Venous Abnormality or Where Have You Been?

For the last six months or so, Christen has been suffering from debilitating headaches that have been accompanied by nausea and dizziness. She’s had migraines since she was twelve or so, and at first we just thought they were getting more prevalent. Possibly that her preventative medication was no longer as effective as it used to be.

The headaches started by lasting longer than normal migraines, and her migraine medication didn’t help at all. A several months ago she had one that lasted days and ended us up in the ER.  Since then we’ve been back to the ER several more times, between doctor appointments and tests. It’s been a really rough few months.

First, the doctor thought it might be tension headaches or possibly a sinus issue rather than migraines, since migraines don’t usually last days and there was clearly lots of tension in Christen’s upper back, shoulders, and neck. She sent Christen for an x-ray of her head to look at her sinuses, and when that looked fine she prescribed her a muscle relaxer to try. It didn’t seem to eliminate the headaches, but it did seem to help relieve some of the pain and maybe even shorten the duration. It was far from a fix though.

Arteriovenous Malformation (AVM)
Arteriovenous Malformation (AVM)

Instead of getting better, the dizziness got worse. Her doctor sent her in for a CT. When the results came back, the doctor called us to let us know that something did show on the scan. It was around 1cm in size, and while there was no way to know without an MRI, she thought it could possibly be an Arteriovenous Malformation (AVM).

Of course, being the person that needs to know everything, I immediately began to research AVMs. Basically, it’s when the arteries, which take blood to areas of your body, are connected to veins that take blood away from those areas and back to the heart. This can cause blood not to flow properly to certain areas, in this case part of the right side of Christen’s brain, and can also cause bleeds, strokes, etc. The solution? Brain surgery.

Yep, let that set in for a moment. It certainly took us a while to come to grips with it. The thought of brain surgery is terrifying. Unfortunately, there was really nothing to do but wait. So we waited for the MRI.

There was yet another ER visit between the CT and the MRI. They diagnosed her with a severe headache and vertigo, putting a medical term to our complaint of “dizziness”. It was a tough ER visit, mostly because her mental state had deteriorated noticeably. It has gotten harder and harder for her to think and function during these episodes. The doctor in the ER said that her fine motor skills were “troubling” and seemed to be very happy to hear that we were already scheduled for an MRI, encouraging us to follow up with a neurologist no matter what the MRI showed.

So now the MRI has happened and we got the results. The vagueness is infuriating and frustrating, but she has a “venous abnormality”. An AVM is a venous abnormality, but there are others as well. So basically, we know there is definitely an issue with the veins on the right side of Christen’s head near her brain, but not much more. We’re working on getting an appointment with a neurologist now. I talked to several today that are booked through July, but I’m not willing to just wait that long. We’re looking at alternatives.

So if you’re wondering why I’ve been less active, quieter, slower responding, etc lately. This is probably why (and the issue with my grandma that happened during all this), and unfortunately it’s not over yet.

YAERV (Yet Another ER Visit)

Banner Estrella
Banner Estrella

For those that don’t know, we ended up in the ER last night again. Not one of our better visits, but certainly not one of our worst. We’re still trying to track down what put Christen in the hospital in September, and we’re seeing a specialist that has done a lot; lots of blood tests, several CT scans (I think three in the last few months), she’s had a colonoscopy, and yesterday she swallowed a camera (that was amazing)! I feel like we’re making progress, but she just had a bad fit of pain and nausea the last couple days that culminated yesterday. It’s the same stuff she’s been dealing with since September, but it was way worse yesterday so when we got the stuff from the camera removed (they hook the receiver box up to you like an EKG) her specialists office recommended we go to the ER.

The wait was the worst, but we knew it would be as soon as we walked in. The place was packed, every seat and wheelchair was taken and people were standing. When they checked her in (took vitals, asked about problem, gave her a wristband, etc) the nurse gave her a couple Zofran under the tongue for the nausea. They took a little of the edge off at first, but we were in the waiting room for three hours before we got called back. It wasn’t really their fault. Against all reason the place actually continued to fill while we were there. The ER actually had to throw a code purple, which basically is a call for help. They bring in additional people, send messages to other hospitals that they could use extra personnel and that the hospitals should only refer people to them if there’s no other option, etc. At the rate things were going, I was worried we’d be there until morning. I knew what kinds of tests they run on someone with severe abdominal pains and nausea (been there done that), and they take a while. The worst part is, we’d already been through all that (several times) so I thought it was going to be a big waste of time. I didn’t need to worry.

Once we finally got called back, we got to see the doctor. His name is Dr. Clever (while it looks like clever it’s said like cleaver…I still think he’s quite clever) and we’ve seen him there a few times, including when we came in for this very issue last September. To my surprise (and relief), he actually said “there are a lot of things we are really great at here in the ER; finding a diagnosis the specialist missed probably isn’t one of those things.” He continued to say that he’d like to just get Christen through this particularly bad episode so that we could continue to follow up with her specialist. I was ecstatic. He ordered an IV for fluids, morphine for the pain, and Zofran again (this time via the IV, which is much quicker acting) for the nausea.

We then went into a waiting room in the back (they definitely didn’t have any beds), hung her IV, and waited. She slowly started improving. We actually met this nice older couple, who live in Minnisota during the summer and here during the winter. The man was the one checked in, and he had never had to go to the hospital/ER/urgent care in his 73 years. All in all, he was doing pretty good and was quite an interesting person. We talked of pets, kids (they have kids and grandkids in both places, which is why they spit their time up), and even literature. He told me about this short story he had read that was written in China in the 1930s and translated to English more recently. The story was about medical procedures in the year 2002, and portrayed the doctors as shrinking themselves and travelling inside the patient to fix him from the inside.

After a while I needed some coffee (surprise surprise). Unfortunately, I know the place pretty well and I know where the coffee for the staff is, where they keep the cups, etc. I’ve been told every time that I can help myself, but I always ask anyway (buttering up the nurses with “please”, “that would be so great”, “tank you very much”, etc doesn’t hurt either…they don’t hear those phrases a lot). This time it paid off because said that the last half pot had been on a while, and asked me if they could make me a new pot! When I returned, the older man’s wife asked where she could get some, so I explained the system and took her back to get her a cup. They’d been there as long as we had, and with no coffee! I guess there are some advantages to being a regular at a place, but I’d prefer to stick to being a regular at Ground Control. It’s more fun, has better food and drink, and is less expensive!

After being in this latest waiting room for about an hour and a half, her pain and nausea were getting back to nearly manageable levels. We decided that when her IV bag was empty we’d ask to be released (they like you to talk to a doctor when we leave), but that wasn’t necessary. About 15 minutes later, when the back was about 90% gone (1000ml bag, marked with dashes in 100ml increments, so it was almost EXACTLY 90% gone), we got called back to see Dr. Clever again. Her pain and nausea were manageable, so he sent us home with a prescription for Vicodin in case she needed it.

As her pain had come down though, she had realized that she was starving. To prep for the camera, she wasn’t allowed anything but clear liquids the day before and up until noon that day. At noon she was nauseas and in pain, so she tried to eat an English muffin but couldn’t really finish. Basically, in two full days she had eaten less than one English muffin. We picked up some soup from Village Inn on the way home (there’s not much open after 10pm on a Monday).

Today she’s feeling more like she has for the last few months: “Not great, but things are manageable.” We’re definitely looking forward to the results from the camera capsule. More than ever I want it to return something definitive. I’m really sick of not knowing what’s making her sick!

Blood Clots Again?!? Hopefully not

Christen went to see Dr. Kapur today (even though we see him all the time, he’s still Dr Kapur not Vikram…it’s like your teachers as a kid) because her ankle and calf are still hurting her from when she rolled her ankle on the way into church (Dec 18th). He wasn’t very happy that she waited a month, and he was even less happy that the pain extended all the way into her calf. He immediately got her into a place across the street for them to do an MRI of the ankle and a doppler ultrasound of the calf to look for blood clots. Please pray, last time this happened it was the scariest week in the hospital ever! The worst part is, this is one of her first doctor appointments in the last year where I didn’t go with her! The good thing is, the doctor did listen to her lungs and said they sounded clean (probably no clots there).

I’ll try to keep everyone updated.

Christen’s GI Followup

As many of you know, Christen was in the hospital in late September of this year. When she came home she was on a bunch of medications, which seemed to work as she was getting progressively better. The doctors said she wasn’t healing as quickly as they would have expected, but even though she was going through cycles of getting better and worse (get better, then a little worse, then better, then a little worse, etc), we weren’t too worried because at least she was getting better.

That went on for a few weeks, but about a week ago she started into a dip of getting worse and hasn’t really pulled out of it. Instead the last few days have been really rough on her. She’s in a lot of pain and has been quite nauseas, so we went in for a followup appointment with the Gastrointestinal Specialist that she was seeing while she was in the hospital. First we were quite impressed with Dr. Rodriguez because he was able to remember every detail from the hospital a month ago (not just stuff he could have learned from reading reports, etc). Unfortunately, he was definitely worried because if the problem had just been an acute infection (as had been diagnosed at the hospital) it should have long since gone away with the antibiotics.

After talking to him for nearly thirty minutes answering questions about her medical history, the frequency and location of her pain, the timeline since the hospital, etc, he gave us his plan of action. Now let me stop here to say that this is my kind of doctor. He didn’t say “let’s try the antibiotics again” or even “it’s probably just _____, we’ll treat it with ___”. Instead he laid out several tests and a real plan for action.

He said that while he did think this was serious, he wanted us to know that he didn’t think it was any kind of cancer. Instead, the three most likely things would be Crohn’s disease, Celiac disease, or Ulcerative Colitis. He ordered a CT scan stat (she had one with contrast and one without in the hospital, but this has something different that will let him better see the intestinal walls), and the hospital called us this morning and scheduled it for today at 4pm. She will also go in for a colonoscopy on November 19th, and she has a lab-test list that’s two pages long*.

He gave Christen a few medications to try to help with the symptoms in the short term; Phenergan for nausea, Librax for the cramping pains, and Flagyl to make sure there’s no lingering infection. He stressed repetitively that if the pain and nausea are too much to handle with all these tests, he will admit her to the hospital for a few days and handle everything inpatient. Hopefully Christen will feel a little better with these meds, because I’ve had my fill of hospitals.

*The lab tests he requested that I was able to get down (I’m sure you’ll want to know Stacie):

  • IgA level
  • Tissue Transglutaminase IgC/IgA
  • Iron, Ferritin, TIBC
  • Stool O & P
  • Iron Saturation
  • Anti-sacharomyces cereviciae Ab IgA, IgG, and IgM
  • CRP
  • Stool electrolytes (Na, K, CL)
  • pANCA
  • Folate Level
  • Chromogranin A level N
  • vitamin B12