You can read the rest of this journey here and here.
Well, I met with my neurosurgeon last week. I was glad my husband was able to go with me. He didn’t get to go with me to review the MRI results, so I think he felt a little out of the loop.
He went over the results of my PET CT and the tumor on my sciatic nerve is “active” but not cancerous. We were expecting to hear this, but it was comforting news nonetheless. He recommended that I get the tumors compressing my spine removed first, so that’s what I’ll be doing. I am really glad that he is able to work with my schedule and has okayed waiting until December to remove the tumors on my spine. It’s just about impossible to take off from school. December 19th is the day. He told me I’d have to spend about 5 days in the hospital. I just had no idea that I’d have to be there for so long.
Until recently, I thought my nf was more superficial. I thought all my tumors were just beneath my skin, outpatient surgery type stuff. I’ve never had any type of surgery or hospital stay. All this is so new for me. I’ll be glad to get it taken care of. After I get the tumor from my sciatic nerve removed (this summer, most likely), things will hopefully be getting back to normal!
I too have NF, January 19, 2005, I had a tumor removed from my spine. It was compressing my spinal cord as well, at T10. I gave birth to a sweet little girl 6 days shy of a year later. I had MRI, every 6 months to watch for new growth. In September of 07, I had a clean MRI, was given the OK to try for baby #2. Just as a caution my NS wanted a scan 3 months later, I waited four until January of 08. Another tumor was found, along with one in my chest wall. It was DEVASTATING. The NS team in my town at the time, weren't comfortable doing the surgery I need. They sent me to Dallas,Tex where I underwent my 2nd spinal surgery and chest surgery in 2 years. It was a very hard time, but now I have 2 beautiful children. I'm telling you all this because I've been there, I'm on the other side now. It will get back to normal. I will keep you in my prayers, and ask that my family does as well. If you have any question, I will be more than willing to answer.... if I can... PS.. Like you, I thought it was superficial NF.
ReplyDeleteThank you for commenting! It's really nice to hear from someone dealing with the same types of things (although I don't wish this on anyone.) I'm so glad everything has worked out for you in the end. I definitely will get any MRIs my doctors order. Like you, I want to get everything taken care before we start having kids (which will still be a while.) Are you in Texas? I live near Houston and am going to MD Anderson. I will certainly let you know if I have any questions. Thanks so much for your comment and for offering support. It really means a lot!
ReplyDeleteWe are in Portland, OR now! We moved here last June, for my husband job. MD Anderson as you know, is great. I can't stand my NS here. I saw him last week, and walked away crying. The two I had before him I loved. I'm not due for another MRI for 5 more months, so I can take a deep breath. I came across your post on McMama's community. Your post came up, on the side bar and I had to follow the link. Not many people have been through this. You asked what you need at the hospital... If the tumor is in the spine canal like mine was I had to lay flat on my back for 36 hrs. I'm not going to sugar coat this, it hurts like HELL. The biggest thing you need is support (which it appears you have). Socks and personal items are nice, but books, mag or music not so much:)!
ReplyDeleteYikes! Laying flat for 36 hours does sound terrible! Hopefully I won't have to do that? Mine are at C2, so I don't know how exactly it will be different. I'm sorry you don't like your NS, any chances of getting a different one? Again, thanks for all the advice and for sharing your experience!
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