Once again we are at CHOP after a very frightening episode of numbness, disorientation, unable to speak, all stroke like symptoms lasting about an hour. MRI showed no stroke thank god. Neurology is doing full TIA and seizure work up but if nothing is found, they think the obvious answer is the large pseudomeningocele. I know this forum has addressed pseudos many times but
times but has anyone experienced ANYTHING like this after intradural Chiari surgery? I wonder if draining the pseudo would help with the pressure, and what are the risks of the procedure?
I too experience those symptoms,from what Ive read the pseudo buts the brain under enormous pressure.Im waiting to have mine repaired and have a new dura put it because tthe old one has torn.when their large enough they can put pressure on your cervical cord.Do u get postural headcaches? I canteven stand up with mine,only thing that helps is lying down.
Denise x
Hi Denise, I am SO sorry you are experiencing these horrible symptoms. All the doctors here EXCEPT NS think the pseudo is causing her problems. She still has nausea and her headaches are bad before an episode but otherwise controlled with Motrin. We don’t wish for a revision surgery but at this point she has no quality of life. Her pseudo goes to C4 and if she weren’t having the stroke symptoms we would watch and wait. Testing continues at this point but ultimately we may be forced to look elsewhere for help. I am sending her scans to Dr. Souweidane at Cornelll to get a much needed NS second opinion. Do you still get nauseous every morning? Thank goodness your NS has taken responsibility and is fixing your problem.
Hi Joalexa,yes I so feel very sick most days,NS said its where the dura is leaking and causing a drop in pressure that causes the nausea.He has finally taken resposibility after 8 mths!!! kept telling all was fine and to get on with my life,thank god the cine mri showed a different picture.Really hope you get the answers and help you need just keep persisiting,thinking about u,
take care
Denise xx
Hi Denise, the attending neurologist agrees that pressure on the PM caused migraine like symptoms. She’s now on Topomax to reduce CFS production and Neurology is consulting with NS to determine the next step. They are comparing MRI to see if PM is larger, smaller or the same. I hope your NS gets you in quickly and I’m so glad you kept up advocating for yourself, as I am for my daughter. .
I developed Hydrocephalus after my surgery and ended up with a VP shunt. I had the same symptoms due to severe pressure. I now have a programmable shunt that adjust my spinal fluid flow on it's own. The VP shunt has really made a difference in my life.
Hi edock, thanks for your reply. From what I understand Alexa’s MRI doesn’t indicate hydrocephalus but the large pseudo is obviously causing enough pressure to cause these symptoms. How did they diagnose your hydro? They are treating her with meds to reduce pressure. Did you have a leak after surgery?
Take care, JoAnne
Hi Susan! I am SO sad for what you had to go through. My NS says he sees these big pseudos all the time (yikes) and there is no sign of hydro (he brought a pic of the MRI). He did say that if he removed the pseudo and replaced the patch there is no guarantee she would develop another pseudo and then need a shunt. NL agrees with you that it’s obvious pressure from the pseudo. Since she started the Diamox and Topamax she’s not complained of nausea or headaches (fingers wayyyy crossed here) so just maybe reducing the pressure via meds might allow the pseudo to get smaller. Worth a try before committing to another surgery. I hope you don’t mind me asking if your symptoms were relieved by draining why you needed the shunt. I hope you are feeling much better now! Take care, JoAnne
Hi Susan! These pseudos are no fun at all! I am so sorry that it took 8 months to get attention…I can’t imagine. I do know that NS look at pseudos as issues that will go away with time but as you clearly demonstrate, some don’t. Thanks too about the Topamax warning. I will keep a close eye on her. She’s on 50 mg and just started so we’ll see how she does. The NS refuses to drain it saying it would come right back. That tells me the leak is still there. However he also said he expects it to be significantly smaller by December. Are you feeling better now? It’s great you don’t need the shunt but can’t they remove it? Best to you always! Take care, JoAnne
Yes, I came home from the hospital 14 days post op and was home maybe 3 hrs. and I noticed my pillow was drenched with fluid. I thought it was from being on narcotics and I was just sweating. I was then taken to the nearby ER and I was told I was leaking spinal fluid from my incision. We drove 4 hrs back to the Chicago hospital there was when I made a turn for the worse an every thing seem to spiral out of control. I had a temp of 104.7 and a severe brain infection. They place spinal drains in my back and drained of 2L (IV bags full) of fluid coming from my head. Most people do not realize that you constantly produce new spinal fluid and if your levels are not correct in ur body the body over produces fluid. On CT scans and MRI's they show up as the venticles in the brain increase in size. I was also placed on Diamox and Topomax in the past. They use Diamox when I start to develop symptoms then take me off if my symptoms improve they know that my shunt needs readjusted. The shunt is a life time thing. So I am glad that you haven't had to have one placed. As I have learned from others on here that I am not alone with all the pressure headaches. I have found that the more active I am I seem to feel better. I still have down days and i deal with a lot of neuropathy pain. Thanks for responding, Have a good day!
Joalexa said:
Hi edock, thanks for your reply. From what I understand Alexa's MRI doesn't indicate hydrocephalus but the large pseudo is obviously causing enough pressure to cause these symptoms. How did they diagnose your hydro? They are treating her with meds to reduce pressure. Did you have a leak after surgery?
Take care, JoAnne