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MommyRissa

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Oct 28, 2012
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State
Oklahoma
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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.
 
My weakness showed up three years before the twitching. I'm sorry but this doesn't sound anything like ALS to me.
 
Truly I am sorry for my insistence on posting here when I have been told that what is wrong with me is not what I fear. My life since July of last year has been difficult to say the least. I have had a spinal surgery or cranial surgery every month for seven months now, due to all the fun complications from the horribly gone wrong first one. I put everything I had mentally and emotionally into the diagnosed of chiari malformation, all the while still dealing with muscle twitching and problems with my right arm and leg. I was so close to letting go, but no matter what I did things would not get better. I just left the hospital three days ago, where my PA noted what he thought was atrophy on the right side of my neck and shoulder. I, of course, instantly panicked and brought up my concerns and fears. All he did was tell me no. No, it's not MS and no it's not ALS. The atrophy, if that's even what it is, could easily be from surgery since I have an scar that runs right down the middle of my neck. But he said that just because something hurts, or because muscles twitch, that doesn't mean it has to be something awful. When I told him about strength testing by lifting up chairs and watching videos online on how to do them properly, he laughed. I have some Diazepam and Baclofen for the spasms, and some cream for the nerve pain. I just don't know how to put this to bed and I feel like a fool. Why can't I obsess over CFS? It's been well over a year since all of this started and the logical half of my brain says, 'you would have lost function of something by now so just stop.'

Thank you all for your kindness
 
I was initially diagnosed with Chiari Malformation Syndrome about 4 years ago. But... it wasn't after a couple of MRIs. But, I remember a conversation with one of the doctors (don't remember now which one it was) him saying that CMS surgery, 'if' successful, the recovery can take a long time AND many times there can be numerous complications. I think that came after I commented something like, "Sure don't want surgery but if it'll fix this... let's do it." I guess the key words were "if" and "numerous complications." Hang in there, it may take some time to completely recover. Your continuing symptoms are probably still related to the CMS surgery.
 
This is my last post but I thought this needed to be said....

I know that answering this part of the forum is extremely difficult for some. I know that some people don't even want it here anymore, and I can understand that. But I think that the problem is that none of us who come here understand anything that those of you who need to be here go through. We do not know, or understand, the trials that you've seen, the pain you've had to suffer, the obstacles you've had to overcome, or the support and peace you need when you come here to meet with your friends. This is your space and you have graciously given a part of it to those who make the mistake of searching the internet for the answers to their health concerns.

You take the time to answer question after question, and really they're all the same. Twitching muscles and the internet sets off a wildfire of panic and we all come running and crying here, looking for answers, looking to you to either save or condemn us with your expertise, not realizing that we are placing an unfair burden on those who are already burdened enough. And then to top it all off, people get the answers they want, or sometimes don't want, and leave without a simple thank you.

I understand that with time it is easy to become jaded by people who use and abuse. I get it and I don't think less of anyone who is tired of playing doctor to people on the internet. You have dealt with drama kings and queens, myself included, who can only get the answers they want from someone with a medical degree who can actually diagnose or dismiss. But still, you provide comfort and relief, and you have for thousands of people. For that I thank you. That is something that only genuine kindness can do, especially when short on patience. I wish none of you had to be here and I pray that one day soon there is a cure. You're all wonderful people and thank you again for taking the time to comfort me when I needed it.
 
Good luck and continued healing Marissa. You have had more than your fair share of challenges as well. Hoping it is clear sailing from now on.
 
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