Pseudo tumor cerebri with neck pain

[jwebs]

My son has pseudotumor cerebri and has an LP programable shunt. He was diagnosed in '99 his last shunt was in 2002. In the last few weeks he has seen an increase head and neck pain that do not go away with laying down.  We were at the ER last week they said the CT  was in normal range the fluid and ventricles. Xray show the shunt in one piece. Four days later I went and had his eyes diolated they said he had the start of papilledema so we went back to the ER they saw the papilledema too and put my son on Diamox.  The next day my son had leg pain and when he went to stand it felt like one leg was shorter than the other this lasted 10-15 min. A few hours later tingling in the mouth and nose started.  The neurologist agreed to see him and they stopped the Diamox. He set up an appt to have the eyes diolated again. Then on Friday he is going to have a spinal tap done. The neurologist feels my son might not have pseudotumor cerebri but chronic daily headaches. I am concerned that this might be the shunt malfunctioning and or the start of chiari.  He doesn't see a chiari on the CT. We don't have a recent MRI. Any thoughts?!

[raynedrop1]

Yes, I had pseudotumor cerebri with no papilladema. I suffered through many months without a diagnosis because of this. I saw a neuroopthamologist who told me I didn't need an LP and he was wrong. I finally had the LP due to the intense headache and pain in my neck and shoulders. It was high with an opening pressure of 27. Yes, 18 would be considered normal but in the high side. I've had 5 LP's in a yr. My neurologist believes I am now in remission. This is a devastating disease that needs further research to identify the cause.

[TJRasta]

Hi Shortnsassie,

Pseudotumor Cerebri (PTC or IIH) can find anyone.  The prime target is female, overweight and in her childbearing years.  I am not close to childbearing years, male, trim and I have IIH so the answer to your question is yes someone of your age could have it.  I would definately see a neurologist.  Also checkout ihrfoundation.org.  They are a non profit organization trying to find a cure.  The website explains IIH vs SIH which is secondary intracranial hypertension that can be caused be drugs such as tetracycline.

Good luck.

[shortnsassie]

36 yrs ago I suffered from pseudotumorcerebri, when I was pregnant with my 2nd child, with this I lost my sight and nearly died. I am now 60 yrs old and seem to be suffering from it again. I suffer with anxiety, depression & OCD, with this my face breaks out and my Dr. prescribed Minocin ( tetracycline). I have been taking this for a very long time maybe 2 yrs. This always caused me to have a very bad headache, so I would take it at night so maybe I could sleep through the pain. I am going through the ringing in the ears, been through my tongue thrusting uncontrolably, balance off terribly, now the horrible neck pain, and when I turn my head the pain shoot up in to the back of my head, Now my thyroid is running low. I can't bend over as the pressure is horrible. I went into see my Dr. about a month ago, and he sent me for an MRI, which was suppose to have came back normal. My condition is getting worse, I can't hardly lay down it hurts so bad, hurts to brush my hair. I have gained about 30 lbs  recently, which is another cause.
I well remember how different my head hurt, this is not like any othere headache I have ever had. But it is also like before trying to get someone to believe that I have an issue going on.. so far my eyes are not affected yet.From what I understand the tetracycline can cause all of this, and unfortunately I thought that Zoloft & Cymbalta was the source of all my issues.
My question is have you ever heard of anyone my age having an issue with pseudotumorcerebri, and is my next step see a neurologist?

[AngieEMT]

PTC is a wild and crazy ailment from my experience. I never had a shunt, but was poked and prodded by umpteen different docs. After over a year of useless treatments, I went to see a chiropractor as a "last resort". That has been my saving grace. Under his care, I was able to return to work and begin to function normally again. I was told I probably had a tension headaches and migraines along with the PTC. I also had a bad reaction to the Diamox. I was on Lasix for a time and just about every pain killer my doctor could think to prescribe. (none of which seemed to do more than take the edge off.) On the up side, I have been back to work since 2002 after being off for just shy of a year. I do have headaches from time to time, but thankfully have lost the ringing ears and regained most of my vision (which I am told is not usually the case). Best of luck. It is rough.

[jwebs]

Ophthalmologist said he no longer has PTC.  But the next day when he had his LP done the opening pressure was 31. It should be around 18 I am told. Can you have pressure and not have papilledema?