Will this numbness ever subside?

[lw]

Hi,

I know what you mean about the numbness. I was almost completely numb from the chest down post op. Some of this gradually subsided over a period of about 3 years, some of it has remained to this day (particularly the left side of my chest and right foot). The only thing I found to help this was hot water bottles. If it wasn't for them I don't think I would have regained enough sensation in my legs and feet to be able to walk again. Maybe heat stimulates nerve growth. I also took B12 capsules for several months so that may have contributed. It's definitely worth a try.

[von]

Hang in there. /hugs I've got a good bit of numbness as well, most of my lower body. I've learned to be very careful handling hot things and checking my body parts to make sure everything is in order. XD I understand the frustration, it's just something you can't explain to anyone who hasn't dealt with it.

[Mike]

So Sue you haven’t had surgery yet. Sometimes I think I wish I didn’t have surgery. On a scale of 1 to 10 my right foot was a 1, my left foot was a 3 and my left hand was a 7. Only parts of my feet and hand were numb. Now all 3 on that scale of 1 to 10 are 11. I can’t feel any part of my hand or feet just numbness.

[peaceandlove]

Hye Atlmjk1,

I am a person planning to go for surgery. One step front and 10 step back. Am so afraid. All depend on situation on how surgery goes on/ who perform it/ how? what was the tumor kind/ was it complicated (sure intramedullary)..... Many questions and facts lead to result you get in your case...
If you help me informing all this how it happen to you...will be appreciated.. You were expecting all this to happen...The doctor inform you about this...?
My doctor when he sad he is going to perform my surgery, he sad that am going to have numbness post surgery? I asked him it can be for long , maybe 10 years??, he say No!! AND HE SAY THAT THE NUMBNESS CAN BE CONTROLLED BY Medicins...(Neurontin/ lyrica....)

For me my bulky intramedullary tumor is compressing when sitting and disturbing a lot.. Am surviving and am still working 9 hrs a day with difficulty and pain, no drugs help me at all since drug will not eliminate the tumor compression. What about you the drugs are helping? it will calm down the numbness...

Do you advice to go for surgery? All your answers will be taken in consideration to be addressed for my doctor during next consulting.. Please help me, if have the chance to get back normal life , why not...

Thanks and good day

[Leofwen]

Hi Mike

I haven't had surgery yet, but it is inevitable at some point. My NS is worried about serious risk and wants to wait until my symptoms equal the risk if I can . In the meantime they are trying to manage the pain and keep me mobile. I have a fantastic GP who I never used to visit, but am almost on first name terms with now! Lol. Sometimes I really want surgery to remove this thing from my spine. I do worry about malignancy, but this fear is unfounded. I think they are wondering if mine is actually a solitary neurofibroma, due to my symptoms which are unusual for a schwannoma, according to them, but not if you read the posts on this site.

Either way, it's a bugger to live with!

I just take each day as it comes and do what I am able to do. I have given up work and have my pension at 49 and find it difficult to fill my days, but am getting there. The worst thing we can do is go into decline and spend too much time thinking and worrying!

I do hope your symptoms subside and you get some relief as it is miserable.

Keep in touch
Sue x

[Mike]

Oh dam Sue, I didn’t realize your surgery is too risky and here I’m complaining about having it.
Now that I think about it if I would have waited the worry would be killing me now.

I’m wondering about your NS. The first NS I saw was local and didn’t have any experience with this type of surgery. I when out of town to UVA and found a doctor with experience. I had it done right away but didn’t ask enough questions. I thought I would be back to normal in 2 weeks.

You sound worse off than me. I would look for another NS.

Sure I get frustrated because I can’t ride my motorcycle, or downhill ski or roller skate but I have hope.
I work out 3 times a week. I can now run for 3 minutes on the treadmill
I’m not really in any pain just numb. (I take no medication)

You’re blowing my mind
I don’t know what to say
Mike

[samuridude]

Nov 27, 2013 10:44:04 GMT -6 Mike said:

I work out 3 times a week. I can now run for 3 minutes on the treadmill
I’m not really in any pain just numb. (I take no medication)

Hey Mike,

I'd use extreme caution while running on a treadmill while numb.   
I lost my balance a few time while numb just walking and was a very athletic before symptoms.    

[Leofwen]

Hi Mike

No worries. I have a great NS who is the Clinical Director of a prestigious orthopaedic hospital and very experienced spinal surgeon. I have also had opinions from professor of neurology at St Thomas Hospital in London and also two spinal neurosurgeons at Kings College Hospital in London. I had thin slice mri to give more detail about which nerves are involved and to check for more tumours as they queried NF2. My tumour has kindly attached itself to my sciatic nerve!

I can have surgery any time I want,they are just not advising it. I would need a foraminotomy,a facetectomy,laminectomy and spinal fusion! With no guarentee of being better. Great choices huh?

I remain positive and even visited the states in September as I am determined to live life to the full. You just have to know your limitations and accept them,but not let them control you.

Sue x

[leks]

hey everyone

I've always been to!d by pt and it that stimulation and weight bearing do a world of good. Velcro, rough material, anything with a rough surface will do to stimulate, but its hard when progress is so slow.

I'm nearly 2 years post op, and only now am I getting some feeling back in my right hand, but I have loads of numbness on my left side of my body to deal with.

oh ya, maybe a nice massage to stimulate and get the blood flowing will do good, we gotta try anything and not give up hope, I know easier said than done.......

[Tom]

Hello everyone. I am new to this site but have a short story to tell.

My wife at age 54 experienced low back pain that got progressively worse. Physical therapy didn't help. After two years of pain she had an MRI. There was a six inch tumor inside her spinal cord between her shoulder blades (T5 to T8). This was found on a Tuesday. Thursday we were at a neurosurgeon's office. who scheduled surgery for the following Tuesday (one week after the MRI). We had a second opinion on Friday and this neurosurgeon recommended the first (the one doing the surgery) and said the tumor would "slip out like a hot dog."

Post surgery my wife has lost all sensation from the bottom of her ribcage down. She has chronic muscle spasms that are very painful and limit her ability to function. We are ten months post surgery.

I can hardly live with myself. I feel I let my wife down. When she needed me the most, I panicked and went ahead with the surgery. I didn't consult the Mayo Clinic nor anyone else outside of our immediate city. I had no idea all of these complications would occur. I wasn't prepared for this outcome and daily think "what if" we had flown to the Mayo Clinic or some other Medical Center that did a lot of these surgeries. Now I feel we're trapped in a life we didn't see coming.

Could we have had a better outcome? It kills me to think that we could have IF I had just taken my time and researched everything before having surgery. The neurosurgeon said we'd have a three day to three month recovery period... but we are not recovering. I'm afraid this might be ever ongoing.

Why didn't I know more? Why didn't I know about these outcomes? Would another surgeon have done a better job? I was foolish to think that someone could cut into my wife's spinal cord without any long term affects.

What would help me the most would be the knowledge that WE DID THE BEST WE COULD. It would be easier if my wife had a spinal cord injury from an auto accident. But because this was caused by a surgeon- I can't help but think that I chose poorly. One week from diagnosis to surgery... we prayed for guidance but went ahead anyway. We're coming up to a year and I'm afraid the surgery anniversary will be very hard for us.