Re: Also having problems since surgery at Hopkins

[Guest guest]

Hi!

You described how I am feeling.I had surg. on

4\1\99.I've had a return of symptoms.I saw Dr.

Weingart for a second opinion on 4\19.He said I

presented a case of ACM that would need surgery till

he looked at my MRI's.He was baffled.He said

everything looked fine.He started telling me it was my

nerves,stress or migranes.He told me to explore other

avenues.

I went back to my GP who prescribed ultram for pain

and switched me from prozac to welbutrin.I am now

waiting for a nuerologist appt.

On 5\1 I go back to Newark,NJ to a workers' comp dr.

who will decide how disabled I am.Dr. to Dr. to

Dr......It's been like this since I sprained my neck

in 98.Well they are certainly making money playing

ping-pong with me..LOL!

Hugs,

Lee

--- sville98 wrote:

> Hi Kathy,

>

> I haven't been on here in a looong time. Had

> surgery9/00 at Hopkins with Dr.

> Weingart and have also been having problems. Was he

> also your surgeon?

> What type of symptoms did you have.

>

> My dizzyness is much better but am still extremely

> uncomfortable and have

> terrible pressure in my head. At times it feels as

> if my brain is lying on

> a slab of rock. Neurologically I seem to be doing

> o.k. I still have a good

> deal of fatigue also. The pressure is what is

> bothering me the most.

>

> Dr. W. tried to tell me I was having migraines and

> at first denied the

> surgery was responsible but then said it could have

> been " triggered by the

> surgery " . He recommended I see a neuro for headache

> pain management. The

> neuro said it is not migraines and what I'm feeling

> is definitely caused by

> the surgery but strongly discourages further

> surgery. He said there could

> have been a leak (even though the dura was not

> opened) ( feels more like

> things are blocked and csf is building up) and

> possible slumping.

>

> I tried to get an appt. w/ Dr. Milhorat in Brooklyn

> (I'm in Pennsylvania)

> but can't get in unless I see Dr. Kula ( a neuro he

> works w/ first) and of

> course Dr. Kula has no openings until October. I

> just don't know what to do

> at this point. I had an MRI which supposedly looks

> good but my neuro says

> slumping won't show on an MRI. What are the symptoms

> of slumping?

>

> Any suggestions out there would be welcome. I'm

> working 6 hrs. a day and

> then come home and collapse most days so I don't get

> on here much but do

> check my mail when I'm able.

>

> Chiari Clinic in MO

>

>

> >Hi Group,

> >

> >I would like to make a comment about the doctor

> (radiologist ??) that Siri

> was talking with regarding the doctors in Missouri.

> First of all, I would

> like to thank Don for his comments and I agree with

> him. Dr. Oro is a very

> wonderful doctor. I only wish I had chosen him to

> do my surgery. That is a

> mistake I will have to live with.

> >

> >I live in Missouri and when I was diagnosed with

> chiari in October 1999, I

> didn't think the State of Missouri had any doctors

> at all that REALLY knew

> how to treat chairi, as I had been bounced around

> from neurologist to

> neurosurgeon far too many times. My husband and I

> felt that if I was going

> to " beat " this thing, I would have to seek medical

> assistance from another

> state, somewhere that has seen and done it all.

> >

> >Knowing that s Hopkins Hospital in Baltimore is

> well-known for its

> research, we felt this must be the answer. This was

> probably the biggest

> mistake I've made thus far with this journey, for

> the doctor that did my

> surgery wasn't as concerned about me as he should

> have been. When I wasn't

> one of his success stories, he (I feel) wanted me to

> disappear and go away.

> I don't intend on " bashing " his name publicly, as I

> know he has helped many.

> But, let me also say that reconstructive surgery

> could be in my future. I

> have just recently learned that patients of this

> surgeon are like me. Some

> have already had the reconstructive surgery.

> >

> >So I guess Siri what I'm trying to say is that

> bigger is not always better.

> I have definitely learned my lesson. You need to

> also tell this radiologist

> person that one of the big " neuro leaders " (Dr.

> Long) at s Hopkins went

> to medical school at the University of Missouri in

> Columbia. Now isn't that

> a hoot.

> >

> >I am now seeing Dr. Oro and I think he and his

> entire staff are very

> knowledgable of chiari. And, one important thing to

> me is when I call or

> e-mail them, I get a very quick response.

> >

> >Kathy in MO

> >

> >

> >

> >

> >[Non-text portions of this message have been

> removed]

> >

> >

> >Help section: http://www.yahoogroups.com/help/

> >

> >NOTE: NCC refers to posts with No Chiari Content

> >

> >To Unsubscribe Yourself:

> chiari-unsubscribeYahoogroups

> >

> >WACMA Home: www.pressenter.com/~wacma

> >

> >WACMA List: www.eGroups.com/group/chiari

> >

> >

> >

[Guest guest]

Hello

I had surgery by Dr. Weingart on 5/18/00 and did great for the first

2 months. Then, things began to deteriorate rapidly and, after 6

months, I felt the same as I did before the surgery. I went to see

Dr. Kula in October and he didn't mention any significant problems.

Dr. Weingart had no ideas and actually suggested that my problem may

be my thyroid or something. I flew out to California to get an

opinion by Dr. Batzdorf at UCLA. He examined my films and flow

studies and said I have a textbook case of cerebellar ptosis. This

is caused by a craniotomy which is too large. He has published an

article on this which has been posted previously at WACMA.

I am scheduled for surgery on 5/18/01 at UCLA. I just received

approval from my insurance which is going to cover in full at the " in

network " level even though I live in Virginia. I would strongly

encourage anyone having problems post surgery to get an opinion from

someone who UNDERSTANDS ptosis. It would be a gross understatement

to say that many reputable NSGs and neurologists have missed the

problem in my case.

I believe there are many people out there with a similar experience

in misdiagnosis and problems subsequent to a so called " standard

decompression " . For this reason, I am planning to do a digital video

documentary of my pre-post surgery experience and make this available

to other chiarians via the internet.

In the mean time I am getting ready to feel well again which means I

will be back to coach other Chiarians on how to win a disability

claim with Social Security or SSI. For those of you who may remember

me from last year, the Social Security Disability lawyer will

return...with renewed vigor. But give me a few months to recover.

Thanks,

Anne Van Soest, ACM1, Cerebellar Ptosis, 1st decompression 5/18/00,

2nd operation scheduled 5/18/01. (This is NOT going to be an annual

thing!)

P.S. NEVER GIVE UP!!!!

-

-- In chiari@y..., Lee Hala <gdzgrc@y...> wrote:

> Hi!

> You described how I am feeling.I had surg. on

> 4\1\99.I've had a return of symptoms.I saw Dr.

> Weingart for a second opinion on 4\19.He said I

> presented a case of ACM that would need surgery till

> he looked at my MRI's.He was baffled.He said

> everything looked fine.He started telling me it was my

> nerves,stress or migranes.He told me to explore other

> avenues.

> I went back to my GP who prescribed ultram for pain

> and switched me from prozac to welbutrin.I am now

> waiting for a nuerologist appt.

> On 5\1 I go back to Newark,NJ to a workers' comp dr.

> who will decide how disabled I am.Dr. to Dr. to

> Dr......It's been like this since I sprained my neck

> in 98.Well they are certainly making money playing

> ping-pong with me..LOL!

>

> Hugs,

> Lee

> --- sville98 <sville98@p...> wrote:

> > Hi Kathy,

> >

> > I haven't been on here in a looong time. Had

> > surgery9/00 at Hopkins with Dr.

> > Weingart and have also been having problems. Was he

> > also your surgeon?

> > What type of symptoms did you have.

> >

> > My dizzyness is much better but am still extremely

> > uncomfortable and have

> > terrible pressure in my head. At times it feels as

> > if my brain is lying on

> > a slab of rock. Neurologically I seem to be doing

> > o.k. I still have a good

> > deal of fatigue also. The pressure is what is

> > bothering me the most.

> >

> > Dr. W. tried to tell me I was having migraines and

> > at first denied the

> > surgery was responsible but then said it could have

> > been " triggered by the

> > surgery " . He recommended I see a neuro for headache

> > pain management. The

> > neuro said it is not migraines and what I'm feeling

> > is definitely caused by

> > the surgery but strongly discourages further

> > surgery. He said there could

> > have been a leak (even though the dura was not

> > opened) ( feels more like

> > things are blocked and csf is building up) and

> > possible slumping.

> >

> > I tried to get an appt. w/ Dr. Milhorat in Brooklyn

> > (I'm in Pennsylvania)

> > but can't get in unless I see Dr. Kula ( a neuro he

> > works w/ first) and of

> > course Dr. Kula has no openings until October. I

> > just don't know what to do

> > at this point. I had an MRI which supposedly looks

> > good but my neuro says

> > slumping won't show on an MRI. What are the symptoms

> > of slumping?

> >

> > Any suggestions out there would be welcome. I'm

> > working 6 hrs. a day and

> > then come home and collapse most days so I don't get

> > on here much but do

> > check my mail when I'm able.

> >

> > Chiari Clinic in MO

> >

> >

> > >Hi Group,

> > >

> > >I would like to make a comment about the doctor

> > (radiologist ??) that Siri

> > was talking with regarding the doctors in Missouri.

> > First of all, I would

> > like to thank Don for his comments and I agree with

> > him. Dr. Oro is a very

> > wonderful doctor. I only wish I had chosen him to

> > do my surgery. That is a

> > mistake I will have to live with.

> > >

> > >I live in Missouri and when I was diagnosed with

> > chiari in October 1999, I

> > didn't think the State of Missouri had any doctors

> > at all that REALLY knew

> > how to treat chairi, as I had been bounced around

> > from neurologist to

> > neurosurgeon far too many times. My husband and I

> > felt that if I was going

> > to " beat " this thing, I would have to seek medical

> > assistance from another

> > state, somewhere that has seen and done it all.

> > >

> > >Knowing that s Hopkins Hospital in Baltimore is

> > well-known for its

> > research, we felt this must be the answer. This was

> > probably the biggest

> > mistake I've made thus far with this journey, for

> > the doctor that did my

> > surgery wasn't as concerned about me as he should

> > have been. When I wasn't

> > one of his success stories, he (I feel) wanted me to

> > disappear and go away.

> > I don't intend on " bashing " his name publicly, as I

> > know he has helped many.

> > But, let me also say that reconstructive surgery

> > could be in my future. I

> > have just recently learned that patients of this

> > surgeon are like me. Some

> > have already had the reconstructive surgery.

> > >

> > >So I guess Siri what I'm trying to say is that

> > bigger is not always better.

> > I have definitely learned my lesson. You need to

> > also tell this radiologist

> > person that one of the big " neuro leaders " (Dr.

> > Long) at s Hopkins went

> > to medical school at the University of Missouri in

> > Columbia. Now isn't that

> > a hoot.

> > >

> > >I am now seeing Dr. Oro and I think he and his

> > entire staff are very

> > knowledgable of chiari. And, one important thing to

> > me is when I call or

> > e-mail them, I get a very quick response.

> > >

> > >Kathy in MO

> > >

> > >

> > >

> > >

> > >[Non-text portions of this message have been

> > removed]

> > >

> > >

> > >Help section: http://www.yahoogroups.com/help/

> > >

> > >NOTE: NCC refers to posts with No Chiari Content

> > >

> > >To Unsubscribe Yourself:

> > chiari-unsubscribe@Y...

> > >

> > >WACMA Home: www.pressenter.com/~wacma

> > >

> > >WACMA List: www.eGroups.com/group/chiari

> > >

> > >

> > >