Living With Brain Surgery

AT LEAST A $1000 FOR AN MRI

2009-04-26T15:14:00.000-07:00

We haven't even called about getting an MRI. But where told it cost around $1000, if you pay cash. What cash? They make you pay $100 before you have it done, but still would have to do it twice a year. So, that's at least $2000 a year with no insurance. We don't have the money and don't know what to do!

My husband twisted his ankle and it hurts him, but we don't have the money to take him to the doctor. It's not swollen, so we think it is just spraned or pulled.

We just spent over $400 on getting a bottom moler pulled out of my mouth after it got absessed! Again, no insurance. Now I have only 1 bottom molar with no opposing top tooth for it. They said I could get a partial denture for $300-$400. What a bargin!

Rosey~

Why Do MRI's Cost So Much?

2009-03-22T20:52:00.000-07:00

Can't understand how we are suppose to be able to get the kind of medical care my husband needs without an MRI! The cost is out of this world when you don't have insurance and my husband is suppose to have on every 6 months for the rest of his life. Wonder if a CAT scan would be sufficient and maybe cost less? Well you have to do, what you have to do and that's not always cheap. Are there any programs out there to help? If I find any, I'll let you know.

Rosey~

The Clinic Wont Work for My Husband!

2009-03-13T12:02:00.000-07:00

My husband's company went bankrupt while he was on medical leave. So, that left us with no income & NO INSURANCE! Of course there was a cobra, but it was more money a month than we made. So, since last September, neither me nor my husband has seen a doctor. Just can't afford it.

Found out about a place nearby that is a clinic. You would think it is free, but it is NOT. They do discount your payment, but you still have to pay something. We went by over 3 months ago and just had our appointment today. They were able to draw blood from me & help with perscriptions, but they said my husband's brain problems were beyond their scope. Still had to pay for his 1st visit. All they can do is give him some perscriptions.

At least this doctor gave us an idea. He said have we tried to speak to the original doctor, the neurologist, tell him our situation and see if he would discount our visits. The only problem, is that doctor can't do anything either, at least not without an MRI. Do you know how much they cost? They charged my insurance $5-10 thousand $$ per MRI. My husband is suppose to have one every 6 months. Cash MRI's are around $1,000, at least that is what the doctor said today. So which kid do we sell? Rosey~

Finally More Drivers!

2009-02-26T09:27:00.000-08:00

Finally last year my boys decided it was time to get their driving permits. One is 17 & the other will be 16 in a few months. It's great that they can share the driving responsibility. The only thing is, I still have to be in the front seat awake, so they can drive. So, it puts my husband who walks with a cane and is a big guy in the back when all of us are in the car.

They probably could both get their license, but since they don't have to pay extra for insurance as long as they have a permit, that's the way it will stay for a while.

No one can go anywhere without me! Which stinks! Sometimes I am just so tired, but if we have anything to do, I have to go, either as the driver or the front seat driver.

Rosey~

The STRESS of Being the ONLY DRIVER!

2009-02-21T13:48:00.000-08:00

Driving has always been a neccessity for me. I am the oldest of 7 girls, so of course I got my license as soon as I could. My parents where thrilled to be able to send me out for things.

Once my husband lost his license, I became the ONLY driver. My son's where not old enough to get even a permit. So, we are down to 1 car, not that we can afford another.

Most days I feel like all I do is drive people around. My husband to doctor appointments, at least until we lost our health insurance. My boys to get allergy shots, twice a week. We go to the dump every other day and the post office several times a week. We also drive to a small cleaning job we do as a family 4 times a week, which is 25 miles away. Soon my sons will start up there grass cutting business and I'll have to haul them and their equipment several days a week. It just NEVER ENDS!

Rosey~

Loosing Your Independance NOT Driving

2009-02-17T15:12:00.000-08:00

As most of you know, men love to drive. My husband was no exception. But, after his second Brain surgery and one of the doctors suggesting he Not drive since he was having issues he gave it up! His license was still valid, he just wasn't driving. His 2nd Brain surgery was in March almost 2 years ago.

Since he wasn't driving, we didn't pay attention to the fact that his license was expiring last August. About 6 weeks after the fact, we went down to see if he could renew the license. Of course, he would have to take the test again. But, just filling out the paper work he noticed a question asking if a doctor has told you not to drive. So, that was the end of that! He was able to get a state ID. He is only 43, can't drive has had 2 Brain surgeries & a neck surgery, but they still don't think my husband is disabled! So, how many brain surgeries do you have to have?

Rosey~

Not Driving Any More because of Brain Surgery

2009-02-14T16:48:00.000-08:00

My husband was still driving after his first brain surgery. After his 2nd brain surgery we just kept going to doctors. During one of the sessions, he mentioned he was having trouble driving. Which is very odd. My husband LOVES to drive. I drive only because I have to.

My husband said he was finding it difficult to keep the vehicle in the lane when he turned his head. The car would just drift the way he was looking. Of course, I didn't know this, because I was driving when we were together. So imagine my horror to find out my husband's problem when he could have had our 2 teenage sons in the car with him. They were not driving at the time.

The doctor suggested that if he was having problems, maybe it would be better just not to drive. I was all over that! He still had a valid license, but then we accidentally let it expire. What a knightmare! Will tell you about that next time.

Rosey~

Results of the Brain TEST

2009-02-10T07:00:00.000-08:00

Once the results were back about my husband's brain function, we went back for another meeting with the doctor. The test showed there was signs of damage. His memory was seemingly in tact. What that meant is once my husband gets the information in his brain, it's there. The problem was getting it in.

Also where the cyst was is basically a dent, that will not go away. Your brain is not like a sponge. It won't expand back out, once it is pushed aside.

Since the cyst was on the back side of the brain on the Cerabellum, it pushed the brain to the front of the head, Behind the forehead. This is where your cognative part of your brain is. So there are issues with that also! This was all done BEFORE the 2nd Brain surgery. At this point my husband was still driving, but not for long!

Rosey~

MORE TESTING DONE!

2009-02-06T18:55:00.000-08:00

Once we knew the cyst was back, we wondered what our options where. If it wasn't a quality of life issue, do you just leave it alone? We needed more answers. So, we went a Neuropsycologist. My husband wasn't crazy, but we needed to see what damage was already done. He went through a battery of tests for hours.

Of course, the results are not immediate. So, we waited several weeks to find out there was some damage already done, just after the first surgery. We went to this doctor several times, but had to go to a psycoitrist to get the medicine prescribed. They tried to make us pay like he was going for a mental illness, instead of for a medical reason. Which most of you may know is a much larger portion of insurance. They finally changed the code so the insurance would pay. More about the test results later!

Rosey~

Can't Believe It's BACK!

2009-02-03T22:17:00.000-08:00

It is so scary to be having brain surgery, much less being told you must have it again! When they first found the cyst about 2 weeks before the 1st surgery, it was about the size of a pack of table sugar. By the time they did the surgery it was the size of a lime! That is 1/4th the size of your brain cavity. You don't have that kind of room up there. Once the damage is done, it doesn't fill back out like a sponge. There is a permanent dent!

We had no idea how much time we had before the next surgery was going to be neccessary. It could grow slowly or fast. But, he was not having the same symptoms as before, so that was a plus. It was just a waiting game!

Rosey~

Arachnoid Cyst Back within 6 Month!

2009-01-31T14:55:00.000-08:00

You could have pushed me over with a feather! Everything, we thought was going fine. My husband's doctor moved out of state, so we had to find another brain surgeon. We did. Of course they send you for the normal MRI and said it was back! We were standing in the hall looking at a computer. I almost fainted! What do you mean, it's back? The previous doctor said only a small 5% chance of that happening.

Well, we found out then, it's more like a large % chance of it reoccurring. Would have been nice to know the first go around. We could have opted for a shunt to be put in. Now we had to have another BRAIN SURGERY! At least this time, it wasn't a quality of life issue. We had some time to do research. But, still your options are limited. One year later, almost to the day we are doing this again, having Brain Surgery!

Rosey~

The Day of 1st Brain Surgery!

2009-01-28T06:25:00.000-08:00

We were stunned that within a week, my husband was having his brain surgery. But, things were just getting worse for him. His cyst was pressing on his cerebellum, which controls your motor functions. At the time of the first scan, it was the size of a package of sugar. After 4-5 hours of surgery, the doctor came out to say everything was O.K. He said it had grown to the size of a lime. That was within about a 2 week period from his first CAT scan. That is about 1/4 the size of you entire brain. You don't have any extra room there, so I was so worried about brain damage.

I made sure to ask the doctor what the chance of this coming back. He said, very minor, like 5%. That sounded pretty good to me. They couldn't get it all, since it was wrapped around an ear nerve, so they had to just poke holes in it, they call it fennastration. Little did we know it would be back within months!

Rosey~

Finding Out You Need Brain Surgery!

2009-01-26T08:47:00.000-08:00

After our very frightening experience in the ER and getting no answers, which happened to be on a Sunday, we went to our family physician. Of course, he sent us for all these heart stress tests. My husband almost passed out on the treadmill. Then about a week later after all the tests came back negative, we got "THE CALL". Our physician said he was handing my husband's care over to a neurologist (brain surgeon). So, we made an appointment and went to him the next week. We had a copy of the scan and brought it with us. That was a Monday. All the while my husband's condition is deteriorating. We just didn't know why.

As soon as the doctor pulled up his scan he came back in the room, he was only gone maybe 3 minutes, and said this is what I see, tell me what you see. He said the brain is suppose to be a mirror image on both sides. As we progressed thru the images, you could see this white looking lump appear. He said that's it, an arachnoid cyst! Your husband has to have brain surgery to remove this.

We went home and did what little research we could in 2 days. We even tried to see if there was another doctor we could see for a 2nd opinion. Of course, there wasn't on such short notice. So, we went back on Wednesday to let the Dr. know we agreed to the surgery. We told him what we tried to do about getting a 2nd opinion. But, he said he had already scheduled my husband's surgery for this Friday. It wasn't a matter of "IF" he was having the surgery, but "WHO" was doing it! You could have pushed me over with a feather.

All my husband could do at this point was "thumbs up" , let's do this! He could bearly walk or talk. The cyst was pressing on his cerabellum, the part of the brain that you use for motor skills. My husband was only 40 years old. That was 2 brain surgeries ago! We'll talk about the actual surgery day later.

Rosey~

How it All Began!

2009-01-25T12:25:00.000-08:00

We thought my husband was having a heart attack! Spent the next 9 hours in the emergency room. My husband complained about his head hurting him. I kept saying forget about your head, let them work on your heart. They finally did a CAT scan. The ER doctor said they could find nothing wrong with his heart and thought it was just anxiety related. They needed to let us know they found an arachnoid cyst on his scan and said it was probably nothing and had it all his life, but since they found it, we needed to just let our family physician know about it. This was just the beginning of our nightmare!

Rosey~

My mission

2009-01-24T21:12:00.000-08:00

Hi, I'm just getting this started. My mission is to raise awareness and let others see how brain surgery affects the lives of not only those who suffer with these ailments, but also those who live with & care for them.