I had my surgery in 2009. I began having headaches again in October last year so I made a visit to my neurologist. They found out I have spinal fluid on both of my optical nerves and I could potentially go blind from it. This is called pseudotumor cerebri. Has anyone else been diagnosed with this aAter the decompression surgery? I’m trying to lose weight to relieve this… it’s difficult.
Pseudotumor Cerebri is another term for Intracranial Hypertension, when the fluid builds up in your eyes it's the optic nerves that swell, and this is called Papiledema. I have it to, and was diagnosed in 2010. It was kind of a blessing for me, because up to this point I had been told that I was asymptomatic, and everything I was describing was psychological, so here was proof that I wasn't making it up.
You need to find a neuro-ophthamologist, otherwise a normal eye doctor won't have the knowledge or experience to help you.
Hey Brittany! Sorry to hear about the new diagnosis. I had my surgery in 2010 and have had continued headaches ever since. While my NS keeps reiterating I'm "fine" and I knew the risks of not being fully symptom-free post surgery, I know my body and I know these headaches are something else. I'm glad I read your post because I feel like my headaches could possibly be a pseudotumor and I'm gonna explore this possibility. After my surgery I developed two spinal fluid leaks, so I wonder if because of these two leaks, maybe my chances of a psuedo tumor are higher? I just wanna be better and be myself again, which I haven't been since 2010. Anyhoo, enough about me....I wish you well and hope everything goes great with you and you get some relief ASAP! :)
~Crystal~
this is a chicken or the egg dilemma. Most patients with Idiopathic intracranial hypertension(pseudotumor cerebri is the old phrase, really a relic from the pre-MRI era) and Chiari probably had IIH all along, with the elevated pressure pushing the Chiari down. Unless papilledema(swelling behind the eye) is seen, IIH is difficult to diagnose in the setting of Chiari(but up to 5% of Chiari patients may have IIH). The diagnostic test of choice to diagnose IIH is checking intracranial pressure(ICP)(via lumbar puncture(LP) is the most common means).
I woudl echo Danie's recommendation for a neuro-opthalmologist, to follow the papilledema and visual acuity.
I hate when they say loose weight. I am a small person. I have this. I think there should be more than just loose weight. I don’t have any to loose, so I just want to stress that we all need the right doctor to manage us.
I hope for nothing but the best for you!
Dr. Trumble,
Aren't LPs not recommended for Chiari patients? I had two, and both showed my pressure to be a high normal, 25 and 27, so like Lauren, I was told to lose weight, Diamox was increased to an unbearable level, and basically suck it up. I didn't see a doctor for over a year after that. I understand that LPs can show pressure, but what is someone to do when measurements are continually "borderline," but symptoms persist or increase? It feels like a never ending cycle of bad news.
Certainly, continuous CSF drainage from the lumbar space(like a shunt) is contra-indicated in the Chiari patient population. some MDs will allow LPs in chiari patients, others will not. there is not good science on either side. there is emerging data that LP may not be as accurate as an ICP monitor, particularly in patients with poor CSF flow from head to spine(Chiari patients being the prime example there).
Weight loss works in up to 50% of IIH patients(but you need to start significantly overweight). Some institutions talk about gastric banding prior to shunting.
My bias is to try a ventriculo-peritoneal shunt in patients similar to you, with the understanding that up to 50% of shunts plaed in the IIH patient population fail in the first several months after implantation(the ventricles are smaller and so our surgical target is smaller).
Certainly, you want to achieve maximal medical management prior to consideration of surgery(just like you would in the setting of Chiari).
Thank you for the detailed response Dr. Trumble. I'm currently trying to find a neurosurgeon that will take me as a patient. I have the new HealthCare Marketplace, and the only neurosurgical team in my network did not feel they had the expertise or equipment to insert a vp shunt. In the case of IIH they would normally do a lumbar shunt, but that isn't a possibility due to the Chiari, and I have noted dessication in my lumbar region. I did lose nearly 40 pounds while under the care of the previous neurosurgeon, but the symptoms increased, and it was noted that in my latest MRI my ventricles have slightly enlarged, so there was concern that it could actually be hydrocephalus, though my ventricles are small, but not slit like.
As for weight loss, the increased Diamox has made it nearly impossible for me to have a bowel movement, on top of Hashimoto's Thyroiditis, so short of starving myself, weight doesn't come off like it would with healthy patients. Never easy, eh?
Thanks again for your reply!
NPH is essentially the opposite of IIH, although the treatment is the same(telling you we are treating symptoms, rather than getting to the root cause).
In NPH, the ICP remains normal but the ventricles enlarge(more common in the elderly).
In IIH, ICP goes up but the ventricles remain small(more common in the overweight).
The more common statements are clearly generalities, no applicable to every patient.
It is believed both are due to changes in brain compliance(tension). With NPH, the brain is too complaint, leading to enlarging ventriles, head-aches, shuffling gait, and incontinence. With IIH, the brain is non-compliant, leading to elevated ICP without change in CSF volume, head-aches, papilledema, and worsening vision.
Interesting. I hadn't heard of compliance before. Hopefully, all of this information is helpful to you Brittany!
I'm sorry to hear about this for you! I was just diagnosed with the same thing this past Friday by my Ophthamologist. After a bunch of tests I picked up my results only to see PseudoTumor written on the front page in a big circle. I asked the nurse about it and she didn't didn't offer much except to look it up. :-( I did some research and it seems as if a low inflammation diet and no longer eating refined sugar is supposed to help too. I'm about 20 pounds overweight and see that it said being overweight makes things worse too. I had decompression surgery in August 2013 and sadly it didn't help. :-( So frustrating, but at this point I'm so desperate for help that if no sugar will help, I'll try it!