HomeRegisterLog inFollow us on facebookFollow us on twitterFollow us on youtubeFollow us on LinkedinFollow us on PintrestContact usFeedback


Share  | 
 

 Procedure for compression of my jugular vein called a styloidectomy

View previous topic View next topic Go down 
AuthorMessage
Kasskal
Member
Member
avatar


PostSubject: Procedure for compression of my jugular vein called a styloidectomy   Sat Jun 29, 2013 6:14 pm

I am new to this forum and very excited about all the wonderful information and stories. I have been dealing with this disease for 3 1/2 years now. I have a VP shunt with four revisions. I am currently dealing with headaches on a daily basis that I just can't seem to get over it this time. I have started with some new physicians that seem to know more about the disease but the waiting game with the headache is just so hard. I don't know what to do. I am having to take topamax. I have tried numerous migraine meds, and botox injections. I am not getting much relief. I really want to take my shunt out to see if I can deal without it since I have pain where it is, in the tubing, and my stomach. Plus I am still having to take medications. It has not relieved my headache much so I just feel there is no need to have it. Had anyone had theirs removed? Also I have just recently been told I will need a procedure for compression of my jugular vein called a styloidectomy. Had anyone had that done? If so what is recovery time for that? I just had to take medical leave from my job because of my ability to make decisions and think clearly has decreased greatly. I am in fear of losing my job. I hope to find some relief and answers soon.
Back to top Go down
Heidi
Admin1
Admin1
avatar


PostSubject: Re: Procedure for compression of my jugular vein called a styloidectomy   Sun Jun 30, 2013 5:39 pm

The compression of your jugular vein can lead to obstruction of cerebral veins and increased pressure, which is why your needing to have the Styloidectomy, which will decompress it. You might find these helpful reading and shed more light on why they recommend you have this procedure.

Styloidogenic jugular venous compression syndrome: diagnosis and treatment: case report

Styloidogenic Jugular Venous Compression

Please keep us updated and remember we are all here to support you and help you.

Heidi hug
Back to top Go down
http://www.ihaveiih.com
Sophiasmom
Admin2
Admin2
avatar


PostSubject: Re: Procedure for compression of my jugular vein called a styloidectomy   Sun Jun 30, 2013 9:14 pm

Kasskal, that is really exciting!  Dr. Nakaji in Phoenix has cured IIH with this procedure on the styloid!  you may be incredibly fortunate if this works!  if it were me, I would wait on the shunt removal until after that, then decide.  or maybe have them do it all at the same time, if they agree it isn't helping you.  but maybe you really won't need it anymore after the styloidectomy.  of course defer to your neurosurgeon.

maybe this is just my opinion, but if you think about it logically, shunts and Diamox don't really treat the underlying problem in IIH directly, which is brain edema and decreased jugular venous drainage (Alperin et al)  leading to increased pressure along the outside of the brain, pushing in.  it makes more sense to me to improve drainage, to decrease pressure in the subarachnoid space, than to decrease CSF production or to drain it out of the ventricles.  shunts make more sense for hydrocephalus, which is increased pressure in the ventricles pushing out on the brain.  if things really communicated in that system, then we would see the same things in hydrocephalus and IIH but we don't.  again this is just my attempt at applying logic to the situation.  I think you are very fortunate to have this anatomical variant where there is a procedure to address the true underlying problem for your IIH.
good luck!
Back to top Go down
Kasskal
Member
Member
avatar


PostSubject: Re: Procedure for compression of my jugular vein called a styloidectomy   Wed Jul 03, 2013 2:35 pm

Thank you so much for the replies. Sophiasmom, I think you are so right about the logic. I do think it makes a lot of sense myself. I have felt the same way. It has been pretty obvious to me that my shunt does not work for me having IIH. I know of people with other types of problems that they seem to do ok with a shunt for years. I do believe there is hope that this would help me and hopefully others. I have not been able to talk with anyone that has had this procedure. I have not really asked many questions up until now because I did not know about other possible solutions. I do feel fortunate that I have physicians looking into other avenues. I know in my heart and brain that there is something not right. I do hope this procedure will give me relief. I know the physician that found this said he has several patients with complete relief of symptoms after the procedure. Heidi, thank you for the link and I really appreciate the feedback. I hope to learn more about the procedure soon.
Back to top Go down
Sophiasmom
Admin2
Admin2
avatar


PostSubject: Re: Procedure for compression of my jugular vein called a styloidectomy   Sat Jul 06, 2013 5:34 am

hi Kasskal;
I am so interested in your surgeon's experience.  where are you located?  see, both my mother and I have had intermittent symptoms of Eagle's syndrome, which is caused by an elongated styloid.  but there were no abnormalities on my CT or in my jugular venous drainage.  I am wondering if in us, a styloid that is otherwise considered normal, might be causing obstruction that is positional and therefore something not detected on my study.  the jugular vein is compressed between the styloid and the transverse process of C1.  my son had bad symptoms, screaming at night and neck pain, that would go away after he had his C1 adjusted by the chiropractor.  this was at age 1.  he is now also diagnosed with IIH.  we all have very narrow posterior pharynxes, with the tongue taking up a lot of space in the back.  I had to have the back of my tongue burned off because I felt like I was suffocating all the time, unless I stuck my tongue out of my mouth.  I have to wonder if it was pressing on my jugular veins.  and that this might explain my improvement since jaw surgery moved that all forwards by 1cm.  so could IIH be related to a very narrow neck anatomy that leads to increased resistance in the jugular veins, that could be addressed in multiple ways, just by making more space for them?  does the styloid really have to be noticeably elongated or in the presence of other factors could it be one thing that could be addressed?  so I'm wondering just how big the other patient's styloids were.....
Back to top Go down
pleasehelp29
Member
Member
avatar


PostSubject: Re: Procedure for compression of my jugular vein called a styloidectomy   Sun Jul 14, 2013 10:57 pm

Hey there Kasskal,


My name's Austin, I live in Dallas, and my neuro found from my imaging that my styloid was compressing my right internal jugular vein. Therefore, I had styloidectomy surgery. I'm sorry to say that in my particular case I did not get pain relief from the surgery. After getting imaging done post-op the MRV clearly showed that despite having the styloid bone removed my vein was still stenotic! We're aren't exactly sure why this is...but we're having it investigated.


you can see my imaging here: [You must be registered and logged in to see this link.]


my father is a physician and he and I (especially him) have been working hard trying to understand the complexities and mechanisms behind IIH. We're currently investigating venous pressure's correlation with IIH. 


If either of us could help you, answer a question, or do anything at all for you don't hesitate to send us a message! 


please shoot me an email: [You must be registered and logged in to see this link.]
you can contact my father at: [You must be registered and logged in to see this link.]


if you'd like to read my medical story it's here: [You must be registered and logged in to see this link.]

all the best,
Austin



Back to top Go down
Sophiasmom
Admin2
Admin2
avatar


PostSubject: Re: Procedure for compression of my jugular vein called a styloidectomy   Mon Jul 15, 2013 8:17 am

Austin;
can you see on the MRV whether the posterior sides of your tongue might be compressing the vein?  I'm just so suspicious since I am so much better since jaw surgery, that my tongue was back there on the veins increasing resistance.
Deb
Back to top Go down
Sponsored content




PostSubject: Re: Procedure for compression of my jugular vein called a styloidectomy   

Back to top Go down
 

Procedure for compression of my jugular vein called a styloidectomy

View previous topic View next topic Back to top 

 Similar topics

+
Page 1 of 1

Permissions in this forum:You cannot reply to topics in this forum
www.ihaveiih.com :: Living with IIH ::   :: Group Huddle-
Jump to:  
DISCLAIMER This group is not managed by anyone in the medical profession, but by people who are either affected by, or are closely connected to IIH. Information provided on this site is meant to complement & not replace any advice or information from a health professional, users and members are reminded that medical professionals should always be consulted in all aspects of health needs.
Protected by Copyscape Web Copyright Protection Software
Top Disability Websites
Free forum | © phpBB | Free forum support | Contact | Report an abuse | Free forum