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Big Thank you to DJ and you all (Read 3694 times)
lostinkansas
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Big Thank you to DJ and you all
Oct 30th, 2013 at 3:43pm
 
I got a call from Dr. Steinberg's office today. After looking at my films he confirmed the diagnosis of moyamoya, but also added that though my neurologist interpreted that my left middle cerebral artery has only mild stenosis, Dr. Steinberg believes the film shows it has severe stenosis.  The right is already blocked.  So he advises double bypass, one on each side.  If it weren't for finding this site and the advice by one user I wouldn't have found Dr. Steinberg and sent him my films.  Thank you DJ for the site, and thank you to the user who responded to my call for advice.  Bless you.  I am now waiting on a call for the appointment for surgery.
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OneStoneTwoBirds
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Re: Big Thank you to DJ and you all
Reply #1 - Oct 31st, 2013 at 3:09pm
 
I'm sorry you have to deal with this disease but I'm glad that you got a really good diagnosis and will be having surgery.  Please remember that you are at risk of stroke for 6 months to a year after surgery (perhaps less so if you are having STA-MCA rather than EDAS) and that hydration is really important.  Good luck to you, I look forward to reading your post from "the other side" of the surgery.
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lostinkansas
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Re: Big Thank you to DJ and you all
Reply #2 - Nov 2nd, 2013 at 9:50am
 
Things have gone really fast, my first surgery is Nov 19th, second is Nov 26th, fly home Dec 4th.  Only problem now is they say I can't be do this alone.  But though i have good friends I have none that can take that amount of time and fly to California.  I'll figure something out. 

Still dealing with so much anger  Angry at my former neurologist. He left me a year ago with the words "it is a waste of your time and money to do further testing".  I had m.s. like symptoms for about 2 years before and though there was white matter damage it wasn't enough for a diagnosis.  Which is fine since it wasn't m.s.  I didn't seek out other help becaue I foolishly thought I'd let the symptoms progress until I finally got a diagnosis.  But fortunately I had a stroke, fortunate because finally he ordered an MR-A, and then a CT Angiogram.  He said it was probably moyamoya and it was beyond them and go to a clinic.  The first good thing he ever said.  But he also tried to take away all hope telling me it was progressive and that there was nothing that could be done and bypasses didn't work.  Fortunately, before he said any of this my gp had read the ct results to me and I had googled moyamoya.  So I knew ahead of time that bypasses do work.  What bothers me is, what about those people who don't google, who accept what he says... and why does he say this?  I think it is all malpractice.  I don't want to sue.  I just want him to not hurt people.  Why would anyone act this way? 

But I'm wasting energy on anger and bitterness.  I'll consider what to do about him later.  But this world amazes me, there are good and competent physicians, but I had not encountered this type of ignorance and apathy with a doctor.  The onus is on me for not being more aggressive with my own treatment.  And I am very very fortunate, the stroke could have been much worse, and I might not have found out about this condition.   So, again, back to thanks...  I am so very thankful. Grin
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OneStoneTwoBirds
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Re: Big Thank you to DJ and you all
Reply #3 - Nov 3rd, 2013 at 8:21pm
 
I understand not wanting to sue but to try to keep an incompetent doctor to not hurt anyone else. 

My husband had a stroke 4 weeks after his EDAS.  I do not believe it was related this surgery, and I have read 243 pages of detailed medical records.  He did not hydrate adequately and I think he also hit his incision site on a cabinet door.  He was not careful.  But his stroke led to seizures, and the local hospital he was taken to by ambulance let him stay in status epilepticus for 36 hours when even a simple Google search will reveal that intubation and sedation is warranted for refractory SE (I.e. > 2 hours).  By the time I got him to his top-notch neurology team the damage was done.  I am going to file a complaint with the state hospital licensing board about the local hospital.

You might want to do the same about your neuro.

Please do not be frightened by this story.  My husband did not take care of his post-op properly and he had another serious illness at the same time.  You will be fine, just follow your post-op instructions to the letter.  You are going to THE moyamoya expert in the entire US.
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« Last Edit: Nov 3rd, 2013 at 8:22pm by OneStoneTwoBirds »  
 
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