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

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

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

Postby Kate_PghPA » Wed Dec 29, 2010 8:51 am

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!
Venoplasty 12/26/10 Vas.Surg/ Pgh,PA Angio'd Both IJV

2/9/11 F/U Transcranial Doppler: flowing well
8/15/11 Hosp. Exac. "MS" 1st Spinal lesions EVER seen/ MRI
9/7/11 F/U T. Doppler: flowing well
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Postby CCSVIhusband » Wed Dec 29, 2010 8:57 am

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

Postby Interrupted » Wed Dec 29, 2010 12:01 pm

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?
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
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Postby Cece » Wed Dec 29, 2010 12:57 pm

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.
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Postby Kate_PghPA » Wed Dec 29, 2010 4:35 pm

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!!!
Venoplasty 12/26/10 Vas.Surg/ Pgh,PA Angio'd Both IJV

2/9/11 F/U Transcranial Doppler: flowing well
8/15/11 Hosp. Exac. "MS" 1st Spinal lesions EVER seen/ MRI
9/7/11 F/U T. Doppler: flowing well
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Location: Near Pittsburgh,PA

ccsvi

Postby blossom » Wed Dec 29, 2010 9:43 pm

the best to you kate. you rest and continue to improve.
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Postby drsclafani » Thu Dec 30, 2010 12:03 am

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
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Postby hope410 » Thu Dec 30, 2010 1:03 am

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!
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Postby vivavie » Thu Dec 30, 2010 9:16 am

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!
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Postby hannakat » Thu Dec 30, 2010 1:28 pm

Congrats Kate! Sorry to hear about the problems but happy you found someone local.

Rest and be well!
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Postby Kate_PghPA » Thu Dec 30, 2010 9:22 pm

@ 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!
Venoplasty 12/26/10 Vas.Surg/ Pgh,PA Angio'd Both IJV

2/9/11 F/U Transcranial Doppler: flowing well
8/15/11 Hosp. Exac. "MS" 1st Spinal lesions EVER seen/ MRI
9/7/11 F/U T. Doppler: flowing well
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good results!

Postby leetz » Thu Dec 30, 2010 11:23 pm

Amen!!!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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