giant pseudomemingocele

[chmski]

In February of 2013, during an attempt at a thoracic/lumbar myelogram/ct scan, it was discovered that I had a 12 cm, by 5 cm, by 2 cm calcified pseudomemingocele the entire length of the lumbar spine.  It is palpable, painful to the touch, and may be leaking into the right side gluteal muscle.  Back in 2009 I sustained the second of two fusion surgeries, an Alif/Plif from L1 to S1 with osteotomy at L4/5 which was the likely cause of the lesion.  The GP was described by two radiologists as “fluid” and “undulating”.

I had consults with two neurosurgeons.  One local and one from a large medical school and medical center where the surgeries were performed.  Both said that a giant pseudomeningocele (GP) is a VERY COMMON OUTCOME of spinal fusion surgery.   The symptoms that sent me to the doctor were pain and progressive weakness in my legs and the inability to stand up straight or walk without assistance of crutches.  I believe these symptoms are at least partially due to the GP because of the large volume of nerve and muscle tissue that was bathed over 3+ years.  BMP may be a factor as it was used during this surgery.

The NS recommended nothing, not even draining.  Thoughts..............?

[selmaS]

  That is out dated info and the reason he lost his license has no baring on his ability to help those with Chiari, it has more to do with a medical board made of non Drs that do not believe Chiari causes issues and he is fighting to be able to help those with it.....

Those rate a Dr for free sites do not always offer the best or right info.....so seek out those that are patients.

[chmski]

I went to the to Vitals and Health Grades to do a quick check.  Found something I have never seen before.  On one there was no mention of any sanctions and that Dr. R was board certified in three states and currently practicing in a fourth.  The other showed he had lost his license in two states and assumably still not able to practice in NC.  Just thought you might want to know.

[chmski]

Thank you again for your reply.  I will immediately research the other physicians and let you know what I find out and/or decide to do.

[selmaS]

  No worries.

No I am not a medical professional, but since having Chiari have bcome a professional at researching this.....

There is a Chiari Dr in NC that may be able to offer u insight or head u in the  right Direction as he will know other NS's and know who, if not himself would be good for u,..Dr Rosner....and there is a Dr Henderson in MD.....both are on our Drs list and I suggest u research both to see which u would want to try for a consult.

[chmski]

Thanks for your interest.  If you have any contacts who can lead me in the right direction, please don't hesitate to let me know.  Are you a medical professional?

[selmaS]

  It does seem many of us with spine and brain issues all get the run around.... sorry, I hope u can get answers, in the meantime do try and rest and drink plenty of water.....some caffeine can also help if u do have a leak to help it seal.

Keep us posted.

[chmski]

Of course, I asked about the “seroma” and “pseudo...” discrepancy.  Those were between the radiologists.  both NS called it a GP.  I, of course, researched both.  It appears to me that seromas are a result of surgery in soft tissue; kidney replacement or other surgery, liposuction, breast reduction or cancer surgery, and a few others that I can’t remember anymore.   To me, there was no relationship of one to the other.  It seemed that the NS were closer than the radiologist.  He did what he could to show the dural tear couldn’t be found, but wouldn’t admit there was NO such thing as a “spontaneous” seal.

I have considered that I should go to another NS, but I’d have to reveal that I have gone to these other doctors.  And, those guys were either employed by, or medical school graduates  of the top 10 (USN&WR) programs.  You can see what I’m up against.

I will need to send letters out to a few of the other big NS to ascertain their knowledge in, and knowledge of this situation,

I can’t help how many others have gotten this runaround.
  

[selmaS]

  Ok...yes I have heard about that, it was a while back and I think the person had a issue as a result too....hmmm

Makes no sense since if it  is a "seroma" there still is treatment to try and they are doing nothing....

have u tried going to a diff NS for another opinion?

[chmski]

BMP refers to bone morphogenic protein.  Apparently, BMP, commonly used to encourage bone growth.  Problem comes when it was used "off label" and can cause unrestricted bone growth.

Two radiologists dealt with this issue.  The first bumped into the GP on the way to the dura and said the fluid was CSF.  He stopped and made arrangements for me to go to a hospital with more sophisticated equipment and the most experienced radiologist in the five county area.  That radiologist did a puncture in the cervical area and took three cat scans over a 4 hour period to find a leak.  He could not find a leak and decided to call this structure a "seroma".  Neither of these dr's nor the NS biopsied or investigated the content of the fluid, but both NS called it a pseudomeningocele.  

I believe nobody wants to deal with it and just told me it's nothing.

[selmaS]

  Hi and welcome to the Chiari forum.

With many of us, a pseudo can form when the dura is opened and it develops a leak.....

There are NS's that wait to see if the leak will seal on it's own, however u have  quite a large one that is causing u issues....so I do not know what they do not try a Blood Patch....

If the Blood Patch  does not work surgery to close the dura is an option,..which can still lead to other issues....this is not a minor surgery...as u r dealing with the spinal cord and the dura....

  Not sure what u mean my BMP???

Was ur Dura opened surgery and if so what type of patch was used?