I was at my neurologist office today for my sister's appointment and he asked me how I was doing, I mentioned that I would like to come see him again only because I have been having symptoms that I am concerned about..the TIA's I know are to be expected after surgery but my surgery (both sides) was a year and 7 months ago at Stanford and I am still having some plus now I am starting to have the black spots (floaters) in my eyes again...not all the time but occasionally, when I had my stroke that lead to my diagnoses it took my vision from my eye completely for a time...it feels somewhat that the symptoms I am having are similar to the one's I had before my stroke.....Anyway my neuro. asked me what is the protocol that Dr. Steinberg follows..I went for my six month check-up but what are we suppose to do after that??  I have to see my primary care doctor to get a referal to the neuro. which has to be ok'd by my insur...it all is a royal pain but I will do what is necessary if I need to be seen by the neuro. again.  I just did not know if there is something I should be doing, other than a aspirin a day, like a year follow-up?  Follow-up with a  MRI/MRA's?
Thanks for your help with this
Kathleen

Kath41 wrote on Oct 6^th, 2006 at 10:39pm:

Hi Kathleen,

I first want to say; if anyone is having a TIA (stroke like symptoms) they should get to a hospital immediately. That means the blood supply to the brain is temporarily interrupted, and it should be taken seriously and NOT expected. Tests can be taken and evaluated by the appropriate medical professionals involved.

I don’t know that there is a protocol or a specific set of guidelines established for a MM patient after surgery, other then their 6-month or yearly follow up, and naturally the results of the post-op check-up/tests would set the stage as to whether you would need further follow-up care by the neurosurgeon.

You never mentioned the results of your 6-month post-op tests/checkup. (?) If all your tests were normal at that time, perhaps the problems you’re having are due to another cause and your neurologist can help you address them. You’ve mentioned recently, trouble sleeping, being depressed, etc. There could be many other things at work here as well. I know many people here with MM who also have similar problems after their surgery and it has been said that some of their episodes are due to things like stress, lack of sleep, not staying properly hydrated, not eating a proper diet, or medications they’re taking, blood pressure etc… or another condition all together. Don’t hesitate to see your neurologist; perhaps you can get some answers.

Mar

I also saw Dr. Scott for my sugergies.  Here is a perfect example as to how every patient is different.  I had a 6 week follow up...no tests, but traveled to Boston from Philly so Dr. Scott could check my pulses, etc.  Then, I had a one year angio.  At Boston again...they put me under general anestesia.  I spiked a fever of 104.6 after that....totally freightened me...but they think I was exposed to something before I came to Boston (there was something going around my office).  Anyway, after the angio, Dr. Scott came to see me and was so please with my results that he said I didn't have to come back...only if I became symptomatic again.  I inquired as to if I needed yearly MRI's or something like that.  He said no - he usually only does that for the little ones!  (I was 28 when I had my surgeries).  I still email Dr. Scott with questions and on my yearly anniversaries...just to keep in touch.  But, so far, so good!

-Shari

Hi Kathleen,

As you know, Kevin had surgery at Stanford a year ago May. We went back to Stanford for his one year check up this past May. Kevin has not experienced any TIA's or anything else not even a headache.

Kevin said to tell you that TIA's 19 months after surgery is not expected and you are to seek immediate medical attention. He also said to tell you that every case is different and in your particular case, he believes what you are experiencing is totally separate from the surgery 19 months ago but may be MM related. He said to tell you to e-mail Dr. Steinberg and Teresa. Kevin is very concerned about you!

We were instructed to follow up with Stanford only if there were any problems. Again,  EVERY CASE IS DIFFERENT. If Kevin has difficulty, his doctor would contact Dr. Steinberg or the neuro team at Stanford without hesitation.

Kevin is very concerned about you and wants you to e-mail him. He keeps reiterating every case is different and you need to seek immediate medical attention. He said "NOW"!

I will tell you again that Kevin's local doctor does not hesitate to converse with Dr. Steinberg and Stanford if there is anything he feels he is unclear about or requires direction from a MM specialist. Dr. Steinberg can converse with the neuro in your state and discuss your particular symptoms/case with him or her.

Please do not wait for a referral to a neuro.. seek immediate medical attention and let us know what is going on with you. Kevin will not rest until he knows you have sought medical attention and especially with TIA's and the vision issue you described.

Keep us posted.

Hugs,

Lore and Kevin