Hi from Jeff, re. my stent treatment at Stanford

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

Postby LR1234 » Fri Nov 06, 2009 8:04 am

I know what Jeff means about the whooshing and bang sounds. I had that for about 7/8 months and then it vanished. I don't think it was a relapse or anything but it was something that appeared for a while and then went.
Hearing you say it is because of the jugular confirms to me that something weird is going on with my jugulars!
I hope that Jeff's whooshing sounds go like mine did. (I could actually feel them as well as hear them when they were very strong)
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Postby radeck » Fri Nov 06, 2009 9:20 am

Hi Joan, how long has Jeff experienced the whooshing sound? I've had something similar for a couple of days, at rather low volume, in one ear last week. No idea what could have caused it. Something else I've always wondered about (sorry if this is slightly off-topic, but it may be not) is that I've been hearing popping/cracking sounds coming from the inside of my skull while I'm laying down, that I spontaneously interpreted as veins re-adjusting themselves/doing funny things. I noticed this first after coming down with neurological symptoms in Jan. I thought to myself, hey, why are the neuros I go to not asking me about those sounds? Although I hadn't heard of CCSVI at the time, I speculated to myself at the time that my symptoms must have something to do with bloodflow/weird veins...strange, huh?
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Postby cheerleader » Fri Nov 06, 2009 5:08 pm

Only been a week on the whoosh- he's never had it before. (He also didn't have a complete jugular on the left side before) Talked to Dr. Dake today, there are a few things it could be, he's helping us narrow it down. Jeff still feels great, working full days, no problem writing/mixing music, exercising, so we're hoping it's from allergies/inflammation/whatever and will remedy itself.

There's a thread on tinnitus and CCSVI, radeck. Hope there are some answers for you:
http://www.thisisms.com/ftopict-8343-tinnitus.html
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby skydog » Fri Nov 06, 2009 5:48 pm

I know the whoosh sound all to well these days. Mostly when I have physically exerted myself. The ring and clacking radeck describes is back with a vengeance these days also. Inflammation in and around the ear canal is likely. Hope for your case Jeff it goes away soon. Glad to here your doing great aside from the ear thing. Cheers, Mark
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Postby radeck » Fri Nov 06, 2009 6:47 pm

I didn't know that the whooshing and clacking/popping sound counted as tinnitus, since they don't seem to be coming from the inner ear like ringing (which I don't have). I'm pretty sure the clacking sound I describe is coming from deep inside the brain.

Anyway, I really hope that what Jeff is experiencing is just a transitory thing, another sign of healing in the long run..
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Postby Sharon » Fri Nov 06, 2009 7:29 pm

Radek wrote
I didn't know that the whooshing and clacking/popping sound counted as tinnitus, since they don't seem to be coming from the inner ear like ringing (which I don't have). I'm pretty sure the clacking sound I describe is coming from deep inside the brain.


Unfortunately, I have both - the ringing and the popping sound -- During my first consultation with Dr. Dake, I asked about the tinnitus -- he asked me to explain the sound -- the ringing sound is a high pitch tone. He told me that it was probably something unrelated to the MS. I have had no change in the tinnitus since the procedure.

You might want to go to http://www.ata.org/about-tinnitus. You can listen to the different sounds of tinnitus -- also learn about tinnitus. I think that we MS'rs forget that we can also experience things that the "normal" healthy people experience. Things that probably have nothing to do with the MS --- we just blame everything on MS. I have come to the conclusion that my tinnitus is probably one of those --- I am no different than a great many of my friends who also have tinnitus (and they do not have MS).

Cheer - I hope that Jeff is able to get some resolution. I might also suggest acupuncture. There are some types of tinnitus which can be treated with the needles.

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Postby skydog » Fri Nov 06, 2009 8:13 pm

http://ringinginears.net/2007-10-10/the ... -you-have/ Lots of info out there on the tinnitus sounds. Mine was just a steady ring post surgery. Still a steady ring but the clicks, clacks, pops have changed the tune to right back to where I started from. Sounds feel like they come from the deep. My wife is sleeping so can't listen to the different sounds posted on the site above. Will try some out in the morn. Night, Mark
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Postby skydog » Sat Nov 07, 2009 7:13 am

Well just listened to all the sounds of tinnitus and nothing quite matched. Mark
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Postby radeck » Sat Nov 07, 2009 7:28 am

Hi Mark, Sharon, I don't think my "snapping" sound classifies as tinnitus, as it's not just a heard thing but also a mechanical one that I can actually feel inside my brain. If I understood it correctly, I also don't think Jeff's sound would classify as tinnitus, since he's hearing the pulse in his jugular vein. Tinnitus is defined as hearing something in the absence of external sound. I think pulse (as well as my "snapping vein" sound) qualifies as external to the ear...
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Postby Sharon » Sat Nov 07, 2009 3:54 pm

Radek -

I think I agree with you :roll: I do have tinnitus though- it is a constant high pitch ring. I also get a clicking sound -- does not happen everyday and only lasts for a minute or so -- maybe this is what you are referring to. But, I have had this for a long time. I had a bad tooth infection years ago, and that is when the tinnitus started in my right ear. (probably due to too much aspirin).

Anyway, I still think that we MS'rs are not exempt from other aches and hurts that other people have.

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Postby cheerleader » Sat Nov 07, 2009 5:04 pm

so anyhoo....
Jeff's ENT says it's pulsatile tinnitus, since when he held his breath in a valsalva maneuver, it stopped. You can google it...it exists, and it can be venous in nature. It's not really benign. It just started last week, along with some new headaches the past few days. Jeff gets his hearing tested next week, and then we'll see an otolaryngologist if it persists. Dr. Dake is in on all this, and will bring Jeff in for more scans if necessary. Trying to keep this thread for updates on Jeff's progress, since it's been six months-
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http://ccsviinms.blogspot.com
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Postby radeck » Sat Nov 07, 2009 5:57 pm

I think we're just trying to help, Joan, not to hijack your thread...

When you write that

cheerleader wrote:It just started last week, along with some new headaches the past few days. Jeff gets his hearing tested next week, and then we'll see an otolaryngologist if it persists. Dr. Dake is in on all this, and will bring Jeff in for more scans if necessary.
cheer


I'm being reminded of how unfortunate it is that we seem to be unable to reach out to at least a few of the more than a hundred liberation procedure patients of Zamboni. There are just too few early MS'ers paying attention to this site who might have experienced similar symptoms as Jeff, and might have helpful things to say. Have you posted in Italian MS forums about this (I don't know if there exists a CCSVI forum in Italian)?
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Thank you

Postby samish » Sun Nov 08, 2009 5:43 pm

Thank you Jeff for your long post. I was diagnosed in 1978. I am scheduled for 11/23/09 and I am terrified. I founded and ran a development group for professional screenwriters for 6 years but the MS forced me to quit. I've always been to frightened to take meetings because of this illness But if you braved the industry maybe I can after this procedure. Thank you for sharing.
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Postby MaggieMae » Mon Nov 09, 2009 8:18 am

I am thinking only good thoughts for Jeff.
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Postby cheerleader » Mon Nov 09, 2009 9:07 am

Thanks all. The whoosh is fading, Jeff feels great this morning- still sleeping well, good energy, no headaches this weekend, no fatigue. The hardest part in all of this is the not knowing (what else is new?) and as I've shared with Marie, I have some guilt issues about any complications folks have with the stenting. I know, it's not my responsibility, but I still worry. These are uncharted waters. So, if anyone starts hearing a whoosh- don't panic (like I did, not Jeff) and give it a week or so to resolve...it could have been from the virus Jeff had last week. who knows?

I agree, Radeck...I wish we were in better contact with the Liberation folks as to post-intervention issues. I know the headaches were discussed and Dr. Dake has spoken at length with Dr. Zamboni regarding cerebral fluid pressure changes.

Samish- Jeff says to tell you he's always been open about his MS with producers, directors, etc. He's felt that if folks have a problem with that, he'd rather not work with them....but he was pretty well-established when he was dx in 2007. It's tough working in Hollywood where youth, health and vigor are a religion. I wish you well- this procedure has certainly helped his work out put!

OK...Jeff promises to come back on and check in...maybe during Thanksgiving holiday- we have a week off :)
appreciate the good thoughts and support,
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http://ccsviinms.blogspot.com
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