This past week I had two scans: 1) of my chest and 2) of my pelvis.
I had the scan in my chest because I have pulmonary nodules. I am supposed to get them checked every 6 months.
At the end of June, though, my chest started feeling really tight. I saw my pain doctor about it, and when she felt around my ribs, she felt a squishy type bump. So she had me get a chest x-ray but nothing came up. I didn't worry about it because I knew I'd be getting this chest CT eventually.
However this week I have felt like an elephant has been sitting on my chest. I can't really take in deep breaths. So I was extra glad to get that CT done! Perhaps my husband got me sick- he had a similar feeling in his chest last week.
Anyway, I'm more anxious about my pelvic MRI.
My last pain spell, which lasted from June 20th until July 3 really took a toll in me.
This was different from my other fits of pain. It was REALLY strong, and it lasted a REALLY long time. At one point I cried. I don't cry with my pain usually (though i did before I had surgery on my left retroperitoneum). I've also felt different since then. I feel like something is inside my hip bone- something nagging. I've never felt that before.
As I said in my last entry, my pain has also MOVED. It used to be centered between my pelvis and my leg, but now it goes from the top part of my leg to my back, but it has centered on my right hip. It's consistent with the ilio inguinal damage I've written about on here before.
Whenever I move now, I feel something weird in my hip/back. Also, for my last period, when I am usually bloated and in a lot of pain, I just bled. No pain. No bloating I found that odd. My doctor said something like I perhaps bled but didn't ovulate...but I don't know what that means. I mean I know technically what it means but I don't know what it means for my BODY. I am 100% not pregnant- if I am pregnant it would be of immaculate conception. TMI alert- my husband and I do not have sex. It's unbearably painful- it has been for years. (another thing no doctor will help me with because their excuse is that I am small- it's so ridiculous- I think I have nerve damage but like I said nobody is helping me! I was told to get a nerve entrapment shot to see if that does anything, but that's a big decision for me to block my nerves- it COULD be permanent and do NOTHING to help me!)
I saw the doctor I mentioned in the previous paragraph a few days after I wrote my last entry (though I forgot to post the entry to my FB page) and she said if the MRI doesn't show anything on my ovary or surrounding tissues, that I 'll have a bone scan, but she seems to think something is wrong with my ovary and is concerned that the pain has moved and that my last period came with no pain.
When I had my MRI yesterday, something strange happened. They stopped my MRI in the middle of it to talk to a doctor about the images! They had me stuck in the tube for a LONG TIME. Then they gave me the contrast and finished it. I have never ever in my life experienced MRI techs stopping my scan to get a radiologist in. I am always told a radiologist would look at it in 24 hours, never were they called in during my scan. So I'm worried. I'm also MAD that they didn't tell me they were stopping the scan for a while. They could have let me OUT of the tube, but instead they kept me in there with two heavy magnet antennas on my belly. The hospital where I did this just got #1 Hospital in the Nation from US News and World Report... really though? Whatever. [[[tangent rant 1) their hospital linens smell DISGUSTING (something to do with the detergent they use) and so do their rooms, compared to Brigham and Women's hospital and 2) for my PET scan last summer the IV nurse attempted to poke me with SHAKY HANDS and now they leave me stuck in an MRI machine.....best hospital for SURE]]
My hope is that this is just an NF tumor that has exteneded to my spine. This is normal with people with NF. A scan that shows nothing will really really really upset me. Why else then would I be in so much pain? Why else then would a full bladder or colon hurt me? Why else then can I not move when the pain comes? I swear this kind of pain makes me crazy. When my last tumor grew I also thought I was going crazy. I kept being told the pain was IBS and I was stressed blah blah blah. For this, I think nobody is really taking me seriously and that they are just medicating me without getting to the root of the problem! It's frustrating.
This morning as I was peeing (sorry), some muscle within my pelvis felt like it was tearing it hurt so badly. I can't even describe it really! Tearing is the closest I can get. So I took 2 oxy (I took today and yesterday off from work for this pain) and I pretty much slept all day.
I now just have a nagging feeling in my side and in the lumbar muscle of my back. And a weird nagging cough. Sometimes I can't even yawn. I can't get comfortable sleeping at night because it hurts to lie on either side.
So this is not fun. Not fun at all. I just want answers goddammit!
I had the scan in my chest because I have pulmonary nodules. I am supposed to get them checked every 6 months.
At the end of June, though, my chest started feeling really tight. I saw my pain doctor about it, and when she felt around my ribs, she felt a squishy type bump. So she had me get a chest x-ray but nothing came up. I didn't worry about it because I knew I'd be getting this chest CT eventually.
However this week I have felt like an elephant has been sitting on my chest. I can't really take in deep breaths. So I was extra glad to get that CT done! Perhaps my husband got me sick- he had a similar feeling in his chest last week.
Anyway, I'm more anxious about my pelvic MRI.
My last pain spell, which lasted from June 20th until July 3 really took a toll in me.
This was different from my other fits of pain. It was REALLY strong, and it lasted a REALLY long time. At one point I cried. I don't cry with my pain usually (though i did before I had surgery on my left retroperitoneum). I've also felt different since then. I feel like something is inside my hip bone- something nagging. I've never felt that before.
As I said in my last entry, my pain has also MOVED. It used to be centered between my pelvis and my leg, but now it goes from the top part of my leg to my back, but it has centered on my right hip. It's consistent with the ilio inguinal damage I've written about on here before.
Whenever I move now, I feel something weird in my hip/back. Also, for my last period, when I am usually bloated and in a lot of pain, I just bled. No pain. No bloating I found that odd. My doctor said something like I perhaps bled but didn't ovulate...but I don't know what that means. I mean I know technically what it means but I don't know what it means for my BODY. I am 100% not pregnant- if I am pregnant it would be of immaculate conception. TMI alert- my husband and I do not have sex. It's unbearably painful- it has been for years. (another thing no doctor will help me with because their excuse is that I am small- it's so ridiculous- I think I have nerve damage but like I said nobody is helping me! I was told to get a nerve entrapment shot to see if that does anything, but that's a big decision for me to block my nerves- it COULD be permanent and do NOTHING to help me!)
I saw the doctor I mentioned in the previous paragraph a few days after I wrote my last entry (though I forgot to post the entry to my FB page) and she said if the MRI doesn't show anything on my ovary or surrounding tissues, that I 'll have a bone scan, but she seems to think something is wrong with my ovary and is concerned that the pain has moved and that my last period came with no pain.
When I had my MRI yesterday, something strange happened. They stopped my MRI in the middle of it to talk to a doctor about the images! They had me stuck in the tube for a LONG TIME. Then they gave me the contrast and finished it. I have never ever in my life experienced MRI techs stopping my scan to get a radiologist in. I am always told a radiologist would look at it in 24 hours, never were they called in during my scan. So I'm worried. I'm also MAD that they didn't tell me they were stopping the scan for a while. They could have let me OUT of the tube, but instead they kept me in there with two heavy magnet antennas on my belly. The hospital where I did this just got #1 Hospital in the Nation from US News and World Report... really though? Whatever. [[[tangent rant 1) their hospital linens smell DISGUSTING (something to do with the detergent they use) and so do their rooms, compared to Brigham and Women's hospital and 2) for my PET scan last summer the IV nurse attempted to poke me with SHAKY HANDS and now they leave me stuck in an MRI machine.....best hospital for SURE]]
My hope is that this is just an NF tumor that has exteneded to my spine. This is normal with people with NF. A scan that shows nothing will really really really upset me. Why else then would I be in so much pain? Why else then would a full bladder or colon hurt me? Why else then can I not move when the pain comes? I swear this kind of pain makes me crazy. When my last tumor grew I also thought I was going crazy. I kept being told the pain was IBS and I was stressed blah blah blah. For this, I think nobody is really taking me seriously and that they are just medicating me without getting to the root of the problem! It's frustrating.
This morning as I was peeing (sorry), some muscle within my pelvis felt like it was tearing it hurt so badly. I can't even describe it really! Tearing is the closest I can get. So I took 2 oxy (I took today and yesterday off from work for this pain) and I pretty much slept all day.
I now just have a nagging feeling in my side and in the lumbar muscle of my back. And a weird nagging cough. Sometimes I can't even yawn. I can't get comfortable sleeping at night because it hurts to lie on either side.
So this is not fun. Not fun at all. I just want answers goddammit!
:-/ sorry you're not feeling so hot! I hope everything turns out okay...that sucks about having such a long MRI...I really hope I *never* have to have one because I'm seriously claustrophobic.
ReplyDelete