Since December 2011 they thought I might have a MPNT or some kind of Peripheral Nerve Sheath Tumor such as a Neurofibroma on my right sciatic nerve in my thigh. I even had to relocate from Albuquerque, NM to Dallas, Texas to find a specialist who dealt with my rare situation. After being in Dallas Texas for a year and being misdiagnosed for a long time...I went paralyzed in March 2013. The doctors
were finally forced to take action and remove this thing.....However....it was not removed! The Neurosurgeon performed the surgery on March 27, 2013 and after getting a pathology test they found that they were dealing with an AV Malformation. This Neurosurgeon still ended up telling me that he removed a TUMOR and that it had varicose veins and blood clots on top of it, causing it to cut the nerve off and hence causing me to be monoplegic or paralyzed in only the right lower extremity. I was told they did not expect me to ever walk again but that was before they went in and found the AVM. I was so confused because I was still feeling PAIN and the same symptoms that I was before I went paralyzed or had the surgery and my Neurosurgeon kept telling me that it was due to the surgery on that nerve....WRONG!!!! After all that happened and an MRI before and after the surgery by this Neurosurgeon....He knew what was going on and undoubtedly knew this was still a problem and he had not removed anything like he said or showed me photos of. So NOW...I have moved close to Knoxville,Tennessee and am being seen by an Oncologists and Radiologist Group at Vanderbilt Medical Center in Nashville, TN. After three recent MRI's....and the results of the pathology report from Texas, they have came to the conclusion that I have an AV Malformation wrapped around my sciatic nerve. They tell me it is an overgrowth of blood vessels that inflame or fill up with blood and since it is intertwined with my sciatic nerve in my thigh region, it causes the excruciating pain and partial paralysis at times. It also is considered as a Nerve Injury. They tell me I have more and likely had it since birth and it grew with me and just recently started showing its ugly self. I have been given two options for treatment...My Oncologist Dr. Halpern, tells me that she can operate and remove the part of the sciatic nerve that is affected and that this can cause me to go paralyzed below the knee and lose sensitivity and function, however that there is a brace that can help me learn to rehabilitate. The other option is from Dr. Baron with Radiology Intervention and he says he can do these treatments called Sclerotherapy. The only thing is he says he has never done this treatment on an AVM that is intertwined with a major nerve or has even been on a nerve. He says he is use to doing it more in the muscle area or subcutaneous fat. He told me a few side effects with the ones he has done but could not really guarantee anything in my case and says he doesn't know if it will even work. One of the side effect with this is that it causes inflammation and swelling in the injection site. Now this being on and around my nerve, this is a big problem because that is what causes me to be in so much pain and caused me to go paralyzed in the first place. So after Dr.Baron spoke with Dr. Halpern about the risks and which one may have more risks, they have decided that both of these procedures have the same risks....Loss of sensitivity and loss of function below the knee. With the injections/sclerotherapy, I would have to do this in treatments and several at that...possibly for the rest of my life and it is a possibility it not even work. With the removal through surgery, it would be one surgery and they would be removing it...Done! Straight to the point! Now with both there is a possibility of this recurring however more so with the injections where the part of the sciatic nerve will be gone so if it did recur then it would be on another part of the nerve that has not been removed. I REALLY WOULD LIKE SOME FEEDBACK HERE ON WHICH ONE YOU WOULD PICK IF IN MY SHOES AND INFO IF ANYONE KNOWS ANYTHING ABOUT ALL THIS. I AM FEELING SCARED AND ANXIOUS. PRAYERS PLEASE. https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=LJCZN2QKUUVCN
Click on the link above if you can donate to" Please Help Bridget." It will allow you to choose how much you can donate. Her family really needs your prayers and support. You can donate through the PayPal link above if you would like to help in any way. Thank you all and God Bless. If you need to contact us we can be reached at [email protected]
