All I can say is that my daughters neurologists are treating her for high pressure caused by the large fluid buildup that is exactly where her chiari surgery occurred. She had daily nausea, headaches, tired, numbness, slurred speech, scary stuff and hospitalized three times. The NS finally concurs that the pseudo may have something to do with all this. Since she has been taking the Topamax and Diamox to reduce the pressure caused by the psuedo, she is doing better...no nausea, no headaches, still tired but the pseudo is still there. Are you sure you are not suffering from the high pressure caused by the pseudo which is obviously restricting your CSF flow? Could you ask your doctor to give the Topamax and Diamox a try? Also, I have learned not to listen to the residents...what they say often directly contradicts what the NS says! Deal with the NS and not the residents. For example, the resident told us the revision surgery is highly complicated and dangerous, the NS said its much easier because the bone is already removed and he doesn't touch the brain. However, the NS can't guarantee that the pseudo won't come back after surgery and he advises to watch and wait, as does her other doctors. Did he explain what the very high risks are with the surgery? I feel so bad you are going through this! Please keep me posted!
Exactly like me! I till get the chiari headaches when I laugh or cough! but my NS said its not the psuedo doing that?!!! its the spine leak which the mri didnt show I had! feel no different from the blood patch,the doc who did it said I would feel immediate relief if it was going to work and I have felt nothing.So doesnt take an NS to work out thats its the dura thats leaking thats causing the pseudo! feel like screaming,was so close to the surgery then last min he changed his mind! now have to wait another 6 weeks to see him! more torture! so true Susan if they had to live in our shoes for one day they might be abit more understanding.Think I need to see a chiari NS because mine isnt,
Denise xx
Dont know if this means anything but my NS understudy explained to me that my NS leaves the dura opened after surgery?! to allow more room.Is this a standard thing? could this be the reason why I have developed a pseudomeningcele? he said that there is another patient with the same complications so they need to look and maybe change how they do things for this procedure.I honestly dont think my NS has a clue on chiari! he told me that you dont get a chiari headache from coughing,laughing etc from a low pressure headache(leak)??????
Denise x