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

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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