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1/2 way 'liberated'?--RIJV ballooning- intense Head Pressure

PostPosted: Wed Dec 29, 2010 8:51 am
by Kate_PghPA
Just getting back online...2nd day Post- procedure...believe I tolerated only 'Half of a Liberation'...left IJV angio'd OK...but with the RJV I felt increasing pressure near ears and InTO my Skull!!

Am I the only pwMS whose experienced this?

I feel I tolerate pain Well,( hey, I'm a retired nurse AND a woman...) I felt like I was going to have a Stroke!! Intense pain...9 out of 10 ..ten being worst...I was scared..and started to moan!
so immediately doc stopped...guess my Heart rate,BP showed I was in pain too
Dr did check azygous and said 'it looked ok'...I have a followup in @ 6 weeks--I've not seen anyone have only partial liberation done...but as we are still in Early phase of Ccsvi Treatment, what else can be expected? Truly I pray I've not done worse damage...I do See some Subtle improvements...
my Left Foot is Less Swollen, only slighty reddish, easier to get out of chair, steadier walking...

Still believe "MS" is a symptom of Ccsvi/vascular dysfunction!
I know Pacific IR/others Do go INTO skull to assess/tx veins...I hope for further treatment complete my "liberation' in future.

I am glad to have helped 'the cause'...more research=practice makes perfect! I feel better overall!

PostPosted: Wed Dec 29, 2010 8:57 am
by CCSVIhusband
Where'd you go neighbor? (PM me) ...

Never heard of that kind of pain, so I can't speak to it. Hope you get some answers ...

Re: 1/2 way 'liberated'?--RIJV ballooning- intense Head Pres

PostPosted: Wed Dec 29, 2010 12:01 pm
by Interrupted
Kate_PghPA wrote:Just getting back online...2nd day Post- procedure...believe I tolerated only 'Half of a Liberation'...left IJV angio'd OK...but with the RJV I felt increasing pressure near ears and InTO my Skull!!

Am I the only pwMS whose experienced this?


It was undoubtedly painful on one side they held open for quite a while for me, especially in my ear that side and around there. I admit if it had gone on for much longer i'd probably have screamed eventually as I recall being on the verge of it when it finally abated as it felt like it was never going to end but I don't know or recall about the into the skull thing 8O

What did the surgeon say about it?

PostPosted: Wed Dec 29, 2010 12:57 pm
by Cece
Does Pacific IR go into the skull? Others too? I hadn't heard that.

Kate, wow, glad you let the doctor know and he stopped immediately. Congrats on the subtle improvements, maybe there are more to be had with gradual healing and/or that RJV being re-treated in the future.

PostPosted: Wed Dec 29, 2010 4:35 pm
by Kate_PghPA
thank you all!!

At first I heard what sounded like cellaphane being crumbled...not unpleasant but wierd...

I am glad to have this site to Check Out My Experience with others...don't want to scare anyone...just so they can be sure to vocalize any discomfort...

didn't talk to doc re: pain, (it Was immediately relieved when balloon deflated), no worse-thank God-
f/u appt. Feb. 9 ...repeat US doppler, review procedure
we DO have SOoo much more to learn yet!

I notice subtle improvements...and That's worth while!!!

ccsvi

PostPosted: Wed Dec 29, 2010 9:43 pm
by blossom
the best to you kate. you rest and continue to improve.

PostPosted: Thu Dec 30, 2010 12:03 am
by drsclafani
Kate_PghPA wrote:thank you all!!

At first I heard what sounded like cellaphane being crumbled...not unpleasant but wierd...

I am glad to have this site to Check Out My Experience with others...don't want to scare anyone...just so they can be sure to vocalize any discomfort...

didn't talk to doc re: pain, (it Was immediately relieved when balloon deflated), no worse-thank God-
f/u appt. Feb. 9 ...repeat US doppler, review procedure
we DO have SOoo much more to learn yet!

I notice subtle improvements...and That's worth while!!!


Sometimes the guidewire moves forward when the balloon catheter is being positioned. It pokes up against the wall of the jugular bulb in the bony canal. It causes crackling sound, sometimes it feels like a gurgling too

usually goes away when the catheter.guidewire, balloon are moved away from the areas

i call it the kelogg effect, snap crackle and pop

PostPosted: Thu Dec 30, 2010 1:03 am
by hope410
drsclafani wrote:Sometimes the guidewire moves forward when the balloon catheter is being positioned. It pokes up against the wall of the jugular bulb in the bony canal. It causes crackling sound, sometimes it feels like a gurgling too

usually goes away when the catheter.guidewire, balloon are moved away from the areas

i call it the kelogg effect, snap crackle and pop


Oh, I didn't know that! I thought the noise was from the dye being injected and swooshing inside near the ear.

Interesting!

PostPosted: Thu Dec 30, 2010 9:16 am
by vivavie
During my procedure the IR said: "it's going to tickle a bit" EUH! if that is tickling i never want to play with you... It was not too painful but it was not fun!

PostPosted: Thu Dec 30, 2010 1:28 pm
by hannakat
Congrats Kate! Sorry to hear about the problems but happy you found someone local.

Rest and be well!

PostPosted: Thu Dec 30, 2010 9:22 pm
by Kate_PghPA
@ Hannakat...thanks Trish...only problem was That Intense Head Pain...I'm hearing from a few pwMS that THIS is NOT that RARE...but Pain Immediately subsided with balloon deflation...and no more Head Pain :) !

We do have much MUCH more to learn about this Treatment!

surprising, I am able to list several Improvements already even if I've not been treated by 'the Best' in the Ccsvi world...think Dr X. has just done over half dozen 'liberations'.

I'm enjoying my renewed life! Glory to God!

good results!

PostPosted: Thu Dec 30, 2010 11:23 pm
by leetz
Amen!!!