have chiari malformation and havin recurring symptoms after surgery...

[jchiari]

hi, i am new here and am a healthy 28 yr old married female with a 16 month old daughter. about a month after having our daughter i started getting pressure headaches which i thought nothing of being i was a new mom and thought maybe it was being tired or hormone changes, etc. well i finally told my husband about 3 months after they started and was seen that following week where they did an mri on my brain. (helps having my mom be a nurse, i get in right away and get taken care of) i found out that night (august 2010) that i have a severe case of chiari malformation. my hereation was at 21mm. i seen a neurologist right away and was referred to a neurosurgeon and then seen another neurosurgeon named dr coufal at scripps in san diego which i chose to go with. my symptoms started getting worse with tingling in hands and feet, dizziness while driving and just because, forgetfulness, slurred speech and of course daily pressure headaches. we decided to go with the surgery before things got worse. i was in for my first surgery sept 30th 2010 where they removed part of my skull, part of c1 and c2 vertebrae rings, sowwed a patch on the dura of my brain (my doc did not want to shrink my tonsils of my brain because there are risks in doing so). my doc said that the hereation was much bigger once he was in and was glad that we did the surgery. spent 2 days in icu and than 4 days in a regular hospital room. went home and ate something that was too rich for my stomach and ended up throwing up which caused a spinal leak. went back in for surgery october 12th 2010 for the repair for the spinal leak and was in icu for 3 days and in a regular hospital room for some more days after that. all in all in the hospital for 17 days total. after being off for 3 months from work and the most amazing support from my husband, daughter and our families i thought i was good to go. my follow up mri showed my herneation at 18mm. seemed symptom free from everything except the dizziness while driving and just because. well about 4 weeks ago i started getting my pressure headaches back again, not as severe but enough to make me pause and think this aint right, also been getting tingling in my hands and feet again. i feel like 11 months after this all started i am back at square one again. i had an mri and it was labeled as stable chiari malformation with a 22 mm hereation. spoke to dr coufal who did my surgeries and he said to get in to see a neurosurgeon in my network asap to see what is going on. i am seeing the first neurosurgeon that i seen for a consult last august next week with hopes that he will refer me to ucla to see dr batzdorf which i hear is one the best chiari specialists in the world. can anyone tell me if they have experienced this and does this sound like it may result in another surgery being my herneation is soooo large. i dont want to jump to conclusions but know that this is not normal and i understand that my surgeries were not a cure, but at the same token should have all these symtpoms returning. can anyone relate... thanks! =)

[jennylynch]

I am having alot of problems after my surgery in febuary and i really really hope the best for you. since my surgery i lost my insurance and am trying to find away to see a neurosurgeon again or something. im getting worse. and i pray you get some help

[selmaS]

  Good luck...yes Dr B has a good rep in chiari circles and I have heard well of him.

  Look forward to updates : )

   "selma"

[jchiari]

i am going to see dr batzdorf on friday aug 5th at ucla. i am so excited to get answers. i know that he is a chiari specialist =) yayyy!! the other neurosurgeon i met with said that i am in the gray area, i may need another surgery but yet he doesn not want to say it is 100% necessary until after i get my cine mri and meet with dr batzdorf cuz there are so many more risks to have it done again. keep ya'll posted. =)

[selmaS]

  Yes I have heard of him, he  is well respected in chiari circles....I do not have ne personal experience with him...so u will have to tell us about urs : )

  Hopefully it was just bcuz of the additional hospital stay and medications that may have delayed the healing process when  the symptoms return....it is normal to have it happen as long  as it is not worse than or longer than b4 surgery.....

Please keep us posted : )
  "selma"

[jchiari]

i understand that with my severe herneation that i will have symptoms. i know that my surgery was not to minimize the herneation, but yet to slow the progression of symptoms with hopefully having them subside. at this point i am just surprised that it has taken so long for my symptoms to come back. i thought being i was symptom free besides the dizziness that i was in the clear and my surgery was a success. i do feel blessed that they are not worse than before except the dizziness factor. being that i have recurring symptoms post surgery my gut says that something is def not right. sounds like it is common for ya'll to have recurring symptoms. i pray to not have another surgery, but know that if it comes to that at least we know what to expect. i see a neurosurgeon next wednesday and am anxious to see what he says and really anxious to get in with the chiari specialist at ucla. have ya'll ever heard of dr batzdorf from ucla? thank you guys so much for replying and if there are any other things you can think of that could be helpful for me please do let me know. thanks. =) jessica

[selmaS]

  Hi and welcome to the Chiari forum.

Well it sounds like u have been thru quite a bit....many  of us will continue to have a herniation post op...and that is not uncommon and y they do the laminectomy to make room for the CSF to flow....at one time they used to remove the tonsils, they no longer do that, some will cauterize the tonsil to nudge them into retracting...but not all do or will.

Yes, u can continue to have symptoms again this is not uncommon...and sometimes u can have more symptoms than u had b4....no one knows how it will turn out, we can all hope and pray for reduced symptoms and to slow progression, and return CSF flow.

To me an unsuccessful surgery is one that needs to be redone bcuz the Dr either took away too much bone and u now have cerebral ptosis, or they were too conservative and took too little and u still have a obstruction.Either way  u need another surgery.

I would have to ask what ur daily activities have been...if nething happened b4 u noticed the onset of the symptoms again...such as something stressful...a fall...a MVA...or lifting something just a bit too heavy for u at this time?

  If ur symptoms r not worse than b4 surgery, it could be just u healing...u will continue to heal up to 2 yrs post op....and I do feel much diff at 2 yrs post op than I did at 1 yr...so u will continue to heal and feel diff.

The only other possibility is, some do develop intra cranial  hypertension...excess CSF...post op...no reason or rhyme...nothing the Dr did or did not do...it is just how ur body reacted to the surgery...do get the testing for this to rule it out...sometime getting meds can help...DIAMOX (sp?) something like that is used to help reduce the CSF, which will help with the pressure.....

  Hang in there : )

  "selma"

  

[jenniferk86]

Well you are going to have symptoms with a 22 mm herniation. The goal of surgery is to get your herniation to 0...sounds like surgery was unsuccessful to me. People have severe symptoms at 5 mm herniation