Hi all,

My name is Ha Nguyen, your new MM friend from Nashville, TN. I was diagnosed with MM on my right brain on Apr. 8 and went to this website right after that. I didn't know how to post new message so I sent an e-mail to DJ. He suggested me to contact Dr. Steinberg immediately for a second opinion on reviewing my films/ records.

Teresa called me on Friday and told me that Dr. Steinberg confirmed my Moyamoya and suggested surgeries on both of my right side and left side . The earliest surgeries would be May 23 and June 1.

From what I have read about Dr. Steinberg in this website, I firmly believe in his expertise. My concern is that  my neurologist, who is well known in his field and my neurosergeon let me know that I have very little risk of stroke during the next several months and surgery is only a prevention for a stroke many months or years from now.  Besides, they mentioned MM on my right brain only?  I really don't want to offen my doctors so please kindly let me know how to talk to them if I want to have another surgeon.

I also worry about insurance. Teresa told me that the total surgery expense without insurance is about $200K. I only have student health insurance at Vanderbilt. I haven't found out yet how much insurance will cover the expense and if they agree to pay in case I take surgeries at Stanford , instead of my Medical Center. Please let me know if you guys have any experience relating insurance.

In case I can not go to Stanford for financial reason, do you know any MM surgeons in Vanderbilt, or TN? I can't find any name from our surgeons list.

I still take school work now and will graduate in May. I am alone here and after the surgeries I will go back to my home country, where medical facility will be insufficient. Teresa told me that I only have to take an angiogram test 4 months after surgeries. I would like to know more about your experience and what other questions I should ask Dr. Steinberg relating my post surgeries.

I have found so much helpful information from this website. Thank you so much for that. I still continue to read all of your messages.

Please let me know if you have any ideas, suggestions.
Thanks.

ha

Ha,

I don't have any advice on the financial situation. But as far as your doctors: Have you asked them how many patients they have had with Moyamoya? My son's neurologist was the best in the area, yet had never seen a case of MM and even said he didn't understand why the raidiologist tech thought Tyler had MM.

As you will read on here, many good doctors have told patients to wait for surgery. Some people waited to only have devastating strokes, others sought out second opinions and got help before a surgery. MM is still a very unknow disease/disorder to many neurologist and neurosurgeon. Their great experience in their field doesn't tell anything about their experience with MM.

Maybe you can give this site address to your doctors and ask them about what is presented here. This site is based on actual experience with MM. We don't have degrees and we only share our stories, but we do it to help people like yourself to have a happy story to share.

I will keep you in my prayers, Rena

Welcome aboard, Ha!  I hope you feel like you have an instant family by joining us here.  We would very much like to help you in any way we can, so please feel comfortable asking for support and about our experiences!

I am the mom of an 18 year old girl who had her surgeries with Dr. Steinberg last June.  Tara was 17 at the time.  Her first surgery was 2 weeks after diagnosis, as her occlusion was pretty severe on each side.  Considering the diagnosis of MM, which was shocking, our experience with Dr. Steinberg, Teresa and all of Stanford was wonderful.  I would trust him with my life, as well as the life of anyone I loved.  You've taken a very wise step by seeking his opinion.  

I would like to comment on several things you mentioned:

1) Regarding what your doctors have told you about surgery preventing a stroke many months or years from now:  Yes, that is what surgery does!  How far in the future, though, is something no one can know for sure.  A stroke could be coming sooner than you think.  MM is a progressive disease, and the rate of progression can be different from patient to patient.

2) MM is only on the right side:  Dr. Steinberg wouldn't do surgery on both sides if the MM wasn't there.  I personally know several people who have had surgery on only one side, and the other side is carefully watched until signs of MM show up.  My opinion - have the surgery on both sides if Dr. Steinberg says it's there.

3) Your concern about offending your doctors:  A reputable doctor shouldn't worry about a second opinion - in fact, he or she should encourage it.  They would do the same for their family member.  This is a big deal, and decisions shouldn't be made lightly!  Be kind but firm in speaking with your doctors.  Hopefully, they will support your wish to go to someone as experienced with MM as Dr. Steinberg.  (Some doctors may even see it as a relief, due to their own lack of experience with the disease. )

4) I wish I could offer you advice on the insurance issues.  Many people have successfully fought to come to Stanford, even when an insurance company said "no".  Keep working with Teresa; she is great with advice on this subject.

I am sorry that circumstances brought you here, but am very glad you found us!  The best of luck to you as you determine your plan of action.  Don't procrastinate though, as the MM will progress!  It would be so much better to have surgery before a catastrophic event occurs!

You will be added to my family's prayers.  Please don't hesitate to continue asking questions, o.k.?

Hugs from California,
Jill

Thank you very much Jill and Rena. I'll keep posting my latest new. God bless all MMers.

Ha

ha wrote on Apr 17^th, 2005 at 12:47pm:

I really don't want to offen my doctors so please kindly let me know how to talk to them if I want to have another surgeon.

Hi Ha, welcome to our mm family.

I would simply say… in my research, I’ve been advised by many to seek a second opinion with Dr. Steinberg, from Stanford. He deals with mm on a daily basis, and he and his staff, have done literally hundreds of surgeries for mm, both direct and indirect, and he lectures around the country on mm disease. It’s not that you doubt your doctors or their abilities, but rather think it’s wise to seek a second opinion concerning this rare disease from an expert on it. So, on that advice, you mailed your films, and Dr Steinberg’s opinion is to do surgery on both sides ASAP. Then see what they say. If they’re good doctors, they’ll know you did your homework and know your concerns, and perhaps even learn from this, who knows.

DJ told my family about Dr Steinberg as well; after we were told to “wait” to have surgery and my family said something similar to the doctors here at the University of Pennsylvania, and the head of Neurosurgery here said, "you’re right, if this were my daughter, I’d go to Stanford.” I’ll never forget that, God bless him.  Well, we did and Dr. Steinberg saved my niece’s life.  

I do not know the specifics of your case Ha, but how I look at it is, and I’m no doctor mind you, but IMO, if someone has mm disease; they have progressive narrowing of their brain blood vessels, simple as that, so you can have a stroke, plain and simple, but, when, (?) no one can know that. I personally don’t understand the “wait and see” logic. Wait for what? Why? We always emphasize a mm specialist because we know what can happen if someone waits to have surgery when they should NOT wait, and it’s devastating, and life changing. My niece had little or no symptoms of mm, or of an appending stroke, but she suddenly out of nowhere had 4 debilitating strokes that left her in a coma, on a feeding tube and paralyzed on the left side. I certainly don’t mean to frighten you, all my point is…please don’t wait for anything even close to that to happen by waiting. So when an expert says to have surgery, my logic is, why wait, if something like that is even a remote possibility, and unfortunately it is.

I hope and pray your insurance covers you to go to Stanford, but if not, my prayers are that of an experienced mm surgeon for you.

Please keep us posted, and know you're in my thoughts and prayers.

Mar

Thank you too ,Mar for your niece's experience and kind advice. I understand that I need to take surgeries asap. Now the only question is who and where. May I ask how long did your niece have surgery after discovering her mm?

I also have a new and maybe BIG question now: I went through a SPEC scan test with Diamox this morning. The radiologist has just informed me that the test was OK and they didn't find any thing abnormal in my brain and that I don't have to take another test without Diamox.

While I am waiting to hear from my neurologist by tomorrow and while my neurosurgeon is still abroad, I am very excited to  hear from your experience with the  SPECT  tests. DJ, I saw the pictures of your SPECT scans. I don't know how different mine is but from what the radiologist told me, does it mean I have less or no risk at all?

Thanks,

Ha

Ha-

Welcome to our family! I would not worry about offending your doctors there because it is your health and should do what you feel is best. I was told i should not have surgery at all but then found out that my life depended on it and had my surgery done by Dr. Steinberg. When it comes to insurance you sometimes have to fight with them but surgery is neccesary especially by a specialist. As for surgery every person is different but for me this week celebrates a year since my surgeries i had post op tests three months after surgery but have been okay since and no longer have to have test unless i experience problems. Just wanted to share my opinions and experiences with you. I hope all works out and please keep us updated. I will keep you in my thoughts best of luck!

-Christy

Hello Ha,
 We are so sad to hear you have been diagnosed with moyamoya.  But we are very very glad that you have found DJs website.  It sounds as though you are about my sons age.  He has gone through the operations with Dr. Steinberg and is doing very well.  You have already been given the best advice and have heard straight from the experts at Stanford.  I hope you can get care at Stanford.  Ask all the questions you can think of.  Be persistent with your insurance company.  This is nothing that money should stand in the way of.
 Sounds as if none of your family is here in the states.  You have found a different type of family here and we will help you as much as we can.  Any way we can help just ask.
                                     Ron

ha wrote on Apr 18^th, 2005 at 5:06pm:

May I ask how long did your niece have surgery after discovering her mm?

Hi Ha,

You have two very important decisions left, who and where (?) God love ya Ha, hope you get the answers that's best for you.

We never knew that my niece, Mandy, had mm, until after her strokes. We had to wait until she was stable enough to make the trip to Stanford for her surgeries. She was then medically airlifted from Philly to Stanford, about 8 weeks from her diagnosis of moyamoya.

I’m not really sure how to respond to you Ha, about the radiologists’ comment that they didn’t find anything abnormal with your SPECT scan. (The SPECT shows the “flow of blood” through your brain and measures the oxygen content with 3D images.) The radiologists' comment could mean several different things to me, but I have no medical training and should not comment on it, other than to say, the radiologist is NOT a mm expert, and I personally, would want to know exactly what it all means from an expert who knows this rare disease. I also would never comment on your specific risks, because I'm not qualified. But I can say that I believe this disease is sneaky, and from all that I’ve read, a persons' prognosis is based on the status at the time of diagnosis and after surgical treatment is instituted. So like I said before, since mm is a progressive disease, I would never “wait” unless an expert felt it was safe enough to do so.

I sure hope you get your answers. Please keep us informed. This is a learning process for all of us as well. Thank you Ha. [smiley=hug.gif]

Mar

Thank you very much Mar, Ron, Christi and everybody for sharing with me. I couldn't get out of my bed for 12 hours, tired and headaches, maybe because of the effect of SPEC scan and Diamox.

I live by myself in the States but these days, my classmates, friends, and faculty have encouraged me and helped me to seek insurance information and give me many advice. Especially since I found DJ's website and got your kind replies, I feel like having a second family of people that are understanding, having the same situation and same feelings. Thanks again.

Ha

Ha-
I had surgery with Dr. Steinberg in November of last year after being diagnosed in September.  I just had MM on one side and had only one surgery.  I wanted to answer your question about the Diamox Spect scan....my scan was basically normal and I did not have a second one without Diamox.  I was diagnosed mostly through the angiogram.  This definitely supports one of our "mottos" that each of us is different and unique!

I was concerned about offending my neurosurgeon as well.  Basically, after a lot of thought, I decided it was my life and I couldn't risk it because I was worried about hurting someone else's feelings.  I know that you will make the decision that is right for you.

I also had some trouble with insurance and I am still fighting some battles.  The only advice I have is don't give up!!!  You deserve the best care that can be provided to you!  

I am thinking of you and we are all here to help!

Best Wishes from Ohio,
Chelsie

I wanted to share with you this recent Japanese study. Not everybody go fast downhill with MM!


No Shinkei Geka. 2005 Apr;33(4):337-42.

[Clinical features and outcomes in patients with asymptomatic moyamoya disease--from the results of nation-wide questionnaire survey]

[Article in Japanese]

Yamada M, Fujii K, Fukui M.

Department of Neurosurgery, Kitasato University School of Medicine, Sagamihara-city, Kanagawa, Japan. yamadam@med.kitasato-u.ac.jp

After induction of noninvasive diagnostic tools, asymptomatic moyamoya disease is occasionally being diagnosed. However, there is no epidemiological or clinical data concerning this condition because of its rarity. To elucidate clinical features and outcomes in patients with asymptomatic moyamoya disease we conducted a nation-wide questionnaire survey. Questionnaires were sent to 88 neurosurgical institutes in 1994 and we received answers from 66 institutions (75% recovery). Diagnosis of moyamoya disease is based on the guidelines established by the research committee on moyamoya disease of the Ministry of Health and Welfare, Japan. Thirty three asymptomatic moyamoya disease patients were collected (11 male, 22 female) and divided into 2 groups; group 1 defined as patients without any symptoms, and group 2 as patients who did not show any symptoms except headache. 80% of group 1 patients were adults, whereas in group 2, children and adults were equally distributed. Follow-up periods were 3 years and 8 months on average. Among conservatively treated 28 patients, 2 patients died from suspected bleeding (mortality 7%) and 4 patients with TIAs resulted in good outcome. Among surgically treated 5 patients, 1 patient showed poor outcome due to post-operative infarction. Other 26 patients showed excellent outcome. Natural course of asymptomatic moyamoya disease seemed benign, but mortality from bleeding is not negligible. A prospective study of asymptomatic moyamoya disease is necessary to clarify its natural course and appropriate management strategy.

Hi jv,

Thank you for sharing the study with us, but in all honesty, IMO, that short study, by no means clarifies an outcome of anything. The risks are still the same.

I don’t think I’ve ever read that you go down hill fast with moyamoya disease. I have read however, and stated that, moyamoya is a progressive disease and warned of the obvious strokes that may result without surgical management.

Dr Scott, a leading mm expert has stated:
All patients with moyamoya syndrome have progressive narrowing of their brain blood vessels over time, and I have never seen an exception to this rule after many years of studying these patients. Along with this progressive narrowing of the brain blood vessels, the patient's clinical condition will worsen also; this is why surgery to increase the brain's borderline blood supply is so important.

Bottom line, doing nothing once diagnosed with asymptomatic moyamoya disease, you are still at risk. Everyone may progress differently, but never the less, the devastating risks are still there, and surgery is all that we have to give us a positive, long term outcome.

My [smiley=twocents.gif]

Mar

That's an interesting discussion. Please keep going on so that I and other people can learn more from different perspectives that help us to make better decisions.

Thanks a lot to Chelsie for sharing your very similar experience. You give me more couragement.

All the best.

Ha

Hi All,

I will not be able to sleep tonight [smiley=bomb.gif]. Dr. Fukushima, who I ask for a third opinion has told me that he reviewed my angio and that I don't need to take any surgeries at all. I have enough good collaterals and surgeries just invovle more risks.

I am almost on the way for surgeries next month, but now totally confused. Dr. Steinberg suggested 2 surgeries, my neurosurgeon suggested 1, and now Dr. Fukushima said none. He is also a MM specialist, have treated 50 cases. What should I decide? [smiley=huh.gif]

Many of you have written again and again in this board that MM patients should not wait and should go ahead for a surgery as soon as possible. But I really need to hear from you in this case. Will MM be different in different people?.....

:'(

Ha

ha wrote on Apr 30^th, 2005 at 9:53pm:

Will MM be different in different people?.....

Hi Ha,

Sure, mm is different in each person, because each individual has different factors involved. BUT mm, the disease is not different in that, you are never free from the risk of a stroke if you do not have the proper blood flow and oxygen to the brain.

In short, the facts as I know them are: IF properly diagnosed with moyamoya disease, EVERY PERSON has PROGRESSIVE narrowing of the brain blood vessels.

It’s a fact that surgery is suggested for restoration of blood supply to the brain.

It’s a fact that the mm vessels are abnormal and weak, and often at risk for hemorrhage. (Meaning risk of stroke or death) These things are never different. They are facts.

Yes, some people with mm disease are at higher risk for stroke then others, and for many different reasons. Perhaps someone’s blood pressure may differ and be a factor. For some, mm progresses faster than another’s. Some people have neurological dysfunction from prior strokes. Others have additional medical conditions or take different medications, etc… so many reasons why mm is different with each person, but never the less, the risk of a stroke is still there if you have mm disease and that's why I feel it’s the important issue. Unfortunately, there are no medications that prevent the arterial narrowing process from progressing or keep the moyamoya vessels from developing.

I wish I knew of more studies and research to be able to say it’s ok to wait, but all I’ve ever known to date was the many people who were told to wait and had devastating outcomes. Yes, there are mm members here who have been told by reputable neurosurgeons that they did not need surgery because they have sufficient blood flow and they’re asymptomatic, but what I don’t understand is, they’ve had severe strokes. So my point is, why the debilitating stroke, if there is proper blood flow??

Here’s how I look at it Ha… Moyamoya is a progressive disease, right? Even if you’re asymptomatic, you’re still at risk for a stroke, and 2 out of 3 doctors suggest surgery to prevent a damaging stroke. So, all I can say is, weigh the facts; they speak for themselves in my opinion. I would ask questions and learn all you can about mm the disease. I think the answers you need will come without a doubt.

As far as risks with surgery…  naturally that's always a concern with any surgery, but again, that’s why we emphasize an experienced mm expert. Not just a neurosurgeon who has done, or can do the surgery, but an expert on mm, the disease. The credentials and experience speak for themselves, and that’s comforting when faced with a decision like brain surgery.

I'm sorry for the length of this post. I'm just so concerned and have so much inside I'd like to say. Please know you’re in my thoughts and prayers. Keep us posted.

Mar

Mar,

What a great post!!! You have said it all so well!!  Along with DJ - you are an asset to this website.

Always your friend

Janice

Mar, thankyou for that post.  Absolutely WONDERFULLY put in my opinion!

Ha, just like I posted to ggonzo in another thread when sh said her husband's doctors told her he had good collateral flow around his blockages.  Yes, collateral flow does a decent job of making up for blockages to start with.  However, over time, collateral flow cannot supply all of the brain's needs for oxygen.

We talk a lot about doctors who specialize in the treatment of moyamoya disease on this site because we know these doctors understand that good collateral bloodflow is a plus, at some point, it will not be enough.

These doctors are probably more aggressive suggesting surgery to correct the bloodflow problem, but I think they do so because they better understand what the furture can hold and they would like to see the problem corrected before serious or permanent damage is suffered.

True, collateral flow may be enough to handle a person's needs at the moment, but who's to know the exact time it won't be enough and damage occurs?  It's exactly like knowing the transmission is going out in your car and doing nothing about it.  At some point, your transmission is going to break and leave you stranded.  Why not get it fixed BEFORE it breaks completely and you get left stranded on the side of the road?

I mean no disrespect to any other neurologist or neurosurgeon when I say... when it comes to the treatment of moyamoya disease, I would bet my life on Dr. Steinberg's opinion.  In fact, I already have, personally... TWICE.

DJ

Your MM specialist has seen almost 50 cases Dr. Steinberg has seen a couple hundred, not that others are not good but he has a ton of experience under his belt, he even gives seminars around the country on MM, I'm with D.J. we trusted him with our Daughters life twice, and if I was to get MM I would trust him with mine hands down, there wouldn't even be a second opinion, becuase I know what he can do and that he is so knowledgable about MM.
                                Nancy

Dear Ha,
I was diagnosed with MM on the day of my identical twin sister's 1st sugery with Dr. James Rose in Houston, Texas. I was so sure that I didn't have it because I had absolutely NO symptoms at all. When Dr. Mawad said I had MM I was stunned!! That was in June 2004. By November out of the blue I had my 1st TIA. In January I had my 2nd. I, too, was told I had a great set of collaterals. It was what saved my life. Only thing is, they don't do the job forever. Those collaterals are helping you right now....so please do something to help them out !! My 1st Neurosugeon said, "Don't fix what ain't broken!" I thank God I listened to Dr. Mawad and Dr. Rose (MM specialists) and had my surgery. My next one is on May 9th. There is no doubt in my mind that it is the right thing to do!! Good LucK with your decision....trust your instincts!!!                  laura twin a

Hello Ha, and welcome.

I just wanted to make two points:

1. I understand your respect for medical professionals, as in your home culture, doctors are seen as authority figures, even more so than they are here.  Most people here in America never doubt what a doctor says either.  But the people here can attest that many of them have been given bad advice for them or their loved ones because most doctors don't even know what moyamoya is.  And, I am sad to say, some think they do but are mistaken.  My own sister was misdiagnosed with cerebral vasculitis, and the prednisone treatments for that nearly killed her and have done permanent damage.  (The good news is, she was eventually correctly diagnosed with moyamoya and has had two surgeries, which have helped a lot.)

2. I may be wrong about this, but my impression was that relying on collateral blood flow may actually increase your risk of strokes.  As I have understood the disease, and tried to explain it to others, the major blood vessels to the brain are partly or entirely occluded, causing a network of tiny peripheral arteries to begin working overtime, building new branches, and forming a very complicated system of vessels to attempt to feed the brain.  When they simply can't make up for the job usually done by the major (occluded) vessels, strokes occur due to insufficient circulation.

I am in no way a medical professional, but that was my understanding of how the disease worked and where the "puff of smoke" (moyamoya in Japanese) description came from.

Your situation, as everyone's, is unique.  In your case, time is of the essence not only in preventing strokes, but also so that your treatments can be done while you are still in the US.  I pray for you that all the right things come in to place for you to get the help you need.

Diane

Thank you so much everyone. You responses did help me A LOT during the very hard time.

Just to let everybody know that I will fly to San Jose on May 15, after my graduation date on May 13 :). I will go to Stanford to have a Xenon test on May 23. I will see Dr. Steinberg after TCD test on May 24, and will have the surgery on May 25. I will stay in the area for a few weeks after operation. I hope to see some of you there. I'll keep you update with my surgery.

Thanks again.

Ha

Bravo, Ha! [smiley=thumbsup.gif]

I will be praying for you.  I hope everything goes ok, but I know it will.  You will be in the best of hands with the surgery and anethesia teams.  

Good luck,
Michelle

Welcome Ha. If your doctor is professional enough, I'd imagine he would understand your worries on wanting to switch to a doctor with more MM experience. Experience means alot. With my situation I was misdiagnosed after my first stroke by a doctor because he had no MM experience  and I was given the wrong treatment, which led to another stroke.   >:( best of luck to you Ha.

Welcome to our fair city, Ha!  I live in San Jose.  I will be keeping you in my thoughts and prayers this week and next.  Praise to God for this all happening for you the way it needs to!

Diane

Dear Ha,

Wow, you've made some big decisions over the last few weeks!  I can only imagine how confusing it was for you, given the varied recommendations from the doctors.  My opinion, of course, but I believe with all my heart that you've made a wise choice.  Dr. Steinberg is as expert as you'll get with MM the disease.  As the old saying goes, "better safe than sorry".  Waiting to see what could happen with MM is certainly taking a gamble.

As I mentioned in an earlier post, my 18 year old daughter had her surgeries with Dr. Steinberg last June.  11 months post-op, she has become kind of the local "poster child", and loves helping others go through the surgery experience.  We live about 1/2 hour from Stanford, so would love to meet you and provide whatever support we can while you are here.  I will send you a private message with our phone #s, in case you'd like to talk before you come to California.

In the meantime, congratulations on your upcoming graduation!  I hope it goes well!  You will be in our prayers, and we will look forward to speaking with you soon.

Hugs from out west,
Jill

Aloha Ha,

I have been reading your post over the past few days.  I truely can relate your confusion and frustration!  I just returned from North Carolina...I had a bypass and two indirect flaps and am still recovering in Hawaii.  

Up until I made my decision to have the surgery done, I was in constant turmoil and received many opinions.  My Neurologist was always on the right course.  He recommended from Day one to have the bypass done.  I then went on to get another opinion and the second opinion suggested that I have a stint put in but after much discussion, it was determined that that procedure was much more risky than the bypass.  I ended up with two more opinions and they all let to me having my  bypass.  I do not have clearly definited moyamoya vessell but I have early moyamoya like vessell and stenosis of the MCA.  I had 3 TIAs and a small stroke before being diagnosed w/Moyamoya.

Anyway, to make a long story short, I had my surgery on April 26th and returned home to Hawaii on May 2nd.  Dr. Takanori Fukushima was my neurosurgeron and I can not speak of him more highly.  He is a world reknowed neurosurgeron that has seen well over than 50 cases.  Infact, he is a doctor that has been trained in Japan and has performed many of the surgeries in Japan, Hawaii, West Virginia, and Duke.  He is quite amazing and people come from all over the world to see him.  My husband, a physician himself, was also very impressed w/him.  As for Dr. Fukushima telling you may not need the surgery, I don't know what to say.  But I do know, that you have to do what you think is right.  Seek out the best...and if that is surgery, go for it.  Once you make up your mind to do it....believe me you will feel much better.

My thoughts and prayers are with you.
With Much Love and Aloha,
Colleen

Hi everyone,

Thank you Colleen, Jill, Diane, and everyone. I didn't have access to internet very often for a while.

I went to Stanford to take the Xenon test this morning. The test was terrible and they had to stop it half way. I felt like I just came back from another world after the test. Please kindly let me know if anyone was in the same situation.

I met Teresa the first time. She was amazing! Teresa scheduled a SPEC scan test for me but I  already had it at Vanderbilt. I will see Dr. Steinberg tomorrow and will  have the surgery on Wednesday, which I haven't known the exact time yet.

Jill, I got your phone number from Teresa. I will try to call you today.

Thanks again and best regards,

Ha

Ha,

I am so glad your Xenon CT scan went well!  Good luck on your surgery Wednesday.   You are in very skilled hands!

I am so glad that you like Teresa, and you'll be contacting Jill.  They were wonderful to us while we were out in Stanford for my daughter's surgery (this past March)

I think you have made a wonderful (and brave!) decision.  My thoughts are with you.  Please let me know if there is anything I can do.

Jenny (mom to daphne)