I had my second surgery done in Stanford on August.  Just received the letter from Bob informing me that I need to schedule my up coming 6 months checkup in Feb/March.  I’m doing pretty good after the surgery except some discomfort and pain on scar and bone joint area.  No tingling, no weakness, no TIA at all. Actually, since only a small portion of my hair was shaved (I can pretty much cover it) and I recovered so well, not many people around me even noticed that I had a major brain surgery just seven days ago when I came back from Stanford.

However, due to the schedule of pre-op lab works and post-op recovery, I had to take off 4 weeks for the surgery. I was a consultant, my client and project didn’t allow me to leave that long. Plus, I wasn’t sure if I would be strong enough to go back to very intensive full time work immediately after the surgery, I had to quit the job to go Stanford.  I believe that everybody here understands the emotional and financial burden a MMD family had to carry while going through a surgery and losing income at the same time.  I felt very lucky to be able to get back on track so fast.  I was able to sign another contract and went back to work at full speed since October. I’m very glad that I could have some extra money to buy my son some new toys on Christmas.  But trust me, it’s very hard to find a well paid job under such economy before the holiday season, and I wish I could keep this job as long as I can.  Next February and March will be the busiest time for my projects.  I need to manage couple of critical production releases. I really don’t want to tell the current client that I have to leave for a week (may be even longer?).  I’m worried I might lose the job if I told them in advance.

My current neurologist is not an expert on MMD, but he’s nice enough to order any lab work for me without giving me too much of the insurance crap. So, instead of going to Stanford, how realistic to get the 6 months follow up done in Chicago area?  Beside Angiogram, most of the lab works only take 0.5 hour or no more than 2 hours, I think if I can go local, I can manage to get them done one by one at my own schedule without interferes my work.  The only item I didn’t hear anybody done in local is Neuropsychological test, but I don’t think it’s very important to me because I know my IQ and EQ didn’t impacted by the surgery.  I would also be able to save couple thousand dollars on airline ticket, hotel and car rentals in Stanford.  Don’t get me wrong, I really want to see Dr. Steinberg again. The only reason I am seeking for other option is the financial stress. 

What are the pros and cons if I chose to do the follow up check in Chicago? Did anybody who had surgery in Stanford also have the follow up done at local hospital? What else should I consider when making such decision?

Many thanks!

LuckyMe

Hi LuckyMe,

My brother had both surgeries at Stanford in 2005. I attempted local follow up testing and it involved much more than just lab work.

I experienced the unavailability of some tests locally due to Stanford having state-of-the-art equipment.

Another problem I encountered was the actual coordinance/view of some tests. Dr. Steinberg and Stanford know what to look for and how to achieve a certain view.

The local doctors here admit they are not familiar with MM and don't treat MM so I feel it is more of a henderance than anything else because I ultimately end up taking my brother to Stanford for follow up. At Stanford, I feel close to the science and the medicine.

I understand where you are coming from. We live 2,000 miles away and the flying all day is hard on my brother and tires me and the cost is substantial and the time away is a lot. I'm glad to hear you were able to get another consulting job.

My suggestion would be to follow up with Stanford intitially and especially since this is your first follow up visit since your second surgery. Also, you can contact Teresa to discuss getting tested locally and explain your current job responsibilities and situation.

This has been my experience. Again, it may be different depending on where you live and how well you are doing and you appear to be doing well. My brother was in bad shape and couldn't speak and had no abstract thinking ability. Aside from the local lack of knowledge about MM, my brother's medical condition played a big part in him going to Stanford for follow up. 

I'm glad to hear you are doing well and I hope you can achieve your follow up testing so that it works best for you and your situation.   

Lore



   

My daughter had her surgeries at Stanford Nov. 2008 and had all her 6 month followup testing done in Chicago. We spent 3 days there and all went well. Dr Steinberg ordered these tests.

Christie, would you mind tell me which hospital in Chicago was your daughter went for her 6 month check up?

My daughter has her testing done at UIC. She had the spect scan with diamox and one without diamox, and 2 different MRI's. We were there a few days and stayed in an apartment close by. They were so nice to work with and friendly. They couldn't do the angiogram because Dr Steinberg ordered the tests from CA. She had that one in Peoria where her local Neurologist is. We will followup with UIC again next time. We had a really good experience there.

Christie, thanks a lot for the info. Happy new year.

My pleasure! Happy New Year to you too.....

I had my surgery (EDAS) and follow up angio, spects and Xenon CTs at UIC as well. All went well. That was 9 yeas ago.
I was DX at Northwest Community and they did my first angio there. I was there through the emergency room when I had my stroke.
Hope all goes well for you. Happy New Year.

Russ

Sounds like you have a local hospital with experience.  I would have the two coordinate and go for it!!

Kimber