Re: Latest developments - not good

[Guest guest]

a

Do let us know how this turns out. I'm especially on the look out

for any doc that seems half-way competent to assess and treat ICH,

and am willing to travel.

If you start diamox before seeing a neuroopthalmologist, your

putative papilledema may be much less severe. The doc may

conclude that you have little if any ICH, when maybe the diamox is

doing the trick. You might insist that the diamox has helped your

head pressure, but that kind of patient reporting doesn't rank as

evidence to the docs I'm familiar with, and you may find yourself in

the insane position of having the effectiveness of diamox actually

preclude a diagnosis and a refill.

The other potential pitfall I see is that it sounds like a referral

to the neuroophthalmologist is predicated on how you say you respond

to diamox. If true, this is unorthodox and ill-advised. Diamox

doesn't work for some ICH patients. It reduces the production of

CSF at the choroid plexus. But some patients have a problem with

CSF re-absorption at the arachnoid villi.

If the neuroophthalmologist says you have papilledema, but a second

spinal tap turns out the same as the last one, there's more than

enough wiggle-room for the ophthalmologist to revise the diagnosis

to something like pseudopapilledema or in some other way deprive you

of what might be a correct diagnosis. PubMed is full of disputes on

how to diagnose papilledema. I get the sense that part of the

equation is whether the opthalmologist actually believes you have

ICH in the first place.

I wouldn't necessarily turn down a spinal tap if I were you, but I

would want to make it clear up front that you don't consider it

definitive insofar as you may have a block at the foramen magnum.

If possible, you might want to get a CINE MR to check the flow

around the foramen magnum. Ideally (and I suspect KLS will agree

here) you would get the CINE MR before a spinal tap.

Matt

>

> So I go to my GP this afternoon - told the nurse it was an

emergency.

> My doc gave me a scrpt for Diamox - kind of a rough but safe test

to

> see if I have intracranial hypertension damaging things - we know

I

> already had vestibular nerve damage, worse on the right side - no

> surprise, is it?

>

> Then she will refer me to a neuro opthamologist in Reno - the only

> one in NV. This guy is an expert on intracranial hypertension. Of

> course, I hear you all screaming at me, it's infection. I know

that,

> but I want to control the pressure and not go blind or deaf. Yes,

I

> do need to find out what infections and what antibiotics. But

right

> now, first things first.

>

> I will keep you posted.

>

> a Carnes

>

[Guest guest]

Some times the docs with the worst personalities are the ones who are more concerned with figuring out what's wrong. At least you've got something to be taken seriously now and docs will have to stop ignoring you and start figuring out what's going on. penny pjeanneus <pj7@...> wrote: Yesterday I saw a new neurologist who was supposed to be good with headaches. I won't describe how bad he was except to say he noted two things - I almost feel

out of my chair.1. My right eye pupil was 2 mm larger than my left.2. My hearing was reduced in my right ear.His comment was that I probably already knew that. I told him no one had ever told me that in my entire life of wearing glasses and my hearing when last checked this year by an audiologist was excellent in BOTH EARS. He decided I have tension headaches for 380 days straight when I never had tension or migraines either my entire life -and I am not 25.So this morning I had a follow-up apt with my eye doctor - God must be looking out for me.He said that I NEVER had that pupil larger before and that my vision in that eye is not the same as one month ago with double vision. So I go to my GP this afternoon - told the nurse it was an emergency. My doc gave me a scrpt for Diamox - kind of a rough but safe test to see if I have intracranial hypertension damaging things - we know I already had

vestibular nerve damage, worse on the right side - no surprise, is it?Then she will refer me to a neuro opthamologist in Reno - the only one in NV. This guy is an expert on intracranial hypertension. Of course, I hear you all screaming at me, it's infection. I know that, but I want to control the pressure and not go blind or deaf. Yes, I do need to find out what infections and what antibiotics. But right now, first things first.I will keep you posted.a Carnes

[Guest guest]

a, you're lucky to have Matt looking out for you. I understand the desire to reduce symtpoms before having the further diagnostic testing you need. I've battled with that many times myself. But I think in this case, it would be better to be evaluated by this new doc first, before experimenting with a drug that could impact your test results marginally enough to throw your dx off. penny phagelod <mpalmer@...> wrote: aDo let us know how this turns out. I'm

especially on the look out for any doc that seems half-way competent to assess and treat ICH, and am willing to travel.If you start diamox before seeing a neuroopthalmologist, your putative papilledema may be much less severe. The doc may conclude that you have little if any ICH, when maybe the diamox is doing the trick. You might insist that the diamox has helped your head pressure, but that kind of patient reporting doesn't rank as evidence to the docs I'm familiar with, and you may find yourself in the insane position of having the effectiveness of diamox actually preclude a diagnosis and a refill.The other potential pitfall I see is that it sounds like a referral to the neuroophthalmologist is predicated on how you say you respond to diamox. If true, this is unorthodox and ill-advised. Diamox doesn't work for some ICH patients. It reduces the production of CSF at the choroid plexus. But some

patients have a problem with CSF re-absorption at the arachnoid villi.If the neuroophthalmologist says you have papilledema, but a second spinal tap turns out the same as the last one, there's more than enough wiggle-room for the ophthalmologist to revise the diagnosis to something like pseudopapilledema or in some other way deprive you of what might be a correct diagnosis. PubMed is full of disputes on how to diagnose papilledema. I get the sense that part of the equation is whether the opthalmologist actually believes you have ICH in the first place.I wouldn't necessarily turn down a spinal tap if I were you, but I would want to make it clear up front that you don't consider it definitive insofar as you may have a block at the foramen magnum. If possible, you might want to get a CINE MR to check the flow around the foramen magnum. Ideally (and I suspect KLS will agree here) you would get the CINE MR

before a spinal tap.Matt> > So I go to my GP this afternoon - told the nurse it was an emergency. > My doc gave me a scrpt for Diamox - kind of a rough but safe test to > see if I have intracranial hypertension damaging things - we know I > already had vestibular nerve damage, worse on the right side - no > surprise, is it?> > Then she will refer me to a neuro opthamologist in Reno - the only > one in NV. This guy is an expert on intracranial hypertension. Of > course, I hear you all screaming at me, it's infection. I know that, > but I want to control the pressure and not go blind or deaf. Yes, I > do need to find out what infections and what antibiotics. But right > now, first things first.> > I will keep you posted.> > a Carnes>

[Guest guest]

I appreciate all of you on this list. I think the diagnosis will not

get siderailed again. My local opthamologist was really freaked that

my one pupil had dilated. He was so concerned he gave me the phone

number of UCLA. Then I went next to my GP who immediately gave me a

Diamox prescription. She has been following this for a year. She even

started talking about needing the surgery and a shunt. The concern is

that I could have permanent vision and hearing damage already, so I

can't hold off on the Diamox.

The neurologist I just saw who is a " headache " specialist is the

worst doctor I have ever seen in my entire life. He is an idiot who

thought I had tension headaches for a year and thought that a dilated

pupil must have been there all my life. I wouldn't trust him with my

dog, and I don't even like dogs.

I will be away for a couple of days, so will write more soon. Matt,

the good neuro-opthamologist is in Reno and specializes in

intracranial hypertension. I don't think he will miss the diagnosis,

and if the Diamox helps he will get the connection, unlike the idiot

I saw yesterday. My local eye doc who I saw today is also VERY

concerned - thus the suggestion to go to UCLA.

Matt, I will post more as soon as I know more on Reno.

a

>

> a

>

> Do let us know how this turns out. I'm especially on the look out

> for any doc that seems half-way competent to assess and treat ICH,

> and am willing to travel.

>

> If you start diamox before seeing a neuroopthalmologist, your

> putative papilledema may be much less severe. The doc may

> conclude that you have little if any ICH, when maybe the diamox is

> doing the trick. You might insist that the diamox has helped your

> head pressure, but that kind of patient reporting doesn't rank as

> evidence to the docs I'm familiar with, and you may find yourself

in

> the insane position of having the effectiveness of diamox actually

> preclude a diagnosis and a refill.

>

> The other potential pitfall I see is that it sounds like a referral

> to the neuroophthalmologist is predicated on how you say you

respond

> to diamox. If true, this is unorthodox and ill-advised. Diamox

> doesn't work for some ICH patients. It reduces the production of

> CSF at the choroid plexus. But some patients have a problem with

> CSF re-absorption at the arachnoid villi.

>

> If the neuroophthalmologist says you have papilledema, but a second

> spinal tap turns out the same as the last one, there's more than

> enough wiggle-room for the ophthalmologist to revise the diagnosis

> to something like pseudopapilledema or in some other way deprive

you

> of what might be a correct diagnosis. PubMed is full of disputes

on

> how to diagnose papilledema. I get the sense that part of the

> equation is whether the opthalmologist actually believes you have

> ICH in the first place.

>

> I wouldn't necessarily turn down a spinal tap if I were you, but I

> would want to make it clear up front that you don't consider it

> definitive insofar as you may have a block at the foramen magnum.

> If possible, you might want to get a CINE MR to check the flow

> around the foramen magnum. Ideally (and I suspect KLS will agree

> here) you would get the CINE MR before a spinal tap.

>

>

> Matt

>

>

>

>

> >

> > So I go to my GP this afternoon - told the nurse it was an

> emergency.

> > My doc gave me a scrpt for Diamox - kind of a rough but safe test

> to

> > see if I have intracranial hypertension damaging things - we know

> I

> > already had vestibular nerve damage, worse on the right side - no

> > surprise, is it?

> >

> > Then she will refer me to a neuro opthamologist in Reno - the

only

> > one in NV. This guy is an expert on intracranial hypertension. Of

> > course, I hear you all screaming at me, it's infection. I know

> that,

> > but I want to control the pressure and not go blind or deaf. Yes,

> I

> > do need to find out what infections and what antibiotics. But

> right

> > now, first things first.

> >

> > I will keep you posted.

> >

> > a Carnes

> >

>

[Guest guest]

>

> I appreciate all of you on this list. I think the diagnosis will

not

> get siderailed again. My local opthamologist was really freaked

that

> my one pupil had dilated. He was so concerned he gave me the phone

> number of UCLA. Then I went next to my GP who immediately gave me

a

> Diamox prescription. She has been following this for a year. She

even

> started talking about needing the surgery and a shunt. The concern

is

> that I could have permanent vision and hearing damage already, so

I

> can't hold off on the Diamox.

I've read plenty of posts on the ICH sites and plenty of full text

articles downloaded from PubMed. I've never heard of this sequence

of events. There aren't many medical emergencies in ophthalmology.

The ophthalmologists make time for those that do occur. And vision

problems with signs and symptoms of ICH is one of them. If your

case is considered an emergency, the expected result is immediate

referral, not an immediate trial of diamox.

It is my understanding that the optic nerve swelling is the result

of ongoing pressure. Lower the pressure and the swelling

dissapates. You may be left with permanent vision loss, but the

papilledema itself may be gone. Without papilledema, what can this

neuroophthalmologist say? He can characterize other aspects of your

vision but none of that, to my knowledge, remotely impacts a

diagnosis of ICH. Papilledema is necessary and sufficient in their

eyes (OK, I stumbled on to that pun) to proceed to the next step (a

spinal tap). This would be like going to a pulmonologist to biopsy

your lungs under suspicion of sarcoidosis after you'd already been

prescribed prednisone and are symptom-free. There'd be no point in

biopsying granulomas that aren't there anymore.

>

> I will be away for a couple of days, so will write more soon.

Matt,

> the good neuro-opthamologist is in Reno and specializes in

> intracranial hypertension. I don't think he will miss the

diagnosis,

> and if the Diamox helps he will get the connection, unlike the

idiot

> I saw yesterday.

Have you met this doctor? Why are you so confident of his

capabilities when you just got a fresh reminder of what " idiots "

doctors can be? I've read many posts on the ICH forums about the

experiences of patients with this disease, and I see no basis for

confidence unless you actually have special knowledge about this

particular person.

Think about this. You've already had a spinal tap. The pressure

was somewhat elevated for a moment and then dropped essentially to

zero. That's not in the manual. You have an uphill battle on your

hands here. When I suggest the need for a CINE MR, I don't mean to

imply that this is standard. Your docs may not have the foggiest

idea that CINE MR can be used to measure CSF flow around the foramen

magnum. There may not even be an MRI capable of CINE in all of

Nevada. Negotiating for this test is likely to be difficult.

You'll be talking about it to people who may not know about it, and

who don't enjoy receiving medical training from their patients.

You'd have to explain why you think you could have blockage in the

absence of overt Chiari malformations. You'd have to convince them

that this test is warranted even in the absence of a diagnosis of

papilledema to back you up (if in fact you compromise the diagnosis

with diamox).

Papilledema will give you major leverage. Without it you, and I

mean you in particular (with CSF pressure on LP that goes rapidly to

zero), will be in an impossible negotiating position. If you can

pull it off then we'll send you to North Korea to talk Mr. Ill out

of his Nukes.

Matt

[Guest guest]

Well there ya go- at the time my right pupil was larger than my

left , I also had posterior uveitis, trigeninal nerve pain, headaches

of 6 year almost constant duration, tinnitus and stiff neck.

Other than offering steroid injections into the eyes - everyone was

Ho-hum about my symptoms - I think because I didn't look sick- and

they didn't beleive me. (how can someone have a headache for 6

years??)

The one observation I thought was KEY - was that when the Dr. would

put those drops in my eyes (to dilate them) it took about 4 hrs for

the drops to drain to my throat (You can sure taste them) when it's

supposed to take about 4 SECONDS... when I reported this to the

Opthalmologist- he's looked at me and said " That's not Possible " ..

Well. Excuse me it was. And it indicated blocked (by

swelling/inflammation?) drainage passages-

Now that the inflammation in my head is gone- and I'm better, it does

only take 4 seconds to drain - maybe 2 seconds..

Point being:

I think Dr.s have preconceived ideas about things (even the good

ones) and they are very very resistant to observations that don't get

in-line with their thinking.

They either freak out- or are blaise... neither is good.

Barb

>

> I appreciate all of you on this list. I think the diagnosis will

not

> get siderailed again. My local opthamologist was really freaked

that

> my one pupil had dilated. He was so concerned he gave me the phone

> number of UCLA. Then I went next to my GP who immediately gave me a

> Diamox prescription. She has been following this for a year. She

even

> started talking about needing the surgery and a shunt. The concern

is

> that I could have permanent vision and hearing damage already, so I

> can't hold off on the Diamox.

>

> The neurologist I just saw who is a " headache " specialist is the

> worst doctor I have ever seen in my entire life. He is an idiot who

> thought I had tension headaches for a year and thought that a

dilated

> pupil must have been there all my life. I wouldn't trust him with

my

> dog, and I don't even like dogs.

>

> I will be away for a couple of days, so will write more soon. Matt,

> the good neuro-opthamologist is in Reno and specializes in

> intracranial hypertension. I don't think he will miss the

diagnosis,

> and if the Diamox helps he will get the connection, unlike the

idiot

> I saw yesterday. My local eye doc who I saw today is also VERY

> concerned - thus the suggestion to go to UCLA.

>

> Matt, I will post more as soon as I know more on Reno.

>

> a

>

> >

> > a

> >

> > Do let us know how this turns out. I'm especially on the look

out

> > for any doc that seems half-way competent to assess and treat

ICH,

> > and am willing to travel.

> >

> > If you start diamox before seeing a neuroopthalmologist, your

> > putative papilledema may be much less severe. The doc may

> > conclude that you have little if any ICH, when maybe the diamox

is

> > doing the trick. You might insist that the diamox has helped

your

> > head pressure, but that kind of patient reporting doesn't rank as

> > evidence to the docs I'm familiar with, and you may find yourself

> in

> > the insane position of having the effectiveness of diamox

actually

> > preclude a diagnosis and a refill.

> >

> > The other potential pitfall I see is that it sounds like a

referral

> > to the neuroophthalmologist is predicated on how you say you

> respond

> > to diamox. If true, this is unorthodox and ill-advised. Diamox

> > doesn't work for some ICH patients. It reduces the production of

> > CSF at the choroid plexus. But some patients have a problem with

> > CSF re-absorption at the arachnoid villi.

> >

> > If the neuroophthalmologist says you have papilledema, but a

second

> > spinal tap turns out the same as the last one, there's more than

> > enough wiggle-room for the ophthalmologist to revise the

diagnosis

> > to something like pseudopapilledema or in some other way deprive

> you

> > of what might be a correct diagnosis. PubMed is full of disputes

> on

> > how to diagnose papilledema. I get the sense that part of the

> > equation is whether the opthalmologist actually believes you have

> > ICH in the first place.

> >

> > I wouldn't necessarily turn down a spinal tap if I were you, but

I

> > would want to make it clear up front that you don't consider it

> > definitive insofar as you may have a block at the foramen

magnum.

> > If possible, you might want to get a CINE MR to check the flow

> > around the foramen magnum. Ideally (and I suspect KLS will agree

> > here) you would get the CINE MR before a spinal tap.

> >

> >

> > Matt

> >

> >

> >

> >

> > >

> > > So I go to my GP this afternoon - told the nurse it was an

> > emergency.

> > > My doc gave me a scrpt for Diamox - kind of a rough but safe

test

> > to

> > > see if I have intracranial hypertension damaging things - we

know

> > I

> > > already had vestibular nerve damage, worse on the right side -

no

> > > surprise, is it?

> > >

> > > Then she will refer me to a neuro opthamologist in Reno - the

> only

> > > one in NV. This guy is an expert on intracranial hypertension.

Of

> > > course, I hear you all screaming at me, it's infection. I know

> > that,

> > > but I want to control the pressure and not go blind or deaf.

Yes,

> > I

> > > do need to find out what infections and what antibiotics. But

> > right

> > > now, first things first.

> > >

> > > I will keep you posted.

> > >

> > > a Carnes

> > >

> >

>

[Guest guest]

Isn't it crazy how docs will say something that's happening to you "isn't possible"? I can't tell you how many times I've heard that kind of garbage. They are so boxed in in their thinking it really kind of blows my mind. They seem to have a hard time recognizing the puzzle pieces and how they fit together. I think medical school trains any creative thinking right out of them. The whole goal there is to memorize medical "facts", and apply the best set of "facts" in every clinical setting. Seriously, the people who become doctors aren't necessarily the brightest, they're just good at memorization. It's very discouraging. No wonder so many sick people go undiagnosed or are sent home to die later because they couldn't see what was right in front of their faces (happened with my mother's boyfriend - released from the hospital with a "clean bill of health" went home and within a few hours was dead. Talk about not seeing the

obvious). penny Barb Peck <egroups1bp@...> wrote: Well there ya go- at the time my right pupil was larger than my left , I also had posterior uveitis, trigeninal nerve pain, headaches of 6 year almost constant duration, tinnitus and stiff neck. Other than offering steroid injections into the eyes - everyone was Ho-hum about my symptoms - I think because I didn't look sick- and they didn't beleive me. (how can someone

have a headache for 6 years??)The one observation I thought was KEY - was that when the Dr. would put those drops in my eyes (to dilate them) it took about 4 hrs for the drops to drain to my throat (You can sure taste them) when it's supposed to take about 4 SECONDS... when I reported this to the Opthalmologist- he's looked at me and said "That's not Possible"..Well. Excuse me it was. And it indicated blocked (by swelling/inflammation?) drainage passages- Now that the inflammation in my head is gone- and I'm better, it does only take 4 seconds to drain - maybe 2 seconds..Point being: I think Dr.s have preconceived ideas about things (even the good ones) and they are very very resistant to observations that don't get in-line with their thinking.They either freak out- or are blaise... neither is good.Barb>> I appreciate all of you on this list. I think the diagnosis will not > get siderailed again. My local opthamologist was really freaked that > my one pupil had dilated. He was so concerned he gave me the phone > number of UCLA. Then I went next to my GP who immediately gave me a > Diamox prescription. She has been following this for a year. She even > started talking about needing the surgery and a shunt. The concern is > that I could have permanent vision and hearing damage already, so I > can't hold off on the Diamox.> > The neurologist I just saw who is a "headache" specialist is the > worst doctor I have ever seen in my entire life. He is an idiot who > thought I had tension headaches for a year and thought that

a dilated > pupil must have been there all my life. I wouldn't trust him with my > dog, and I don't even like dogs.> > I will be away for a couple of days, so will write more soon. Matt, > the good neuro-opthamologist is in Reno and specializes in > intracranial hypertension. I don't think he will miss the diagnosis, > and if the Diamox helps he will get the connection, unlike the idiot > I saw yesterday. My local eye doc who I saw today is also VERY > concerned - thus the suggestion to go to UCLA. > > Matt, I will post more as soon as I know more on Reno.> > a> > >> > a> > > > Do let us know how this turns out. I'm especially on the look out > > for any doc that seems half-way competent to assess and treat ICH, > > and am willing to travel.> > > > If you start

diamox before seeing a neuroopthalmologist, your > > putative papilledema may be much less severe. The doc may > > conclude that you have little if any ICH, when maybe the diamox is > > doing the trick. You might insist that the diamox has helped your > > head pressure, but that kind of patient reporting doesn't rank as > > evidence to the docs I'm familiar with, and you may find yourself > in > > the insane position of having the effectiveness of diamox actually > > preclude a diagnosis and a refill.> > > > The other potential pitfall I see is that it sounds like a referral > > to the neuroophthalmologist is predicated on how you say you > respond > > to diamox. If true, this is unorthodox and ill-advised. Diamox > > doesn't work for some ICH patients. It reduces the production of > > CSF at the choroid

plexus. But some patients have a problem with > > CSF re-absorption at the arachnoid villi.> > > > If the neuroophthalmologist says you have papilledema, but a second > > spinal tap turns out the same as the last one, there's more than > > enough wiggle-room for the ophthalmologist to revise the diagnosis > > to something like pseudopapilledema or in some other way deprive > you > > of what might be a correct diagnosis. PubMed is full of disputes > on > > how to diagnose papilledema. I get the sense that part of the > > equation is whether the opthalmologist actually believes you have > > ICH in the first place.> > > > I wouldn't necessarily turn down a spinal tap if I were you, but I > > would want to make it clear up front that you don't consider it > > definitive insofar as you may have a block at the

foramen magnum. > > If possible, you might want to get a CINE MR to check the flow > > around the foramen magnum. Ideally (and I suspect KLS will agree > > here) you would get the CINE MR before a spinal tap.> > > > > > Matt> > > > > > > > > > > > > > So I go to my GP this afternoon - told the nurse it was an > > emergency. > > > My doc gave me a scrpt for Diamox - kind of a rough but safe test > > to > > > see if I have intracranial hypertension damaging things - we know > > I > > > already had vestibular nerve damage, worse on the right side - no > > > surprise, is it?> > > > > > Then she will refer me to a neuro opthamologist in Reno - the > only > > > one in NV. This guy is an expert on intracranial

hypertension. Of > > > course, I hear you all screaming at me, it's infection. I know > > that, > > > but I want to control the pressure and not go blind or deaf. Yes, > > I > > > do need to find out what infections and what antibiotics. But > > right > > > now, first things first.> > > > > > I will keep you posted.> > > > > > a Carnes> > >> >>

[Guest guest]

Matt,

The doctor in Reno was recommended to me by the website for ICH. I

tend to think he is better than a team at UCLA. I get your point

about needing a diagnosis, but I can't get the doc at Reno to take me

until my local doc contacts him - hopefully today. Meanwhile I don't

want to go blind or deaf. I have no papilledema. It's not going to be

easy to get a diagnosis, but what if I don't? That just means my

local doc will continue to give me Diamox and maybe push for me to

get a shunt or keep treating the Lyme disease. SHE IS THE ONLY DOC I

HAVE WHO HAS A BRAIN and is treating all the Lymies in Las Vegas.

What do you think?

a

> >

> > I appreciate all of you on this list. I think the diagnosis will

> not

> > get siderailed again. My local opthamologist was really freaked

> that

> > my one pupil had dilated. He was so concerned he gave me the

phone

> > number of UCLA. Then I went next to my GP who immediately gave me

> a

> > Diamox prescription. She has been following this for a year. She

> even

> > started talking about needing the surgery and a shunt. The

concern

> is

> > that I could have permanent vision and hearing damage already, so

> I

> > can't hold off on the Diamox.

>

>

> I've read plenty of posts on the ICH sites and plenty of full text

> articles downloaded from PubMed. I've never heard of this sequence

> of events. There aren't many medical emergencies in

ophthalmology.

> The ophthalmologists make time for those that do occur. And vision

> problems with signs and symptoms of ICH is one of them. If your

> case is considered an emergency, the expected result is immediate

> referral, not an immediate trial of diamox.

>

> It is my understanding that the optic nerve swelling is the result

> of ongoing pressure. Lower the pressure and the swelling

> dissapates. You may be left with permanent vision loss, but the

> papilledema itself may be gone. Without papilledema, what can this

> neuroophthalmologist say? He can characterize other aspects of

your

> vision but none of that, to my knowledge, remotely impacts a

> diagnosis of ICH. Papilledema is necessary and sufficient in their

> eyes (OK, I stumbled on to that pun) to proceed to the next step (a

> spinal tap). This would be like going to a pulmonologist to biopsy

> your lungs under suspicion of sarcoidosis after you'd already been

> prescribed prednisone and are symptom-free. There'd be no point in

> biopsying granulomas that aren't there anymore.

>

>

> >

> > I will be away for a couple of days, so will write more soon.

> Matt,

> > the good neuro-opthamologist is in Reno and specializes in

> > intracranial hypertension. I don't think he will miss the

> diagnosis,

> > and if the Diamox helps he will get the connection, unlike the

> idiot

> > I saw yesterday.

>

>

> Have you met this doctor? Why are you so confident of his

> capabilities when you just got a fresh reminder of what " idiots "

> doctors can be? I've read many posts on the ICH forums about the

> experiences of patients with this disease, and I see no basis for

> confidence unless you actually have special knowledge about this

> particular person.

>

> Think about this. You've already had a spinal tap. The pressure

> was somewhat elevated for a moment and then dropped essentially to

> zero. That's not in the manual. You have an uphill battle on your

> hands here. When I suggest the need for a CINE MR, I don't mean to

> imply that this is standard. Your docs may not have the foggiest

> idea that CINE MR can be used to measure CSF flow around the

foramen

> magnum. There may not even be an MRI capable of CINE in all of

> Nevada. Negotiating for this test is likely to be difficult.

> You'll be talking about it to people who may not know about it, and

> who don't enjoy receiving medical training from their patients.

> You'd have to explain why you think you could have blockage in the

> absence of overt Chiari malformations. You'd have to convince them

> that this test is warranted even in the absence of a diagnosis of

> papilledema to back you up (if in fact you compromise the diagnosis

> with diamox).

>

> Papilledema will give you major leverage. Without it you, and I

> mean you in particular (with CSF pressure on LP that goes rapidly

to

> zero), will be in an impossible negotiating position. If you can

> pull it off then we'll send you to North Korea to talk Mr. Ill out

> of his Nukes.

>

>

> Matt

>

[Guest guest]

Barb,

This sounds so like me. I can only add that I don't recall EVER

noticing that the eye drops drain from my eyes. Also, it takes at

least twice as long as normal for my eyes to undilate - if they say 2

I figure 4 to 6.

a

>

> Well there ya go- at the time my right pupil was larger than my

> left , I also had posterior uveitis, trigeninal nerve pain,

headaches

> of 6 year almost constant duration, tinnitus and stiff neck.

> Other than offering steroid injections into the eyes - everyone was

> Ho-hum about my symptoms - I think because I didn't look sick- and

> they didn't beleive me. (how can someone have a headache for 6

> years??)

>

> The one observation I thought was KEY - was that when the Dr.

would

> put those drops in my eyes (to dilate them) it took about 4 hrs for

> the drops to drain to my throat (You can sure taste them) when it's

> supposed to take about 4 SECONDS... when I reported this to the

> Opthalmologist- he's looked at me and said " That's not Possible " ..

>

> Well. Excuse me it was. And it indicated blocked (by

> swelling/inflammation?) drainage passages-

>

> Now that the inflammation in my head is gone- and I'm better, it

does

> only take 4 seconds to drain - maybe 2 seconds..

>

> Point being:

> I think Dr.s have preconceived ideas about things (even the good

> ones) and they are very very resistant to observations that don't

get

> in-line with their thinking.

>

> They either freak out- or are blaise... neither is good.

>

> Barb

>

>

>

>

>

> >

> > I appreciate all of you on this list. I think the diagnosis will

> not

> > get siderailed again. My local opthamologist was really freaked

> that

> > my one pupil had dilated. He was so concerned he gave me the

phone

> > number of UCLA. Then I went next to my GP who immediately gave me

a

> > Diamox prescription. She has been following this for a year. She

> even

> > started talking about needing the surgery and a shunt. The

concern

> is

> > that I could have permanent vision and hearing damage already, so

I

> > can't hold off on the Diamox.

> >

> > The neurologist I just saw who is a " headache " specialist is the

> > worst doctor I have ever seen in my entire life. He is an idiot

who

> > thought I had tension headaches for a year and thought that a

> dilated

> > pupil must have been there all my life. I wouldn't trust him with

> my

> > dog, and I don't even like dogs.

> >

> > I will be away for a couple of days, so will write more soon.

Matt,

> > the good neuro-opthamologist is in Reno and specializes in

> > intracranial hypertension. I don't think he will miss the

> diagnosis,

> > and if the Diamox helps he will get the connection, unlike the

> idiot

> > I saw yesterday. My local eye doc who I saw today is also VERY

> > concerned - thus the suggestion to go to UCLA.

> >

> > Matt, I will post more as soon as I know more on Reno.

> >

> > a

> >

> > >

> > > a

> > >

> > > Do let us know how this turns out. I'm especially on the look

> out

> > > for any doc that seems half-way competent to assess and treat

> ICH,

> > > and am willing to travel.

> > >

> > > If you start diamox before seeing a neuroopthalmologist, your

> > > putative papilledema may be much less severe. The doc may

> > > conclude that you have little if any ICH, when maybe the diamox

> is

> > > doing the trick. You might insist that the diamox has helped

> your

> > > head pressure, but that kind of patient reporting doesn't rank

as

> > > evidence to the docs I'm familiar with, and you may find

yourself

> > in

> > > the insane position of having the effectiveness of diamox

> actually

> > > preclude a diagnosis and a refill.

> > >

> > > The other potential pitfall I see is that it sounds like a

> referral

> > > to the neuroophthalmologist is predicated on how you say you

> > respond

> > > to diamox. If true, this is unorthodox and ill-advised.

Diamox

> > > doesn't work for some ICH patients. It reduces the production

of

> > > CSF at the choroid plexus. But some patients have a problem

with

> > > CSF re-absorption at the arachnoid villi.

> > >

> > > If the neuroophthalmologist says you have papilledema, but a

> second

> > > spinal tap turns out the same as the last one, there's more

than

> > > enough wiggle-room for the ophthalmologist to revise the

> diagnosis

> > > to something like pseudopapilledema or in some other way

deprive

> > you

> > > of what might be a correct diagnosis. PubMed is full of

disputes

> > on

> > > how to diagnose papilledema. I get the sense that part of the

> > > equation is whether the opthalmologist actually believes you

have

> > > ICH in the first place.

> > >

> > > I wouldn't necessarily turn down a spinal tap if I were you,

but

> I

> > > would want to make it clear up front that you don't consider it

> > > definitive insofar as you may have a block at the foramen

> magnum.

> > > If possible, you might want to get a CINE MR to check the flow

> > > around the foramen magnum. Ideally (and I suspect KLS will

agree

> > > here) you would get the CINE MR before a spinal tap.

> > >

> > >

> > > Matt

> > >

> > >

> > >

> > >

> > > >

> > > > So I go to my GP this afternoon - told the nurse it was an

> > > emergency.

> > > > My doc gave me a scrpt for Diamox - kind of a rough but safe

> test

> > > to

> > > > see if I have intracranial hypertension damaging things - we

> know

> > > I

> > > > already had vestibular nerve damage, worse on the right side -

> no

> > > > surprise, is it?

> > > >

> > > > Then she will refer me to a neuro opthamologist in Reno - the

> > only

> > > > one in NV. This guy is an expert on intracranial

hypertension.

> Of

> > > > course, I hear you all screaming at me, it's infection. I

know

> > > that,

> > > > but I want to control the pressure and not go blind or deaf.

> Yes,

> > > I

> > > > do need to find out what infections and what antibiotics. But

> > > right

> > > > now, first things first.

> > > >

> > > > I will keep you posted.

> > > >

> > > > a Carnes

> > > >

> > >

> >

>

[Guest guest]

a

I think your doc is pretty cool for her commitment to help you. I

wish I had one like that.

How do you know you don't have papilledema? Has a

neuroophthalmologist, with the correct equipment (a fundoscope, I

think) evaluated you since the onset of the headaches?

I thought ICH-induced vision loss occured by way of papilledema.

Without papilledema, I'm not sure how ICH could cause the vision

loss. In the absence of papilledema ICH could still cause the 6th

cranial nerve palsy you reported having on the right side and

presumably this could give you some double vision. But that's

different from the frank blindness that can result.

If you don't get a diagnosis of papilledema and you can't

demonstrate elevated pressure on lumbar puncture then I think you

have zero chance of getting a shunt. Neurosurgeons expect concrete

evidence before they put a tube into your brain. And insofar as you

seem not to communicate CSF from your brain to your spinal column,

the shunt would indeed have to be in your brain (a VP shunt as

opposed to an LP shunt).

Your doc may continue to prescribe diamox in the absence of other

options, but diamox is ineffective for many patients. Again, those

with a CSF over-production tend to be the only ones who benefit long-

term from diamox. What will you do if diamox doesn't help, or if

the well-known propensity for diamox to provoke fatigue in many

patients makes it intolerable to you?

Everything I've read indicates that papilledema is critical for

getting help. Membership has its privileges. The issue of whether

or not you have ICH and how you can hope to get diagnosed and

treated revolves, in my mind, around the bizarre spinal tap you

had. Your doc(s) admitted ignorance. That's the evidence you need

not to trust that the textbook approach to your case will

produce results. Again, they explicitly communicated their

confusion about this. One suggested there might be a blockage

somewhere. What other interpretation is there?

Does the pupil problem foretell imminent and permenant vision loss?

Are you noticing temporary grey-outs or bizarre visual effects?

You've had this headache for a year. Can the diamox wait until

after you see this neuroophthalmologist? It's a tricky call to

make, since ICH can, when it has a mind to, render you permanently

blind in a few days flat. But how likely is this in your case?

The textbook approach to this demands that you have papilledema.

There are a variety of case reports on PubMed of ICH patients

without papilledema. I'm guessing that blindness isn't a concern in

those cases. Double vision is another matter. So the absence of

papilledema doesn't preclude ICH as a cause of many of your woes.

It just leaves you in a weak negotiating position.

Again, if you have to, consider having a recent MRI interpreted for

the semi-legitimate landmarks of ICH (like partially empty sella).

That might give you a bit of footing in the absence of much else to

work with.

Matt

>

> Matt,

> The doctor in Reno was recommended to me by the website for ICH. I

> tend to think he is better than a team at UCLA. I get your point

> about needing a diagnosis, but I can't get the doc at Reno to take

me

> until my local doc contacts him - hopefully today. Meanwhile I

don't

> want to go blind or deaf. I have no papilledema. It's not going to

be

> easy to get a diagnosis, but what if I don't? That just means my

> local doc will continue to give me Diamox and maybe push for me to

> get a shunt or keep treating the Lyme disease. SHE IS THE ONLY DOC

I

> HAVE WHO HAS A BRAIN and is treating all the Lymies in Las Vegas.

>

> What do you think?

>

> a

>

>