Post by singlemomjen on Jan 7, 2014 17:51:44 GMT -6
I wanted to post my experience here, as this category only had 5 threads.
I am a 32 year old female. Not so healthy. I have had 5 surgeries in the past 8 years. Previous conditions include thyroid cancer and endometriosis (that required me to have a complete abdominal hysterectomy). My hysterectomy was completed in February of 2012. I do have a healthy 7 year old son. Anyway, about 6 months post hysterectomy I started noticing some numbness in my left foot. This numbness slowly spread up through my left calf and so in late October 2013 I finally went to my family physician. She told me that I could either start physical therapy or she could refer me to a specialist. I chose the specialist (which I am now very grateful for!) as I don't believe in getting treatment until I know what's wrong. I was sent to a neurologist who carried out some nerve testing. Finding nothing wrong, he decided to have an MRI done of my lumbar spine. It was from this MRI that we found the tumor, which barely showed on the MRI because it was located near T11 in my thoracic spine. To me, it seemed like a miracle that they caught it at all (it showed up at the very top at the MRI, and only part of it was visible). My neurologist then referred me to a neurosurgeon.
Now, I know how everyone talks about seeking the best treatment and gathering as much information as possible before seeking treatment. But, I ignored all of that. The minute my neurosurgeon walked into the room, I knew I could trust him. It was just a feeling I had. We looked over the MRI images. Based on the MRI, it appeared that my tumor was simply a nerve sheath tumor. However, there was still a chance it could be a spinal cord tumor or even metasticised thyroid cancer. My doctor stated that we could do a biopsy, but ultimately all it was going to show was weather or not the tumor was malignant. Ultimately, he needed to know what type of tumor I had. He wanted to move to surgery fairly quickly. In a matter of a few weeks, I had 3 MRI's to check the rest of my spine and my brain for additional tumors and then on December 6th I went in for a laminectomy and tumor removal. I was scared to death. I had read other horror stories about those who end up paralyzed. Mind you, I have already had cancer. And I was 1000 times more scared for this surgery than I ever was going through the thyroid cancer!
First accomplishment: waking up! I woke up in the recovery room...groggy, but alive. YAY!
Second accomplishment: I wiggled my toes...an couple feel the cover on my right foot (my left foot has been numb for over a year). So I reached down under the cover and felt my left knee. SUCCESS! No additional numbness!
I was so happy. And there was no family around to tell. But that was ok, because I knew I was ok. So I just drifted off back to sleep. I was awoken by my neurosurgeon who wanted to tell me how the surgery went. He looked somber as he told me that I did not have the nerve sheath tumor we all thought, but instead a spinal cord tumor. And, worst of all, only half could be removed. I was secretly happy that he had not attempted to remove the entire tumor, as I knew that could have resulted in some pretty serious consequences.
I was moved from the recovery room directly to ICU where I could see my family...2 at a time. I stayed in the hospital for 5 days then was released to go home.
Progress has been very slow for me. While in the hospital, I was on Decadron, which is a pretty strong steroid to help with the inflammation. When I was released, they prescribed prednisone to help to ween me from the decadron that I was on. Well, a day after I got home, I started getting sharp, stabbing pains in the arch of my left foot and my left big toe. So bad that I was instantly in tears. So I was put back on the decacron for 2 more weeks, which helped a lot. I was also released with prescriptions for valium and tramadol. I am completely off of the valium (for muscle spasms) but I do still take the tramadol for pain (I don't respond at all to percocet...which is what they wanted to send me home with, so I asked for the tramadol which helps me a lot with pain), and also a walker.
Even so, I still have trouble walking, even with my walker. The biggest problem I had is the feeling of instability I have, in addition to my legs feeling weak and like they are going to buckle if I stand for longer than 5 minutes. I also get a pain in my back at the surgery site whenever I put weight onto my left foot. I have just recently been prescribed neurotin for nerve issues along with lidocain patches for back pain. The patches help, but it will be another 2 weeks until I am on a full dose of the neurotin, so time will only tell if that will help at all.
While in the hospital, the portion of the tumor that was removed was sent to pathology. Unfortunately, the hospital was unable to determine if the tumor was low-grade or grade 2, so it was sent to the Mayo Clinic for further review. It turns out I have a pilocytic astrocytoma. These tumors are more commonly found in the brain and in youth. When found in the brain, they are usually completely removed. Finding them in the spine poses a problem because if they are not completely removed, they can change into a more aggressive, malignant form. So, I was referred to a radiation oncologist to add to my team of specialists who will all work together to plan my recovery. I met with him yesterday and we decided that I will undergo radiation treatment to try to get rid of the rest of the tumor before it has a chance to grow any more.
I have to wait until my neurosurgeon gives me the OK for this and then we will start. I will have 25-28 treatments over the course of about 5 weeks...daily. The oncologist also referred me to a rehabilitation specialist to aid in my mobility.
I'm hopeful that in the coming months, I will continue to recover and will soon be back on my feet! I hope my story helps others.
I am a 32 year old female. Not so healthy. I have had 5 surgeries in the past 8 years. Previous conditions include thyroid cancer and endometriosis (that required me to have a complete abdominal hysterectomy). My hysterectomy was completed in February of 2012. I do have a healthy 7 year old son. Anyway, about 6 months post hysterectomy I started noticing some numbness in my left foot. This numbness slowly spread up through my left calf and so in late October 2013 I finally went to my family physician. She told me that I could either start physical therapy or she could refer me to a specialist. I chose the specialist (which I am now very grateful for!) as I don't believe in getting treatment until I know what's wrong. I was sent to a neurologist who carried out some nerve testing. Finding nothing wrong, he decided to have an MRI done of my lumbar spine. It was from this MRI that we found the tumor, which barely showed on the MRI because it was located near T11 in my thoracic spine. To me, it seemed like a miracle that they caught it at all (it showed up at the very top at the MRI, and only part of it was visible). My neurologist then referred me to a neurosurgeon.
Now, I know how everyone talks about seeking the best treatment and gathering as much information as possible before seeking treatment. But, I ignored all of that. The minute my neurosurgeon walked into the room, I knew I could trust him. It was just a feeling I had. We looked over the MRI images. Based on the MRI, it appeared that my tumor was simply a nerve sheath tumor. However, there was still a chance it could be a spinal cord tumor or even metasticised thyroid cancer. My doctor stated that we could do a biopsy, but ultimately all it was going to show was weather or not the tumor was malignant. Ultimately, he needed to know what type of tumor I had. He wanted to move to surgery fairly quickly. In a matter of a few weeks, I had 3 MRI's to check the rest of my spine and my brain for additional tumors and then on December 6th I went in for a laminectomy and tumor removal. I was scared to death. I had read other horror stories about those who end up paralyzed. Mind you, I have already had cancer. And I was 1000 times more scared for this surgery than I ever was going through the thyroid cancer!
First accomplishment: waking up! I woke up in the recovery room...groggy, but alive. YAY!
Second accomplishment: I wiggled my toes...an couple feel the cover on my right foot (my left foot has been numb for over a year). So I reached down under the cover and felt my left knee. SUCCESS! No additional numbness!
I was so happy. And there was no family around to tell. But that was ok, because I knew I was ok. So I just drifted off back to sleep. I was awoken by my neurosurgeon who wanted to tell me how the surgery went. He looked somber as he told me that I did not have the nerve sheath tumor we all thought, but instead a spinal cord tumor. And, worst of all, only half could be removed. I was secretly happy that he had not attempted to remove the entire tumor, as I knew that could have resulted in some pretty serious consequences.
I was moved from the recovery room directly to ICU where I could see my family...2 at a time. I stayed in the hospital for 5 days then was released to go home.
Progress has been very slow for me. While in the hospital, I was on Decadron, which is a pretty strong steroid to help with the inflammation. When I was released, they prescribed prednisone to help to ween me from the decadron that I was on. Well, a day after I got home, I started getting sharp, stabbing pains in the arch of my left foot and my left big toe. So bad that I was instantly in tears. So I was put back on the decacron for 2 more weeks, which helped a lot. I was also released with prescriptions for valium and tramadol. I am completely off of the valium (for muscle spasms) but I do still take the tramadol for pain (I don't respond at all to percocet...which is what they wanted to send me home with, so I asked for the tramadol which helps me a lot with pain), and also a walker.
Even so, I still have trouble walking, even with my walker. The biggest problem I had is the feeling of instability I have, in addition to my legs feeling weak and like they are going to buckle if I stand for longer than 5 minutes. I also get a pain in my back at the surgery site whenever I put weight onto my left foot. I have just recently been prescribed neurotin for nerve issues along with lidocain patches for back pain. The patches help, but it will be another 2 weeks until I am on a full dose of the neurotin, so time will only tell if that will help at all.
While in the hospital, the portion of the tumor that was removed was sent to pathology. Unfortunately, the hospital was unable to determine if the tumor was low-grade or grade 2, so it was sent to the Mayo Clinic for further review. It turns out I have a pilocytic astrocytoma. These tumors are more commonly found in the brain and in youth. When found in the brain, they are usually completely removed. Finding them in the spine poses a problem because if they are not completely removed, they can change into a more aggressive, malignant form. So, I was referred to a radiation oncologist to add to my team of specialists who will all work together to plan my recovery. I met with him yesterday and we decided that I will undergo radiation treatment to try to get rid of the rest of the tumor before it has a chance to grow any more.
I have to wait until my neurosurgeon gives me the OK for this and then we will start. I will have 25-28 treatments over the course of about 5 weeks...daily. The oncologist also referred me to a rehabilitation specialist to aid in my mobility.
I'm hopeful that in the coming months, I will continue to recover and will soon be back on my feet! I hope my story helps others.