First Post Cyberknife MRI

[jrhafer]

Hi Sandy and to all,

I have been reading posts here but have not done much posting.  However, your news is great!  I am very happy for you and I am sure things will only improve and get even better for you as time goes on.

I am now 9 months post CK treatment for my AN and things have been getting better each month.  My 6 month post treatment MRI also showed a black line running through my AN and my tinnitus has stabilized and has even gotten a bit better.  No balance issues and my hearing is still OK in my AN ear, just a slight high frequency loss.

All in all, now at 9 months, I feel I am doing great considering what I went through, so I am confident you will improve as time goes on too.

My thoughts are with you and with all of you other folks with AN.  I am sure that someday, we will all be putting this behind us and will not even think about it at all.  I now that I am already starting to feel that way.

John

[shoegirl]

John,

So glad you posted your results!  It is great news! And I am happy for you.  I hope you will post your next MRI results too.  I am a little behind you in treatment - had my CK in Dec. 05.  So I am about 4 months post CK.  Reading your story helps.  It really makes a difference for all of us CK patients and those seeking treatment.  Happy to hear you are feeling good and hope it continues!

Best Wishes, Suzanne 

[ppearl214]

Hi John and Suz!

Folks like you all (and Sandy and Mark and the entire radio-Postie gang) are what keep me going!  Here's sending huggles that you all keep on this path of wellness and lordy, the Class of '05 is so impressive and looking forward to the Class of '06 following in your heels!

Phyl

[okiesandy]

UP DATE,

Had my 6 month post CK MRI last Friday......... More darkness down the middle and for all of you size freeks her are the measurements....


Pre CK 1.2 cm x .7 cm

Three Month: 1.5 cm x .6 cm and a thin dark line through the middle running length wise

Six Month: 1.2 cm x and a smidge over .5 cm with a darker slightly wider dark line.

Facial numbness, about gone. Just a small spot beside my mouth. No more flushing.Tinnitus is a lot less on some days
Balance is off still. However, I am coping and back to riding my horses at a walk and slow trot. Not ready for anything else yet.
Some days are better than others. Now, if I could get the autoimmune thing under control I would be a happy camper.
I think "Ivan the Terrible Tumors" days are numbered.

Sandy

[ppearl214]

Sandy, you have NO clue the martini I am going to pour myself tonight to celebrate this fantastic news of Ivan, the crappy booger and his miserable, timely death!  Gawd, you continue to give me massive hope that my CK treatment is going to kill ... um.... dang, haven't named it....

Congrats, congrats and continued good wishes! Go for a bareback ride! You earned it hon!!!

xxooxoxxo
Phyl

UP DATE,

Had my 6 month post CK MRI last Friday......... More darkness down the middle and for all of you size freeks her are the measurements....


Pre CK 1.2 cm x .7 cm

Three Month: 1.5 cm x .6 cm and a thin dark line through the middle running length wise

Six Month: 1.2 cm x and a smidge over .5 cm with a darker slightly wider dark line.

Facial numbness, about gone. Just a small spot beside my mouth. No more flushing.Tinnitus is a lot less on some days
Balance is off still. However, I am coping and back to riding my horses at a walk and slow trot. Not ready for anything else yet.
Some days are better than others. Now, if I could get the autoimmune thing under control I would be a happy camper.
I think "Ivan the Terrible Tumors" days are numbered.

Sandy

[okiesandy]

BAREBACK? On my horse??? Of course that is what you mean, right? Last time I rode bareback I fell off. Remember I am old.

Give the little booger a name. That is maybe the only fun thing about this. Nothing sweet will do.

Hugs and Blessings

Sandy

[ppearl214]

BAREBACK? On my horse??? Of course that is what you mean, right? Last time I rode bareback I fell off. Remember I am old.

Give the little booger a name. That is maybe the only fun thing about this. Nothing sweet will do.

Hugs and Blessings

Sandy

You're not too old, you young geezer!   Oh, enjoy and celebrate. Hoping my 6-month postie MRI in Oct will show the beginning of the same in the timely death of .....what shall we call it?

xo
P

[mellowrama]

Hi Sandy!

That is great news!   So glad to hear that you're doing better with your symptoms too - are these results what were expected or even better?  Its really good to see the good postings too.

I plan on trying to see Dr. Medbery sometime within the next couple of weeks...I was thinking of meeting the same folks you saw and checking out the facilty.  Maybe we'll have a martini together 

congrats, melinda

[okiesandy]

Melinda,

Glad to hear from you again. Saw Dr. M at the Airport about three weeks ago. Got a free consult and really picked up on his confidence in the CK treatment. He was on his way to FL. to help the with some new CK center. We briefly touched on you and he said he thought you were not in a hurry. Did you get the MRI's to him? 

I am very happy with the results so far. You don't know how glad I am that I decided to go the CK route. I really did not expect to see much difference this soon. Of course I would like "Ivan" to be gone. Just fall out of my head or something.

I saw Dr. Morrison this time. Dr M was out of town. She was very nice. She thought it looked good for 6 months. The 1 year should show more progress.  I am having a lot more trouble with my autoimmune hearing problem than with the tumor. I don't even give the tumor much thought any more. I know the balance thing will never be perfect. It isn't really bad ,so that's good. I did stress some the week before the MRI.

It is 105 here and it isn't bothering me as much as it did before treatment. Last summer the heat really made my world out of balance. I kind of expected to show more symptoms by now. That is not the case, I seem to just slowly get better. Some days are better than others. There are days that I am so normal it is beyond my expectations and some that I am off balance and tired. Most of my brain fog is gone. I am back to just plan ditzy blonde self most of the time

I don't know about the martini. I am a margarita kind of person. You just remember I owe you a dinner and we can include drinks. Email me and let me know when you will be here and how we can connect.

Blessings

Sandy

[ppearl214]

Sandy, hoping you gave your D. M a huggle from me too... he's truly been priceless to me in all of my question, my issues.. .and my warped humor!

xo
Phyl

[okiesandy]

Hey Phyl,

Did you ever get the wine to Dr. M?  I didn't see him last time I went for an appointment. He is getting to be a very busy man. Running all over the country talking about CK.

Melinda did not get to see him when she was here.  So far I like all of the doctors in his office. They just seem to have the personal touch. They always take all the time you need.

Hugs,

Sandy

[ppearl214]

no, not yet... what is the best way for me to get it to him?

xoxox

Hey Phyl,

Did you ever get the wine to Dr. M?  I didn't see him last time I went for an appointment. He is getting to be a very busy man. Running all over the country talking about CK.

Melinda did not get to see him when she was here.  So far I like all of the doctors in his office. They just seem to have the personal touch. They always take all the time you need.

Hugs,

Sandy