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Not sure about MM (Read 10463 times)

lorabeas

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Not sure about MM
Oct 6^th, 2007 at 12:16am

My 3 yr old daughter had 2 strokes after skull base surgery in 2005. (She was 7 months old). The only explanation I was given was "due to abnormal vessels".

One yr later '06, she started having weird and difficult to treat seizures, called Infantile Spasms. She has been having them every day since.

Just last month (Sept 24th) we went to a pediatric stroke team at CHOP (Children's Hospital of Philadelphia). We were told she had narrowing of the carotid arteries.

We were not told that she had Moya Moya. Is there a difference?

Thanks,
Lora

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Mar

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Re: Not sure about MM
Reply #1 - Oct 6^th, 2007 at 4:04am

Hi Lora,

Even though MMD is a progressive narrowing of the INTERNAL carotid arteries, I still couldn’t say narrowing of the carotid arteries would mean MMD. There are so many vascular disorders, such as atherosclerosis and so on, but I will tell you it’s rather easy to diagnose MMD on an angiogram, in the sense that, either you have the MM vessels (collaterals or “puff of smoke”) or you don’t. The Angio is the definitive diagnostic test needed for an accurate MM diagnosis. Did they say she had narrowing of the brain arteries or did they just say narrowing of the carotid arteries?

I don’t know how to put this sensitively, so I’ll be frank if you don’t mind. I’m from Philly, and although we have some excellent doctors here in the city, it’s been my experience that they know very little about MMD. You can have a skilled, brilliant neurosurgeon, but if they have little experience and knowledge about MMD, it could be a death sentence. The key to success with MMD is experience and knowledge; there are so many important factors involved.

MMD can also cause seizures. We have a member here, “Kotipup” who has a little girl, Daphne, who has MMD and she was also diagnosed with Infantile Spasms. She may be able to help you a lot more. She’s has so much knowledge and has done so much research over the years. She has her own website about Daphne. It may be of some help as well. http://www.daphnestory.com/

It’s important to note, the more you learn about MMD the better, because there just isn’t enough knowledge out there yet and we’ve seen so many steered in the wrong direction, so knowledge is everything!

In our case, briefly put, they said at U of P, that my niece should NOT have surgery after her MM diagnosis. (Surgery is the ONLY treatment for MMD) She ended up having four devastating strokes and in a coma. We had the head of neurology/neurosurgeons on our case, yet still not enough experience with this disease. If it wasn’t for this website who advised us to get a second opinion with a MM expert, she wouldn’t be with us today. It’s rather simple to get a second opinion now. You simply mail copies of your films to the MM specialist and they call you after they read the films with their expert opinion. They deal with MM on a daily basis. That’s why we also always advise getting a second opinion. That’s so wise when dealing with a rare disease. It saves lives.

If you have any questions, please feel free to ask. No question is too small.

Please know you and your precious little one will be in my thoughts and prayers.

Mar

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lorabeas

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Re: Not sure about MM
Reply #2 - Oct 6^th, 2007 at 12:51pm

Thanks Mar,

I sent an e-mail to Daphne's mom.

I actually contacted her last year by phone after watching Daphne's piece on TV. She had some great info. It was right after Meadow starting having Infantile Spasms. I saw Daphne on TV, and cried my eyes out, because her story was all too familiar. (At the time Meadow's seizures were being misdiagnosed as atonic, complex partial).

After watching Daphne's story, and speaking to Jenny, I asked Meadow's neurologist about an MRA or coag studies. He simply blew me off, and told me they were unnecessary. He said that MM would show up on the MRI, that Meadow did not have it. Yet, for 6 months, he kept loading Meadow with more seizure meds, but never diagnosed her with IS. We took her for a second opinion (Thank Heavens), because I realized the path we were on was leading to more seizures (up to 50 - 60 a day). We went to St Louis Epilepsy Center, where they did a 24 video EEG. (Something that her other neuro never mentioned). In conclusion, she was having Infantile Spasms and not on the right treatment. Her primary physician referred us to another neuro within an hour of our home, that got her on Prednisolone. We weaned her completely off Trileptal, and down from 10 (25 mg) pills of Topamax a day, to 4. (Oct '06) One week later, Meadow's progress began to improve.

We went to the pediatric stroke team in search of any answers regarding the 2 strokes she had at 7 months old following brain surgery to repair a defect (hole) in the base of Meadow's skull. I only know of a hand full of other kids with Meadow's condition in the US (called basal encephalocele), and one of them has MM. His mom said that at Emory in Atlanta, they did a study about Optic Nerve Hypoplasia/Morning Glory in occurance with MM, which saved her son from suffering strokes. He's had 2 surgeries for MM.

Sorry. I feel like I am jumping from one topic to another.

Anyway, it has been hard to find a doctor that understands my daughters condition, because it is almost unheard of. I feel like we go from doctor to doctor with little to no advail. I initially she had an appt at Stanford last year when all the seizures occured, but St Louis got us in one month sooner. One month seemed like a lifetime when she was having ump-teen seizures a day, and like a floppy rag doll. (Either from the seizures, or the medication, or combo of both).

Meadow had a MRA in June this year (1st one). It was sent to CHOP, and our appt was Sept 24th. Is the MRA and Angio the same? I probably sound clueless: )

I am going to quote a few things from the summary we got at CHOP,

"History of bilateral frontal lobe ischemic stroke, left>>right, likely related to maldevelopment (vessel narrowing at the entrance to the skull) of the carotid arteries which are in close proximity to the region of her encephalocele).

Sorry so long,
I probably should have tried to join the forum long ago to learn more. But I have trusted the doctors along the way, and listened to what they said. However, we've had little explanation for her strokes up until now. I was hoping the appt would bring peace of mind, and it did, but it also brought on a whole new set of questions. (I can never think of the really good questions until I get home!)

Take care,
Lora

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Mar

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Re: Not sure about MM
Reply #3 - Oct 6^th, 2007 at 4:58pm

OMG Lora, my heart is breaking for you and your precious little Meadow. Just hearing a child is going through all that just tears me apart. How you actually deal with it is beyond my understanding. God love ya, and God bless ya for continuing to look for answers. It’s not your fault, we all look to the educated doctors for help and have no choice but believe and trust them. We did too, but then when you find that you’re dealing with a rare disease, you have to think they might not have the knowledge you thought. So you’re so right to search till you get the answers you need.

IMO, for what it’s worth, it sure sounds as though she may have MMD. I know I am not a doctor, so forgive me, but the statement; “vessel narrowing at the entrance to the skull of the carotid arteries” is why I think that. She certainly has a lot of other problems that I know absolutely nothing about, but I do think if it’s a possible MM diagnosis, it’s something that should be looked into further, and ASAP.

What really concerns me is, your daughter has had brain surgery and strokes, yet never an angiogram, and not an MRA until this year??? If that’s true, that’s unbelievable!! I can certainly understand now why no diagnosis yet. Perhaps your daughter has medical reasons that I’m not aware of, for not having those crucial tests in the investigation of her symptoms, but I gotta tell you, they are crucial tests for diagnosing MMD and answering many of your questions. I think any good physician would order an MRI, MRA, Angio or all three tests before making ANY diagnosis or decision. Oh, and BTW…MM does not always show up on a MRI. Yes, an experienced MM doctor or radiologist may suspect MM from MRI findings, but it doesn’t always show MMD.
The angiogram shows the road map of the arteries in the brain and THE diagnostic test that shows the actual moyamoya vessels. (That’s where they got the name, moyamoya, the “puff of smoke” appearance on the angio)
The MRI shows any strokes. The MRA examines the blood vessels of the brain.

The best life saving piece of advice I can give you, is to contact a MM specialist, ASAP. A MM expert would know the best direction for Meadow and at least give you the answers you need. Time is not on your side with MMD, because you are always at risk for a stroke, this is a progressive disease and gets worse over time.

In your research you will find that there are only two MM experts in the country that deal with MM on a daily basis. One is in Boston, Dr. Scott, he’s a pediatric MM specialist and Dr. Steinberg, at Stanford, and he’s both a pediatric/adult expert. Both experts have done hundreds of surgeries for MMD.

I’m sorry if all this gives you more questions, but being proactive and learning all you can about this disease may save her life, and we’re here to help in any way we can.

Mar

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The_Mom_of_J_and_K

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Re: Not sure about MM
Reply #4 - Oct 6^th, 2007 at 8:02pm

We are from the Lehigh Valley area. My daughter had her two EDAMS surgeries at, Penn State Milton S. Hershey Medical Center in Hershey, PA. Her neurosurgeon was Dr. Kevin C-ckroft (please put an o where the dash is, because the firewalls won't allow me to spell the prefix of his last name correctly). He was wonderful! He is compassionate and answers all of your questions. He has co-authored medical papers on Moyamoya with Dr. Steinberg, and consulted with Dr. Scott with pre-operative decisions. That being said; I had total faith in his ability and decision making. It has been almost two years and she has not had another TIA or stroke, and is doing well. It took over a year to diagnose Moyamoya because the doctors she saw did not believe anything was wrong with her, because she looked healthy. Unfortunately, the diagnosis of Moyamoya and a major stroke happened in a weeks time. If you don't feel you are being taken seriously go somewhere else, until you are satisfied that your questions are being answered. Good luck and God bless.

« Last Edit: Oct 6^th, 2007 at 8:18pm by The_Mom_of_J_and_K »

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STrantas

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Re: Not sure about MM
Reply #5 - Oct 8^th, 2007 at 9:45am

Hi Lora -

I, too, was diagnosed in Philly. Because I was 27 at the time, I went to H.U.P. rather than CHOP. I went to the Comprehensive Stroke Center and I actually had a slightly different experience than Mar's niece Mandy had. My neuro (Dr. Liebeskind, who is no longer there) told my my condition was not acute. However, he advised that if I were to go the route of surgery (which he told me I could treat my MMD with medication or surgery) that he advised going out of state. That being said, I believe what helped me the most was doing my own research. To be honest, I couldn't imagine NOT having the surgery- I already had 2 strokes and was having TIA's almost every day. I felt like a ticking time-bomb.

By arming myself with information - I found Dr. Scott in Boston. I also got second opinions and consulted various doctors to come to the conclusion that I definitely wanted the surgery (imagine that! Wanting surgery!).

Anyway, my advise to you is to take Meadow to different doctor's and get second, even third opinions. In my opinion, sounds like they are not giving you a definitive diagnosis and that would drive me crazy! Good luck! Please keep us posted.

-Shari

A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04

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lorabeas

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Re: Not sure about MM
Reply #6 - Oct 9^th, 2007 at 11:30pm

Just got the "final" report in the mail today from CHOP. This report will go to Meadow's primary doctor as well.

Brain MRA: suspect congenital narrowing of terminal internal carotid arteries bilaterally, decreased vascularization L hemisphere

Meadow was given a low risk for recurrent stroke, and neuro does not seem to think there is a link between the current seizures and the narrowed vessels.

Also, no further diagnostic studies were recommended. If she were to undergo brain MRI in the future time for any other reason, then it would be sensible to include brain MRA to characterize the status of her vascular findings.

Well, this still doesn't seem to help. I feel like I now somewhat understand the cause of her initial strokes...But, no further studies were recommended. So, maybe I am making a mountain out of a mole hill...But what happens with these "narrowed arteries"? Do they just remain narrow without any harm, or do we just watch them for now???? Will they improve with time?

Think I will take Mar's advice and request copies of scans and records to send to a MM specialist. I just feel like my daughter's primary physician is going to think I am nuts! Here the doctor in PA at CHOP recommends no further diagnostic testing and low risk for recurrent strokes...and I can't let it be.

By the way,
Thanks for the great replies!!
Lora

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Mar

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Re: Not sure about MM
Reply #7 - Oct 10^th, 2007 at 1:23am

OMG, no further diagnostic studies, that makes absolutely no sense!!! Here is a precious little girl with a history of strokes and seizures, who through all that, for the first time just now had her first MRA, and they suspect narrowing of her carotid arteries on BOTH sides of her brain, which means she is NOT getting the proper blood, oxygen and nutrients to the brain, yet they say no further testing??? I thought I was disappointed in the Philly medical field before, this is outrageous, IMO. How do they expect her to improve without proper blood flow to the brain? You are not making a mountain out of a molehill!!

I would like to know how on God’s green earth they could say “low risk for recurrent stroke” without ruling out MMD?? They didn’t even recommend a scan that would show the perfusion (flow) of blood through the brain, or a test to find the degree of blockage?? If they had done the proper tests a couple years ago, you would at least have those films to compare to now, to see if the narrowing has progressed at all. This is just all wrong Lora, believe me!!

It’s been my experience here, that the majority of people who have been successfully treated for MMD had to take an aggressive stance and push for any answers and treatment. So many were misdiagnosed for years because of the lack of knowledge in the medical field. This is a rare and progressive disease. It gets worse over time and waiting and doing nothing is dangerous. You are ALWAYS at risk for a stroke with MM. The progression is different from patient to patient, but left untreated, afflicted patients will continue to have strokes, which may be debilitating and eventually fatal.

If you research or look up MMD, here’s what it will say: Moyamoya disease is characterized by a progressive narrowing of the internal carotid arteries leading into the brain, and usually affects both sides of the brain. (bilateral) It is rare, but is being detected more frequently with recent advances in diagnostic imaging. (Testing your daughter has NOT had) Now look at the facts Lora. The definition of MMD practically says what your report says. Now knowing all this, you have to at least rule out MD before you can rest. With MRA results like that, no doctor on earth can give you a low risk of stroke, without further testing and ruling out a diagnosis of MMD, IMO.

Them’s my Smiley

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STrantas

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Re: Not sure about MM
Reply #8 - Oct 10^th, 2007 at 9:12am

Quote:

It’s been my experience here, that the majority of people who have been successfully treated for MMD had to take an aggressive stance and push for any answers and treatment.

Amen to that!

Lora - by reading your posts, I know you are going to get it done! Dr. Scott in Boston and Dr. Steinberg in California are excellent specialists....you go girl!

-Shari

A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04

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SweetEmily

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Re: Not sure about MM
Reply #9 - Oct 10^th, 2007 at 12:47pm

Please take Mar's advise. Emily's doctors had a wait and see if she gets better approach and she continued to get worse with more strokes, tia's, and bleeding in the brain. I had to insist they find her a surgeon with experience so they finally did. She hasn't had another stroke since her EDAS in 6/06. She is now fully functioning and loves being in Kindergarten this year.

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lorabeas

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Re: Not sure about MM
Reply #10 - Oct 11^th, 2007 at 7:40pm

Hi everyone!!

I contacted Dr. Steinberg's office today and got info needed to make an appointment.

Afterwards, I called and requested the info needed (scans, medical records, etc) from Meadow's doctors and the hospitals. Thankfully I have a home fax, because you have to sign a release for everything!! So hopefully when everything reaches them, I will hear something.

Some one asked my mom why Meadow has to see so many doctors, why she can't get all her medical care at one place. If they only knew. ; ) How do you deal with questions like these when dealing with a rare condition??

Take care everyone,
Lora

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Mar

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Re: Not sure about MM
Reply #11 - Oct 11^th, 2007 at 9:43pm

lorabeas wrote on Oct 11^th, 2007 at 7:40pm:

Some one asked my mom why Meadow has to see so many doctors, why she can't get all her medical care at one place. If they only knew. ; ) How do you deal with questions like these when dealing with a rare condition??

You already said it; Meadow sadly, has several RARE conditions that most doctors aren’t familiar enough with, and you, as a loving mother are still looking for one doctor that WILL have the answers that will hopefully help her to live the normal life she deserves.

My prayers are that you will, and there's no doctor on earth better than Dr. Steinberg. If anyone can help her, he will. You're contacting the best!

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kotipup

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Re: Not sure about MM
Reply #12 - Oct 12^th, 2007 at 12:35am

Hi, Lora. I sent you an email, but also wanted to submit a post here. I am so glad that you've sent studies to Dr. Steinberg. There are a lot of similarities between Meadow's history and Daphne's. You are absolutely right to take an aggressive approach. It isn't easy, I know. Please let us know what the outcome is. I sent you my phone number... if you need to talk, I am here.

Jenny

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lorabeas New Poster Offline I love YaBB 1G - SP1! Posts: 17 killen, USA, AL, Alabama	Re: Not sure about MM Reply #13 - Oct 24^th, 2007 at 7:46pm Got a call today from Stanford....Meadow has Moyamoya. I want to thank all of you who encouraged me to pursue further. I am still in a little shock right now, even though I suspected it, actually hearing it made my heart skip a beat. Thanks again, Lora
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Lore

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Re: Not sure about MM
Reply #14 - Oct 24^th, 2007 at 9:31pm

Hi Lora,

Kudos to you for taking care of business.

I have been reading the posts but didn't respond as I knew Mar was giving you excellent sound and good advice and she is very good at explaining everything. Very thorough and knowledgeable down to the last detail.

Jenny will be a lot of help to you as her Daphne closely resembles your Meadow with multiple conditions. Jenny and Daphne have been through a lot and Jenny has done a lot of research and is also very knowledgable.

I am relieved now that I know you are in contact with Stanford and Dr. Steinberg. Meadow is in the very best hands.

Only the very best to you and Meadow as you take this journey. Please know that we are here to support you so ask any questions or if you simply want to talk please don't hesitate to post.

Please keep us posted.

Hugs,

Lore

"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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lorabeas

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Re: Not sure about MM
Reply #15 - Nov 7^th, 2007 at 8:09pm

Meadow will need bilateral indirect bypass surgery. We have her scheduled to go to Lucille Packard Children's Hospital (Stanford) the first of January. She will begin testing on Jan 2cd. Her first surgery is scheduled Jan 8th.

My other 2 children are having their tonsils and adenoids removed next week (same day). Hopefully, they will feel ok in time to eat turkey and all the great southern fixins the following week!! Wish us luck and sanity to get through the holidays. I told my friend, I will need a big jug of egg nog!!

Thank you all for being so encouraging. I am going to read through some posts about the testing and the actual procedures as well.

Finally having answers about Meadow's strokes has brought me the greatest sense of peace.

Lora

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MMnewtUt Junior Poster Offline Moyamoya survivor! Posts: 62 Salt Lake, USA, usa, 129, 143, UT, Utah Gender:	Re: Not sure about MM Reply #16 - Nov 7^th, 2007 at 8:54pm Hey Lora, I have been very appreciative of your writings. I have MM and have two 6 year old boys. They were both born premature and before I knew I had MM. I am very scared that they could have MM as well. Best of luck for you and Meadow! Newt
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STrantas MM.com Benefactor Offline MoyaMoya Survivor Since 2003 Posts: 1154 Philadelphia, USA, usa, 490, 122, PA, Pennsylvania Gender:	Re: Not sure about MM Reply #17 - Nov 8^th, 2007 at 8:45am Hi Lora - I want to second Lore's Kudos! You did a fantastic job in getting the answers you needed! Having a difinitive diagnosis is so relieving. Have a wonderful Thanksgiving (we all have something to be thankful for, don't we!)...and don't forget that your moyamoya family is here to support you! -Shari
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