Hi Cynthia


Welcome aboard to the MM family!

It looks like you have taken the right procedures.
Talking Dr Steinberg is the first step.

their is a lot of info here,and people to help.

Keep us up to date!

Welcome again

Kevin

Bravo, is all I can say. I battled for 2months to get Robert to Dr. Steinberg.  I do not regret it, In my opinion and after all my self education on this site and others. Dr. Steinberg should reveiw all films and upon his death be nominated for sainthood. I may be a little bias now.

Best of luck and lots of Prayers

Mike

Cynthia,
Glad to hear that you got help from Dr. Steinberg's team.  I am sorry that you had to find him.  Have to say that I agree with Mike about the sainthood.  He is a wonderful, brilliant and kind man.  He and his team are the best so you are in good hands.

When in June will you be there?  I will be there from June 10th-17th for some follow-up.  If you are going to be there during that time, if it's alright with you, I'll stop by to see how you are doing and offer a little moral support.
Take Care-
Tracey

Cynthia~

Welcome to the Board --- to a fantastic group of supporters.

I was 49 when I first stroked. After I recoverd I went to Stanford to determine why I'd stroked. Moyamoya. Had surgery quickly.

I'm glad you're getting the help and information you need.

When I was diagnosed (about 8 years ago) there was very little known about mm and there was no support system like this one.

We all help eachother and now you're part of it tooooo!

Love,
Linda A (LA)

Cynthia....thank you for the update...and I am soooo glad to hear it is all behind you now. Hopefully, each month will be a better marker than the last.

I found the biggest post surgery effect was I was able to stay alert much longer .... without those "waves of fatigue" coming at any time of day. The other benefit was less "foggy brain" moments LOL! Hmmm....and the dizzyness is much less now....not gone....but certainly, much less!

You hang in there....and keep us posted.

And

Islandentity

so glad to see you on this post! I often think of Robert.....and I am always happy to see he is doing well. Please give him my best.....such a brave little guy!

Smiles to all....Diane

I wondered if readers don't mind my asking what post surgery life is like.... Here are my questions:

1)  Did you have any relapse of scary stroke-like symptoms since the surgery?   

2)  Does your annual check-ups involve an angio? Do you fly to Stanford or place of surgery for the check-ups?

3)  Did your post surgery life change ... type of work or hobbies that you perform?

4)  Were you financially impacted - can't or did not want to resume the same type of work compared to pre-surgery?

I'm curious as to what to do with different job options.  Two weeks ago I was still tired with occasional headaches so I thought I'd have to change my profession (I used to work as a computer analyst - fulltime).  Now I'm not sure, but I'm thinking I don't want to over do myself if I return to the work force.  A lot of times in the computer field there are projects that run over 40 hours week.  I've had enough of that. So perhaps this is a good time to re-think how I want to spend my time.

Thanks for any information you care to share. 

-Cynthia

Hi Cynthia,

I thought I would respond to some of your questions, since I work in computers, just as you have. 

A brief history:  I had a stroke in January 2005.  Soon after, was diagnosed with Moyamoya on both sides.  I had my surgeries with Dr. Steinberg in May 2005. 

I had my stroke while driving home for work.  My boss thought something happened that day to trigger it, but in reality, there were many symptoms before then where I didn’t think to go to a doctor.  (He and I joked that it was actually the most stress free day I had in a year and that must have caused it!).  While I fully recovered, I went back to work way too early, only 2 weeks after I got out of the hospital.  As you probably know, our line of work requires lots of overtime and can often be a stressful environment.  Stressful is an understatement for the looney bin that I have worked in for the last 3.5+ years (You feelin’ me Lore!?!?!).  I had a co-worker who made my life hell.  I had co-workers who “pretended to care about my health”.  I thought there was support, but in hindsight, the reality was there wasn’t any, with the exception of flexible time from my boss. 

There were positives – I had/have good health insurance.  I can take off as needed, to deal with tiredness and headaches (that don’t happen too often these days, but when they do, my boss understands that).  I have flexibility too, but all of this comes at a price.  It just means I work more, because I can work any time. 

I’m not as sharp as I used to be.  Focus and concentration require a lot from me.  After my surgeries, I went on disability for 10 weeks.  Upon returning to work, I had the benefit of my mom helping me out for a while.  But still, I had to retrain my mind to put up with the pressure.  In the end, the demands were the same, but _I_ was different.  And that’s very hard for others to understand because it’s what I call the ‘invisible’ problem.  They don’t see me in crutches, or slurring my speech, or anything physical.  I live on my own, I drive on my own, so they think nothing is different. 

So, how did I handle it?  I think I made the mistake of trying to prove myself…to really no one but myself…that I was the same as before.  So I took on workload after workload, and in the end, I was working seven days a week to keep up, and doing so by working from home.  I worked last year on Christmas Day and New Year’s Day with a house full of people!!

So, I’m trying to make it easier.  I am still in the process of reconsidering this type of role.  I had a discussion with my boss two months ago.  He tried to put more work on me and we almost had it out because I said if I take it on, I’d be back to working seven days a week.  And honestly, I’d say it’s fair if everyone else was working that way.  But others are taking similar, if not less, workloads and working five days a week.  So I took issue with his proposal.  I said he had a choice – I go on disability, quit, or he keeps my workload to a bearable size.  Of course, he chose the latter because he needs me to do the work. 

In the end, it comes down to environment.  I wish I had a more supportive environment.  I think a change is inevitable for me though, if not for anything but to keep my sanity.  Russ makes a good point – sometimes taking a more simplified position is worth it.  I make good pay, but I also rely only on myself.  Considering a less taxing job with less pay may be a good idea. 

Regarding post surgery, I’ve had a few TIAs…but they are few and far between and for very short periods of time.  As far as hobbies, when I’m not working, I try to stay out of the sun, drink lots of water, and I’m trying to get back in shape but it’s been slow going.  I’ve heard it depends on the type of shape you are in before surgery on how you handle that after surgery.  I don’t know if that’s true or not, but I’ve seen evidence of that with a few people, including myself.  Also, I only had one six month follow up with Dr. Steinberg after surgery (all thumbs up) and I have annual check ups with my local neuro (no formal tests though).  Dr. Steinberg said to only contact them if I have any major problems, and keep them updated on my progress.  I occasionally send emails asking for advice (i.e. – NO SKYDIVING  ;). 

I hope this helps.  Whatever you do, you know yourself best.  Make choices for yourself that will make you feel most comfortable, without overdoing it. 

My thoughts are with you as you progress with your recovery. 

Hugs,
Trina

Hi Cynthia,

Glad to hear you are home and both surgeries are behind you.

My brother Kevin (Cubbie) had two STA-MCA surgeries at Stanford by Dr. Steinberg in May 2005. We met Trina and her family at Stanford as Trina and Kevin had their surgeries one day apart.

It is difficult to answer your questions simply because each case is so different although there are common threads in terms of symptoms, experiences and recovery.  I think it is important to know the person's physical state prior to surgery as well as many other factors such as meds, any other diseases and just individual general makeup.  Some people pop back and others take longer.  Again, it depends on so many different factors.  Others may have a co-morbid condition or other physical problems or other diseases that interfer with recovery for each individual.

Kevin owned his own residential and commercial garage door company for 15 years and is also a private instrument rated pilot.  Although flying is Kevin's passion, he will never fly a plane again. As a result of the strokes, "the bridge is out" and he will never own his own business again nor does he have the stamina or wear with all to do the physical work.  Confussion and inability to concentrate and incredible high anxiety all play a part in being able to get through a day.  Again, it is different for everyone.

Kevin had two strokes, hemorraged from the brain to the point he had no abstract thinking ability and could not speak and didn't know who I was or anyone else for that matter. He also has a dissected right upper internal carotid artery and was misdiagnosed for four years. By the time we found Dr. Steinberg and I got him to Stanford, he was in pretty bad shape.  The good news is Kevin is alive today by the grace of God and the hands of a skilled surgeon, Dr. Steinberg.  Kevin today can speak, has regained most analytical and abstract thinking ability.  He is doing very well and is one lucky guy thanks to Dr. Steinberg and the Stanford MM staff.

Kevin did return to Stanford for his one year checkup which involved an angio.  Dr. Steinberg was amazed at Kevin's progress.  I thought Dr. Steinberg would be pleased but he said he was amazed.  I think this speaks volumes to Kevin's recovery and to the skill and knowledge of Dr. Steinberg and the other MM staff.

Kevin has had some very minor post surgery symptoms that either corrected on their own or were corrected by minor intervention such as meds but nothing invasive.  Kevin had difficulty sleeping but we finally got that under control. Like you, Kevin takes about half the meds he did before his surgeries.

Kevin's life is forever changed both financially and in his ability to do certain things.  Again, remember Kevin was in pretty bad shape.  As you can see from the other posts, some are able to continue in their current position and pace while others cut back and like in Kevin's case, he will never work in the capacity he did before he had strokes, has been significantly financially impacted and is fortunate to be alive. Kevin is considered an extreme exception meaning he is the exception rather than the rule.  

Keep a positive outlook, relax and recover and I'm sure you will do well. Trina said it well and that is to know your limits and be mindful of them.  Also, keep in mind you have had the best treatment available to a MM patient in the U.S.A. by the leading MM expert in the U.S.A.

Take care of yourself and keep us posted on your recovery.

Hugs,

Lore      

Hi Cynthia,
Well in answer to your question, my life was great before my surgeries in 2001 but it is even better now.
I experienced a few minor problems like headaches after surgeries and occasionally get the odd headache now, but no longer need to see my specialists.
I had MRI's every 6 months for the first couple of years but now don't need to, my neurosurgeon took me off aspirin (I am one of the few on the board who doesn't need to take this).
Initially did have memory problems but that has resolved.
As far as work goes, I have been working from home for at least 11 years in my own business. I design wedding invitations, do graphic art work and have just recently started up a sign writing business. I can do it all at my pace, and  manage to handle stress and pressure with little problem, don't suffer fatigue at all. I also run my husband's business, booking in jobs, following up quotes, organising.
I have a rigorous gym routine going to the gym 2 hours on average every day, spinning classes, weight training, step, personal training etc... at the moment working my way through an advanced pole dancing course!!! (have my own pole in our family room and practice every day!). I am aiming at teaching pole dancing for excercise, and also plan to do my certificate to become a personal trainer myself.

I also had a baby after my surgeries and am in the best shape physically and mentally than I ever have been, but I acknowledge that I am not the norm with this - I am extremely lucky how I came through this, but just wanted to point out that life can be good. A lot depends on attitude and determination as well. Oh and I just turned 44 last month! Everyone is different - surgery affects many people in many different ways but I have a fantastic husband who is my rock and a good support network with friends and family. I have developed an absolute zest for life as I am only too aware how fragile life can be and I don't want to miss a minute!
Tony and I go out motorcycling on the occasional weekend, and you just have to be aware of your limits - if it doesn't feel right to you - don't do it. You don't need to push yourself to any degree where you are not 100% comfortable with what you are doing and obviously as Trina says you may have to limit a few things like skydiving and bungee jumping. My neurosurgeon always told me that there was only a limitation to what I could do if it caused problems, so I listen to my body and use common sense.
Best wishes Moira

Glad to see you back here with us Cynthia! Sorry to hear about the rashes troubling you.

I don't think the rashes would have any direct relation to your Moyamoya with the exception of "stress" related onset.

You would probably be best served by seeing a dermatologist even if they are stress related...as they are the best trained to help in those issues.

After MM surgery, many of us tune into our bodies more and sometimes even overfocus as we really went through a traumatic health event. Try to look at the big picture and only mark your progress month to month. Filter out health issues that are not moyamoya related and deal with them accordingly. (not one size fits all) Your Neurologist isn't the one to address your cronic ulcer pain etc... At the same token....don't trivialize issues that could be VERY important ie: dizzyness, headaches etc... You must be you own best advocate for your future health and your peace of mind.

You are going to be better than ever..... it just takes a little healing time.

smiles and hugs.....Diane : )

Hello again-

The rash outbreak on my skin is due to aspirin sensitivity.  I suffered for five months after surgery from uticaria or hives, or angioedema - swelling of the lips, eyes, hands or feet.  I experienced all of these symptoms about 20 days out of each month.  The hives were getting larger and larger - up to 6 - 8 " in diameter and were itchy and sometimes painful.  My internist referred me to an allergist that suspected the aspirin.  I never thought of it because I had been on aspirin for a month prior to my surgeries without any problem.  The hives started after I took an angiogram - it turns out that I am also sensitive to the contrast dye used in angios or CT scans and they also cause me to have large hives. 

It has been a long time of experimentation with allergy tests and anti-histamine combinations, but the best results have come after I have been off of the aspirin entirely.  I emailed Dr. Steinberg's office and at first they had me lower the dose of aspirin from 325 mg to 81 mg, which helped some, but now they have me switched off of the aspirin entirely.  I am now taking plavix - 75 mg. daily.  I believe this is going to work, since it has been three weeks since I have had a rash for no reason. 

Working with my allergist, we are going to try to taper off the anti-histamines that I take daily to see if I can remain rash free!

Will keep you posted. 

Cynthia