Well, we had a first today.  Ironically, I was in Dr. Steinberg's office with my mother.  She had a consult with him to look into treatment for her AVMs.  During the visit, I received one of the phone calls that we never want to get.

The receptionist came in and pulled me out of the exam room.  She informed me that Tara had been taken by ambulance from school to another hospital.  Tara had had a dizzy spell, accompanied by sweating and numbness in one hand.  Fortunately, school acted very quickly, summoning immediate medical help.  The receptionist had my husband on the phone to tell me about it.

Tara was given an MRI, and it appears that there is no sign of hemorrhaging - thank God!  They've chalked it up to a TIA, but it was very scary as she hasn't had any since before her surgeries in June.

As always, I have to make myself look at the bright side of things.  If I couldn't be with my daughter when something like this happened, what better place was there to be than with Dr. Steinberg and Jolie?  They were tremendously supportive, and of course, Dr. S will look at the MRI and give his input.  That will make us all feel better, but darn it!  This disease is so scary.  Up one minute, down the next, etc.

Many, many prayers for all of us who are dealing with MM.  Maybe one day it won't be so frightening.  Thanks for listening . . . . .

Jill

Jill,

It's weird, but Tyler had his surgeries June 2003 and had his first TIA August 2003. He had a total of 5 by the end of September 2003 and none since. I wonder if there is something about the healing process about 2 months after surgery that causes this? Or could it just be a fluke?

Rena

I guess it would be too dangerous, that they think it would only get worse.
Or they just can't help him because  theer is already so much damage done, that surgery won;'t help.

Terri,
        You can go back and read past posts of many people that have come to this site because they have been told they cannot have surgery and after we told them to seek out a MM speacialist they have gotten surgery and it has saved there lives. David is a more recent one. They told us to wait a year after Mandy had 4 major strokes only to send the films to Dr. Steinberg and she had surgery in a month after her brain cooled down so to speak from the strokes. You have to have a MM spedcialist who know this very complex disease, it is very progressive and to be honest and not to harsh I'm surprised your brother is still alive. Call Dr. Steinberg at Stanford or DR. Scott in Boston and you can just send his films there and they will usually call within 24 to 48 hrs. with they're opinion. Almost never can a MM patient NOT be operated on, in very very rare cases. PLEASE, PLEASE, pursue this, it will be so worth it and if he can have the surgery it will absolutely change his life. Any questions please ask thats what we're here for. Good Luck!
                        Nancy ;

Lillian,

Cara's first neurosurgeon in Phx who did about (20 mm cases) told us it would do more harm than good at the moment ..if Cara was his daughter he would not do anything.  Just wait as she just had mild "spells" rather than "strokes".   They didn't even think the SPECT exam was needed was what Dr. Meyer (in Rochester with the Mayo) wanted to see...and Dr. Scott also asked for the same thing...we couldn't get those doctors in Phx to do that (not necessary they kept saying)....but a close friend who was married to the Chief Neurosurgeon at the Mayo (who died of brain cancer - 12 years ago - who trained Dr. Meyer) but she is now married to the Chairman of the company my husband works for.....she had be pressuring us repeatly to go to the Mayo and see Dr. Meyer.....(she also personally knew Dr. Scott, too)  I guess when neurosurgeons get together yearly for conventions.  So we decided to do the SPECT test and meet Dr. Meyer personally.....in June 2004  - 3 months after they told us surgery will do Cara more harm than good.......the SPECT exam revealed enough for Dr. Meyer to be concerned...we were ready to go home the next day when he said you need to do a new angiogram and possible MRI (which would confirm if she is indeed having TIA's)....I knew would take a few weeks to schedule those at home..so I asked him anyway they could schedule them there...right away they did..the next day....When my friend saw Cara's angiogram (she has seen so many of her husbands work over the years so is familiar with a normal brain scan versus a defected one)....She freaked...and said Oh, Carol do not wait too long to do the surgery.   I said but the neurosurgeon in Phx said would do Cara more harm than good.  Dr. Meyer said  the stroke will do more harm and possible permanent damage if we don't do the surgery.......so SECOND, Third or fourth opinions don't hurt...GO FOR IT.....July 14th was surgery one  and August 23rd  was surgery two....and in the mail I got a "friendly reminder" from the neurosurgeon that told us "would do more harm than good" to make an appt for another followup test !!!!!    I guess I ll drop him a note that our second opinion highly recommend the surgery...and she has had them done and doing very well.

But somehow they have to be sure the patient HAS MM though.  Cara was starting to show tiny MM vessels on the MUCH MUCH clearer angiogram at the Mayo than at the Phx Childrens Hosp angiogram.  So a place that "routinely does MM cases"...specialize in MM cases would be the way to go.


hugs,  carasMOM

Lilian wrote on Sep 2^nd, 2004 at 8:32am:


Lilian, no need to apologize.  I didn't mean you were making it up.  I understand it's what you were told.  Just wanted to make my point that I believe you were told some incorrect information.

Sorry for the misunderstanding!

;

Hi Annica,

Thank you for asking.  Once we were told there wasn't any bleeding, this week's setback was more emotional than physical.  Tara is so afraid that it will happen again and, of course, how does one know that a TIA isn't going to move into a full-blown stroke?  And, even though a MM patient has basically been given their life back after successful surgery(ies), young people (especially) just see what's immediately ahead of them.  I'll bet you can relate to much of this with your daughter's experience.  The uncertainty of this disease is so hard. 

Anyway, things are good for now.  I hope all is well with you in Sweden!

Hugs,
Jill

Here's something really cool!

Each year Tara's high school has a senior retreat.  It's a day where the seniors go away for the day.  They do things like swim, play volleyball, bond with each other, worship and just have a nice day.

Yesterday Tara was asked to be a key speaker at this year's retreat.  She's absolutely scared to death, as she really doesn't enjoy public speaking (o.k., she despises it!).  But, she recognizes that there's a reason God has taken her on this MM road,  and that it's important to share her testimony with others.  So, she's going to do it!

Through everything, Tara's faith has only become stronger, and as parents, we are so very proud of her!  She will be spending the next few days putting her thoughts down on paper and trying not to be nervous.   Anyway, just had to share . . . . .

Have a great day!

Jill 

Carol,

Thank you for the wonderful words . . . how is it that you always know just the right thing to say????  I love reading your posts!

Hope you're having a nice weekend.  Give your darling Cara a big hug from me, o.k.?

Warmly,

Jill