Pseudotumor cerebri

[Guest guest]

Monika,

BariMD Ask the Experts has invited Dr. Harvey Sugerman who will touch upon pseydotumor cerebri as one of the co-morbities of the morbid obese patient. You may want to attend and post questions to Dr. Sugerman. See details below:

Positive Effects of Bariatric Surgery on Obesity Related Co-Morbidities

February 15, 4:00-5:00 ET

Obesity related co-morbid conditions start at the head with stroke, pseudotumor, diabetic retinopathy and continue all the way to the toes with diabetic neuropathy, infection, venous stasis and it effects every organ in-between! Join Dr. Harvey Sugerman as he presents the pathophysiology of obesity with emphasis on complications involved with metabolic syndrome and intra-abdominal pressure. He will detail the effects of bariatric procedures on the resolution of co-morbidities. Plan to post questions to our distinguished guest.

To attend this webinar event, sign up at www.barimd.com.

Happy Holidays to all,

Debbie Daley RD LD/N

BariMD

Business Development

-------------- Original message -------------- From: "Monika Woolsey" <monika@...>

Colleagues,

Are any of you working with this diagnosis in your population?

Thanks for your input,

Monika M. Woolsey, MS, RD

http://www.afterthediet.com

[Guest guest]

I just had one pt have surgery. What are

your interests with this population?

From: [mailto: ] On Behalf Of Monika Woolsey

Sent: Saturday, December 17, 2005

3:33 PM

Subject:

Pseudotumor cerebri

Colleagues,

Are any of you working with this diagnosis in your

population?

Thanks for your input,

Monika M. Woolsey, MS, RD

http://www.afterthediet.com

[Guest guest]

Hi Debbie!

Thank you so much for your response. I was asking because I received a very interesting referral for a very frustrated--and scared--woman with this disorder. When I spoke to her on the phone it sounded very much like she may have PCOS (she met 2 of the 3 Rotterdam Criteria but had not been given an official diagnosis) and she said in her research she has learned that PCOS and this syndrome may be related. But since she is working primarily with an opthalmic surgeon to delay the progression of blindness, the focus has been on the eyes and not the metabolism. She'd never even had any testing related to insulin function.

Since the crew on this listserve is highly likely to be seeing this diagnosis with its relationship to obesity and apparently to PCOS, I was just curious about what the frequency of the diagnosis is, whether you screen for it, and how you treat it.

I routinely ask all my PCOS clients about their vision as a check for potential fatty acid imbalance, but until this case came along I had no idea the visual disturbances I've been seeing might be related to something in addition to omega-3 deficiency.

I will put this event on my calendar, and I will be sure to be well-read beforehand so I can ask a lot of questions!

Monika M. Woolsey, MS, RD

http://www.afterthediet.com

[Guest guest]

I am awaare of three papers that have been published regarding pseudotumor and bariatric surgery. I believe the largest series was 18 patients. The Dx is confirmed by elevated CSF pressures, papilledema and visual field loss with headaches. Optic nerve fenestration by the ophtholomogists is usually only partially effective in reducing symptoms and the disease can progress to blindness secondary to prolonged increased optic nerve pressure. The disease is reversed by weight loss, if achieved early enough. We have operated on 6 patients, 2 had resolution of their sx., 2 improved and 2 had no change. It is interesting that these patients do not have extremely large BMIs, with our patients all being in the mid to low 40s. No mention of PCOS as a contributing factor. dldaley4@... wrote: Monika, BariMD Ask the Experts has invited Dr. Harvey Sugerman who will touch upon pseydotumor cerebri as one of the co-morbities of the morbid obese patient. You may want to attend and post questions to Dr. Sugerman. See details below: Positive Effects of Bariatric Surgery on Obesity Related Co-Morbidities February 15, 4:00-5:00

ET Obesity related co-morbid conditions start at the head with stroke, pseudotumor, diabetic retinopathy and continue all the way to the toes with diabetic neuropathy, infection, venous stasis and it effects every organ in-between! Join Dr. Harvey Sugerman as he presents the pathophysiology of obesity with emphasis on complications involved with metabolic syndrome and intra-abdominal pressure. He will detail the effects of bariatric procedures on the resolution of co-morbidities. Plan to post questions to our distinguished guest. To attend this webinar event, sign up at www.barimd.com. Happy Holidays to all, Debbie Daley RD LD/N BariMD Business Development -------------- Original message -------------- From: "Monika Woolsey" <monika@...> Colleagues, Are any of you working with this diagnosis in your population? Thanks for your input, Monika M. Woolsey, MS, RD http://www.afterthediet.com __________________________________________________

[Guest guest]

Hello,

It has been awhile since I have posted--not feeling well....(I know...join the

club! LOL!)

I was just diagnosed with pseudotumor cerebri (yep...fake brain tumor!) The

" other official " name for it is intracranial hypertension...it is a fluid

pressure build up on the brain which puts pressure on the optic nerve and can

cause permanent blindness. It is usually found in over weight women ages 20-45.

As I was researching this, yes being overweight is ONE commanality in all of it,

but one thing I found particularly interesting was that the trycycline

antibiotics (doxy and mino) can also cause this problem...so I fit the bill in

both categories. ACK!

My MRI revealed the fluid build up behind the optic nerve and so I was sent for

a spinal tap to measure fluid pressure. Normal is 100 and mine was 300 so they

drained 20cc of fluid from my spinal cord to relieve some of the pressure.

The neuro is going to put me on diamox to see if we can stop the fluid build up.

He also mentioned 2 kinds of brain surgery that " was better than nothing but had

high failure rates " ...

He suggested weight loss (so much easier said than done!) My LLMD said weight

loss is not likely due to the state of my thyroid and all other hormone

imbalances in my body. He mentioned the lap-band surgery for weight

loss...insurance wont cover it.

Now we have to figure out which abx I need to switch to for the Lyme

treatments...while trying to keep the whole neuro situation in proper balance.

Has anyone else dealt with this issue? Pseudotumor cerebri??

It might be a good thing to be aware of for those who take long term doxy...if

you are overweight, this is a very serious side effect to using doxy and you

might want to consider another drug.

Two journal articles for your consideration:

Docycycline and intracranial hypertension

www.neurology.org/cgi/content/abstract/62/12/2297

Pseudotumor Cerebri secondary to minocycline intake

www.jabfp.com/cgi/content/abstract/15/3/229

Any words of wisdom??

I am not about to let some knife happy neuro-surgeon crack open my skull on a

surgery he says has a high failure rate!

Thanks,

Dawn

[Guest guest]

Yikes, Dawn! How scary!

I'm sorry you've been in a down-turn, and I hope you head into a good patch

soon. Can you tell us what your symptoms were/are? Any advice on catching this

early? I'm sorry I have no words of wisdom to offer - just questions. :-(

I am on doxy. I have some blurriness and sparkles in the center of my vision,

but this started before the doxy. Did you have visual symptoms? Headaches?

Anything unusual (besides the lovely array of Lyme symptoms) to tip you off? I

have my regular eye exam coming up soon, with an Optometrist. Do you know if

they can do " funduscopy after dilating the pupils to look for papilloedema, " or

do I need to see an Opthalmologist?

The only things I've read so far seem to indicate that, when it is caused by

doxycycline, it doesn't matter if you are overweight. It'll hit thin people

just as often as heavy people in this group.

Please let us know how you are doing. I wondered where you had gone.

D.

Dawn Irons <gratefulwife2brad@...> wrote: Hello,

It has been awhile since I have posted--not feeling well....(I know...join the

club! LOL!)

I was just diagnosed with pseudotumor cerebri (yep...fake brain tumor!) The

" other official " name for it is intracranial hypertension...it is a fluid

pressure build up on the brain which puts pressure on the optic nerve and can

cause permanent blindness. It is usually found in over weight women ages 20-45.

As I was researching this, yes being overweight is ONE commanality in all of it,

but one thing I found particularly interesting was that the trycycline

antibiotics (doxy and mino) can also cause this problem...so I fit the bill in

both categories. ACK!

My MRI revealed the fluid build up behind the optic nerve and so I was sent for

a spinal tap to measure fluid pressure. Normal is 100 and mine was 300 so they

drained 20cc of fluid from my spinal cord to relieve some of the pressure.

The neuro is going to put me on diamox to see if we can stop the fluid build up.

He also mentioned 2 kinds of brain surgery that " was better than nothing but had

high failure rates " ...

He suggested weight loss (so much easier said than done!) My LLMD said weight

loss is not likely due to the state of my thyroid and all other hormone

imbalances in my body. He mentioned the lap-band surgery for weight

loss...insurance wont cover it.

Now we have to figure out which abx I need to switch to for the Lyme

treatments...while trying to keep the whole neuro situation in proper balance.

Has anyone else dealt with this issue? Pseudotumor cerebri??

It might be a good thing to be aware of for those who take long term doxy...if

you are overweight, this is a very serious side effect to using doxy and you

might want to consider another drug.

Two journal articles for your consideration:

Docycycline and intracranial hypertension

www.neurology.org/cgi/content/abstract/62/12/2297

Pseudotumor Cerebri secondary to minocycline intake

www.jabfp.com/cgi/content/abstract/15/3/229

Any words of wisdom??

I am not about to let some knife happy neuro-surgeon crack open my skull on a

surgery he says has a high failure rate!

Thanks,

Dawn

__________________________________________________

[Guest guest]

,

That is what caught me so off guard...I did not know I was having any symptoms

of this...I just assumed it was all LYME...so I just " dealt with it " .

In retrospect, I would say the light spots I saw and the pressure behind the

eyes, overly watery eyes (due to the pressure), were all symptoms....I always

felt like I had seran wrap around my eye balls...just sort of hazy

blurriness...I wrote that off as age and needing glasses....I went to an

optomitrist...eyes were fine, he gave me a script for slight magnification, but

nothing really " corrective " because the vision was fine...just hazy and light

spots.

I was not even having constant headaches...I had 3 really BAD headaches since

June...but that was it... Those 3 were doozies of a headache with nausea and

vomiting...but 2 hydrocodone and sleeping it off and I was fine.

I just really assumed it was all lyme related. My arms and legs would fall

asleep ALOT...that could have been a fluid pressure problem...dont know for

sure.

It was just a FLUKE that my LLMD wanted new MRIs to compare to the ones I had 3

years ago...and the neuro wanted to make sure this was not MS...everything was

" normal " in the MRI with the exception of the fluid behind the optic nerve,

" empty sella " which was caused due to the pressure collapsing the sellae

(sp?)...and the displaced hypothalmus " which could be incidental " according to

the report.

So had I not had the MRI out of the curiosity of my LLMD, we would not have even

known I had a problem. Who knows how long this would have gone on before

irreversable damage.

I have noticed since my spinal tap and the removal of the fluid that I am not

having near the back problems that I was having in my lower back! My vision

seems more crisp and clear...

He wants me to start diamox (diuretic). I went to pick it up tonight from the

pharmacy and they said it would be $130 since we have new deductibles at the

start of the year. I about fell over. I asked how much lasix would cost and

she said $4.00. So I told her to fax my doctor and let him know I could not

afford the other treatment option and that I needed to get lasix...so we'll see

how that goes.

I am just not ready to have him do brain surgery for something he says has a

high failure rate...and that I believe was due to the abx anyway...so stopping

the abx could aleve the problem all together...possibly.

Both neuro and LLMD have said they would write letters to the insurance company

stating " medical necissity " --but since it is one of the procedures specifically

listed in their EXCLUSIONS, we dont know much that will help...but we will

certainly try!

Thanks for all the support!

Dawn

[Guest guest]

The lap-band surgery is " forced " dieting. It keeps you from being able to

eat too much--so it is essentially the same as a very restricted diet, but

much easier to do. How could the doctor tell you dieting won't work?

[Guest guest]

This is what I found on www.CanLyme.com by searching pseudotumor

cerebri (it's 1/2 way down the page):

Involvement of CNS. According to Dr. Pietrucha, children with

neurologic Lyme disease may present acutely with headache, blurry

vision, double vision, confusion, irritability, fever, and/or stiff

neck. Chronically, they may be encephalopathic and have lingering

headache, personality change, and depression. Patients who present

acutely may have an aseptic meningitis with pleocytosis and elevated

protein in the spinal fluid. Occasionally, there may be lesions on

the MRI, and about 20% of patients may have abnormal EEGs.

Increased intracranial pressure with an opening pressure above 200

mm/H2O is seen much more often in children with Lyme disease than in

adults. This is sometimes referred to as " pseudotumor cerebri, "

although it is not a classic pseudotumor picture as the children do

not necessarily have to be overweight or have a problem with their

menstrual cycle...

So, it seems Lyme itself can do this? Is that what it's saying?

jan

[Guest guest]

It sure looks like that's what they're saying. I wonder how many of the

children with it were on doxy. Hard to know what's the drug, what's the Lyme,

what's overweight... sheeshe.

I can relate to Dawn's and others' description of the feeling of cellophane on

the eyes, blurriness, feeling of pressure behind the eyes... but for me that was

all previous to taking doxycycline. My vision is better now, less blurry,

better night vision, less feeling of pressure. I almost never have a headache,

and when I do, it's mild and brief.

I'm just wondering how one goes about being tested. MRIs are out for me since I

have a jaw reconstruction (metal). I'll ask my LLMD when I see him on the 17th.

Always something new, eh? Lyme doesn't let you get bored or complacent.

I am seldom scared by the Lyme thing, but this scares me.

D.

jan <jpos123@...> wrote:

So, it seems Lyme itself can do this? Is that what it's saying?

jan

__________________________________________________

[Guest guest]

Regarding how to go about getting tested to see if you have a pseudotumor

cerebri: You should get an eye exam to see if you have papillary edema.

Then you get a spinal tap. My son and I had excruciating headaches for many

years. When we saw Dr. Pietrucha she was shocked that none of the countless

neurologists I had been to suggested a spinal tap. I didn't have papillary

edema on my eye exam, but I got the spinal tap done to see if I had a high

opening pressure that might be causing the headaches. Turns out I had a

really high white cell count in my spinal fluid, where none should exist.

Here I was, walking around with bacterial meningitus for who knows how long.

I was immediately put on IV antibiotics. Ten months later, when my

insurance company refused to pay any more for the IV's and I was taken off,

a repeat spinal tap was done. All the white cells were gone. They

actually cultured out spirochetes from my spinal fluid!!!! Pretty scarey

stuff, but I was glad to have concrete evidence that I had lyme, since my

bloodwork was iffy. I did not have a pseudotumer cerebri. Interestingly,

my son had a spinal tap and his pressure was normal and he didn't have any

white cells, even though he had the exact same symptoms. So you never know.

But it is worth checking out. Especially since the insurance company

knows you HAVE to go on IV's if you have meningitus from the lyme.

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[Guest guest]

Here is some links and research related to lyme, doxy and pseudotumor cerebri:

Lyme Complicated by Pseudotumor Cerebri

http://www.journals.uchicago.edu/cgi-bin/resolve?id=doi:10.1086/375691 & erFrom=-6\

663099480855670260Guest

I will attach the PDF for this one in this email

Pseudotumor cerebri secondary to minocycline intake:

http://www.jabfp.com/cgi/content/abstract/15/3/229

Doxyccline and intracranial hypertension

www.neurology.org/cgi/content/abstract/62/12/2297

Not so benign intracranial hypertension

http://www.bmj.com/cgi/content/full/326/7390/613

Operational Medicine: Doxycycline (look under precautions)

http://www.brooksidepress.org/Products/OperationalMedicine/DATA/operationalmed/M\

eds/doxycycline.htm

Doxycycline induced intracranial hypertension

http://www.bmj.com/cgi/content/full/326/7390/641

The outcome of pseudotumor cerebri induced by tetracycline therapy

http://www.blackwell-synergy.com/links/doi/10.1111/j.1600-0404.2004.00327.x/abs/

Lyme Disease (scroll down to " procedures "

http://www.emedicine.com/ped/topic1331.htm

Procedures:

a.. Lumbar puncture: In cases of cranioneuropathy, it is controversial whether

all patients require lumbar puncture before treatment. Occasionally Lyme disease

presents as pseudotumor cerebri; an opening pressure is essential for diagnosis.

a.. Currently, in most patients with isolated Bell palsy and no associated

signs of aseptic meningitis, most physicians do not perform a lumbar puncture.

For most other patients with cranioneuropathies and suspected Lyme disease, a

lumbar puncture should be performed; CSF pleocytosis leads to treatment as

indicated for CNS Lyme disease.

a.. Obtain a CT scan or MRI before the lumbar puncture if increased

intracranial pressure or mass lesion is suspected. Occasionally, Lyme disease

presents as pseudotumor with frank papilledema; imaging should be done prior to

LP in these cases.

Pseudo Tumor Cerebri Details (lists Lyme specifically as being linked to PTC)

http://www.findmemyhouse.com/ptc/ptcfacts.html

These are the highlights...there were over 820 hits on google when I searched

for Lyme Disease, Pseudotumor Cerebri, doxycycline

Kind of blows my mind that there is so much info on this! I just assumed all my

symptoms were lyme...but look at the pTC symptoms...they are lyme-like! This

could be a very dangerous situation if LLMDs are not made aware of this

connection!

Dawn

[Guest guest]

Thank you, Dawn. That must have taken a lot of time to get all that

info!

jan

>

> Here is some links and research related to lyme, doxy and pseudotumor

cerebri:...

>Dawn