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Anyone in Philadelphia area? (Read 11086 times)
sally
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Anyone in Philadelphia area?
Jul 27th, 2007 at 2:12pm
 
Hello, my name is Sally and my 23 year old daughter Katie was just diagnosted with moyamoya, this was after her third and most dibilitating stroke.  We are with the Hospital of the University of Pennsylvania (HUP) and I would love to talk to someone local as my head is spinning. 

Has anyone worked with the doctors at HUP?  They are talking surgery in another month or two.  Thanks for any responses.  Sally & Katie
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Sally & Katie
 
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SweetEmily
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Re: Anyone in Philadelphia area?
Reply #1 - Jul 27th, 2007 at 3:37pm
 
Why are they waiting so long to do the surgery??? Time is critical with this disease - the sooner she gets the surgery the better. They wanted to keep waiting to do my daughters surgery so I sought out a doctor in NYC that would do it and knew the importance of not waiting to get the surgery done. We live in Charlotte, NC. Lori
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Greg-NJ1
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Re: Anyone in Philadelphia area?
Reply #2 - Jul 27th, 2007 at 7:15pm
 
Hi Sally,

I'm in north NJ, right outside of NYC. My heart goes out to you and your daughter. Listed in doctors with experience is Dr. Sander Connolly at Columbia Presybertian in NYC. Dr. Randy Marshall is the neurologist. Both have experience with MM and have treated several individuals on the site. I'm not sure if they are in your insurance, but I would make contact for a second opinion, especially because they are so close.

Also do not heasitate to get in contact with Dr. Steinberg.

Just my 2 cents
Greg
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I was misdiagnosed with MM in March of 2005. In January 2006, I was told it is not MM, but rather a massive restriction in the MC1 segment of my left carotid artery.
 
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Mar
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Re: Anyone in Philadelphia area?
Reply #3 - Jul 27th, 2007 at 8:24pm
 
Hi Sally,

My name is Mar and I live right outside NE Philly. I can probably relate to your situation better than most because I have a 25 year old niece who had 4 debilitating strokes when she was in U of P and diagnosed with MMD at the same age as your daughter, about 5 years ago, and I remember the head spinning all too well. I didnít think ours was ever going to stop. Iíd be happy to talk with you by phone, in person, or e-mail and help you in any way I can. Thereís so much information, I couldnít begin to put it all in a post here, so please contact me. Iíll put my private contact information in a PM (private message) I look forward to hearing from you.

In the meantime, hang in there and know you have a wonderful group of people here whoís been down that same road and will be here for you. Youíre not alone. Keeping you and Katie in my thoughts and prayers.

Mar
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STrantas
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Re: Anyone in Philadelphia area?
Reply #4 - Jul 28th, 2007 at 10:47am
 
Hi Sally -

I was 27 when I was diagnosed at HUP after a full, but not so debilitating stroke.  My neuro at the time, Dr. Liebeskind, is no longer there.  After many tests (11 vials of blood, several MRI/MRA's, angiogram, and second opinion) I was told by Dr. Liebeskind that my MM was not accute - meaning not very active, not very bad.  However, as soon as I got a definitive diagnosis I started research and found this website.  All of my research pointed in the direction of surgery.  When I met with Dr. Liebeskind and told him about my research and we discussed my options, Dr. L advised me that if I was leaning toward surgery that he recommended I go out of state for a surgeon.  Although the Philly area has many great doctors and many wonderful hospitals, the one thing we lack is good neurosurgeons and MM is rare enough that many philly area docs do not have enough experience.  I was greatful for his advise.

Anway, further research led me to Dr. Scott in Boston.  Dr. Scott is a pediatric neurosurgeon but sees adults up to age 35 (abt a 5 hour drive, or 50 minute flight to Boston!).  Anyway, my insurance company at the time wanted me to see a Dr. Rossenwasser at Jeff.  DO NOT GO TO DR. ROSSENWASSER.  While I've heard of many great things about this doctor, he does not have the experience or the same philosophy about treating MM as the experts do.  In fact, I called Dr. Rossenwasser and asked about his history in treating MM - he believes in treatment with medication - I felt like a ticking-time bomb waiting for another stroke. 

So, needless to say, I made an appointment with Dr. Scott in Boston and actually paid for the first appointment out of pocket.  He said I had a classic case of MM, that it was still active (I was having TIA's) and I was schduled for surgery - surgery date within a month of my visit.  Luckily, I was able to switch insurances before my surgery. 

All in all, I had another stroke after my second surgery - but so glad I went though it because I feel wonderful now...I went from multiple TIA's in one day to none!

My advise to you is to do your research and arm yourself with information.  Please feel free to email me if you want to speak directly (shari.trantas@comast.net).  We can talk, too - but don't want to give my number on the public board!

Good luck, fellow Philly gals!

-Shari
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A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04
STrantas http://www.facebook.com/home.php?#!/strantas?ref=p STrantas  
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sally
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Re: Anyone in Philadelphia area?
Reply #5 - Jul 30th, 2007 at 10:33am
 
To All,
thanks so much for responding and offering your help.  I have been reading the all the posts on surgey, headaches, everything here about moyamoya.  This is so scary to face so suddenly, but I am not experiencing anything everyone here hasn't been though!!

Just the posts on headaches was an eye-opener as Katie started with migraines as an infant.  No one could figure what the heck was going on and at her first stroke at 13 the severe ones stopped, again no one could explain what was going on.  We saw doctors and tested at CHOP all while she was a infant/toddler/child with no answers.  Did technology at this time even allow doctors to know what this was? 

Sorry for the rambling, I am trying to keep a handle on life.  Ok, I believe we need to see another doctor, either Boston or California.  Do I just email/call and talk to them?  We have been give the run-around and put off for 23 years, I just can't imagine an honest interest in Katie's case.

HUP initially said surgery now. Then they said wait because she is in a rehab hospital right now trying to get some function back to her left side.  They were concerned about surgery right away because of her weakened state and putting her out of commission for more time.  Maybe the waiting is a blessing 'cause I found this list.

Sally & Katie

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Sally & Katie
 
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STrantas
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Re: Anyone in Philadelphia area?
Reply #6 - Jul 30th, 2007 at 5:36pm
 
Sally -

I would certianly suggest you both email and call Dr. Scott and Dr. Steinberg (Boston / California).  I know you will be able to send Katie's films to Dr. Steinberg - not sure about Dr. Scott in that I never sent my films - I just made an appoitment with him and delivered my films in person!  I know from experience, that Dr. Scott loves emails!  So, if you go to Boston or California - it's certianly your choice - but you are in great hands either way. 

I dont know if you've come across this in your research, but Dr. Scott primarily does the Indirect bypass (EDAS) while Dr. Steinberg primarily does Direct bypass.  (I stress primarily because there are always exceptions!).  What surgery is right for Katie is between your family and the surgeons.  I had the indirect - with Dr. Scott.

Just more things to consider.  I'm glad you found us - sorry you had the need to find us - but glad you did.  Please, if we can be of any more help let us know - we are here to support you!

-Shari
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A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04
STrantas http://www.facebook.com/home.php?#!/strantas?ref=p STrantas  
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Mar
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Re: Anyone in Philadelphia area?
Reply #7 - Jul 30th, 2007 at 5:38pm
 
Hi Sally,

I think youíd be surprised to know that all of what youíve explained to us so far, sadly we see and hear quite often. Yes the technology could have detected Katieís MMD over the years, but unfortunately the knowledge about this disease is not out there and still to this day itís often misdiagnosed or undiagnosed. Delay in treatment is the particular pitfall we see because of the lack of experience and understanding of this disease in the medical community and delay in treatment is dangerous and risky without a MM expert. Even if a patient is lucky enough to be diagnosed with MM before a stroke occurs, we often see many doctors tell their patients to wait for treatment or they tell them not to have surgery or that surgery is too risky, but what many new patients donít know is, although you may have a very good neurologist/neurosurgeon, many times they just aren't educated enough about MM ďthe disease itselfĒ, which makes the "risk" more about their lack of knowledge of MM, rather than actual risk to the patient, and whatís important to know is, this is a progressive disease, it gets worse over time and surgical management is the ONLY treatment for MMD.

You are very wise to contact either Dr. Steinberg @ Stanford or Dr. Scott @ Boston for their expert opinion. They are the best MM experts in the country and have done hundreds of surgeries for this disease and they treat this disease on a daily basis. Itís quite easy to get a second opinion and itís usually free. You simply mail a copy of your daughterís films for their opinion and they contact you after reading them with their expert opinion, and then youíd know if youíre on the best path for Katieís particular case. No two cases of MM are alike because of all the individual factors involved, but thatís where the experience of an expert is so important. All the contact information is here on the website or anyone here would be happy to help you.

I canít emphasize enough how important it is that you have a doctor with real MM experience. I think itís vital because of the many important factors involved with this disease. Perhaps if I explain briefly what happened in our family, youíll understand what I mean a little better. In our case, my 20 year old niece had a stroke and they sent her from our local hospital here (outside Philly) to the University of Pennsylvania where she was diagnosed with MMD, and they told us that we had some of the best neurosurgeons in the country there, and that they knew all about MMD, BUT they told us she didnít need surgery at this time, so naturally we believed them. So, long story short, she had 4 devastating strokes that left her in a coma, on a feeding tube, paralyzed, incontinent, etc and fighting for her life. Thank God I found this website. DJ told us to get a second opinion with a MM expert, so we contacted Dr. Steinberg, at Stanford. We overnighted a copy of her films (MRI/MRA & Angiogram) for his expert opinion, and we heard from him the next day. He said she needed surgery immediately, so we had her medically air lifted from Philly to CA and Dr. Steinberg saved her life.

Please don't feel as though you're rambling. This is all so scary at first, but the more you learn the less scary it is. If you arm yourself with knowledge and get well informed the road gets easier. Don't be affraid to ask lots of questions. If you need any help, please donít hesitate to ask or feel free to contact me or any other member here.

You, and Katie will be in my thoughts and prayers.

Warmly,
Mar
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Lore
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Re: Anyone in Philadelphia area?
Reply #8 - Jul 30th, 2007 at 9:13pm
 
Hi Sally,

First let me begin by saying you are not rambling and I know how overwhelming and scary this can all be. This is a support family and we are all here to support you and help you through this journey and answer any questions you may have. Believe me, we have all been down this road one way or another.

I've been reading all the posts on Katie and I am in agreement with all and especially Mar and Shari for their indepth explanations/suggestions and personal experiences.

My brother Kevin (Cubbie) went misdiagnosed for four years and suffered two strokes that affected his speech and thinking. He was given every diagnosis except MM.

Finally an angio was performed and the doctor performing the angio, saw the collateral vessels and said he had never seen anything like it and sent Kevin home in his words "to live out whatever life he had left".  I thought that was extremely callous and cold and felt there was someone somewhere who knew what this was.

Long story short, received a diagnosis of MM and started to search.  It lead to this site and Dr. Steinberg in California due to Kevin being over the age of 35.

I too thought was there really someone interested in Kevin's particular situation? Was there actually a MM specialist? Absolutely! From personal experience, it is Dr. Steinberg, his nurse Teresa and Stanford University.  Because Dr. Steinberg is an expert in MM, in retrospect, it all made since that he was interested in Kevin and knew exactly what he was doing.  Not to mention he has devoted much of his career to MM patients and he is a very humble doctor and pleasant individual.  Other doctors should have such bedside manner. He and his nurse Teresa immediately got the ball rolling and the rest is history.

Kevin had two STA-MCA bypasses by Dr. Steinberg at Stanford in May of 2005 and is doing very well. We are eternally grateful to Dr. Steinberg, his nurse Teresa and the entire MM staff and Stanford University for giving Kevin another chance at life. We are eternally grateful to DJ for this site for educating us about MM and leading us to Dr. Steinberg.

As Mar and Shari mentioned, there are some very excellent neurologist and neurosurgeons out there who just aren't familiar with MM.  On the other hand, unfortunately, there are some doctors masquerading as MM specialist when in fact, they have very little MM experience if any. As an example, I had a doctor tell me he was a MM specialist and that Kevin could wait for surgery all the while Kevin's speech is worsening, he is off balance to the point he was misjuding walls and walking into them, his ears were purple, he was hearing a swooshing noise in his ears and his skin color was gray.  I knew Kevin was in serious trouble. Had another doctor say Kevin was too far gone for treatment. Oh really? We now know that was inaccurate.

Thank God for Dr. Steinberg, Teresa and Stanford University.  It goes without saying that had Kevin not gotten to Stanford when he did, he would not be with us today.

I say ditto to getting films to Dr. Steinberg and/or Dr. Scott ASAP even though Katie is in a rehab hospital.  In other words, don't let that delay you.  The sooner the better. Their information is located under the section titled Surgeons with Bypass Experience and also there are links to Stanford and Dr. Steinberg on the Home page.

Just a side note.  We live in Ohio.  The more than 2,000 miles traveled for life saving treatment by a MM specialist is meaningless to the fact Kevin is alive and well today. It has been worth every mile and every penny.

Please know we are here to support you in any way we can and to answer any questions you may have.

You and Katie are in my thoughts and prayers.

Hugs,

Lore
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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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Andreana
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Re: Anyone in Philadelphia area?
Reply #9 - Jul 31st, 2007 at 11:01pm
 
Hi Sally,

My name is Andrea but I go by my baptismal name of Andreana. I have experience with the HUP team. My Neurologist is from HUP. His name is  Dr. Steven Messe. He is excellent.

For my first opinion for surgery, Dr. Messe recommended someone from HUP of course. So, I went to Dr. Eric Zager at HUP. A very nice doctor yet I didn't feel comfortable with his experience in direct or indirect bypass surgeries.

I emailed Dr. Gary Steinberg out of Stanford University. He recommended Dr. Michael Scott from Boston. Dr. Scott only does surgeries on children.

Dr. Scott recommended Dr. Robert Rosenwasser, Dr. Sanders Connelly out of Columbia Presbyterian in NYC and two other doctors I do do not recall at this time.
A friend of mine also recommended Dr. Rosenwasser because of family member of hers had surgery by him and he did well.

I had an EDAS procedure, an indirect bypass surgery on the left side of my brain last year in February at Thomas Jefferson Neurosciences Hospital in Philly. My Neurosurgeon is Dr. Robert Rosenwasser, Chair of the Neurosurgery Dept. He and his staff are excellent.

Dr. Rosenwasser does not waste time and may seem to rush Katie to have surgery done right away. He will request a Cerebral Angiogram which he performs. That is a "blue print" so to speak to see what options Katie will have.

If you have the time and are able to get a second opinion, I would recommend  an excellent Neurologist  from Columbia Presbyterian in NYC. His name is Clinton Wright. He also recommended Dr. Sanders Connelly for Neurosurgery. I personally have not met Dr. Connelly.

I would love to meet you and Katie when it is good for you both. I live in Ambler. I would like to begin an in person support group and incorporate our treating doctors from time to time. 

I am disabled at this time because it will take awhile for my new vessels to grow. And I am in my 40's and that has a lot to do with it. Your daughter is in her 20's and has youth and tenacity on her side along with a loving, supportive family. God is with us. Have faith.

My email address is: apkoutoudis@yahoo.com

I hope to hear from you soon.

God bless and God speed,

Andreana Smiley
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Andreana
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Re: Anyone in Philadelphia area?
Reply #10 - Aug 1st, 2007 at 11:18pm
 
Hi Sally,

It is Andreana and I live in Ambler, PA 35 minutes outside of Center City Philadelphia. Please email me so I may give you any info on our local hospital and surgeons.

I pray Katie is hanging in there as well as you and your family.

Andreana
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sally
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Re: Anyone in Philadelphia area?
Reply #11 - Aug 2nd, 2007 at 8:27am
 
Hi Friends,

Reading your posts with information and support is so reassuring that we are not in this alone.  As I said before, this short waiting period is turning into a blessing because I was able to find this understanding group.

Andreana, Drs Messe and Zager are the team from HUP that hare handling Katie's case.  We have an appointment coming up with them and I want to be prepared to discuss all our options, including either going to Dr Scott or Steinberg. I can't think they will be so thrilled that.

Katie is in Bryn Mawr Rehab.  She has a case manager coordinating all her paperwork and therapies.  Yesterday she mentioned that she has been working with my insurance carrier and the insurance is understanding of the MM condition. Apparently they are familiar with Dr. Scott in Boston.  I have to breath a sign of relief that this is in our favor. 

So the insurance and coverage will be another area that I'll have a million questions on. 

Take care,

Sally & Katie
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Sally & Katie
 
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STrantas
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Re: Anyone in Philadelphia area?
Reply #12 - Aug 2nd, 2007 at 8:43am
 
Hi Sally -

Just an FYI, Dr. Scott does see adults up to age 35...also, you've now received 2 different stories and opinions on Dr. Rossenwasser...all the more reason to arm yourself with information and knowledge.  I have confidence that you are doing that!

Also, you've heard of different experiences with surgeries...I noticed (although doctors say it's not possible) a very quick affect from my EDAS surgeries...I went from multiple TIA's a day to none!...a pretty dramatic result.  But, that also illustrates that everyone's experiences are different.

I'm excited to hear that your insurance company is familiar with Dr. Scott.  It really helps to have an insurance company on your side!

Andreana - I live in Conshohocken, but work in Ambler...I've never realized there was somone so close that has MM!  I would love to coordinate a meeting with you, myself, and Sally and Katie.

-Shari
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A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04
STrantas http://www.facebook.com/home.php?#!/strantas?ref=p STrantas  
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sally
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Re: Anyone in Philadelphia area?
Reply #13 - Aug 2nd, 2007 at 4:05pm
 
Andreana and Shari,
Our world is narrowing.....

I live in North Wales and work in Blue Bell Cheesy

How about that, talking across the internet but actually in each other's backyard.   Definately need a meeting let's plan on that.
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Sally & Katie
 
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Judy O
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Re: Anyone in Philadelphia area?
Reply #14 - Nov 18th, 2009 at 4:45pm
 
Hi ladies,

I know it's been a long time, but would anyone be interested in having an MM support group?  Maybe we could meet once a quarter and talk about our experiences?  I live in New Britain / Doylestown and grew up right near Ambler, and work in Horsham, so it sounds like we're all pretty local.  Let me know what you think!!

For details, I'm 30 and had 2 pial syangiosis surgeries in December 2008 by Dr. Scott up in Boston.  I have a follow-up angiogram on 12/14 of this year. 

Judy O'Leary
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kelly
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Re: Anyone in Philadelphia area?
Reply #15 - Sep 22nd, 2011 at 9:19pm
 
I am not sure how often people check these posts,but I live in lancaster Pa, and have lived in philly and warminster. I was wondering how you all/kids are doing and where you ended up having surgery. I have sent mt scans to stanford and am waiting to hear back from them. I saw my neurologist here in lancaster who thinks I should have a stent placed, so I need to show him why that is not a good idea....  any info you can share about philly docs would be appreciated
thanks kelly
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