Also having problems since surgery at Hopkins

[Guest guest]

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

>

>

>

>

>