Re: Update on vertigo, brain, thrush

[Guest guest]

In a message dated 10/26/2006 10:40:01 PM Eastern Standard Time, pj7@... writes:

Hello all,I tend to think this group has the smartest people on it, so I am posting my confusion here.I saw the neurologist yesterday. My MRI shows a completely normal brain, no matter what my husband thinks. No bright spots etc - just a brain.

Hi a,

Where did you get the MRI, if I may ask? Your story sounds *similar* not exactly though, but enough to make me question. I struggled for about 5-6 years before I found a good enough neurologist/hospital to recognize my rare brain injury. Fortunately in the last few years radiologists/neurologist are better at recognizing it. I have Arnold Chiari Malformation (corrected by surgery 2 yrs ago). It's where the cerebellum herniates into the spinal column. Sometimes the herniation looks very small on the MRI but can actually be further down.

I'm not saying this is what you have, just want to let you know it's often overlooked.

KLS

[Guest guest]

a

we sort of expect an MRI to be normal. The problem is with imaging we

are only going to benefit from top end imaging that may show some

real clues as to what is occuring.An egs recently had to do with a

local footballer who had a pretty normal MRI, yet under surgery they

found a 1 cm tear in his tendon... this is the missing link that we

have had to learn the hard way, also knowing many being sent off to a

neurologist- there's alway's this gap.But not that you did anything

wrong, there's the odd occasion when something sticks out like a sore

thumb ..BUT even then the 'treatments offerings' are pathetic and

more a management tool that doesn't alway's stack up.... more often

than not.

a just learn as much as you can from people's experiences with

each field of medicine so you can dictate the level of diagnosis

needed to be reached in order to get you some real answers.Just

another clue, they really can't image endometreosis (whcih is a mess)

with an MRI, they normally go in by camera thru the belly

button...Each step of everyone's journey in these ilnesses can be

very helpfull for all of us.

tony

>

> Hello all,

> I tend to think this group has the smartest people on it, so I am

> posting my confusion here.

>

> I saw the neurologist yesterday. My MRI shows a completely normal

> brain, no matter what my husband thinks. No bright spots etc - just

a

> brain.

>

> I questioned whether I had a low grade fungal infection in my brain

> since I had serious thrush when the vertigo began. I was only ever

> given 4 days of diflucan which cleared up the thrush except for the

> sort throat and vertigo and nystagmus. I can't even reach my

general

> practitioner on the phone, so no clue as to what was in the throat

> culture back then.

>

> Meanwhile according to the neuro I don't have enough symptoms to

have

> menigitis - no excruciating headache, just and ache for six months,

> no stiff neck, no fever, no blurred vision.

>

> I can't get any more diflucan unless I can see my regular doc and

beg

> her for some.

>

> The neuro gave me samples of Lyria saying maybe if I cut the pain

> cycle in the nerves the pain would go away. He won't prescribe

> anything like diflucan or antibiotics unless I have a spinal tap

and

> something shows up. I figure what is going to show up with a

> completely normal MRI???? It's not like I have visible lyme damage.

>

> I'm scared to take the Lyrica. I have problems with Actos, Benicar

> and SSRIs - I know, I know Lyrica is not an SSRI, but I just don't

> trust these types of medicine. Are they worth the risk?

>

> Penny, I still need to look in the closet to see if I have any

> Benicar left, but I am rather nervous about that too.

>

> Okay, I am rambling. Maybe someone here will give me some clues.

> Tony???

>

> Best at my worst,

> a

>

[Guest guest]

I'd do the spinal tap, for sure. They're a lot safer than people think, and it could be very informative. Especially if you've got inflammation of the brain, it should show up. pennypjeanneus <pj7@...> wrote: Hello all,I tend to think this group has the smartest people on it, so I am posting my confusion here.I saw the neurologist yesterday. My MRI shows a completely normal brain, no matter what my husband thinks. No bright spots etc - just a brain.I

questioned whether I had a low grade fungal infection in my brain since I had serious thrush when the vertigo began. I was only ever given 4 days of diflucan which cleared up the thrush except for the sort throat and vertigo and nystagmus. I can't even reach my general practitioner on the phone, so no clue as to what was in the throat culture back then. Meanwhile according to the neuro I don't have enough symptoms to have menigitis - no excruciating headache, just and ache for six months, no stiff neck, no fever, no blurred vision.I can't get any more diflucan unless I can see my regular doc and beg her for some.The neuro gave me samples of Lyria saying maybe if I cut the pain cycle in the nerves the pain would go away. He won't prescribe anything like diflucan or antibiotics unless I have a spinal tap and something shows up. I figure what is going to show up with a completely normal MRI???? It's not

like I have visible lyme damage.I'm scared to take the Lyrica. I have problems with Actos, Benicar and SSRIs - I know, I know Lyrica is not an SSRI, but I just don't trust these types of medicine. Are they worth the risk? Penny, I still need to look in the closet to see if I have any Benicar left, but I am rather nervous about that too. Okay, I am rambling. Maybe someone here will give me some clues. Tony???Best at my worst,a

[Guest guest]

a, when I said inflammation of the brain, I specifically meant excessive fluid creating excessive pressure (intracranial hypertension or pseudotumor cerebri), which can cause a lot of symptoms like you're describing. I think this is the result of an infectious process (as per Wheldon/Stratton), but regardless of that, reducing the pressure can reduce and eliminate many symptoms. Still need to address the root cause of the ICH, but the spinal tap should tell you if this is an issue. Also, have you tried any new antibiotics? Your zithromax or whatever you're taking may no longer be effective. Whenever I start getting new or recurring symptoms, switching up my antibiotics will often have an almost immediate effect, which makes me know for certain that whatever I'm dealing with has something to do with a change in my organisms. penny pjeanneus <pj7@...> wrote: Hello all,I tend to think this group has the smartest people on it, so I am posting my confusion here.I saw the neurologist yesterday. My MRI shows a completely normal brain, no matter what my husband thinks. No bright spots etc - just a brain.I questioned whether I had a low grade fungal infection in my brain since I had serious thrush when the vertigo began. I was only ever given 4 days of diflucan which cleared up the thrush except for the

sort throat and vertigo and nystagmus. I can't even reach my general practitioner on the phone, so no clue as to what was in the throat culture back then. Meanwhile according to the neuro I don't have enough symptoms to have menigitis - no excruciating headache, just and ache for six months, no stiff neck, no fever, no blurred vision.I can't get any more diflucan unless I can see my regular doc and beg her for some.The neuro gave me samples of Lyria saying maybe if I cut the pain cycle in the nerves the pain would go away. He won't prescribe anything like diflucan or antibiotics unless I have a spinal tap and something shows up. I figure what is going to show up with a completely normal MRI???? It's not like I have visible lyme damage.I'm scared to take the Lyrica. I have problems with Actos, Benicar and SSRIs - I know, I know Lyrica is not an SSRI, but I just don't trust these types of

medicine. Are they worth the risk? Penny, I still need to look in the closet to see if I have any Benicar left, but I am rather nervous about that too. Okay, I am rambling. Maybe someone here will give me some clues. Tony???Best at my worst,a

[Guest guest]

For those who need to save money, walmart has 4

dollars RX. Fluconozale, generic diflucan is covered

in 27 states.

--- pjeanneus <pj7@...> wrote:

> Hello all,

> I tend to think this group has the smartest people

> on it, so I am

> posting my confusion here.

>

> I saw the neurologist yesterday. My MRI shows a

> completely normal

> brain, no matter what my husband thinks. No bright

> spots etc - just a

> brain.

>

> I questioned whether I had a low grade fungal

> infection in my brain

> since I had serious thrush when the vertigo began. I

> was only ever

> given 4 days of diflucan which cleared up the thrush

> except for the

> sort throat and vertigo and nystagmus. I can't even

> reach my general

> practitioner on the phone, so no clue as to what was

> in the throat

> culture back then.

>

> Meanwhile according to the neuro I don't have enough

> symptoms to have

> menigitis - no excruciating headache, just and ache

> for six months,

> no stiff neck, no fever, no blurred vision.

>

> I can't get any more diflucan unless I can see my

> regular doc and beg

> her for some.

>

> The neuro gave me samples of Lyria saying maybe if I

> cut the pain

> cycle in the nerves the pain would go away. He won't

> prescribe

> anything like diflucan or antibiotics unless I have

> a spinal tap and

> something shows up. I figure what is going to show

> up with a

> completely normal MRI???? It's not like I have

> visible lyme damage.

>

> I'm scared to take the Lyrica. I have problems with

> Actos, Benicar

> and SSRIs - I know, I know Lyrica is not an SSRI,

> but I just don't

> trust these types of medicine. Are they worth the

> risk?

>

> Penny, I still need to look in the closet to see if

> I have any

> Benicar left, but I am rather nervous about that

> too.

>

> Okay, I am rambling. Maybe someone here will give me

> some clues.

> Tony???

>

> Best at my worst,

> a

>

>

>

__________________________________________________

[Guest guest]

Penny

Even these are not geared towards locating bacteria(frequently

dismissed as contamination) they are more prone to read into the

number of white cells and a few other microscopical evaluations,

which is depressing especially when you feel your undertaking what

you'd consider informative to your health.My cousin with MS has had

many of these taps and believe me noone was interested in what bugs

where in there..

> Hello all,

> I tend to think this group has the smartest people on it, so I am

> posting my confusion here.

>

> I saw the neurologist yesterday. My MRI shows a completely normal

> brain, no matter what my husband thinks. No bright spots etc - just

a

> brain.

>

> I questioned whether I had a low grade fungal infection in my brain

> since I had serious thrush when the vertigo began. I was only ever

> given 4 days of diflucan which cleared up the thrush except for the

> sort throat and vertigo and nystagmus. I can't even reach my

general

> practitioner on the phone, so no clue as to what was in the throat

> culture back then.

>

> Meanwhile according to the neuro I don't have enough symptoms to

have

> menigitis - no excruciating headache, just and ache for six months,

> no stiff neck, no fever, no blurred vision.

>

> I can't get any more diflucan unless I can see my regular doc and

beg

> her for some.

>

> The neuro gave me samples of Lyria saying maybe if I cut the pain

> cycle in the nerves the pain would go away. He won't prescribe

> anything like diflucan or antibiotics unless I have a spinal tap

and

> something shows up. I figure what is going to show up with a

> completely normal MRI???? It's not like I have visible lyme damage.

>

> I'm scared to take the Lyrica. I have problems with Actos, Benicar

> and SSRIs - I know, I know Lyrica is not an SSRI, but I just don't

> trust these types of medicine. Are they worth the risk?

>

> Penny, I still need to look in the closet to see if I have any

> Benicar left, but I am rather nervous about that too.

>

> Okay, I am rambling. Maybe someone here will give me some clues.

> Tony???

>

> Best at my worst,

> a

>

[Guest guest]

In a message dated 10/27/2006 9:08:38 AM Eastern Standard Time, KateDunlay@... writes:

What symptoms did the surgery correct?- Kate

Headaches, chronic coughing, trouble swallowing (I was able to go from baby food to some solid foods), neck pain, dizziness, etc - I have a VP Shunt. When they did my shunt surgery the neurosurgeon said that I had ten times they amount of intercranial pressure than they thought. The surgery saved my life. If I didn't have it done I would have stroked, hemmoraged, paralyzed or passed away.

KLS

[Guest guest]

On Oct 27, 2006, at 12:35 AM, ThunderLungsABA@... wrote:

> I have Arnold Chiari Malformation (corrected by surgery 2 yrs

> ago). It's where the cerebellum herniates into the spinal column.

> Sometimes the herniation looks very small on the MRI but can

> actually be further down.

What symptoms did the surgery correct?

- Kate

[Guest guest]

Hi Penny,

It feels like my brain is swollen. I actually didn't start any new

antibiotics when this began or continued. I did take 4 days of

diflucan that cleared up the OBVIOUS thrush. My best bet is that the

cause of the thrush is still there and has infected my brain. I can't

get anyone to buy into this notion. They say I would have to be much

sicker. I think a pressure headache and vertigo for SIX MONTHS is

pretty sick.

a

>

> a, when I said inflammation of the brain, I specifically meant

excessive fluid creating excessive pressure (intracranial

hypertension or pseudotumor cerebri), which can cause a lot of

symptoms like you're describing. I think this is the result of an

infectious process (as per Wheldon/Stratton), but regardless of that,

reducing the pressure can reduce and eliminate many symptoms. Still

need to address the root cause of the ICH, but the spinal tap should

tell you if this is an issue.

>

> Also, have you tried any new antibiotics? Your zithromax or

whatever you're taking may no longer be effective. Whenever I start

getting new or recurring symptoms, switching up my antibiotics will

often have an almost immediate effect, which makes me know for

certain that whatever I'm dealing with has something to do with a

change in my organisms.

>

> penny

>

>

>

> pjeanneus <pj7@...> wrote:

> Hello all,

> I tend to think this group has the smartest people on it, so I am

> posting my confusion here.

>

> I saw the neurologist yesterday. My MRI shows a completely normal

> brain, no matter what my husband thinks. No bright spots etc - just

a

> brain.

>

> I questioned whether I had a low grade fungal infection in my brain

> since I had serious thrush when the vertigo began. I was only ever

> given 4 days of diflucan which cleared up the thrush except for the

> sort throat and vertigo and nystagmus. I can't even reach my

general

> practitioner on the phone, so no clue as to what was in the throat

> culture back then.

>

> Meanwhile according to the neuro I don't have enough symptoms to

have

> menigitis - no excruciating headache, just and ache for six months,

> no stiff neck, no fever, no blurred vision.

>

> I can't get any more diflucan unless I can see my regular doc and

beg

> her for some.

>

> The neuro gave me samples of Lyria saying maybe if I cut the pain

> cycle in the nerves the pain would go away. He won't prescribe

> anything like diflucan or antibiotics unless I have a spinal tap

and

> something shows up. I figure what is going to show up with a

> completely normal MRI???? It's not like I have visible lyme damage.

>

> I'm scared to take the Lyrica. I have problems with Actos, Benicar

> and SSRIs - I know, I know Lyrica is not an SSRI, but I just don't

> trust these types of medicine. Are they worth the risk?

>

> Penny, I still need to look in the closet to see if I have any

> Benicar left, but I am rather nervous about that too.

>

> Okay, I am rambling. Maybe someone here will give me some clues.

> Tony???

>

> Best at my worst,

> a

>

[Guest guest]

Tony, that is exactly what worries me about a spinal tap. He is going

to run the standard borrelia test which has been negative for me

since day 1, then he might run a couple other tests. Who knows if he

will test for any reality?

a

>

> Penny

> Even these are not geared towards locating bacteria(frequently

> dismissed as contamination) they are more prone to read into the

> number of white cells and a few other microscopical evaluations,

> which is depressing especially when you feel your undertaking what

> you'd consider informative to your health.My cousin with MS has had

> many of these taps and believe me noone was interested in what bugs

> where in there..

>

>

>

>

>

> > Hello all,

> > I tend to think this group has the smartest people on it, so I am

> > posting my confusion here.

> >

> > I saw the neurologist yesterday. My MRI shows a completely normal

> > brain, no matter what my husband thinks. No bright spots etc -

just

> a

> > brain.

> >

> > I questioned whether I had a low grade fungal infection in my

brain

> > since I had serious thrush when the vertigo began. I was only

ever

> > given 4 days of diflucan which cleared up the thrush except for

the

> > sort throat and vertigo and nystagmus. I can't even reach my

> general

> > practitioner on the phone, so no clue as to what was in the

throat

> > culture back then.

> >

> > Meanwhile according to the neuro I don't have enough symptoms to

> have

> > menigitis - no excruciating headache, just and ache for six

months,

> > no stiff neck, no fever, no blurred vision.

> >

> > I can't get any more diflucan unless I can see my regular doc and

> beg

> > her for some.

> >

> > The neuro gave me samples of Lyria saying maybe if I cut the pain

> > cycle in the nerves the pain would go away. He won't prescribe

> > anything like diflucan or antibiotics unless I have a spinal tap

> and

> > something shows up. I figure what is going to show up with a

> > completely normal MRI???? It's not like I have visible lyme

damage.

> >

> > I'm scared to take the Lyrica. I have problems with Actos,

Benicar

> > and SSRIs - I know, I know Lyrica is not an SSRI, but I just

don't

> > trust these types of medicine. Are they worth the risk?

> >

> > Penny, I still need to look in the closet to see if I have any

> > Benicar left, but I am rather nervous about that too.

> >

> > Okay, I am rambling. Maybe someone here will give me some clues.

> > Tony???

> >

> > Best at my worst,

> > a

> >

>

[Guest guest]

It is extremely unlikely that I have chiari formation. I have NEVER

had this symptom in 11 years of illness until the present. It began at

a time that I was the healthiest I have been in years. I absolutely do

not have a chiari formation from birth. What I may have is brain

swelling due to inflammation. My study on cases where this was the

cause of brain swelling the chiari surgery only fixed the problem

briefly. The infected brain is perfectly capable of swelling to fill

up the extra space created by the surgery and then you will have the

same old brain symptoms. DO NOT HAVE CHIARI SURGERY UNLESS YOU CAN BE

COMPLETEY ASSURED YOU ONLY HAVE A SMALL SPACE AT THE BASE OF YOUR

BRAIN SINCE BIRTH AND HAVE HAD A PRESSURE HEADACHE SINCE BIRTH.

a Carnes

>

>

> On Oct 27, 2006, at 12:35 AM, ThunderLungsABA@... wrote:

>

> > I have Arnold Chiari Malformation (corrected by surgery 2 yrs

> > ago). It's where the cerebellum herniates into the spinal column.

> > Sometimes the herniation looks very small on the MRI but can

> > actually be further down.

> What symptoms did the surgery correct?

>

> - Kate

>

[Guest guest]

I must add that the MRI being clear is very good news. You see and

MRI would have shown that my Lyme disease was still there. My son's

MRI has bright spots and holes - very abnormal. I was really

expecting mine to show something. The fact that it is clear is good

news indeed as far as Lyme. So I have ruled out one huge issue -

whether this nerve damage was from borrelia. I think it is not.

I've been to three dentists. No, I can't know if there is infection

in the tooth or jaw, but the very good x-rays by both the oral

surgeon and endodontist indicate NOTHING of inflammation. The tests

done on the tooth that had all the work done clearly indicate an

inflammed nerve. I am giving that time to heal before I take further

action of any invasive sort.

Does anyone think that the coincidence of having severe thrush at the

time the vertigo started is not a KEY??? I mean I don't think I have

ever had thrush in my life.

a

> I know, Tony, but IF she's got ICH, treating that will help her

symptoms not to mention her life span. I believe the ICH is a result

of a bacterial infection which she'd have to pursue seperately, but

reducing brain pressure would make a big difference in how she feels.

The spinal tap is just to determine if ICH is a problem. Since they

offered it, I'd take it. I've been wanting to get one myself, but I'd

have to go off the Benicar, etc, which I know reduces inflammation on

my brain.

>

> a, we've told you numerous times that an MRI will not show

you anything if you've got a bone infection. A dentist will not tell

you. A neurologist will not tell you. I've known dozens of people

who've sufferred with so called " nerve damage " just like you're

describing for years before finally getting dx'd correctly with

osteomyeltis of the jaw. You need to start researching this, get

really good CT scans, and a doctor who understands what's going on in

your head. It is a most important region of your body, not to

mention, your jaw bone & teeth are sitting on the largest nerve in

your body, the trigeminal nerve, which goes directly to the brain and

affects just about everything in your body, including your hpa axis

and your autonomic nervous system! You've also got your thyroid and

other important glands in the area which can be affected negatively.

If your tooth is infected, as it seems to be, but you continue to

ignore it, you could be looking at years of increasing

> illness.

>

> penny

>

> dumbaussie2000 <dumbaussie2000@...> wrote:

> Penny

> Even these are not geared towards locating bacteria(frequently

> dismissed as contamination) they are more prone to read into the

> number of white cells and a few other microscopical evaluations,

> which is depressing especially when you feel your undertaking what

> you'd consider informative to your health.My cousin with MS has had

> many of these taps and believe me noone was interested in what bugs

> where in there..

>

>

> > Hello all,

> > I tend to think this group has the smartest people on it, so I am

> > posting my confusion here.

> >

> > I saw the neurologist yesterday. My MRI shows a completely normal

> > brain, no matter what my husband thinks. No bright spots etc -

just

> a

> > brain.

> >

> > I questioned whether I had a low grade fungal infection in my

brain

> > since I had serious thrush when the vertigo began. I was only

ever

> > given 4 days of diflucan which cleared up the thrush except for

the

> > sort throat and vertigo and nystagmus. I can't even reach my

> general

> > practitioner on the phone, so no clue as to what was in the

throat

> > culture back then.

> >

> > Meanwhile according to the neuro I don't have enough symptoms to

> have

> > menigitis - no excruciating headache, just and ache for six

months,

> > no stiff neck, no fever, no blurred vision.

> >

> > I can't get any more diflucan unless I can see my regular doc and

> beg

> > her for some.

> >

> > The neuro gave me samples of Lyria saying maybe if I cut the pain

> > cycle in the nerves the pain would go away. He won't prescribe

> > anything like diflucan or antibiotics unless I have a spinal tap

> and

> > something shows up. I figure what is going to show up with a

> > completely normal MRI???? It's not like I have visible lyme

damage.

> >

> > I'm scared to take the Lyrica. I have problems with Actos,

Benicar

> > and SSRIs - I know, I know Lyrica is not an SSRI, but I just

don't

> > trust these types of medicine. Are they worth the risk?

> >

> > Penny, I still need to look in the closet to see if I have any

> > Benicar left, but I am rather nervous about that too.

> >

> > Okay, I am rambling. Maybe someone here will give me some clues.

> > Tony???

> >

> > Best at my worst,

> > a

> >

>

[Guest guest]

Kate,

This clarifies a lot. I would still ask what is causing the extra

fluid? YOu were not born with this. Yes, the surgery saved you life,

but you still have the underlying cause going on. God forbid, your

symptoms should return, but, in any case, I would be frantically

looking for an infectious cause of this excess fluid.

a Carnes

>

>

> In a message dated 10/27/2006 9:08:38 AM Eastern Standard Time,

> KateDunlay@... writes:

>

> What symptoms did the surgery correct?

>

> - Kate

>

>

> Headaches, chronic coughing, trouble swallowing (I was able to go

from baby

> food to some solid foods), neck pain, dizziness, etc - I have a VP

Shunt.

> When they did my shunt surgery the neurosurgeon said that I had ten

times they

> amount of intercranial pressure than they thought. The surgery

saved my life.

> If I didn't have it done I would have stroked, hemmoraged,

paralyzed or

> passed away.

>

> KLS

>

[Guest guest]

In a message dated 10/27/2006 2:58:51 PM Eastern Standard Time, pennyhoule@... writes:

The Chiari surgery is a whole 'nother ball of wax and I agree with a on that being risky and possibly even dodgy (although not so different from how they treat Graves' patients, which I think is barbaric, so what does that tell you?).

It's both risky and *dodgy* if you really don't have a true Chiari malformation. I agree, don't have the surgery just to relieve pressure. Like I mentioned in another e-mail, a skilled knowledgable neurosurgeon should know the difference. I think we have to stay grounded on this group and realize we're not doctors and we don't know it all. We shouldn't assume we know someone's elses body. Just give our suggestions and our experiences to maybe help someone else.

KLS

[Guest guest]

Yes, this intercranial pressure is exactly what I'm talking about, and yes, shunts are the way the pressure is easily relieved for people suffering from ICH (which can be dx'd through a spinal tap). The Chiari surgery is a whole 'nother ball of wax and I agree with a on that being risky and possibly even dodgy (although not so different from how they treat Graves' patients, which I think is barbaric, so what does that tell you?). I'd do lots of research on ICH before pursuing the chiari malformation dx very seriously, unless, like a says, you were born with it and it's easily identified as a true malformation, not simply to relieve pressure. It's kind of funny, saying this, because Grave's disease (related to thyroid disease) is a condition where swelling forces the eyeballs to protrude (sometimes hideously). You know how they treat this???? Every day???? By carving away the bone around the eye sockets. They

don't treat the pressure causing the swelling, they reduce the bone. And naturally, this is often only a temporary fix, because the swelling continues and the eyes protrude again. I've known people who've had 5 surgeries! And none of the medical geniuses can figure out why the swelling pushes the eyes forward or where the swelling comes from (nor will they acknowledge all the science that links Thyroid disease to bacterial infections). Anyway, ICH (aka pseudotumor cerebri) is something we should all be spending a lot more time researching. pennyThunderLungsABA@... wrote: In a message dated 10/27/2006 9:08:38 AM Eastern Standard Time, KateDunlayhfx (DOT) eastlink.ca writes: What symptoms did the surgery correct?- Kate Headaches, chronic coughing, trouble swallowing (I was able to go from baby food to some solid foods), neck pain, dizziness, etc - I have a VP Shunt. When they did my shunt surgery the neurosurgeon said that I had ten times they amount of intercranial pressure than they thought. The surgery saved my life. If I didn't have it done I would have stroked, hemmoraged, paralyzed or passed away. KLS

[Guest guest]

In a message dated 10/27/2006 6:42:42 PM Eastern Standard Time, pennyhoule@... writes:

I totally agree, and am very glad you shared your experience and the results of the surgery.

The "dodgy" aspect I mentioned, I really don't know if it's justified or not. I know there were some law suits around the chiari malformation surgery, which may have unfortunately halted futher investigation and discovery into an important area involving fluid buildup on the brain, which has causes in addition to the birth defect. I think this whole area, which includes ICH, needs lots more investigation and it's something we should all be looking at a lot more closely.

Glad you agree. Thank you. Yeah. Oh there's plenty of botched Chiari surgeries and they go to my neurosurgeon to actually fix what the other neurosurgeons messed up on. I did my research and I went to the best. I said, "This is my brain and I won't settle for anyone but the best." There's so many people, especially including some doctors that don't understand Chiari because it's so rare and unique. Therefore, a lot of misconceptions, misunderstandings, are always causing patients grief. Yeah. I'm sure my neurosurgeons are already looking into those reasons. They're very intelligent, skilled surgeons. I thank God for them every day. I just saw them for a 2 year follow up two weeks ago. And all is well. My ventricles look good, no lesions (I have MS too), etc.

KLS

[Guest guest]

I totally agree, and am very glad you shared your experience and the results of the surgery. The "dodgy" aspect I mentioned, I really don't know if it's justified or not. I know there were some law suits around the chiari malformation surgery, which may have unfortunately halted futher investigation and discovery into an important area involving fluid buildup on the brain, which has causes in addition to the birth defect. I think this whole area, which includes ICH, needs lots more investigation and it's something we should all be looking at a lot more closely. pennyThunderLungsABA@... wrote: In a message dated 10/27/2006 2:58:51 PM Eastern Standard Time, pennyhoule writes: The Chiari surgery is a whole 'nother ball of wax and I agree with a on that being risky and possibly even dodgy (although not so different from how they treat Graves' patients, which I think is barbaric, so what does that tell you?). It's both risky and *dodgy* if you really don't have a true Chiari malformation. I agree, don't have the surgery just to relieve pressure. Like I mentioned in another e-mail, a skilled

knowledgable neurosurgeon should know the difference. I think we have to stay grounded on this group and realize we're not doctors and we don't know it all. We shouldn't assume we know someone's elses body. Just give our suggestions and our experiences to maybe help someone else. KLS

[Guest guest]

I mentioned before, one of the reasons I keep taking the benicar, is because I believe quite firmly that it's reducing pressure on my brain. This is one of the possible benefits being studied, and touted by Moscowitz, i.e. Benicar's effectiveness in treating viral infections which affect the brain, like SARS, etc. ThunderLungsABA@... wrote: In a message dated

10/27/2006 2:58:51 PM Eastern Standard Time, pennyhoule writes: The Chiari surgery is a whole 'nother ball of wax and I agree with a on that being risky and possibly even dodgy (although not so different from how they treat Graves' patients, which I think is barbaric, so what does that tell you?). It's both risky and *dodgy* if you really don't have a true Chiari malformation. I agree, don't have the surgery just to relieve pressure. Like I mentioned in another e-mail, a skilled knowledgable neurosurgeon should know the difference. I think we have to stay grounded on this group and realize we're not doctors and we don't know it all. We shouldn't assume we know someone's elses body. Just give our suggestions and our experiences to maybe help someone

else. KLS

[Guest guest]

Hmmm, here's an interesting discussion covering variations of drugs we've considered and discussed, ACE2 + Tagamet + Advil + Benadryl (benicar, cimetedine, ibuprofen, possibly guafenisen?), but what's interesting to me is the mention of psuedomonas as it relates to viral infections. Pseudomonas Aruginosa is a really difficult bacteria to eradicate, one that many of us may be carrying, and the fact that these drugs have a potential for treating it is very interesting. http://www.flutrackers.com/forum/archive/index.php?t-6816.html

[Guest guest]

a

That is a very good post! I have read many people's experiences with

that surgery and you hit it on the head.Like many you may have a

small period of improvement and then whammo back to normal.

> >

> > > I have Arnold Chiari Malformation (corrected by surgery 2 yrs

> > > ago). It's where the cerebellum herniates into the spinal

column.

> > > Sometimes the herniation looks very small on the MRI but can

> > > actually be further down.

> > What symptoms did the surgery correct?

> >

> > - Kate

> >

>

[Guest guest]

You know I was quite annoyed when I had mine and they run these

freakin tests which then they are trying to convince everyone they

see nothing wrong.My lab friend told me that bacteria ain't a

priority and if it's sinus bugs it's a contaminant blah blah..They

should look for spinal fluid pressure in your case as a possable

angle of diagnosis if you are to have any luck like penny is

describing.I get pretty pissed with this because if you present you

need to make sure they go the extra mile so your not wasting your

time like many before you.I honestly thought beauty, I'll get mine

done, they'll grow the culprits, and TREAT ME!!!!That was my first

hand exprience your dealing with a system that's geared toewards

making money from diagnosing without the diagnosing being

important..the important part for the system stems from how many

angles they can pursue for there own bottom lines.

> > > Hello all,

> > > I tend to think this group has the smartest people on it, so I

am

> > > posting my confusion here.

> > >

> > > I saw the neurologist yesterday. My MRI shows a completely

normal

> > > brain, no matter what my husband thinks. No bright spots etc -

> just

> > a

> > > brain.

> > >

> > > I questioned whether I had a low grade fungal infection in my

> brain

> > > since I had serious thrush when the vertigo began. I was only

> ever

> > > given 4 days of diflucan which cleared up the thrush except for

> the

> > > sort throat and vertigo and nystagmus. I can't even reach my

> > general

> > > practitioner on the phone, so no clue as to what was in the

> throat

> > > culture back then.

> > >

> > > Meanwhile according to the neuro I don't have enough symptoms

to

> > have

> > > menigitis - no excruciating headache, just and ache for six

> months,

> > > no stiff neck, no fever, no blurred vision.

> > >

> > > I can't get any more diflucan unless I can see my regular doc

and

> > beg

> > > her for some.

> > >

> > > The neuro gave me samples of Lyria saying maybe if I cut the

pain

> > > cycle in the nerves the pain would go away. He won't prescribe

> > > anything like diflucan or antibiotics unless I have a spinal

tap

> > and

> > > something shows up. I figure what is going to show up with a

> > > completely normal MRI???? It's not like I have visible lyme

> damage.

> > >

> > > I'm scared to take the Lyrica. I have problems with Actos,

> Benicar

> > > and SSRIs - I know, I know Lyrica is not an SSRI, but I just

> don't

> > > trust these types of medicine. Are they worth the risk?

> > >

> > > Penny, I still need to look in the closet to see if I have any

> > > Benicar left, but I am rather nervous about that too.

> > >

> > > Okay, I am rambling. Maybe someone here will give me some

clues.

> > > Tony???

> > >

> > > Best at my worst,

> > > a

> > >

> >

>

[Guest guest]

a

Thrush can be candida or pseudonomas or heavy staph epi, they all

can respond to difflucan.\

tony

> > > Hello all,

> > > I tend to think this group has the smartest people on it, so I

am

> > > posting my confusion here.

> > >

> > > I saw the neurologist yesterday. My MRI shows a completely

normal

> > > brain, no matter what my husband thinks. No bright spots etc -

> just

> > a

> > > brain.

> > >

> > > I questioned whether I had a low grade fungal infection in my

> brain

> > > since I had serious thrush when the vertigo began. I was only

> ever

> > > given 4 days of diflucan which cleared up the thrush except for

> the

> > > sort throat and vertigo and nystagmus. I can't even reach my

> > general

> > > practitioner on the phone, so no clue as to what was in the

> throat

> > > culture back then.

> > >

> > > Meanwhile according to the neuro I don't have enough symptoms

to

> > have

> > > menigitis - no excruciating headache, just and ache for six

> months,

> > > no stiff neck, no fever, no blurred vision.

> > >

> > > I can't get any more diflucan unless I can see my regular doc

and

> > beg

> > > her for some.

> > >

> > > The neuro gave me samples of Lyria saying maybe if I cut the

pain

> > > cycle in the nerves the pain would go away. He won't prescribe

> > > anything like diflucan or antibiotics unless I have a spinal

tap

> > and

> > > something shows up. I figure what is going to show up with a

> > > completely normal MRI???? It's not like I have visible lyme

> damage.

> > >

> > > I'm scared to take the Lyrica. I have problems with Actos,

> Benicar

> > > and SSRIs - I know, I know Lyrica is not an SSRI, but I just

> don't

> > > trust these types of medicine. Are they worth the risk?

> > >

> > > Penny, I still need to look in the closet to see if I have any

> > > Benicar left, but I am rather nervous about that too.

> > >

> > > Okay, I am rambling. Maybe someone here will give me some

clues.

> > > Tony???

> > >

> > > Best at my worst,

> > > a

> > >

> >

>

[Guest guest]

Tony, I only wish I could get a doctor here to give me a script for

diflucan. I can't even get an apointment right now. Las Vegas is

growing very fast, and we just don't have the medical care we need.

It is scary.

KLS, I understand your point on chiari. I don't mean to discredit it

for you. I used to live near Charlotte, NC. There was a doc there who

became quite famous in the cfs/fms community for doing chiari surgery

on EVERYONE. He lost his surgery privileges in Charlotte and then

moved to Asheville where he continued the same malpractice.

But I also have been on these email lists a long time. The reports I

heard on chiari cases were often that they did well for a few months

and then gradually the swelling returned or filled up the new brain

space. I also heard this from a doctor, but alas I have forgotten

which one.

I do know of one patient who was helped, and you are now another.

Of course we must state that you are still on this list, so chiari

must not have fixed everything that you have???

a

>

>

> In a message dated 10/27/2006 9:40:07 PM Eastern Standard Time,

> dumbaussie2000@... writes:

>

> a

> That is a very good post! I have read many people's experiences

with

> that surgery and you hit it on the head.Like many you may have a

> small period of improvement and then whammo back to normal.

>

>

> Yes, Chiari can come back, for various reasons. Also the surgery

isn't a

> cure all. You need a lot of self-care, so that you don't re-injure

or aggravate

> your injury. Let me just irriterate that Chiari has successfully

helped many

> many people, myself included and shouldn't be something to be

focused on with

> negativity. I always feel like I have to defend myself/Chiari.

>

> KLS

>

[Guest guest]

a

It's a shame that they see prescribing diflucan to you such a big

deal. This is why I really have no appetite for neurologists. You

have abviously just had an experience that diflucan partially

addressed ..

>

> Tony, I only wish I could get a doctor here to give me a script for

> diflucan. I can't even get an apointment right now. Las Vegas is

> growing very fast, and we just don't have the medical care we need.

> It is scary.

>

> KLS, I understand your point on chiari. I don't mean to discredit

it

> for you. I used to live near Charlotte, NC. There was a doc there

who

> became quite famous in the cfs/fms community for doing chiari

surgery

> on EVERYONE. He lost his surgery privileges in Charlotte and then

> moved to Asheville where he continued the same malpractice.

>

> But I also have been on these email lists a long time. The reports

I

> heard on chiari cases were often that they did well for a few

months

> and then gradually the swelling returned or filled up the new brain

> space. I also heard this from a doctor, but alas I have forgotten

> which one.

>

> I do know of one patient who was helped, and you are now another.

>

> Of course we must state that you are still on this list, so chiari

> must not have fixed everything that you have???

>

> a

>

>

> >

> >

> > In a message dated 10/27/2006 9:40:07 PM Eastern Standard Time,

> > dumbaussie2000@ writes:

> >

> > a

> > That is a very good post! I have read many people's experiences

> with

> > that surgery and you hit it on the head.Like many you may have a

> > small period of improvement and then whammo back to normal.

> >

> >

> > Yes, Chiari can come back, for various reasons. Also the surgery

> isn't a

> > cure all. You need a lot of self-care, so that you don't re-

injure

> or aggravate

> > your injury. Let me just irriterate that Chiari has successfully

> helped many

> > many people, myself included and shouldn't be something to be

> focused on with

> > negativity. I always feel like I have to defend myself/Chiari.

> >

> > KLS

> >

>

[Guest guest]

Kls

It's definately helped you and that's great. I just feel that the

true test of time and many people's testimonies leaves this highly

controversial.. and I just tried to reflect that. Another egs. of a

disaster for me is the many colonoscopy reports that lead nowhere-

other than a diagnosis for cancer. I read one report claiming

inflammation at levels never witnessed before by the dr/colonoscopist

and NO TREATMENT STRATEGY offered.It seems all they care about is

cutting a few polyps if any and testing for cancer, the high levels

of inflammation IGNORED.

We just have to warn and get people to push the system past the usual

you can have any color you want as long as it's black approach.

--- In infections , ThunderLungsABA@...

wrote:

>

>

> In a message dated 10/27/2006 9:40:07 PM Eastern Standard Time,

> dumbaussie2000@... writes:

>

> a

> That is a very good post! I have read many people's experiences

with

> that surgery and you hit it on the head.Like many you may have a

> small period of improvement and then whammo back to normal.

>

>

> Yes, Chiari can come back, for various reasons. Also the surgery

isn't a

> cure all. You need a lot of self-care, so that you don't re-injure

or aggravate

> your injury. Let me just irriterate that Chiari has successfully

helped many

> many people, myself included and shouldn't be something to be

focused on with

> negativity. I always feel like I have to defend myself/Chiari.

>

> KLS

>