Hey everyone,
I have a few questions that I am hoping people can answer for me.  I had STA-MCA bypass on the right side done at Stanford by Dr. Steinberg in April.  It has been almost 4 months since surgery.  I did have a second surgery while I was there but it was to remove a benign tumor that was growing.  Dr. Steinberg felt that it needed to come out.  The doctors where I live were going to do radiation to the tumor.  Dr. Steinberg said ablsoutly not, you never ever do radiation on a moyamoya brain.  As many of us have encountered through our journey's with moyamoya, there are very few people that know about the disease and even fewer doctors that know how to treat it. 
I returned to work on June 1st, 6 weeks after the second surgery. 
I have been back to work 2 months now.  I am exhausted all the time.  I can hardly make it through a day without laying down to rest or even nap for an hour.  I am dizzy all the time and have had some slight numbness in my left hand off and on for the past 4 weeks.  I went to see my neurologist today and he does not think that the extreme fatigue, dizzyness or numbness has anything to do with the moyamoya.  I am his first and only moyamoya patient.  He wants to do expensive tests to test me for a sleep disorder like sleep apnea and thinks the numbness is maybe carpal tunnel syndrome.  I feel like I have taken several steps backwards with my care.  It took years, 4 strokes, seizures, horrible migraine headaches, and partical paralysis on my leftside before I was finally diagnosed correctly.  Since I only have unilateral moyamoya and I know that it can progress to the other side I thought my symptoms warrented a trip to see the neurologist.  I also thought that maybe I just need to give my body more time to heal from the surgeries, maybe I went back to work full time too quickly, but he said no. 

Has anyone been so tired that they can't even concentrate?
Does anyone know of a neurologist that is familar with moyamoya in Illinois? 
Does anyone else think that these symptoms are related more to moyamoya or am I just being paranoid?
I just want to feel better and be able to work and enjoy my family.  Currently I work 40+ (usually 50) hours a week.  I go to work, I come home rest eat dinner go to bed and get up to do it again. I don't have the energy to do anything else and if I try to push myself then I have weakness and numbness on my left side.  The dizzyness is almost unbearable most days.  There are times that I call my husband or daughter to pick me up at work, I am too dizzy to drive home. 
I have found that everyone on this webpage has more knowledge and understanding of this horrible disease than most doctors. 
I will welcome any advice or recommendations. 
Thanks for your help.  It is so nice to know that we all have a place to go for support and answers when we need them.

Tracie

Hi Tracie,

I’m so sorry to hear you’re having problems after your surgery. Working 50 hours a week is hard enough without recouping from brain surgery and fighting a rare disease. God love ya.

I certainly don’t know if your symptoms are MM related or not, but I would definitely agree that your symptoms warranted a visit to your neuro. With unilateral MM and those symptoms, I don’t think that’s being paranoid; I think you’re just being smart.

I’ve met and talked with so many members over the years who said it takes a long time to be able to get back in the swing of things after surgery, and they said when they tried to return to work or school too soon, the stress and long hours always brought on different episodes and TIA’s. They had to slow down and give it time. So perhaps your body does need more time to heal. Is there any way you can take some time off from work and completely rest, eat right, sleep right etc? No one knows your body better than you do, with more rest over time hopefully then you yourself would be able to tell if your symptoms lessen or continued, and maybe then you’d know whether to pursue it further at this time.

As far as the progression goes… we just don’t know enough about that part of it. (Especially without having recent testing) So you have to be your own advocate there, knowing you have a brain disease that at any time can begin to steal your oxygen and nutrients and cause those symptoms. Who’s to say at what stage MM could affect you on the other side? So it should always be taken seriously and dealt with by a doctor who really knows the disease, IMO.

Please don’t get me wrong—I’m not saying it’s progressing; I’m simply saying it’s smart to want some answers with your symptoms, and to get to someone who can give you the right answers. Also, back to full time work in six weeks even after a lesser surgery may be too soon, let alone after major brain surgery and the nightmare your body has been through. I’m a firm believer in listening to your body. It talks to you. Please listen to it.

If anyone on earth would know the most about any doctors familiar with MM in Illinois, I think Tracey (tuknits) and LisaH would know more about it than anyone.

I hope you get the answers you need, and that you’re soon blessed with time with your family and enjoying life again. I wish I could be of more help.

My thoughts and prayers are with you.

Mar

Hi Tracie,
Yikes, you have got to slow down a little and let your body recover! I tried to go back to work too soon after my surgeries and found I needed more recovery time. I think I was trying to prove to myself that I was really and truly OK again. I'm lucky in that my son was able to take on my part of the business so that I could take the time I needed to heal. When I did start back again full time, I would call him when I felt tired and he would finish out the day for me. He's an amazingly good son. It was at least 8 weeks before I tried to swim again - I did only two laps and over time gradually added more. Don't rush it - recovery takes time and lots of patience. It felt to me like I was taking two steps forward and one back for many, many months. 10 months out, I tried to move the business forward again - I hit the wall. Making plans and executing them was overwhelming. I slowed down again, sought the help of a psychologist, took up a bit of meditation and several months later was back on track. It's been nearly 21 months now (I just counted), if I get overtired or stressed my voice sounds flat and strained and the fingers of my left hand go slightly numb (residual damage from strokes on right side of brain) - it's a wake up call for me rest - and I do.

You're instincts are right on, Tracie - you shouldn't ignore the dizziness and numbness you've been feeling. I think you should run this by Stanford. Send an email and send it with high priority. You might want to follow up with a phone call. Also ask that they recommend a neurologist with MM experience in your area. They really should have a list of neurologists in different parts of the country, a number of us have asked for one.

Take good care of yourself - we need you healthy and strong to get that non profit in order. But you know there'll be plenty of time for that after you've fully recovered from your surgeries. It's contrary to a woman's nature, but you have to put yourself first for the time being.

Best wishes to you,
Kim