Sufferin’ with IIH Saturday

Thursday Liz had an appointment with the neurologist to try and get her migraines under control. With Idiopathic Intracranial Hypertension (IIH) migraines can be a part of the condition. However, Liz has been suffering with daily headaches for over a year. Some days she spends the day in bed because the pain is that horrible. The first neurologist she saw, while a “headache” doctor, really had no experience with IIH and we felt like we were wasting time seeing him.

After her hospitalization in December, she was finally able to get an appointment with THE neurologist at Hopkins that deals with IIH. He reviewed all of her records and her headache history. He is not 100 percent sure that her shunt is draining properly. The patency test in December showed the shunt to be drainint at top level of normal, so he was concerned that it might not be draining properly.

He changed one of her medicines back to diamox to see if that helps control the level of spinal fluid and thus the pressure and the headaches. If this doesn’t work, we are looking at another couple of days in the hospital for pressure monitoring (again).  Based on those results, Liz could be looking at surgery (again) in the near future to replace the shunt hardware with something that will provide more control for fluid drainage.

In addition to the medicine change, we are going to try the Low Tyramine Headache Diet to see if there are any food triggers which are contributing to the migraines. Since there is a family history of migraines, he figured this was another tool in the arsenal we should try.

Trying to figure this diet out is going to be very interesting, but it could turn out to be blessing in disguise. Liz cannot have chocolate, caffeine, artificial sweeteners, fresh made yeast products, aged cheeses, any type of processed meats, fermented products, any nitrates/nitrites, limit citrus fruits to 1/2 cup per day, MSG, or Vegemite (THAT one won’t be so hard to avoid). We also need to limit or eliminate as many additives and preservatives as we can.

Overall this where I have been moving the family’s diet anyway, this just gives me the push and motivation to get us totally switched over as soon as I can.

I hope you all have a wonderful rest of your weekend, while I try to figure out a new menu plan for the family which won’t force me to fix an entirely different meal for Liz at every meal.

Pax Christi!

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

Here we go again…

Liz had a neurology appointment on Friday. Since this all began in February of 2010, Liz has had horrible headaches. She had some relief from the pain after the initial surgery in February and then again with the revision surgeries in June. Lately the headaches have been getting worse.

There is a test that is done called a shunt patency test. Dye is injected into the shunt and the x-rays are taken to see how long it takes to drain. The last time Liz had one it took 14 minutes, it should take under 10 minutes. No one had told us about this delay, but since the headaches have steadily been getting worse, so it is now a concern.

Shunts have settings, or openings, to allow for the different speeds of draining of the cerebral fluid. The doctor adjusted Liz’s shunt to the lowest it can possibly go. So now we will see how it drains over the next week.

She goes next Friday for another shunt patency test to see if the shunt adjustment has worked and the shunt is draining faster and better. I had to ask the question of what happens if it isn’t doing better. The doctor said let’s not borrow trouble. I HATE when people say that!

I hope you have a wonderful rest of your weekend.

Pax Christi!

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

Monday Update

I stopped updating and I apologize. Once Liz had the shunt replaced, her vision started to improve, but her headaches did not. So we know know the headached can be seperate from shunt issues. She had neurology consult and is now on a new headache protocal to help with the pain. She was discharged today and is resting right now. I can’t imagine the toll takes on her.

We plan on a quiet weekend to rest and rejuvinate as a family.

I hope you all have a wonderful week.

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

Evening update

We retuned home from the hospital about an hour ago. It was definately a L-O-N-G day. After being told the surgery would be at 1:30, it kept getting pushed back and pushed back. She was taken to the operating room around 4:15, but the surgery didn’t start until about 5:30. I have to wonder what was going on back there. It only took about an hour all totalled and she was out of recovery and back to her room around 8:30.

Her neurosurgeon did come and talk to us after he was done. It turns out that the tube in the neck was not blocked. It shunt device itself in was clogged with “brain matter.” Yeah I freaked out when I heard that. It turns out the the pseudotumor cerebi conditon causes you to have very small brain spaces (called ventricles). So at some point in time when her shunt was adjusted the brain collapsed around the tube and a bit of it was drawn into the shunt devise. I have been assured that one it did not hurt and two it will not affect Liz at all now or in the future.

The surgeon replaced and repositioned the catheter in the brain so it is in a slightly larger space. He replaced both parts of the shunt devices. He intends to talk with the manufacturer to see if there was mechanical failure too since the valve portion of the shunt also was having issues.

They did not have to do anything to the tube in the vein, so that was a good thing. The bad thing is they had to shave off her hair again. I know she it truly bummed about that, but at least we know her hair grows fast.

I spoke to her just a few minutes ago. She has had her post surgery CT scan already. The doctor mentioned if all goes well she may return home tomorrow. I may have to fight to have her in there another day, she is experiencing a lot of naseau right now and I don’t want to try and bring her home if she is having dealing with it. So tomorrow we shall see.

I hope you all had a wonderful day.

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

We are off to the hospital

Richard and I are heading down to the hospital. Liz’s surgery is now scheduled for 1:30 PM. I am afraid they are doing more than a shunt revision. She called and told me that they have done a CT scan with markers. They did this in February when they originally placed the shunt. Earlier this month they just revised the tubing and did not do this particular test. I hope to speak to the neurosurgeon soon to find out what is going to happen.

I will update later when I am able.

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

Quick Update

Today was a quiet one for Liz. With the drain in her back there is not much she can do. The drain has not been draining much and no one can tell me if that is good or bad. She is have a horrible headache and feeling sick to her stomach, so I would have to say that it is not good. I have been dealing with the neurosurgery residents since her doctor is off for the weekend.

I did go into mama bear mode this evening and get her pain medication upped and got her zofran for her naseau. When I left, the pain was in a managable level and the naseau was under control. I also had the neurosurgery resident paged to come down to the room to make sure the drain was working. It is working, but I have to wonder if something else is going on with Liz.

Tomorrow will probably be a repeat of today for her. I was informed that her surgery was scheduled for 3PM on Monday (as of now, we do deal with Hopkins time so who really knows!)

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

Quick Update on Liz

The current shunt is blocked somewhere in the tubing in the vein, possibly a clot. A temporary lumbar drain was placed until they can do the surgery on Monday afternoon. The procedure to place the drain went well, but once the lidacaine wore off she was in a lot of pain. When I left the hospital around midnight to come home to sleep, they were just starting to get a handle on the pain.

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

Oh NO!

Here we go again. Liz is back at Hopkins. It looks like the shunt may be blocked (again). She started with horrible heacaches and naseau yeserday. Then she conplained about vision getting cloudy. So we headed off the ER. They admitted her last night and she is having a bunch of tests today to pinpoint the issue.

Prayers are appreciated to find out what is going and that her sight returns to normal.

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

What a difference a week makes

Just last week I was commenting how things have been busy, but were settling down. I should know better than to make comments like that!

Thursday Dad was sent from the rehab center back to the hospital with pneumonia. Friday I was out running errands to get things ready so I could head back out to Virginia to spend the weekend with mom. Liz called me and said she had developed a horrible headache and was throwing up. Plus she said her vision was cloudy. ACK! So I hurried home, and while on the way picked up Mandy from school to watch the girls.

I took Liz and headed down back to the Hopkins ER. That was truly a fiasco. We sat and waited and waited and waited. Now I had called her doctors to let them know she was coming in. Dr. Miller, her eye doctor, had even called the ER to give them a heads up and quick overview of what she was going to need. Needless to say that message never got through. After 3 hours I went and spoke to the triage a nurse and found out that they had her down as only a headache and discounted the all her previous medical history. I had to go mama bear on them, I know not a wonderfully Christian thing to do, but it worked. While we were waiting in the waiting room she had blood work done, a CT scan done and the neurosurgeon came out and did an exam. After 5 hours they finally had a room in the back open up and they were able to get her back to do the spinal tap. Unfortunately the doctor failed and they couldn’t get it done so she was admitted.

She was there over the weekend and on Monday had several other tests done. It was discovered that her shunt was blocked during these tests. She was going to need surgery to perform a “shunt revision”. The spinal fluid from the lumbar punch showed white blood cells. So the doctors from the Infectious Disease were called to make sure surgery was safe. If it was determined that the shunt was infected, Liz was going to be in the hospital 10 to 14 days on antibiotics to clear the infection before the surgery could be done. The ID doctors determined that the cells were more from an inflammation than infection, so surgery was scheduled for Wednesday.

The surgery went well and the shunt was been fixed. During her surgery the fluid from the blocked shunt was sent for an exam. They found additional types of cells that could indicate infection. So we are waiting on results of further tests to determine if Liz will have to remain in the hospital on antibiotics or she can come home this weekend.

Dad has recovered from his pneumonia and is returning the rehab facility on Thursday night.

All in all a very busy and eventful week. I hope yours has been much calmer!

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

A month of changes

I meant to post last month, but life as usual got in the way. Liz has been confirmed by several doctors as a medical miracle. The neuro-opthamologist has only had a handful of patients with as severe blindness as Liz developed. He has had NO ONE recover as much sight as Liz. So we are in uncharted waters here. I told Dr. Miller when he wrote his case study we wanted a copy.

Liz has met with the mobility trainer to help be able to move around with more confidence. While she has sight, her peripheral vision is greatly compromised so she has to look around all the time. Liz was fitted for a white cane so she can learn to move around with it. It will take a month to come in since they are custom made in Canada. In July she will meet again with the mobility trainer to start the training in earnest.

She will also have a meeting with the state rehabilitation’s counselor to help determine her training goals and develop a plan for employment sometime soon. That will entail an evaluation at the state’s training center in Baltimore.

Liz also has an appointment with the Social Security Administration’s choice of doctors to prove that she really has lost a lot of sight. Of course the doctor is an internal medicine doctor, not an opthamoligist, let alone a neuro-opthamologist. That should be an interesting appointment.

The other major event involved my father. He wound up in the hospital toward the end of May. He had a severe gall bladder infection which led to a heart rhythm issue which led to him spending a few days in the Intensive Care Unit. He was too unstable and weak to be able to remove the gall bladder so right now he has a drain in it. Last Friday he was moved to a rehab facility to regain strength since the infection really knocked him out. Once he regains strength, then they will remove the gall bladder sometime in the next two or three months.

I hope you had a wonderful month!

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome