MommyRissa
Active member
- Joined
- Oct 28, 2012
- Messages
- 35
- Country
- US
- State
- Oklahoma
- City
- Oklahoma City
I'm not sure if any of you remember me or not, but I have been here before. I hope you all had happy holidays.
When I first came here it was because I had what I thought was right side weakness. I in fact had none, but I did have pain and twitches. After quite a few tests I was diagnosed with Chiari Malformation. I was told that was the cause of all of my symptoms and only surgery could correct it so in July of 2013 I had my first decompression surgery. It was a disaster and two additional 'decompressions' later I was even worse off. I then had to have two cranioplasties to correct the decompressions and spent almost every month until December in the hospital. While I was there though I seemed to be okay. I still twitched but not half as much and my pain was okay with my right arm and hand, though I was on heavy doses of pain medication.
I was finally released on the 21st of last month. I haven't been home very long, but I'm having the worst bout of twitching and pain ever since this all started. My twitches are either hard thumpers that are induced with any movement of my arms, or they are constant fine 'shudders' in all of my limbs. It's quite a chore to do anything strenuous with my right arm and my hand has started to cramp just holding my phone for a minute or two. I have constant spasms on my right side. My right leg and arm are always cramped and ache all day. I have the tingles still and the numbness. But the thing that freaks me out the most is my neck. On the back of it I have a scar that runs right down the middle. To the left the muscle is soft and doesn't hurt. To the right the muscle is flat and hard, and very sore. My home health nurse can even see the difference. I don't know if that's just a messed up muscle, something surgery related, or what. I won't say it's atrophy.
So in my mind all of these things point to something bad, the worst. I still haven't been able to let it go. I did for a little while in the hospital but these past few weeks have really made me feel insecure. I don't think I've lost any strength. I try to carry things with my right hand just so I feel better, even though I regret it almost immediately. Just earlier tonight I was able to pick up the dining room chair and lift it a few times like it was a dumb bell. Was that the smartest idea? Probably not because I'm paying for it now with an arm that I can't lift over my head. I can still stand on my toes, walk heel to toe, do all my fun little finger strength tests, and get around alright. I try to reason with myself that if I take the twitches out of the equation then who knows what's going on. I try to tell myself that I just got out of the hospital and have gone from doing absolutely nothing to doing everything. I try to tell myself that if it was the worst possibility than I would have known a long time ago. I'm just very disheartened right now and I don't know who to talk to. I see my neurosurgeon's PA soon and I plan to address all of this with him, but I'm kind of afraid to.
Dx List-
Carpal Tunnel - 11/2012
Pinched Nerve in Shoulder - 11/2012
Fibro - 11/2012
All dismissed by first neurosurgeon for a diagnosed of Chiari 07/2013
Does what I've shared sound like progression to you? I know doctors have the answers, but you all have the experience. Everybody is different and if I'm never going to get a break from pain and trouble with my body then I want to know. If I sound like a fool then please tell me. Thank you.
When I first came here it was because I had what I thought was right side weakness. I in fact had none, but I did have pain and twitches. After quite a few tests I was diagnosed with Chiari Malformation. I was told that was the cause of all of my symptoms and only surgery could correct it so in July of 2013 I had my first decompression surgery. It was a disaster and two additional 'decompressions' later I was even worse off. I then had to have two cranioplasties to correct the decompressions and spent almost every month until December in the hospital. While I was there though I seemed to be okay. I still twitched but not half as much and my pain was okay with my right arm and hand, though I was on heavy doses of pain medication.
I was finally released on the 21st of last month. I haven't been home very long, but I'm having the worst bout of twitching and pain ever since this all started. My twitches are either hard thumpers that are induced with any movement of my arms, or they are constant fine 'shudders' in all of my limbs. It's quite a chore to do anything strenuous with my right arm and my hand has started to cramp just holding my phone for a minute or two. I have constant spasms on my right side. My right leg and arm are always cramped and ache all day. I have the tingles still and the numbness. But the thing that freaks me out the most is my neck. On the back of it I have a scar that runs right down the middle. To the left the muscle is soft and doesn't hurt. To the right the muscle is flat and hard, and very sore. My home health nurse can even see the difference. I don't know if that's just a messed up muscle, something surgery related, or what. I won't say it's atrophy.
So in my mind all of these things point to something bad, the worst. I still haven't been able to let it go. I did for a little while in the hospital but these past few weeks have really made me feel insecure. I don't think I've lost any strength. I try to carry things with my right hand just so I feel better, even though I regret it almost immediately. Just earlier tonight I was able to pick up the dining room chair and lift it a few times like it was a dumb bell. Was that the smartest idea? Probably not because I'm paying for it now with an arm that I can't lift over my head. I can still stand on my toes, walk heel to toe, do all my fun little finger strength tests, and get around alright. I try to reason with myself that if I take the twitches out of the equation then who knows what's going on. I try to tell myself that I just got out of the hospital and have gone from doing absolutely nothing to doing everything. I try to tell myself that if it was the worst possibility than I would have known a long time ago. I'm just very disheartened right now and I don't know who to talk to. I see my neurosurgeon's PA soon and I plan to address all of this with him, but I'm kind of afraid to.
Dx List-
Carpal Tunnel - 11/2012
Pinched Nerve in Shoulder - 11/2012
Fibro - 11/2012
All dismissed by first neurosurgeon for a diagnosed of Chiari 07/2013
Does what I've shared sound like progression to you? I know doctors have the answers, but you all have the experience. Everybody is different and if I'm never going to get a break from pain and trouble with my body then I want to know. If I sound like a fool then please tell me. Thank you.