Discussions By Condition: I cannot get a diagnosis.

Back Surgery Feb '07 caused internal fluid sack that tests Negative for Spinal Fluid

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • September 25, 2007
  • 06:24 PM

I am a 42 yr old Female. I was involved in 3 major car accidents (none of which I caused) and have had multiple surgeries on my lower back because of this. Prior to the surgeries I tried Physical therapy, Pool therapy, Massage therapy, Chiropractic care, Accupuncture, Epidural blocks and Radio frequency nerve stimulation in my back. I saw an Osteopathic Physician who did manual spinal manipulation and also used a machine called a "DRS SYSTEM" which was supposed to help with disc decompression and the nerve pain caused by it. Before having another back surgery we would try the various therapies I listed above again to try to avoid surgery...but they never really helped & I ended up having surgery again.

July 21, 1988 was the 1st car accident. This did not affect my back but caused a problem with my ribs on the left side of my chest and caused a cyst to develop on my pancreas. Sept 1991 I had a Partial Pancreatectomy for a Cyst Adenoma (which contained pre-cancer cells). The last 1/3 of my pancreas was removed. The cyst most likely formed because of the impact of the crash to my left front chest wall. Over the 3 years it took them to figure out what was wrong the cells in the cyst began to change & became pre-cancer cells... if left alone I would have developed full blown Pancreatic Cancer. During this same surgery I also had a Total Splenectomy(due to blood supply). It took a long time for them to find the rib problem which was caused by hitting the steering wheel with my chest (yes...I was buckled but I am short and the car didn't have an airbag). The hit caused a fracture in the cartilage on my left front ribs. Because it was cartilage they could not see it on any of the imaging tests they gave me. Finally in November 1998 (ten years after the car accident) I was sent to Johns Hopkins Hospital in Maryland were a pain specialist diagnosed me with Slipped Rib Syndrome (also called Painful Rib Syndrome)and set me up with a surgeon. This causes your ribs to "pop" out of place & hit bone to bone with any type of movement. Even just breathing or coughing can make it hurt. In April 1999 I had a Partial Rib Resection to remove the mass of tissue that surrounded the original fracture that collected there over the years as it improperly healed. Even though they finally found the problem that was causing my chest & upper back pain (the pain in my chest also radiated to my upper back near my left shoulder blade) and corrected it with the surgery I still have rib pain there. They told me that your nervous system has a "memory" and since the damage was there for so long my body acts like it was never corrected.

January 2001 was the 2nd car accident and in April 2002 I had a Microdiscectomy (in my low back) at level L5-S1 for a ruptured disc. (After this surgery I healed properly and had NO problems with fluid collections.)

In November 2004 3rd car accident and in Feb 2007 I had a L5-S1 Microdiscectomy revision. This was were the problem began. I began to get pain in my back again & when they did a MRI they saw a fluid collection. 5/2/07 Had fluid collection drained. 6/4/07 had another MRI found that the fluid recollected. The doctors believed that the fluid was spinal fluid (even though the lab tests came back negative) and called this fluid collection a Pseudo-Meningocele because it was not in the proper place (at the base of the spine) but they felt the problem could be fixed if they went in surgically and removed the fluid sac and the surrounding tissue and stitched it up nice & tight in there so it would be able to heal properly together. On 6/6/07 I had Surgery again and they did this.

By 7/7/07 the same pain was back again so they did a MRI & again drained the fluid that they found. By the end of July the pain returned and became so bad that on 7/23/07 they again went in surgically to remove the fluid sac & remove the surrounding tissue & stitched it together tightly so it could heal. This time they also put in a surgical "patch" (glue) and patched the areas near my spine that they thought may be leaking spinal fluid. This time I spent 8 days in the hospital because they also put in a spinal drain to keep any fluid away from the area as it healed. They removed the drain once things in there began to heal properly. By mid August I started to feel that old familiar pain again and after a few weeks another MRI showed the fluid once again. On 8/30/07 I had the fluid collection drained. They also did a myelogram and did a nuclear med study over a 2 day period to try to see exactly where the fluid was coming from, the tests were inconclusive and did not show them were the fluid was coming from.

You should also know that every time they drained the fluid or surgically removed the fluid they sent it out to be tested for spinal fluid... EVERY TIME it came back NEGATIVE for spinal fluid. This last time they drained it they also sent a sample to be tested for any other kind of fluid that they thought it could possibly be.. ALL tests came back and all were negative for whatever they tested them for.

At this point they have no idea what this fluid is and cannot find a spinal leak. The pain caused by the collection of fluid sitting on the nerves near my spine causes EXTRERME pain in my low back & legs. It gets so bad that at times I can't even move or walk. I am on all kinds of narcotic pain meds and also on Neurontin to try to help the nerve pain and even though they help I am in constant, excruciating pain. The level of meds they have me on is the highest amount they feel comfortable with putting me on while I am home ...if it gets worse I will have to be put in the hospital for pain control.

My Neurosurgeon has contacted at least 10 other Neurosurgeons for consultations. He has also had the help of many Radiologists and Intervention Specialists (the doctors that do Angioplasty- they are the doctors that drain the fluid sac) and many labs throughout the country have tested the fluid with no helpful results. It has even been sent several times to the Mayo Clinic for testing. The lab at the Mayo Clinic told my Neurosurgeon that the test that is available to check for spinal fluid ONLY works if the fluid is PURE spinal fluid. If it is not pure, say for instance there is cell fluid mixed with it, then the test will come up negative. All the Doctors that have been working with me seem to still believe it is spinal fluid even though they can't trace the origin of the fluid.

I am scheduled to have the fluid collection drained again this Thursday. They are also going to wrap an Abdominal Binder (kind of like a giant ace bandage) around the area they drain to see if the compression helps to keep the fluid from recollecting again. I guess it's worth a try. This should buy me a couple of weeks with less pain and will give my Neurosurgeon and his team a chance to go over my case with yet another doctor for a 'fresh eye' into my situation.

If anyone has any ideas as to what this fluid is and why it keeps accumulating please let me know. I would really appreciate any help.

Thank you~~~

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