MRI shows Pseudo

[DLandis61]

Hi there, new here. Just wondered if anyone has information on an MRI showing a Pseudo? I had Chiari decompression surgery 4-2011 at Cleveland Clinic. I've been symptom free until January of this year, I then started getting the pressure back in the base of my head,neck pain, some balance issues to my left. My most recent MRI shows extra-axial fluid leak,that says most likely a pseudomeningocele. I had an appointment with the NS that did my surgery in 2011, his NP called and told me that he felt from what he saw he wanted me to see a Migraine Dr. at the clinic. I told her how severe my symptoms have been and she talked to NS, he told her to get me scheduled with a second NS for a second opinion, I see him this Wednesday,hopefully get a good answer.

[Lottida]

I just wanted to say that Zygy2 was a great support person for me while waiting for answers.  She has been through the ringer with this unfortunately, but she is very knowledgeable.  You can always PM her & she will msg you back.   I did not have high CSF pressure so I did not require a shunt.  I also had no rejection issues.  I was fine until after my sneezing attack.  I will say that I must have sneezed 10-20 times in a row from something sprayed in my house.  I am now very careful not to sneeze, cough or laugh to avoid pressure to my durapatch.   You may need more testing like lumbar puncture to check your CSF pressure.  The CT guided drainages were useless in my opinion, but I have recently read several research articles that report success in CT guided drainages aiding CSF leaks to seal(it didn't work for me).  

I had to take stool softners/laxatives & avoid any straining/lifting while waiting for leak to seal.  Drink lots of fluids to keep hydrated & rest as much as possible.  Hopefully you get some good answers soon!!!!

[DLandis61]

Thank you again for the information, I really do appreciate this!

[selmaS]

  We do have a list of Drs  and for Ohio there are only 2 names and I think I heard one may have retired from doing surgery.....

OHIO

Dr. Lisa Lystad-Opthalmologist
Cleveland Clinic
9500 Euclid Ave
Cleveland OH 44195

Dr. John M. Tew, Jr.
Mayfield Clinic
Unv Medical Arts Bldg.
222 Piedmont Ave, Suite 3100
Cincinnati, OH 45219
[phone]

Keep in mind you may have to travel...I went out of state as I could not find a Dr near me that was informed enuff to even refer me...so I would not take a chance on surgery like that ....

It is good to see a few Drs, while you educate yourself ...you will know when you found the right Dr for you.

[DLandis61]

Thank you very much, it's good to be able to talk to others that have been through the same things that I have. From what I understand,the Dr. I am seeing is the Chief Neurosurgeon,who has treated Chiari,but I don't think that would be considered a specialist. Just wondered if anyone might know of a true Chiari specialist in the Cleveland-Youngstown area?

[DLandis61]

Thank you for the information, I'm sorry to hear that you've had to go through this also,although I am glad you are feeling better. I don't understand why the original surgeon,who is a very good surgeon, hasn't looked at me but wanted me to see a Migraine Specialist,until I pressed him about my pressure and pain I have daily,then he had his NP schedule me with the Chief Neurosurgeon at Cleveland Clinic. I was in hospital 5 days for decompression surgery,hopefully if I have to have surgery,it's not a longer stay like your stay.I guess I'll find out Wednesday.

[selmaS]

   Hi and welcome to the Chiari forum.

We have had several members that have been thru the formation of a pseudo repair....this can happen when you have a related condition like Ehlers-Danlos and your body rejects the dura patch or if the patch fails due to other reasons....which ever they are  it is important to rule out ALL related conditions as treatment will vary depending on which conditions they are.

Some Drs will want to place a shunt to drain excess fluid but that could  cause more fluid and more pressure...

I would also advise you get an opinion from a Chiari specialist that was not your original surgeon...

  Zygy2 is one of our other members that has been thru a lot with pseudos and has always been helpful in helping others with this issue.

[Lottida]

Hi & sorry to hear that you have a pseudomeningocele.  I am 2 weeks post op Pseudo repair.  I had a leak on my durapatch which started 5 weeks post op decompression due to a sneezing attack.  I will say this........the decompression surgery was minimal on the pain scale compared to the CSF leak repair.  I had to have a lumbar drain which required drainage hourly for 4 days.  The "spinal headaches" were pretty horrible & that is what makes this surgery so much worse!!!   I was in the hospital 2 nights for decompression & 6 nights for pseudo repair.  I now feel so much better tho.  I don't think I would of had much of a choice since the fluid pocket on the back of my head was the size of a large grapefruit (my incision was close to tearing apart).  Also most docs will try the least invasive treatment like a CT guided drainage or a wait & see game before rushing to surgery.........since some leaks will seal on their own with time.  Do you know if you did any straining or anything to possibly cause the leak??  Mine was a sneezing attack.  I never felt anything pop in my head, but woke up the next day with swelling near my incision.  Please be patient with this process because its usually not a fast one!!  Good luck & keep us posted.