is shunt surgery necessary?

[mark reedy]

dr,
   i began having lightheadedness while standing,moving,and looking down about 6 months ago.also,about the same time stiffness and pain in my neck.when lying down the lightheaded feeling would not be there.after a MRI on my neck only there was a t-1 hemangioma.after several visits to orthopedic surgeons and my current neurologist,i was assured it was not causing any problem.the neck pain subsidded,but the lightheadedness continued.i noticed that this uncomfortable feeling was worse in grocery store aisles and malls.also,i became tired easily and had some leg weakness at the end of the day.next before a vacation i got tremors which after i came home have since gone away also.i determined the tremors were from nerves maybe about the trip and having have been really stressing over these syptoms for so long.next,my neurologist ordered an MRI of the head and said i had mild hydrocephalus but the venticles were only slightly enlarged and i should be fine.he said it was probably due to having memengitis as a child.a month later after the same symptoms the neurosurgeon  ordered a spinal tap.the manometr registrerd 250 which he said was high since 50-180 was normal.he wants to see me again in 2 months and if i continue to have problems he is recomending a shunt.my questions are do you think this is necessary?shouldn't i have being very bad headaches?do these seem like high pressure problems to you?is there a possibility something else is causing these problems.i should also mention i have always had sinus problems but when this started my sinuses have not drained like they used to.and i do get bad sinus pressure from time to time.can a person live with this high of pressure normally and not risk damage.thank you for your time,very concerned,Mark

[sue]

Dear Mark,

I have psuedotumer cerebri for a number of years. The pressure finally pounded through head and CSF leaked through sinus. I thought my runny nose was an allergy. Had surgery to repair hole and was put on Diamox. Diamox is used for altitude sickness, it made me very ill and couldn't tolerate it.  The leak came back,
so a lumboperionatial shunt was put in.  Was in hospital less than 24 hours. Had severe spinal headache for 6 weeks and legs hurt so much couldn't stand to get out of bed. Shunt wasn't draining correctly and catheter was irritating spinal nerves, so
had surgery again one month later to correct problem. In hospital
only 2 hrs. Had another month of spinal headaches, then another type headache was always there. Had another MRI, pressure is too
low, so shunt will have to be adjusted.
Don't panic, this condition is a real nuisance, but it can be
controlled. Do see the Neuro Opthamologist, that is how mine was
diagnosed. Optic nerves were swollen. Eyesight is fine.
Good luck !
Susan C.

[Beth Maier]

I have had pseudotumer cerebri for a long while diagnosed a year and a half ago. I took Diamox And Lasixs for over a year, lost 65lbs. and continued to worsen. In sept. I had my first L.P.with an opening pressure of 270 a week later it was 370. I went to see a nuero surgeon due to the fact it was rising and my symptoms were getting worse. The meds. were not helping so I had a lumboperitoneal shunt installed. I ended up in the hospital for 10 days. The first once failed immediatedly I was unable to get up with out severe head pain and vomiting. They chose to try a programmable valve which is usually used in the head. We were not sure it would be programmable in this area but it couldn't hurt. I was able to go home the next day with headaches. For 2wks. I was good then had recurring symptoms. After 4wks. I had another L.P. with it being 190 but my valve was set at 80 so this was too high. we tried to program and it worked I was set at 60. Three days later it was getting worse so they set me to 30. Three days after I had another L.P. and it was 220. I was scheduled for surgery and I had a kink in the tubing. It has been a week and half so far so good. It is scarry to go thru but I'm better off than I was. I would be sure you have exhausted all your options before considering this but when it's your last hope it's the best one.
                      Good Luck!

[CCF Neuro[P] MD, RPS]

Dear Mark:

Sorry to hear about your problems.  I think the first think to recommend is getting a neuro-opthalmology appointment.  You need to have your optic discs (the nerve that allows you to see can be visualized at the discs) and see if there are any changes.  If there are no changes then this is good, if there are changes than you will likely need medication.  The initial medication is usually diamox (a mild diuretic) to be taken daily.  Our initial approach is to try medications before surgery.  In addition, if you are overweight, this is the time to begin to loose weight as increased weight is associated with pseudotumor cerebri (the condition you have is called this).  The next thing is to rule out any factors that might have precipt. the increase in ICP, such as large does of vitamin A, antibiotics, etc.  

So, I would recommend seeing a neuro-opthalmogist, seeing if medication of diamox can be started, loosing weight if this is a problem.  I hope things resolve.  Surgery, is the last resort if medications fail.

Sincerely,

CCF Neuro MD