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.

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

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!

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,  for the link and I really appreciate the feedback. I hope to learn more about the procedure soon.

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.....

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