Moyamoya.com Forum

daniux

New Poster

Offline

diagnosed 2009

Posts: 5
Gender: female

SOS!
Sep 1^st, 2009 at 11:57am

Hi, I am shocked and confused: just yesterday I knew that I have MM decease. I'm 47. I am not good in medical terms and my English is a second, actually third language. I am schedulled for two more tests: CT perfusion and next - angiogram. The most thing that I worried about - the doctor offered to be a part of research studies. Yesterday I did some research in the internet, and found out that the only treatment of MM is surgery. Today I talked more about research with doctor's office and what they told me there is a 5 yrs program. They pick some people who will not be offered surgery and compare with those who had surgery. I had some black-outs before, dizzness and all the time I have in a have head a numbness. Did somebody sign-up for the studies? Any suggestions, please! Thank you very much.

Back to top

IP Logged

Click Here to visit the Moyamoya.com Facebook page!

Mar

Ex Member

Re: SOS!
Reply #1 - Sep 1^st, 2009 at 1:09pm

Hi daniux, Welcome to our MM family.

There is a wealth of information here, and although it is all overwhelming at first, please continue to read all you can. The more you learn about this rare disease the easier the answers will come for you if you arm yourself with knowledge. The facts in your case will speak for themselves.

You are correct in that surgery is the ONLY treatment for MMD. Without it, you are at risk for a stroke/hemorrhage or God forbid worse. Please note, by entering a research study, it is NOT an answer or treatment, but rather just what it says “research”. Collecting data waiting for a stroke, NOT preventing it.

This disease is a progressive disease that gets worse over time. The progression varies patient to patient, but the dangerous risks are always there. The black-outs, dizziness, and numbness are TIA’s and warnings of a pending stroke because the proper blood/oxygen is not getting to the brain. Surgery introduces NEW blood flow to the brain by either “direct” or “indirect” bypasses.

If I went to a doctor with those symptoms and they suggested I enter a research study, I couldn’t get to another doctor fast enough. It’s my opinion you get to a doctor with MM experience and knows the risks in your particular case.

You can always request copies of those tests you mentioned after getting them and send them to a MM specialist for a second opinion, one who deals with MM on a daily basis and then you would know whether your heading in the best direction for your case. It usually costs nothing but postage to get a second opinion and it’s very smart when dealing with a rare disease. There isn’t enough MM experience out there in the medical community and many are steered in the wrong direction. So please do your homework before making any decisions.

My thoughts and prayers are with you.

Mar

Back to top

IP Logged

daniux New Poster Offline diagnosed 2009 Posts: 5 Gender:	Re: SOS! Reply #2 - Sep 1^st, 2009 at 5:11pm Thank you for reply, Mar! I feel much better when I read your post. Yesterday and today I am reading about MM desease everything what I can get on the internet... and I am so happy as everyone else here, that I found this forum - it is really helpful.... Thanks, again!
Back to top	IP Logged

KTiller

Senior Poster

Offline

Posts: 355
Freeland, USA, usa, 51, 28, WA, Washington
Gender: female

Re: SOS!
Reply #3 - Sep 1^st, 2009 at 6:11pm

Hi Daniux,
Welcome to the Moyamoya family. I'm sorry you had to find us, but hope we can offer you some answers to your questions and some emotional support. Mar answered my questions when I first posted here asking about Moyamoya. She offers good advice.
Have you had an MRI/MRA and did that show any signs of stroke? If my doctor had asked me to participate in a research study that involved withholding surgical treatment when I was already experiencing problems and prior to having the results of the angiogram that shows the extent of the blockage due to the disease, I'd find myself another doctor.
I'm curious though to know what research study he was referring to. The only one I'm familiar with is being done at Washington University in St. Louis, Missouri. Is it that one? The end-point for that study is stroke. Personally, I would not take part in it.
When you have all of your test results, you can send them to Dr. Gary K. Steinberg's Moyamoya Clinic at Stanford Medical Center in California. I got three opinions before choosing to have surgeries for my Moyamoya at Stanford in Fall 2007.
Today I am well, working more than full-time and training to walk in a marathon in a few months. I know that not everyone is as lucky as I have been, but your chances are greatly improved if you place your care in the hands of people who know this disease well.
Best wishes,
Kim

Back to top

IP Logged

Twyla New Poster Offline I Love MM.com! Posts: 19	Re: SOS! Reply #4 - Sep 2^nd, 2009 at 2:53pm Hello Daniux, Welcome. I had a similar experience as yourself. Find a doctor that has dealt with MMD. What one doctor told me to do could have killed me. Go for an experieced doc. Just a word of encouragement, I have been there, but I am still here, and you can be too!
Back to top	IP Logged

daniux

New Poster

Offline

diagnosed 2009

Posts: 5
Gender: female

Re: SOS!
Reply #5 - Sep 4^th, 2009 at 9:38am

Hi Kim and Twyla, thank you for replies.
The place where they do research studies is Washington University in St. Louis, Missouri. I decided do not participate. Right now I am waiting to hear from Dr. Steinberg. Before yesterday I emailed ftp file and ups'ed my MRI and CT CD's, so I am waiting to hear from him. I communikated with Teresa - she seemed very nice. Hopefully I will hear from them until the end of day today, otherwise I will have to wait until Tuesday.
My MRI didn't show any strokes, thanks GOD! But I don't feel very good - I had several black-outs and dizzness, and right now something is happenning in my head- it seems that I had several shots of vodka Cheesy

Back to top

IP Logged

Becky

Old-Time Poster

Offline

Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: SOS!
Reply #6 - Sep 4^th, 2009 at 12:49pm

daniux,
I am happy to hear you decided to not do the Research and that you are looking into seeing if Dr.Stineberg can help you. As for the "it seems that I had several shots of vodka " thing I would sugest resting and not doing anything stressful this weekend. Take naps, and Keep hydrated even if you have to miss out of some of the fun stuff. You have to lession to your body and it sound like you need some relaxation and rest.
Hope tis helps,
Becky

Back to top

What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic

IP Logged

daniux

New Poster

Offline

diagnosed 2009

Posts: 5
Gender: female

Re: SOS!
Reply #7 - Sep 16^th, 2009 at 3:06pm

I just got an answer from dr. Steinberg. He didn't say that I have MM for sure. He said, that "this study shows possible bilateral M1 middle cerebral artery occlusion with possible moyamoya vessels" and he recommends "a full workup including an angiogram, MRI head scan, and blood flow studies". Dr. Steinberg said, that he would be happy to evaluate me there at Standorf.
So, it is possible that I don't have it? Any suggestions where to do those tests?

Back to top

IP Logged

disneygirl

Junior Poster

Offline

Blessed MM Survivor

Posts: 59
Danville, Illinois
Gender: female

Re: SOS!
Reply #8 - Sep 16^th, 2009 at 6:42pm

Hi Daniux,

I am so sorry to hear of your dilema but hope to be able to answer a few of your questions. The only way to diagnos moyamoya 100% is with an angiogram. The other studies are then used to determine the extent of impaired blood flow there is and other quantitative data. If you have not had an angiogram yet then you need to get one. If the MRI/MRA suggests moyamoya than most likely you do have it, but the angiogram is needed to comfirm this. I do not know what part of the country you live in but most larger city hospitals have the facilities to do the angiogram and perfusion studies. Mayo clinic in Florida, Cleveland Clinic in Ohio, University hospital in Indianapolis, UIC in Chicago, Washington University in St. Louis, Mayo clinic in Rochester Mi., University of Cinncinatti in Ohio etc.....
Once Dr. Steinberg is able to see the details in the angiogram and perfusion studies he can make a more exact diagnosis and give you treatment options. You do not want to have to wait too long to have this done. If you have not had a stroke yet then you will want to get treatment as soon as possible to prevent a stroke. I have a list of medical facilities that do the testing but do not know where you live or what you are close to.
Previously you mentioned the research study being done at Washington University in St. Louis. All the patients there are given the option to participate in the study. Just becasue you go there does not mean that you will not get to have surgery or that you will have to participate in the study. They do not with hold surgery from anyone that wants surgery. I had my bypass surgery done at Stanford with Dr. Steinberg but will be having surgery next week at Washington University in St. Louis with Dr. Zipfel. He is a very nice doctor is close personal friends with Dr. Steinberg. I have had some problems with infection and can not afford to go back to California at this time and I only live 3-4 hours from St. Louis. He has spoken with Dr. Steinberg and I had my first angiogram since my initial surgery on Monday of this week. My graft looks great so I will have surgery on Monday to help get rid of the infection.
You can also go to Stanford to have the testing done and then see Dr. Steinberg. Most likely if you need surgery then he will schedule the surgery while you are there. He will not make you leave and then come back later for surgery. He is really good about working with his patients schedules.
I hope you the best and will be praying for you. If you need any other information just let us know.

Good Luck!!!!

Tracie

Back to top

First stroke in 1974
Diagnosis in March 2009
Surgeries in April 2009

IP Logged

Click Here to visit the Moyamoya.com Facebook page!

daniux

New Poster

Offline

diagnosed 2009

Posts: 5
Gender: female

Re: SOS!
Reply #9 - Mar 17^th, 2010 at 3:58pm

Update

A long story short... I was diagnosed with MM. I had both surgeries with Dr. Steinberg. I am very happy and thankful all of you who helped me to make this decision (to go to Stanford for surgeries).
Both surgeries went very well and I recovered very fast. I come back to work after 5 weeks from the second surgery. I am going back for tests next month.

Back to top

IP Logged

KTiller Senior Poster Offline Posts: 355 Freeland, USA, usa, 51, 28, WA, Washington Gender:	Re: SOS! Reply #10 - Mar 17^th, 2010 at 9:31pm Wow, Daniux - you made my day! I'm so happy to hear that you were able to get the help you needed and that you are recovering so very well. Thanks for sharing your good news. Kim
Back to top	IP Logged

	Welcome, Guest. Please Login or Register
	NEW search box below... Search Moyamoya.com with Google!