Saturday, October 31, 2009
Friday, October 30, 2009
Blood Pressure
Since I have had complications for several years now I have gained some weight and with the weight my blood pressure has gone up a bit. Not a big deal but enough to worry if it could make my headache worse.
The lower number is what I have had the most problems with up in the 90 range. And the past few months of medicine side effects have come from trying to start a blood pressure medicine. Currently I am off all waiting to see what my doctor will try next.
I took my blood pressure this morning and it was 123/72. I thought this can't be right. Took it again and it was nearly the same.
Could it be the Magnesium? I only took a half a pill yesterday in case of side effects.
I even had a couple of hours of nearly no headache yesterday evening. It returned last night. But the no pain was a really od feeling. It was like my head was missing. I felt aquard. I just did not know what to do with myself.
I am totally wondering if I found something that might help. I don't want to get my hopes up. But what if?
The lower number is what I have had the most problems with up in the 90 range. And the past few months of medicine side effects have come from trying to start a blood pressure medicine. Currently I am off all waiting to see what my doctor will try next.
I took my blood pressure this morning and it was 123/72. I thought this can't be right. Took it again and it was nearly the same.
Could it be the Magnesium? I only took a half a pill yesterday in case of side effects.
I even had a couple of hours of nearly no headache yesterday evening. It returned last night. But the no pain was a really od feeling. It was like my head was missing. I felt aquard. I just did not know what to do with myself.
I am totally wondering if I found something that might help. I don't want to get my hopes up. But what if?
Thursday, October 29, 2009
Fatigue
I am constantly dealing with fatigue and have tried caffeine pills. They help my energy but my heart races and my nerves are a wreck.
I got to wondering what vitamins and/or minerals could possibly help fatigue. I research today and found a web site that gives some information on fighting fatigue so I'm going to try some of the suggestions and see what happens.
Today I have started magnesium. I was reading on it and it also is suppose to help pain. If it helps this would be a great thing.
I have several others to add in but going to try one a week to make sure I don't have some crazy side effect.
I got to wondering what vitamins and/or minerals could possibly help fatigue. I research today and found a web site that gives some information on fighting fatigue so I'm going to try some of the suggestions and see what happens.
Today I have started magnesium. I was reading on it and it also is suppose to help pain. If it helps this would be a great thing.
I have several others to add in but going to try one a week to make sure I don't have some crazy side effect.
Monday, October 26, 2009
9 days that changed my life
I often wonder about if doctors and nurses had been more aware of the issues happening after I had my brain tumor removed if things would be different. What if my surgeon had not left for those 9 days after my surgery . Would he have caught the side effects from the pressure building up. I wonder did the doctor really go to research my tumor or just go on vacation?
In march of 1983 I had been going to my primary doctor for the flu when a doctor in training(intern) saw pressure building up. This was when the tumor was discovered and the next day I had the best neurosurgeon on my case and removed the tumor. It was the first aystrocytomia at Mission Hospital and said neurosurgeon left the next day to start his research on it.
While he was gone my condition got worse. My parents were constantly asking questions why things were happening and why I was not getting better. In many ways things were getting really bad.
I was sleeping all the time and when in mid sentence I would drift off. My parents were told by nurse after nurse and doctor after doctor it was the medicine from surgery. But there were also other things going wrong. Both my eyes crossed and all the staff told my parents they would go back. I lost the ability to hold my bladder. This was also blamed on the surgery and it would fix itself. I could not sit up. I could not feed myself. I lost all ability to walk during this time also.
Many people pushed my parents to sue but they were more worried about me living than to be compensated for the mistakes.
On the 9Th day after surgery while I was totally out of it and back to being like a 40 pound 2 year old. Dr W's nurse came in and saw me rushed out of the room and had Dr W come see me. It was then explained that pressure had built up and I needed a shunt to reduce the pressure.
I came out of surgery a different person. I was awake and talking. I regained control of my bladder. But some damage was already done but my parents were told the issues with my eyes would fix their self and I would be walking again soon. The shunt would cure the problem.
I had to go through a year of physical therapy to learn to walk again and had to have 3 eye surgeries to straighten my eyes.
When I had my last check up by the neurosurgeon first thing he said " Oh I am so glad her eyes straightened up." My mom told him no they didn't she has had several surgeries to fix them. My mom did not say this in anger just mater of fact. He did not comment.
My mom ask when the shunt would be taken out. He said there was no need to go through another major surgery to take it out he did not think it was even working anymore. My parents were given the impression it had cured the pressure problem and there was no need to ever worry about it or the brain tumor. Radiation had killed the last of the tumor and the shunt was not working but served its purpose.
On this visit I was released from his care. He said I was better and nothing needed to be rechecked.
As we now know the shunt had been working for nearly 20 years when I had a general surgeon doing surgery for adhesion that had been causing major problems. He saw the distal part of the shunt was causing the problem and since we had been told for all those years it did not work he called in a neurosurgeon from the group that had done my surgeries years ago to come in and advise if the distal could be clipped out of my abdomen.
The neurosurgeon came in and observed it a few minutes while I was laying on the table ( I now know the shunt drains much less when laying down) and gave the OK to remove it and left. He also confirmed it did not work.
So today I know I have acquired hydrocephalus. This is my story : http://www.blogger.com/post-create.g?blogID=2046513809313466678
In march of 1983 I had been going to my primary doctor for the flu when a doctor in training(intern) saw pressure building up. This was when the tumor was discovered and the next day I had the best neurosurgeon on my case and removed the tumor. It was the first aystrocytomia at Mission Hospital and said neurosurgeon left the next day to start his research on it.
While he was gone my condition got worse. My parents were constantly asking questions why things were happening and why I was not getting better. In many ways things were getting really bad.
I was sleeping all the time and when in mid sentence I would drift off. My parents were told by nurse after nurse and doctor after doctor it was the medicine from surgery. But there were also other things going wrong. Both my eyes crossed and all the staff told my parents they would go back. I lost the ability to hold my bladder. This was also blamed on the surgery and it would fix itself. I could not sit up. I could not feed myself. I lost all ability to walk during this time also.
Many people pushed my parents to sue but they were more worried about me living than to be compensated for the mistakes.
On the 9Th day after surgery while I was totally out of it and back to being like a 40 pound 2 year old. Dr W's nurse came in and saw me rushed out of the room and had Dr W come see me. It was then explained that pressure had built up and I needed a shunt to reduce the pressure.
I came out of surgery a different person. I was awake and talking. I regained control of my bladder. But some damage was already done but my parents were told the issues with my eyes would fix their self and I would be walking again soon. The shunt would cure the problem.
I had to go through a year of physical therapy to learn to walk again and had to have 3 eye surgeries to straighten my eyes.
When I had my last check up by the neurosurgeon first thing he said " Oh I am so glad her eyes straightened up." My mom told him no they didn't she has had several surgeries to fix them. My mom did not say this in anger just mater of fact. He did not comment.
My mom ask when the shunt would be taken out. He said there was no need to go through another major surgery to take it out he did not think it was even working anymore. My parents were given the impression it had cured the pressure problem and there was no need to ever worry about it or the brain tumor. Radiation had killed the last of the tumor and the shunt was not working but served its purpose.
On this visit I was released from his care. He said I was better and nothing needed to be rechecked.
As we now know the shunt had been working for nearly 20 years when I had a general surgeon doing surgery for adhesion that had been causing major problems. He saw the distal part of the shunt was causing the problem and since we had been told for all those years it did not work he called in a neurosurgeon from the group that had done my surgeries years ago to come in and advise if the distal could be clipped out of my abdomen.
The neurosurgeon came in and observed it a few minutes while I was laying on the table ( I now know the shunt drains much less when laying down) and gave the OK to remove it and left. He also confirmed it did not work.
So today I know I have acquired hydrocephalus. This is my story : http://www.blogger.com/post-create.g?blogID=2046513809313466678
Saturday, October 24, 2009
Is this wrong?
I am questioning my feelings right now. I feel like it is wrong to want people to think about me and worry about me. But it totally hurts my feelings for someone who tells me she will be there when I need her and considers me a sister. But she has no idea what I go through or anything about me and my illness.
I said I was not going to put personal issues on my blog but she has the link and has never looked at it. Every e-mail I send has my link. I post my link all over my facebook and my myspace... Not because I am looking for pity because I am wanting to reach out to others and educate people that don't know about us and our struggles.
I have really tried to be a comfort to her with the things in the past year she has faced. But to think about it I did not get a phone call each time in the past nearly 8 years I have had my 18 surgeries.
Today I called to check on her since she is suddenly (kinda) single with a child. She ask if it was raining. I said no but it did last night the rain headache woke me up. She says "Oh do you still have headaches?" I explain yes. And go over how weather and moon changes effect me. It was like a total surprise.
It just really hurts my feelings that she is suppose to be my blood and does not have a clue. Does she think when I have a shunt revision it is like getting my teeth cleaned? I wanted to Yell " HELLO I HAVE SURGERY TO KEEP ME ALIVE!!!"
I understand people have their own life and probably can't be bothered with my problems but I have Internet friends states away that get concerned if I'm not online or if I post I am having a bad day.
Is it all my fault? I try to be involved as much as I can but I am the one that has to watch when I can drive because of headaches and if I take meds. When I do push myself to be involved at her home it is like I am not welcome.
The holidays are coming up so I will see her for Thanksgiving and Christmas. But the next time we talk will be fall of the next year.
I guess this is why she has no idea what I go through. But come on do you not know who I am? I guess not...
I said I was not going to put personal issues on my blog but she has the link and has never looked at it. Every e-mail I send has my link. I post my link all over my facebook and my myspace... Not because I am looking for pity because I am wanting to reach out to others and educate people that don't know about us and our struggles.
I have really tried to be a comfort to her with the things in the past year she has faced. But to think about it I did not get a phone call each time in the past nearly 8 years I have had my 18 surgeries.
Today I called to check on her since she is suddenly (kinda) single with a child. She ask if it was raining. I said no but it did last night the rain headache woke me up. She says "Oh do you still have headaches?" I explain yes. And go over how weather and moon changes effect me. It was like a total surprise.
It just really hurts my feelings that she is suppose to be my blood and does not have a clue. Does she think when I have a shunt revision it is like getting my teeth cleaned? I wanted to Yell " HELLO I HAVE SURGERY TO KEEP ME ALIVE!!!"
I understand people have their own life and probably can't be bothered with my problems but I have Internet friends states away that get concerned if I'm not online or if I post I am having a bad day.
Is it all my fault? I try to be involved as much as I can but I am the one that has to watch when I can drive because of headaches and if I take meds. When I do push myself to be involved at her home it is like I am not welcome.
The holidays are coming up so I will see her for Thanksgiving and Christmas. But the next time we talk will be fall of the next year.
I guess this is why she has no idea what I go through. But come on do you not know who I am? I guess not...
Wednesday, October 21, 2009
Hydro Hint ~Lights
I have major issues with florescent lights. When I have to go into shop at the grocery store or retail store. I always take a dem pair of sun glasses. One because the lights after a while start hurting my head worse and another thing is they will make my vision foggy.
I feel goofy going around looking in the freezer section with sun glasses but I let people just think what ever. If not I suffer. Once I have the headache or vision problems it some time before it passes.
I have posted about this before. The preferred type or color of sunglasses to get is the rose colored. It has been found to help people with brain injury or that have had brain surgery and suffer from chronic headaches.
I had a friend comment one time out in the rain when I got out of my car and she looked straight up at the clouds...
I feel goofy going around looking in the freezer section with sun glasses but I let people just think what ever. If not I suffer. Once I have the headache or vision problems it some time before it passes.
I have posted about this before. The preferred type or color of sunglasses to get is the rose colored. It has been found to help people with brain injury or that have had brain surgery and suffer from chronic headaches.
I had a friend comment one time out in the rain when I got out of my car and she looked straight up at the clouds...
Detroit Hydrocephalus Support Group
Imagine living in constant fear of your child’s life. Picture the terror you would feel hearing the term hydrocephalus and not knowing who to turn to for support or where to go for advise. Parents, young adults and elders affected by hydrocephalus face the unknown daily. Unfortunately, the fear, terror, and pain will never disappear, but individuals affected in Michigan now have the Detroit Hydrocephalus Support Group to turn to. It was formed to educate & support one another as we deal with the daily struggles hydrocephalus brings to our lives. Children and adults will be gathering to share their stories, parents will be giving advice to one another, and speakers will be coming in to educate participants.
The Hydrocephalus Association cordially invites you to the first official Detroit Hydrocephalus Support Group meeting on 1/15/2010 from 6:30-8:30 p.m.. Please pass this flyer on to those with hydrocephalus or any loved ones and friends whom would like to join in! The meetings are open to all ages. If interested contact myself by e-mail: Jenn.Bechard@gmail.com.
Check out Jenn's Blog: http://justbelieve14.wordpress.com/
Tuesday, October 20, 2009
Hydro Hint
This may not happen to everyone but if you are having problems with an uncommon headache look at your allergy medications. I have found all of them make my headache much worse. The ones with the "D" or decongestion part make it much worse.
Allergy medicine works in 2 way either to make the sinuses smaller or the decongestion that drain the congestion which both add pressure and in turn cause more than the usual headache.
Another thing I have a big problem with increasing my headaches is saline mist. It took me a good 3 weeks to realize I was making my headache worse for myself.
I have issues with being stuffy at night. So my solution is a humidifier year round.
Allergy medicine works in 2 way either to make the sinuses smaller or the decongestion that drain the congestion which both add pressure and in turn cause more than the usual headache.
Another thing I have a big problem with increasing my headaches is saline mist. It took me a good 3 weeks to realize I was making my headache worse for myself.
I have issues with being stuffy at night. So my solution is a humidifier year round.
SCREAMING!!!!
NOT ANOTHER DAY WITH THIS STUPID HEADACHE!!!
today is day 5 of this same headache. It's not from my hydro.
I'm pretty sure it is sinus. But that does not make it hurt any
less...
Sunday, October 18, 2009
One side effect from hydrocephalus
So today is one of my crazy sleeping days. In the past few years since knowing I have this condition I have found sever side effects that are explained by the hydro.
I hate sleep. I really rather go without because every sleeping event I have to fight to go to sleep then fight to stay asleep.
I can remember being little counting the specks of glitter on the ceiling every night trying to sleep. I would also count the lava lamp bubbles til they stopped floating. I would also listen to Cricket ( my first poodle) snore.
So last night I had a crazy up and down night and today I am sleeping. Sleeping during the day makes me feel terrible. I'm fatigued and got more of a headache than usual. I feel rotten.
I hate sleep. I really rather go without because every sleeping event I have to fight to go to sleep then fight to stay asleep.
I can remember being little counting the specks of glitter on the ceiling every night trying to sleep. I would also count the lava lamp bubbles til they stopped floating. I would also listen to Cricket ( my first poodle) snore.
So last night I had a crazy up and down night and today I am sleeping. Sleeping during the day makes me feel terrible. I'm fatigued and got more of a headache than usual. I feel rotten.
Miracle In Lane 2
I read about this film the other day after reading phils post, so I decided to take a look by searching about it on youtube.Its about a 12 year old boy, called Justin Yoder. Justin suffers from spinabifida and hydrocephalus. Its a true story, but is played by Frankie Muniz, the guy who plays malcolm in 'malcolm in the middle.'Its shows the discrimination against his condition when applying for sports etc.I suggest you all take a look, its great to see an actors interpretation of the symptoms.It can be searched on youtube and is in 10 parts, I have listed the individual links below in order:
Part 1:http://www.youtube.com/watch?v=257CG...om=PL&index=66
Part 2:http://www.youtube.com/watch?v=sxSn0...2F545&index=67
Part 3:http://www.youtube.com/watch?v=ZZQTZ...eature=related
Part 4:http://www.youtube.com/watch?v=Vd5tC...eature=related
Part 5:http://www.youtube.com/watch?v=4McRf...eature=related
Part 6:http://www.youtube.com/watch?v=7bAKQ...eature=related
Part 7:http://www.youtube.com/watch?v=QvxMlDHazDk&feature=fvw
Part 8:http://www.youtube.com/watch?v=jRbzO...eature=related
Part 9:http://www.youtube.com/watch?v=vFubk...eature=related
Part 10:http://www.youtube.com/watch?v=XKUPB1rsx7w&feature=related
__________________
Post from Jade on:http://brain.hastypastry.net/forums/showthread.php?t=69898
Part 1:http://www.youtube.com/watch?v=257CG...om=PL&index=66
Part 2:http://www.youtube.com/watch?v=sxSn0...2F545&index=67
Part 3:http://www.youtube.com/watch?v=ZZQTZ...eature=related
Part 4:http://www.youtube.com/watch?v=Vd5tC...eature=related
Part 5:http://www.youtube.com/watch?v=4McRf...eature=related
Part 6:http://www.youtube.com/watch?v=7bAKQ...eature=related
Part 7:http://www.youtube.com/watch?v=QvxMlDHazDk&feature=fvw
Part 8:http://www.youtube.com/watch?v=jRbzO...eature=related
Part 9:http://www.youtube.com/watch?v=vFubk...eature=related
Part 10:http://www.youtube.com/watch?v=XKUPB1rsx7w&feature=related
__________________
Post from Jade on:http://brain.hastypastry.net/forums/showthread.php?t=69898
Saturday, October 17, 2009
Pepper warming his feet
Pepper is loving the fire place as much as I am. I had to put a bed down so he could lay in front. He was wanting near the fire but could not get comfy on the hard wood.
I may have to blow this picture up and frame it...
We are having our first chance of snow tonight so I'm doing a snow dance. The weather gave 1-3 inches for the higher elevations around 3,500 feet. Where I am it's about 2,200.
I looked out a few minutes ago and saw a bit of sleet falling. The temperature is 39. It's possible we might see a few flakes.
My mom and I had to go meet a woman in Canton today. Usually as we start over the mountain the change in elevation and windy roads give me a headache instantly. I had a light headache but it did not really kick in until we were coming back over the mountain. It could have also been because there was the cold front moving in and it rained all the way back.
This was a major difference though. I usually really hate going that way because I love the drive but I suffer from the headache.
Maybe, just maybe I'm starting to adjust a bit from the new shunt. Next month will be one year since my last surgery. My hydro does not feel great and I wonder if I will find my place back to where I was before all this junk happened. I am the most stable I have been since 2002.
Hydrocephalus News
Surgery News: 8 Year Old Hits A Hole In One Golfing Days After Emergency Brain Surgery
Monday October 12, 2009
Jonathan Brittain, an 8 year old boy from Virginia, hit a hole in one at the golf course last week.
While a hole in one is a pretty rare occurrence, the circumstances under which Jonathan hit the ball are even more extraordinary.
Jonathan was born 28 weeks early with a condition called hydrocephalus, or water on the brain.
He has had 8 surgeries in his short eight years. The last one, two weeks ago, was an emergency surgery, as the shunt that drains the extra fluid from his brain was no longer working.
Clearly Jonathan is recovering from surgery quickly, getting back to his favorite sports and other activities, rather than hanging out on the couch or in bed.
Way to go Jonathan! You're an example for all of us!
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Keep up with surgery news and information by signing up for the Surgery Newsletter.
Check out the Surgery Forums for surgery discussions, support and more! *+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*
Monday October 12, 2009
Jonathan Brittain, an 8 year old boy from Virginia, hit a hole in one at the golf course last week.
While a hole in one is a pretty rare occurrence, the circumstances under which Jonathan hit the ball are even more extraordinary.
Jonathan was born 28 weeks early with a condition called hydrocephalus, or water on the brain.
He has had 8 surgeries in his short eight years. The last one, two weeks ago, was an emergency surgery, as the shunt that drains the extra fluid from his brain was no longer working.
Clearly Jonathan is recovering from surgery quickly, getting back to his favorite sports and other activities, rather than hanging out on the couch or in bed.
Way to go Jonathan! You're an example for all of us!
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Keep up with surgery news and information by signing up for the Surgery Newsletter.
Check out the Surgery Forums for surgery discussions, support and more! *+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*+*
Wednesday, October 14, 2009
Someone please tell me...
Why on earth was I not scared last night? So about 1 something in the morning I was woke up by my closet doors banging against each other ans they are mirrors so I was getting the reflection of the outside light peeping through and bouncing off the wall.
I guess I should let you know I hate being scared. I hate Halloween or any kind of horror movie. I think it is totally stupid how they hear a noise in the basement! What do they do? Go to the basement! Hear a noise in the closet!! What happens? They look in the closet!!!
So this banging on the doors was like when one of the doors is off the track. Gets on my nerves so bad. It is loud and sounds like the mirror is breaking.
It also woke Pepper so he was growling.
I get up out of bed one eye open and go open the door to see Ginger in the upper part of the closet. I reach her my hand she comes to me I think I threw her in some direction and crawled back in bed.
I usually try to watch about her getting in there because I don't like kitty hair clothes.
What is crazy is...Why did this not scar me?
I guess I should let you know I hate being scared. I hate Halloween or any kind of horror movie. I think it is totally stupid how they hear a noise in the basement! What do they do? Go to the basement! Hear a noise in the closet!! What happens? They look in the closet!!!
So this banging on the doors was like when one of the doors is off the track. Gets on my nerves so bad. It is loud and sounds like the mirror is breaking.
It also woke Pepper so he was growling.
I get up out of bed one eye open and go open the door to see Ginger in the upper part of the closet. I reach her my hand she comes to me I think I threw her in some direction and crawled back in bed.
I usually try to watch about her getting in there because I don't like kitty hair clothes.
What is crazy is...Why did this not scar me?
Tuesday, October 13, 2009
Connect the scars
I gave another hair dresser a crash course in how many scars does it take to keep me walking... I joke. I told her I had a lot of scars and showed her where the shunt was. She felt around to see where all the surprise places were.
It would probably be funny to act like nothing was suppose to be there just for the reaction. But I could tell she was really being careful when she was pulling my hair through the cap for high lites.
I wanted to take a picture when I came in but my battery is down in my camera. But I totally love my hair. It's different from my summer style but still short and blond... Wow, how I missed my blond!!
It would probably be funny to act like nothing was suppose to be there just for the reaction. But I could tell she was really being careful when she was pulling my hair through the cap for high lites.
I wanted to take a picture when I came in but my battery is down in my camera. But I totally love my hair. It's different from my summer style but still short and blond... Wow, how I missed my blond!!
Sunday, October 11, 2009
Fall is starting to show
Color is just starting here. With all the leaves that have fallen I wonder if there will be enough for an color.
My red dog wood in my front yard is a beautiful purple.
My red dog wood in my front yard is a beautiful purple.
I need to shap it up a bit but it's natural shape is nice.
Sorry I've not blogged in a while I have had a nice stomach blog. But took some pictures of the beginning of fall here.
Friday, October 9, 2009
Thursday, October 8, 2009
Wednesday, October 7, 2009
Rev. Billy Graham...bringing a familiar face to hydrocephalus
Hydrocephalus is diagnosed daily in our elderly. As their body's decrease in the amount of calcium and their bodies change the brain over compensates for these changes and makes more spinal fluid causing systems much like those in Parkinson's and Alzheimer's. Several years back Reverend Billy Graham was diagnosed with Parkinson's as his gate got worse and tremors made it harder to do normal daily things. He was accepting his condition when a brain scan revealed what is called normal pressure hydrocephalus. Which at the time I am sure Rev. Graham did not think anything could help his deterioration condition. But with the new diagnosis a shunt greatly improve his condition. He has had 2 revisions to date but it has been reported his quality of life has greatly improved.
Saved from Senility
Saved from Senility
) ..For many people, it's the worst possible news. They're diagnosed with Alzheimer's or Parkinson's, and they're told to put their affairs in order and prepare for years of suffering, and eventually, death.
millions of Americans have to live with that diagnosis -- and all the heartache that goes with it. But what if the diagnosis is wrong? What if they're suffering from something that's treatable? Correspondent Vicki Mabrey reports.
I was totally convinced I was dying. I was totally convinced I'd be gone in a month or a so," says Bob Fowler, who wrote his own obituary five years ago, at the age of 69.
It was hard to write it. I was totally convinced because I'd been to doctor after doctor after doctor with absolutely no positive results. No diagnosis of what was wrong with me at all. It was a very traumatic time for us.
For nearly a decade, Fowler had struggled with debilitating symptoms – trouble with balance, memory, and incontinence. Doctors suspected Parkinson's or Alzheimer's, but weren't sure. His condition worsened so terribly that he ended up in a wheelchair and had to stop working. Eventually, his wife Bonita began making plans to put him in a nursing home.
Fowler says he also developed a severe case of dementia: "One morning, I wandered out to the sidewalk to get our morning paper. And Bonita was at the door and she yelled at me. She said, 'Why don't you have anything on?' I said, 'Well, I've got a towel.' I had a towel around my neck and nothing else on. Now, I've always been a shy, kind of private person. And yet, it just didn't seem to matter."
Says he's probably been to 15 doctors over the past nine years. And in all of those years, none of his doctors suggested he have an MRI or CT scan, and he never got a definitive diagnosis of what was wrong with him.
Phoenix, retired dentist Milt Newman suffered for 15 years from the same symptoms as Fowler. In Newman's case, a CT scan was performed, yet none of his doctors could pinpoint what was causing his decline.
His concentration was nil. There wasn't any. Reading a book was difficult because I couldn't remember what happened 10 pages back," says Newman. "And later on, conversation was difficult because I'd forget what people would say."tually, he was diagnosed with Alzheimer's. "I was floored by that because to me that was a death sentence," says Newman. "I said to myself,'Well, let me get prepared.'"
Newman wasn't prepared for, however, was the news that it was all a mistake – and that there was hope.
After 15 years of suffering, Newman met Dr. Harold Rekate, a neurosurgeon at the Barrow Neurological Institute in Phoenix. He realized that what Newman had wasn't Alzheimer's but a condition called normal pressure hydrocephalus or NPH. NPH is caused by excess fluid putting pressure on the brain.
He had 10 times too much fluid in here than there is in a normal person," says Rekate. "It's pushing the brain outward and stretching the nerve fibers so they can't function properly."
result can be the very symptoms that plagued both Newman and Fowler – problems with gait, or walking, with thinking and bladder control.
Dr. Rekate, those symptoms – especially a shuffling walk – are a giveaway. But doctors rarely realize that the cause might be NPH and a surprising number of cases go undiagnosed, and untreated.
Alzeimer's and other forms of dementia afflict more than 7 million people in the United States, but medical professionals estimate that between 5 and 10 percent of them -- at least 375,000 people -- might actually have NPH. And most physicians are missing it. Why?
It is hard to make the diagnosis. You have to sit down and you have to listen and you have to examine the patient. And you have to do it in a thorough way. And then you have to order an expensive test," says Rekate. "An MRI scan will cost somewhere around $2,000-3,000. It's not that the insurance carriers want you to do that."
What do those who are misdiagnosed need to do? "You don't have to go gently into that good night," says Rekate. "You need to fight. And we need to give you the tools to fight."
first tool is knowledge, because once the condition is discovered, the treatment is a 45-minute procedure in which neurosurgeons surgically insert a tube called a shunt into the brain. That tube drains the excess fluid from the brain and moves it to the belly where it can be absorbed.
shunt may need to be adjusted because removing too much or too little fluid can be dangerous. That adjustment used to require further surgery, but now it is done painlessly with a magnet in the doctor's office.
After the surgery, Newman said he "felt like the old Milton."
He said he had a similar transformation in 1999, when he was finally told that he had NPH: "I never anticipated feeling that good again in my life. And all of a sudden I felt fantastic. I'm 74 years old now and I'm doing things that I would have dreamed of doing any time during my 60s."
Five years after his surgery, Fowler is back at work and back at play. But he's also a man with a mission to spread the word about NPH.
He starred in a public-service announcement, re-enacting what his symptoms were like then, and showing how he is now. The ad was produced by one of the shunt manufacturers.
We've had hundreds of calls from patients who saw those commercials and said, 'That sounds like me. It sounds like my mother, my father, someone that I know,'" says Dr. Gail Rosseau, a neurosurgeon at the Chicago Institute Of Neurosurgery and Neuroresearch.
Rosseau is working to raise awareness in both doctors and patients about the three classic signs of the condition.
"Patients and their families should know that if someone is aging and their gait is worsening, their mental thought processes are becoming less clear, and they have urinary incontinence, they need a scan," says Rosseau. "They need to insist on a scan and they need to see a specialist who knows about normal-pressure hydrocephalus.""We can improve the symptoms of normal-pressure hydrocephalus, but we can't make you look younger," says Rosseau. "We can't slow down the other things that make you feel old that have happened during that same period: arthritis, perhaps heart disease, the other medical problems that we all seem to accumulate as we get older. This only helps one of them, but when we're right about it, it can help a lot."
No one understands that more than Fowler, who says he feels like he's been given a second chance, and he wants to share it with others.
"I can spot 'em quickly. I've even walked up to people and had the audacity to walk up to a person and say, 'Have you had an MRI or a CT scan in the last few years?' And they say, 'No why, what business is it of yours,'" says Fowler. "
And I say, 'Because I know your gait and I know your walk. I want you to go from here and have a CT scan or an MRI. Do yourself a favor.'"
) ..For many people, it's the worst possible news. They're diagnosed with Alzheimer's or Parkinson's, and they're told to put their affairs in order and prepare for years of suffering, and eventually, death.
millions of Americans have to live with that diagnosis -- and all the heartache that goes with it. But what if the diagnosis is wrong? What if they're suffering from something that's treatable? Correspondent Vicki Mabrey reports.
I was totally convinced I was dying. I was totally convinced I'd be gone in a month or a so," says Bob Fowler, who wrote his own obituary five years ago, at the age of 69.
It was hard to write it. I was totally convinced because I'd been to doctor after doctor after doctor with absolutely no positive results. No diagnosis of what was wrong with me at all. It was a very traumatic time for us.
For nearly a decade, Fowler had struggled with debilitating symptoms – trouble with balance, memory, and incontinence. Doctors suspected Parkinson's or Alzheimer's, but weren't sure. His condition worsened so terribly that he ended up in a wheelchair and had to stop working. Eventually, his wife Bonita began making plans to put him in a nursing home.
Fowler says he also developed a severe case of dementia: "One morning, I wandered out to the sidewalk to get our morning paper. And Bonita was at the door and she yelled at me. She said, 'Why don't you have anything on?' I said, 'Well, I've got a towel.' I had a towel around my neck and nothing else on. Now, I've always been a shy, kind of private person. And yet, it just didn't seem to matter."
Says he's probably been to 15 doctors over the past nine years. And in all of those years, none of his doctors suggested he have an MRI or CT scan, and he never got a definitive diagnosis of what was wrong with him.
Phoenix, retired dentist Milt Newman suffered for 15 years from the same symptoms as Fowler. In Newman's case, a CT scan was performed, yet none of his doctors could pinpoint what was causing his decline.
His concentration was nil. There wasn't any. Reading a book was difficult because I couldn't remember what happened 10 pages back," says Newman. "And later on, conversation was difficult because I'd forget what people would say."
Newman wasn't prepared for, however, was the news that it was all a mistake – and that there was hope.
After 15 years of suffering, Newman met Dr. Harold Rekate, a neurosurgeon at the Barrow Neurological Institute in Phoenix. He realized that what Newman had wasn't Alzheimer's but a condition called normal pressure hydrocephalus or NPH. NPH is caused by excess fluid putting pressure on the brain.
He had 10 times too much fluid in here than there is in a normal person," says Rekate. "It's pushing the brain outward and stretching the nerve fibers so they can't function properly."
result can be the very symptoms that plagued both Newman and Fowler – problems with gait, or walking, with thinking and bladder control.
Dr. Rekate, those symptoms – especially a shuffling walk – are a giveaway. But doctors rarely realize that the cause might be NPH and a surprising number of cases go undiagnosed, and untreated.
Alzeimer's and other forms of dementia afflict more than 7 million people in the United States, but medical professionals estimate that between 5 and 10 percent of them -- at least 375,000 people -- might actually have NPH. And most physicians are missing it. Why?
It is hard to make the diagnosis. You have to sit down and you have to listen and you have to examine the patient. And you have to do it in a thorough way. And then you have to order an expensive test," says Rekate. "An MRI scan will cost somewhere around $2,000-3,000. It's not that the insurance carriers want you to do that."
What do those who are misdiagnosed need to do? "You don't have to go gently into that good night," says Rekate. "You need to fight. And we need to give you the tools to fight."
first tool is knowledge, because once the condition is discovered, the treatment is a 45-minute procedure in which neurosurgeons surgically insert a tube called a shunt into the brain. That tube drains the excess fluid from the brain and moves it to the belly where it can be absorbed.
shunt may need to be adjusted because removing too much or too little fluid can be dangerous. That adjustment used to require further surgery, but now it is done painlessly with a magnet in the doctor's office.
After the surgery, Newman said he "felt like the old Milton."
He said he had a similar transformation in 1999, when he was finally told that he had NPH: "I never anticipated feeling that good again in my life. And all of a sudden I felt fantastic. I'm 74 years old now and I'm doing things that I would have dreamed of doing any time during my 60s."
Five years after his surgery, Fowler is back at work and back at play. But he's also a man with a mission to spread the word about NPH.
He starred in a public-service announcement, re-enacting what his symptoms were like then, and showing how he is now. The ad was produced by one of the shunt manufacturers.
We've had hundreds of calls from patients who saw those commercials and said, 'That sounds like me. It sounds like my mother, my father, someone that I know,'" says Dr. Gail Rosseau, a neurosurgeon at the Chicago Institute Of Neurosurgery and Neuroresearch.
Rosseau is working to raise awareness in both doctors and patients about the three classic signs of the condition.
"Patients and their families should know that if someone is aging and their gait is worsening, their mental thought processes are becoming less clear, and they have urinary incontinence, they need a scan," says Rosseau. "They need to insist on a scan and they need to see a specialist who knows about normal-pressure hydrocephalus."
No one understands that more than Fowler, who says he feels like he's been given a second chance, and he wants to share it with others.
"I can spot 'em quickly. I've even walked up to people and had the audacity to walk up to a person and say, 'Have you had an MRI or a CT scan in the last few years?' And they say, 'No why, what business is it of yours,'" says Fowler. "
And I say, 'Because I know your gait and I know your walk. I want you to go from here and have a CT scan or an MRI. Do yourself a favor.'"
Tuesday, October 6, 2009
What is Hydrocephalus?
The term hydrocephalus is derived from the Greek words "hydro" meaning water and "cephalus" meaning head. As the name implies, it is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. Although hydrocephalus was once known as "water on the brain," the "water" is actually cerebrospinal fluid (CSF) - a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain.
The ventricular system is made up of four ventricles connected by narrow passages. Normally,
CSF flows through the ventricles, exits into cisterns (closed spaces that serve as reservoirs) at the base of the brain, bathes the surfaces of the brain and spinal cord, and then reabsorbs into the bloodstream.
CSF has three important life-sustaining functions: 1) to keep the brain tissue buoyant, acting as a cushion or "shock absorber"; 2) to act as the vehicle for delivering nutrients to the brain and removing waste; and 3) to flow between the cranium and spine and compensate for changes in intracranial blood volume (the amount of blood within the brain).
The balance between production and absorption of CSF is critically important. Because CSF is made continuously, medical conditions that block its normal flow or absorption will result in an over-accumulation of CSF. The resulting pressure of the fluid against brain tissue is what causes hydrocephalus
Bringing awareness
Last months was "Hydrocephalus awareness month" but I hope to bring awareness to my illness all year long. I hope by blogging I can make at least one person aware that was not aware or even ever heard of hydrocephalus.
One out of every 500 children born has hydrocephalus and/or related conditions. There is no cure for hydrocephalus just surgery and treatments to manage this condition.
Hydrocephalus is a very complex condition that many people, doctors and myself have trouble understanding. What makes hydrocephalus so complicated is how no one person with hydrocephalus and issues with it are never the same from person to person.
My first blog post tells my story and how I had hydrocephalus and never knew this was a condition that had to be managed for my life time. Many of the links to the right of my blog are stepping stones to me understanding this condition I have had since 1983.
In 2002 I started having complications but still did not know or even had ever heard of hydrocephalus. Now that I have learned of my condition I am telling my story through blog to hopefully reach out and help someone else.
Here is the link to my story: http://pepperknowsbest.blogspot.com/2009/05/i-have-hydro-hydro-doesnt-have-me.html
One out of every 500 children born has hydrocephalus and/or related conditions. There is no cure for hydrocephalus just surgery and treatments to manage this condition.
Hydrocephalus is a very complex condition that many people, doctors and myself have trouble understanding. What makes hydrocephalus so complicated is how no one person with hydrocephalus and issues with it are never the same from person to person.
My first blog post tells my story and how I had hydrocephalus and never knew this was a condition that had to be managed for my life time. Many of the links to the right of my blog are stepping stones to me understanding this condition I have had since 1983.
In 2002 I started having complications but still did not know or even had ever heard of hydrocephalus. Now that I have learned of my condition I am telling my story through blog to hopefully reach out and help someone else.
Here is the link to my story: http://pepperknowsbest.blogspot.com/2009/05/i-have-hydro-hydro-doesnt-have-me.html
Monday, October 5, 2009
Water exercise
With all my medicine craziness I got out of the routine of my water fitness class. Honestly I have trouble doing it without complications of the medicine side effects. My fatigue just limits me to the things I am able to do. Then when something tweaks the fatigue I barely feel like eating and getting out of bed.
I have got on my treadmill 2 different times in the past 4 days. One day I walked 6 minutes the next I walked 8 minutes. So I am hoping I can do some water exercise today for the first time in several weeks.
The class is very low impact and you are not doing a lot that can hurt you or probably for health people even break a sweat.
I have been attending this class for a little over a year now. From time to time taking breaks for surgery or general hydro craziness going on.
I first started going to open swim to see if I could do much in the water. I had been suggested to try a program for brain injury at a local rehabilitation. But the class was a half day or longer several times a week. I knew for sure I was not strong enough for that.
When I first started the open swim I had a really hard time. I still had a programmable shunt that I could not find an adjustment that would work. And my fatigue and headaches were much worse. But I did find the humidity in the pool area did help the headache a bit.
I had life guards always on edge when they saw me in the pool. I knew I was not strong enough to be in deeper than where I could stand up if I got in trouble. I was in trouble a lot. I would swim the short length of the pool. usually on my back because if is much easier for me. When and if I made it to the side I was out of breath, head hurting like no other and felt like I was dieing. I could do this 3 or 4 times during the open swim having to take 5 to 10 minutes each time to recover.
But I am now doing the lowest impact water exercise. So today first day back we will see how my body and brain will adjust.
I have got on my treadmill 2 different times in the past 4 days. One day I walked 6 minutes the next I walked 8 minutes. So I am hoping I can do some water exercise today for the first time in several weeks.
The class is very low impact and you are not doing a lot that can hurt you or probably for health people even break a sweat.
I have been attending this class for a little over a year now. From time to time taking breaks for surgery or general hydro craziness going on.
I first started going to open swim to see if I could do much in the water. I had been suggested to try a program for brain injury at a local rehabilitation. But the class was a half day or longer several times a week. I knew for sure I was not strong enough for that.
When I first started the open swim I had a really hard time. I still had a programmable shunt that I could not find an adjustment that would work. And my fatigue and headaches were much worse. But I did find the humidity in the pool area did help the headache a bit.
I had life guards always on edge when they saw me in the pool. I knew I was not strong enough to be in deeper than where I could stand up if I got in trouble. I was in trouble a lot. I would swim the short length of the pool. usually on my back because if is much easier for me. When and if I made it to the side I was out of breath, head hurting like no other and felt like I was dieing. I could do this 3 or 4 times during the open swim having to take 5 to 10 minutes each time to recover.
But I am now doing the lowest impact water exercise. So today first day back we will see how my body and brain will adjust.
Sunday, October 4, 2009
Full moon tonight
I could look at the calander to be for certain but I have the headache for enough proof.
Friday, October 2, 2009
I will blog back soon
I have been having much craziness going on lately. But
I wanted to show off my new rock fireplace that was
finally installed.
I'm having warm images of opening presents by the fire.
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