tami
Junior Member
C2-C4 stage 2 intramedullary ependymoma removed 7/31/13 @ University of Minnesota Medical Center
Posts: 9 
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Post by tami on Nov 4, 2013 16:26:58 GMT -6
I had a C2-C4 laminectomy with tumor resection (ependymoma) in late July 2013. Three months later, I still have very, very tight muscles in my neck, shoulders, chest and upper back. I feel like I have been jamming myself into a childs shirt! LOL It's very restrictive.
Has anyone experienced this? If so, did it go away? I am going to PT and OT weekly and have excersizes and stretches to do at home, but it's not improving.
Thanks for any feedback!
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Post by susan on Nov 6, 2013 20:35:15 GMT -6
Hi Tami,
I had surgery at C2 and C3. In also had really tight muscles in my neck and shoulders. I have always had poor posture so when my PT told me I had really nice posture, at first I was like "hey maybe that tumor caused my bad posture" (lol). Seriously, my neck and upper back felt like a board. A different PT did therapy a year later to loosen everything up and allow me to move my neck again. Things are much looser now and I move normally and I have bad posture again.
I have struggled with muscle spasms ever since surgery, but nothing like that first year. Everyone's different but I think you should see a lot of improvement. It just takes a while.
Susan
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Post by jasonohio on Nov 6, 2013 20:50:56 GMT -6
My tumor was a little lower (c4-c6) but I had a lot of tightness at first. Nearly four years later and still have issues with my neck, shoulders, and arms. A couple things have helped me a lot. #1 - the more active I am, the better I feel. I try to keep moving and exercising all the time. #2 - I get massages a lot (and I found a great person with really strong hands).
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Post by leks on Nov 7, 2013 1:26:20 GMT -6
I got this all the time in the first few months after surgery, seems that common. pt and excersise and time should sort that out.
I use to get that tight feeling around my legs feet all the time, hyperband is what mpy surgeon called it, I hated it.
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Post by lw on Nov 7, 2013 10:23:13 GMT -6
Hi Tami,
That tight 'band' type sensation you describe is common amongst the SCT community. I have heard that it affects people with other various neurological conditions, such as multiple sclerosis. Fortunately I don't seem to get that sensation much nowadays, but I got it a lot in the beginning (particularly pre surgery). It's a really horrible feeling and, whilst not especially painful, it is extremely uncomfortable. I used to get it in my chest and around the top of my ribcage on the left side. Sometimes it felt as though my rib bones were going to actually bust through my skin. I guess you are feeling it high up in your neck because your tumour was in the cervical region. Unfortunately I don't know of any medication you can take to combat this other than the regular pain meds.
It is early days for you so I wouldn't worry too much at the moment. There's every possibility that this feeling will fade in time, even if it's several months down the line.
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Post by youngyang on Nov 8, 2013 0:22:01 GMT -6
I think the medical term for this symptom is zonesthesia. I am 5.5 yrs post-op (c4-c5) and still have it (mostly in chest area). It became stronger after the radiotherapy 3 yrs ago, so a doctor told me it may be related to the radiation. It's a bad feeling but seems not create serious problem. And I guess I'm getting used to it.
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Post by pringleman on Nov 12, 2013 5:59:00 GMT -6
Hi Tami, I like the others have and continue to have the tight muscles that you describe. I had a T2- T5 ependymoma removed last May and am about to have two regrowths removed. I find four things help me:
1. Regular exercise - walking as much as I can (need to get the balance right between too little and too much as both increase the tightness) and then stretching.
2. Magnesium powder - I take 244m g as amino acid chelate and another 36 as Magnesium oxide
3. Clinical pilates - every day
4. A good sports massage once a week to loosen the muscles.
If I forget any of these I tighten up and it takes days or weeks to sort it out. Regular and often seems to be message.
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Post by funnywalk on Nov 12, 2013 16:53:07 GMT -6
Has anyone had any success with iodine for this symptom? The tightness is enough to drive us crazy....
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Post by kathyb on Dec 11, 2013 20:36:44 GMT -6
Where do you get your magnesium powder? Can you get your kind on-line? Does it help with the big C (constipation). I am taking so many pills I call myself a walking pharmacy. I want off of them. I am trying to cut my work schedule down. I still don't have my giant snow globe plugged in out front or my tree decorated. Don't know where to fit Pilates in. I really want to start working my yoga back in and hope to try 1x week and build up. I feel that if I don't devote my life to manage my symptoms, I take medication (tons of it) just to get thru the day. I can't wait to slow down!!!!!!
Please let me know about the mag......Has anyone tried the electrodes for pain management/muscle relaxation? I tried a few times, but the tightness comes back. I am not exactly sure if I am doing it right. If feels pretty good while the electrode is on:) Sometimes I feel if I can just get the tightness to go away, the pain may follow.
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tami
Junior Member
C2-C4 stage 2 intramedullary ependymoma removed 7/31/13 @ University of Minnesota Medical Center
Posts: 9
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Post by tami on Aug 16, 2014 22:57:25 GMT -6
Ok, so I am one year post surgery now and my pain is not better. In some ways, it's worse. I have tried numerous medications, massage, acupuncture, electrical stim, and nothing has worked yet. I will be asking my doctor about Botox injections when I see him next week. I don't know what else to try. I don't want to live the rest of my life in this much pain and with this much restriction. I am unable to work, unable to drive, and just doing small things like showering or folding a load of laundry makes the pain worse and causes me to be exhausted. Any ideas of treatments I haven't mentioned?
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