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

Hi there Kathleen,

Well I don't know what the protocol is in the US but here in Australia I had to have an MRA /MRI every 6 months and an Angio once a year until BOTH my neurologist and brain surgeon were happy that everything was fine. I had my surgeries in June 2001 and November 2001 and now no longer need to see anyone, BUT they have both stressed that if I have ANY PROBLEMS whatsoever that I come straight back to them IMMEDIATELY!! I have my neurosurgeon's private cell no, and he has stressed that he is available at any time - I have actually called him for a couple of problems since and one time he was in surgery and the orderly was relaying the question to him and talking back to me. I can also get my neurologist through his pager at any time as well.

It seems to me you should have been closely followed up for at least a year, and having TIA's after surgery is NOT to be expected. If I was experiencing anything of what you are experiencing I would be jumping up and down to demand to be looked at.

It gives me total piece of mind to know that I can get help if I need it immediately and that the professionals involved in my care are concerned enough about me to chase up the slightest problem that I may have. You need to find someone who will monitor your progress and be there for you to sort out any problems that arise.
YOU"VE GOT TO BE PROACTIVE -it's your health and you need to take charge of it!!
Good luck
Moira

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

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??

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

Hi, Kathleen!  [smiley=wave.gif]

While we see Dr. Scott and not Dr. Steinberg, I can tell you what our protocol has been.  My girls both had MRI's at 6 and 12 months, and every 12 months thereafter.  For some patients he does angios instead of MRI's, but I think because Cassie had had so many complications following her first surgery, he decided to go with the non invasive procedure, and I was just as happy about it!!  They have their MRI"s in the winter, because that's when it coincides with the anniversary of their surgeries - but we don't actually see him.  We go in the summer for their annual check ups in the summer so that I don't have to take them out of school another time.  SO even though he sees them only once a year, he checks on their brains twice a year.

Our neurologist sees Cassie every 3 mos. mostly because she was on some meds to try and lessen the ADHD symptoms following her stroke - and we can't seem to find any that don't make her BP and pulse go sky high!  (Presently we've stopped all of those meds, I'm not going to risk my daughters heart to make things easier for the school!!.......But that's a whole different issue!! [smiley=yikes.gif]) For Kate, since she's not taking any meds for the MM other than aspirin, the neuro sees her every 6 mos.

I hope that helps.  But I agree with the others, if my girls were having the symptoms you're having now, I'd be sitting in the neuros office, not leaving until he saw them.

Good luck!  We'll be thinking of you!

Love, Kristen (and the girls say hello, too! [smiley=hug.gif] [smiley=hiya.gif]

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

Thank you all for answering my questions..I realize that every doctor is different so I do appreciate what you all had to say..THANKS!! [smiley=hug.gif] My sister is now on me about making an appointment with the neuro so I think I will just to be safe!!  Thank you all again

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

Hi Lore,
Tell Kevin I have talked with my neuro and I have the ball rolling on getting in to see him...you gotta love insurance!! ::)  Anyway I will let you know, tell him not to worry to much, I do appreciate the concern!