Hi Everyone
We haven't written for a while but check the site everyday.
As most of you probably know Joe had bilaterial surgery at the end of May. Everything went well for about a month but in the past 4 weeks he has had a really bad migraine once a week, also complaining about his hand feeling funny (pins and needles). This funny feeling doesn't last very long. We phoned his consultant in Great Ormond Street Hospital and she told us to give him 2 Sanomigrain Tablets before bed instead of the one that he has been taking for over a year. Our worry is that before surgery he only had about 2 migraines in a year.
We have to return the GOSH in November for his aniogram, to see if the surgery has worked but we just wondered if anyone else has had symptoms like this, because we thought that once he had surgery his problems would be over, instead they are getting worse.

Michele/Ian

Michele and Ian:

I had my surgeries when I was about 9 and even after I had them, I still had headaches and some tinglyness...

I wouldn't say I got "worse", though. You may want to ask if they can do the check up sooner than they originally planned. I think it is normal to still have some symptoms after surgery, but they should be less intense (much less) than before surgery. To this day, 14 years post-op, I still have "pins and needles" and then I usually get a headache. But, the important thing is that I am not having TIA's. I can use my hand/arm/leg/whatever... I think you should insist Joe's doc take his time to see what is going on. But, please don't dispair. If what Joe is going through is the same as me, he will be fine. I have never had a stroke and have lived a completely normal life.

:) I hope this helps.

Sara

Michele, Ian, and Sara -

Those 'pins and needles' feelings ARE TIAs.  At least that's what I've always thought and that's what I've reported back to my doc.  I've kept a journal - what I was doing when I had a TIA, how long it lasted, and where it was located.  That way, if there is a pattern, you can try to figure it out.

However, as Sara said, "eposides" should be much less intense, and much less frequent after surgery.  TIAs are a warning sign (my intenention is not to scare you).  Again, I agree with Sara that you should try to move that follow up much sooner.  Good luck with Joe - We're thinking about him!

-Shari

Michelle,

Remember, it takes time to grow the new vascular system the surgery started.  Depending on how far the progression of the MM before the surgery, its not that unusual to even have a stroke after surgery.  But that  he hasn't & it's been 2 months, I would say he's probably progressing very well.
As for the migraines, my son still gets them, 7 yrs post-stroke!  He usually wakes up with them, stays in bed 2-3 hrs and then is fine and continues his day.  He has been on Cyproheptadine (generic for Periactin, an antihistamine) for about 3 yrs for these migraines, but still gets aobut 4-6/yr.  Last year, I noticed they seemed to occur most often after a busy weekend - he was probably over-tired.  Other than that, he is quite a normal 11 yr old boy.
I do understand your worry and frustration. I think the suggestions in the previous notes are good ones: 1)start a journal to record the episodes, 2) make sure anyone who is a caregiver (sitter, DAD, relative, teacher, etc.)  know the warning signs of a stroke, 3) and keep your neurologist/neurosurgeon informed.
Best wishes to you & may God bless,

sue