Tightness and Numbness

[Shirley]

Hi Everyone,
I am 6 months out from having an intramedullary tumor removed from C4 to C7.  Since the surgery I have been numb from the chest down.  I can walk but seem to tire easily.  I can't drive as I cannot feel the pedals.  My main problem since surgery is the tightness from my chest down to my toes.  It feels like I am in a tight tight girdle.  It gets worse when I get stressed or try to exercise.  So tight that it is hard to move around.  My surgeon said it could take up to a year for healing...but no guarantees.  Does anyone else have this?  Is there a name for this tightness?  I am getting concerned as it is 6 months and I really haven't seen much change.  I do not take any medications.  Any help would be appreciated.  

[mateo]

Hi Shirley,

I get that tightness feeling in my left leg around the knee. Ive been told my quads are still weak which is causing the issue. I also believe it's neuromuscular meaning the nerves are still healing. I am 15 monhts post op. I notice the tightness when i sit down then stand up and start walking. It seems like it takes me about 10-20 steps to get a good rhythm when walking. I think my right leg compensates since it's stronger and my dominant leg. I take gabapentin for nerve pain which i get the tingling and heaviness in my quads and feet. It seems to help. I take a pill in the morning then one in the mid to late afternoon. I'm sure things will start improving for you soon. It takes about a year to make a general recovery from this surgery. I for the most part am better however I do need to continue to strenghen my muscles. About a month ago I started seeing a chiropractor and it seems to loosen up the back and legs. Stretching is really helpful too! Sorry for the long winded response. I hope you've seen improvement since your last post.

[dana]

49-year-old woman who is undiagnosed and needs help. Over the past three years I have been seen by four neurologists who scratched their heads and gave me no diagnosis. Other doctors have tried to convince me that my problem is in my head. Meanwhile my symptoms have gotten a lot worse. Now, I am extremely weak: from a woman who, until half a year ago, was going five times/week at Yoga, I have become someone who can barely stand on her feet. My legs, especially, feel very strange and weak. I am only able to do physical therapy now and even that for no more than 15 minutes. My legs feel as if they are made of wood, very strange. At night--every night!--both my hands and feet are getting completely numb, and during the day I have constant weird sensations in my body--burning sensations that move all over, and a feeling as if I am being touched with a cold/wet tip in various places. I have no pain as such--well, actually I do: the muscles in my lower back, the soles of my feet and sometimes the knees--but I am in great discomfort constantly. Also, I have been dizzy since mid-April and have severe insomnia. I would greatly appreciate it if any of you could tell me if my symptoms could be a sign of a spinal cord tumor. Someone told me that I would me in much greater pain if I did have a tumor, but judging from what I read on this site it doesn't always seem to be the case. If any of you would like to send me a private message or call, please let me know.

[frazier]

I had a ependymona removed 5 or so years ago in the same cervical area as you.  I was seriously taunt and it would take my breath away to even move I was so tight.  The right side was very rigid and I would lean and felt all twisted.  I still wake up gasping for breath while I sleep.  I can move a bit better but that tight feeling from my throat down is horrid. It is hard to eat later in the day as everything seems tighter as the day goes on. I take baclofen, gabapentin, warm showers, stretch and sometimes I just can't move as it leaves me so dam tired.  I've been thinking about seeing a neuro dr to have botox treatment as this is what Jallo said to do. It helps with spasticity which is why you have this tightness.  Something to due with the affects of the surgery and injury to the spine. stretch and keep on trucking is my advice and see about botox and baclofen

[pringleman]

Hi Shirley,

I think the others have covered most of the points but i will add my two cents worth.

I still get the tightness around the chest that you speak of as well as numbness tightness etc in my legs. It is definitely worse when I have been stationary. So for me the worst time is getting up out of bed in the morning. Just straightening my leg in bed causes me to spasm. After being up for a few hours it improves. But only if I am active. Every morning, once I am up and can walk I eat an orange (will come to why in a moment) and then go for a walk ~1000 steps (Just did a few more steps to keep me going).

Now to the thing that I think is key to the chest tightness. This is something that most spinal injured people seem to have. Someone at the hospital called it some kind of belt. Having lived with this for 4 years now I am certain that most of the feeling is due to the digestive system not working properly or as quickly as previously. This results in a build up of gas which fights the already tight muscles causing them to tighten more.

So I now avoid foods that cause the gas: onions, garlic, mushrooms, all stone fruit, sherry, sweet wines, any lactose, cabbage, apples.

It is a horrifying list and some foods I feel is worth a little pain - for me one is pesto.

The other thing is to take magnesium. This helps the muscles recover. I think we all have to continually work at building muscle strength and flexibility. So being active and stretching and getting massage (lie on a tennis ball is a good cheap way of getting a massage. Move it around to all the sore points.)

Things seem to improve gradually over time too.

Keep smiling, ; )

PG

[pringleman]

I forgot to add that the orange in the morning speeds up the digestive process without the need for laxatives.

[dawn]

I a 3 months post op from C1-C2 intramedullary removal. I have the tightness (I call it banding) around my ribs, right arm and both legs from knees to toes. I do take Baclofen and Lyrica which helps. I have found a physical therapist who does "muscle energy" work and craniosacral work which alleviates the banding completely for awhile - usually a day or two if I am lucky. It does come back but the trend is a gradual lessening of the intensity. I recommend kissing lots of frogs until you find you prince therapist who has effective ideas about working with these symptoms. What works for one may not work for another. I have found that there are answers if we stay curious and hopeful.

[dave37]

Hi Shirley

I had partial resection of an intramedullary ependymoma C7 - T3 4 months ago. I have the tightness, numbness, skin sensitivity and tingling from the armpit down on the left side. It got better for the first month but has slowly spread and gotten worse for the past three months. The neurosurgeon called it spasticity. I am taking baclofen and just started taking gabapentin. The more I walk or exercise the worse it gets. The gabapentin seems to help a little. So far the doctors haven't been much help in dealing with this or giving clear explanations. Hope you are better by now.