 20 hours. My nurses said I cried in my sleep. It was pain but also frustration because nothing changed. I came out again feeling the same as I went in.
I got sent home a day later but only to be admitted again the next week for a bolt trial. Having another hole drilled in my head wasn't high on my list of things to do but I did it. Because it didn't show high pressure or fluctuations, my neurosurgeon sent me home saying I was fine.
October 2017 - June 2018...
I don't even have a count unless I go through my insurance of how many times I was at my local ER, main campus ER or transported between them. I got worse and worse while my neurosurgeon kept saying I was fine. Because of the IH symptoms throwing my off, the POTS symptoms got worse and what had been diagnosed years before as pseudoseizures (now it's been determined to be something else) got way worse. At some points, I was passing out from who knows which 10 or 12 times a day. I woke up once in the middle of the night on the floor of the kitchen and didn't know how I even got there. Post revision and bolt trial, I also started passing out in the middle of sentences when talking.
At one point during a hospital stay, my neurosurgeon convinced the pain management dr I was crazy (which wasn't the first dr or the last he convinced of this) and they sent in psychiatry. I'm not afraid of being crazy. I've sat through evals before, I sat through one after, I'm cool with them. If I'm losing it, we can work on that. But just like every time before (and the time after), there was nothing mentally wrong. The dr said the same that I did that I was frustrated with my drs. But by this point the neurosurgeon had tried to convince so many people I was losing it that I called psych back and said can we try something to get everyone off my back. So I went on a med that actually made symptoms they were trying to "fix" worse. And I weaned off after a few months.
This entire time I know something is wrong and it's like my neurosurgeon doesn't want to admit that something could be wrong and I am right again. But I know my body and I know that something is off. So I kept pushing. He gave me a list of hoops to jump through. I saw management and a headache specialist who didn't know what the other said but other said that it's my shunt not working or not working for me and they can't treat anything else until the neurosurgeon does something with that.
After months of other neurosurgeons declining a consult when I or someone from my insurance company called, the pain management dr suggested a neurosurgeon who knew my neurosurgeon and said if he declined, the pain management dr would talk to the office about it. I get the consult and that neurosurgeon says mine is playing it safe which is normally the right road but everything points to he's going to need to explore and revise the shunt so that's the consult recommendation.
My neurosurgeon orders the shuntogram again. I begged for the shuntogram for months. He said no, I was fine. I would beg again for it, he said no. Now he wanted the darn test I asked for that proved it wasn't working before. I wanted scream. Instead I went with it because I needed him to do something.
Guess what? This shuntogram showed the same part of the shunt that wasn't working before isn't working now. I only know this because he told an ER dr this who was nice enough to put in my discharge report. Because this story changed even after he verbally said it to me later. But the neurosurgeon said he was going to schedule the exploration when he came back from his week off. That didn't happen. I ended up back in the ER and transferred to main campus where they did a tap (high opening pressure still), couldn't shunt tap again, and every resident insisted that my shunt was working fine despite me having paperwork that said it wasn't.
Every day they said they were sending me home but then kept me until my neurosurgeon came back and no, didn't do the exploration. He did another bolt trial. I argued about it but I was told by the night resident that if I didn't do the bolt again, he wasn't doing the exploration surgery. So I did it. But he didn't. He said I was fine and refused to acknowledge he ever said the shunt wasn't working correctly.
I also developed a new issue. Every 20 minutes, it felt like the shunt valve reservoir was force evacuating into my head. So I called and asked to have my shunt removed. Which was always on the table. I just wanted it out already.
It took weeks and my RN advocate calling to get a surgery date. A surgery I didn't have because anesthesia deemed me unfit for surgery for things my neurosurgeon knew about before surgery day.
I get send back to the hospital multiple times and my nephrologist, the ER drs and hospitalists keep trying to get my neurosurgeon to take me back at main campus and he continuously declines. His secretary also doesn't return my or my RN advocates calls to schedule new dates for surgery. We stopped counting at 50 unreturned calls between the advocates and I in 2018 alone.
They tanked my BP to make me fit for surgery and my neurosurgeon just wouldn't schedule the date and no one else would operate on his work. So I was stuck waiting. In the meantime I did end up with new autonomic testing and an ambulatory EEG which both showed some things they hadn't picked up before.
Around the middle of June, I was in the hospital with the tanked BP and my head pain changed. Post surgery, this time frame is lost to me. It's all fuzzy. I remember very little but know from scopes and conversations I had with people that my head pain changed and a buzzing also started. I don't remember any of that. I know that they tried to have me transferred and my neurosurgeon declined it again. Hopefully, I will eventually remember this 2-2.5 weeks but right now it's a blur.
July -August 2018...
After weeks of trying to get another surgery date and running on empty with low BP to get me there, I finally had my VP Shunt removal date. I think I was excited but just like the 2-2.5 weeks before, I don't remember this morning or going into surgery at all.
I do remember waking up.
I woke up and they asked me standard neuro questions. I thought it was September of 2017 and my shunt was just installed. The more they told me I was wrong, the more frustrated I got. 7 weeks later, my brain still says 2017 first when someone asks me the year. Or September when they ask the month. I have to stop and think.
I woke up with head pain (in addition to surgical head pain) that might be new or might be the same because I don't remember that head pain right before surgery. And the 10 months before became a blur. I remember things if I'm talking about something but I will stop mid conversation because my brain says wait, how could that happen if it's still September.
In between keeping almost no fluid or food down since surgery, I've also made it to the autonomic specialist to try to figure out what else is happening besides just the POTS. The ambulatory EEG showed that my heart rate is jumping way up before coming down and I pass out. I went for a brain MRI (follow up MRI the radiologist recommended in a couple weeks) the autonomic dr ordered because of the change in head pain and memory issue.
So here I sit after a year (listed here in extremely edited form).
The 10 months between the install and removal are a huge jumble.
The 2-2.5 weeks before removal surgery are almost completely gone.
Removal surgery morning I don't recall at all.
Waiting on a radiologist recommended repeat MRI because the one I had is abnormal in a spot below where they were initially looking.
My POTS is way off and passing out is multiple times a day because I'm not keeping enough fluids down and while I can have fluids on order my veins are so bad that without a port it's 9+ sticks to get an IV that will last only a short time.
There is some other autonomic issue happening that they haven't figured out but I am passing out without changing position so it's something in addition to my POTS.
Half the tests we need to run we can't because I'm too dehydrated to run them and guarantee accurate results.
I'm basically back to where I was this time last year just worse which stinks. It's like the last year didn't happen other than I have holes from having my head cut and drilled into 6 times in 10 months.
This was a lot longer and I may break it down into smaller sections later and be more in depth. But my neurosurgeon was a jerk. If I went into too much more about him or his secretary, it would make it too easy to narrow it down. If I could tell everyone every single story, I would. But now isn't the time. I can say that in the end all of his trying to convince his colleagues that I was crazy got me sent again for a mental evaluation. We made it to page two in the questions and again I was told nothing was wrong. There was no crazy, there was no anxiety, there was no depression, I have excellent coping skills in place. She did however become frustrated with my doctors after two stories about why I was frustrated and agreed with it being frustration.
So I'm taking some time before I reload on seeing another neurosurgeon. I'm working on replacing a few drs. I'm giving it time to process fully before I decide what I am doing. But September is IH Awareness Month so I do plan on going back to my regular daily posts about IH then.
Be good!
Be happy!
Try to be a difference in someone else's life!
💕
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