post surgery buzzing/vibrating skin!

[qhcrazy]

Hey all, new to the forum and am wondering if anyone else is experiencing the same after affects of surgery as I am. I had a intermedullary ependymoma removed in Sept. of 2007. Following surgery, I was kept in the hospital for 10 days and then moved to be an inpatient at a rehab. facility. I could wiggle everything and move all parts of my body, however, I couldn't stand or walk and my skin hurt like there were shreds of glass being placed all over my legs and feet, especially. My arms and shoulders were fine, but I was numb from my armpits down to my hips. Below the hips is where all this tingling and buzzing is occuring. I can feel pin pricks and such, but my skin is still ultra sensitive and it hurts to walk. Will this buzzing eventually give way to normal skin sensation? I am lucky to be able to have come as far as I have in just a couple of months, I just want to make a full recovery, if possible, and they said that how you would "end up" after surgery has a great deal to do with how you were prior to surgery, and I was completely able to move just as always. What are your exeriences with this?

[paul55]

Greetings and welcome to the forum. Glad to hear you made out ok.

What you are experiencing is what most on this forum has and still is experiencing today. Just in different areas of the body and at different degrees. Myself, I had surgery back in May of 07. I still am numb from the waist down. I have feeling and can move but my legs get extremely fatigued when I walk, and the cold just exacerbates the symptoms. I have got used to the symptoms, but at times it depresses me to no end.

I was told that it could take 18-24 months before I have an idea of what i might be left with symtom wise. Just a waiting game at this point. I will say that a little of the numbness has gone away from my breast area to my waist.

In the meantime, we have a support system with this forum and try to help each other when we can. As you mentioned you still have movement, you had a good doctor. Some don't fare as well as most have, but that is do to many different situations as well.

Tell us a little more about your surgery if you don't mind. Where you had it, who was the doctor, how was your rehab. This will certainly help others who find this site.

I wish you well and stay with it, you can do it. Things will get better over time.

Kind regards
Paul

[LynnD]

Hello and welcome to the forum! If you can do as Paul suggested and send more info about tumor location and your surgery it would be beneficial to others who need help and for others to assist you.

I had the same type of tumor as you from C3 to T4/5 with cysts above and below the tumor. My surgery was in September 2003 at Johns Hopkins with Dr. Jallo. I too have nerve pain and numbness from the surgery. Mine starts just under my chin and goes all the way to my toes. Some areas are completely numb while others are so sensitive the slightest touch hurts. My hands have been worse lately. I have noticed that my pain varies depending on the weather, food I eat, and hormones. It's a juggling act to try to minimize symptons.

Have your doctors prescribed any meds for you? Neurontin or lyrica have been helpful to most on the forum for both the numbness and the sensitivity/electric shocks etc.

Let us know how you're doing and stay positive. You are early on in your recovery and the pain/numbness will decrease but it probably won't disappear completely but you never know! One other tip, sometimes when my skin is real sensitive I will rub it for a few minutes to basically overload the senses. It hurts at first but it sometimes gives relief by over stimulating the nerves and your body cuts off the pain signals. Something like that!

Lynn

[Tmasgio]

Hello, glad that you found us here and hope that we can help. I am sorry for all or your pain it just seems that with this surgery there is not anyway to get away from it.

I had surgery in April 07 with an intermedullary Ependymoma located from C3-C6. It was successfully removed. I do have pain in my hands and lower back. I have tried all kinds of drugs to combat the ill feelings. Most of them I found made me sleepy and some of them made me gain weight. However, I did find that with exercise such as riding a stationary bike it controlled pain much better and helped with the stiffness that results from the nerve damage. You may want to see if you could start a small workout regimant at home. Just a suggestion.

If you dont have a pain management doctor I would highly recommend getting one as they can prescribe drugs to make you comfortable. Like Lynn was saying the pain will decrease in time but may never go away completely but then again it has happened where it can. No one can say for sure what will happen to you but try to get as comfortable as possible.

I also wanted to say that the predictor of outcome is not necessarily what we as individuals think. Really the way you go in is the way come out is based on Neurological standards. Meaning that you are neurologically intact such as bladder and bowel control, Respiratory, feel pin prick sensation and so on but it does not take into account how you feel personally. Give yourself some more time because you have upto two years to continue healing and there is even people who get better long after so always believe that you will get better.

Tony

[qhcrazy]

I guess when you hit "reply" on here, it replies to everyone? Anyway, someone had asked to know a little bit more about my surgery. I will gladly say that I had it done at MCG here in Augusta, GA. My neurosurgeon was the incredible Dr. Mark Lee. My rehab. was done at the outstanding Walton Rehab. I had intense physical therapy as an inpatient and eventually became an outpatient and am still doing my rehab., but at home now and on my own. I have horses and two small children, so between all that and keeping up a house and substitute teaching, I am sooooooooooooooooooooooooooo rehabbing and sooooo busy! I guess it all helps to keep my mind off of all this wierd body experience! I do all of that, but not comfortably. I guess I'm just pushing on and refuse to let a tumor do me in, so to speak! How are all of you doing? I have my 6 mos. checkup in March.

[Ali-Brad]

Hi ghcrazy,

I have to agree with everyone so far. I'm three years post 2nd op and sensation / tingling / buzzing / burning, etc., are still issues for me. Lyrica helps, but doesn't get rid of it. You kind of learn to live with it in time, but it does get you down at times. You need more recovery time to find your 'level' of recovery. It is different for everyone, but I've not heard of anyone be issue free completely .

Things will improve though
You take care
Alison

[IdaB]

Hi ghcrazy - Thanks for posting and for telling us about your surgery/surgeon - that will really help people, esp if they are in you're area. I agree with everyone that what you're describing is classic post-ependymoma (and some other tumor types, but it seems like almost everyone with ependymomas gets the numbnes/tingling to some degree). It is a weird mix of sensations, and even doctors in this field sometimes don't seem to get it (I'm thinking residents in particular - I've had so many respond to me saying "numbness" by whipping out a pin and sticking me all over, only at the end to say "huh, you have sensation" - augh!) As for me, it did get slowly better over time, to the point that now, usually, it only feels a little numb and the tingling is very low level. But I will say that even 8 years out, those symptoms can vary with activity and pain level - when I'm really strong, I can feel really almost normal. (I define normal by what my arms feel like - my highest surgery was at T8.) I have only very, very small areas now that are hyper-sensitive, thank goodness, as that was one of the worst things - really some days none at all. I did have myxopapillary ependymoma, so it might be a bit different long term, but I've always identified with the other ependymoma stories in the numbness/tingling respect.
At one of our conferences, I think I remember a pain management doctor saying that the numbness and tingling are forms of pain, just more unusual forms, and should be treated as such. Has anyone else been told the same thing (or something else) about these sensations?
Ghcrazy, it sounds like you have a really active life for anyone, much less a recent SCT survivor! That's fantastic - though do be careful and patient with yourself. You are really so, so recently out of surgery. It's hard to say where you'll end up, but I'm sure you'll recover a lot from where you are now.
- Ida

[qhcrazy]

I am so happy this forum is out here, you guys so totally GET it, all of it, all of the emotions, physical feelings, etc. Thanks so much for all your terrific advice and stories!!!!!!!!!!!!! This forum is truly a life line. It's so easy to get down about this whole ordeal. I am so recently post op., and am having some serious issues accepting all of this and dealing with it. I guess I just deal by keeping busy, which at times reminds me of my physical limitations. I am substitute teaching all the time and I know I am probably overdoing it, because my feet feel "hot and swollen" and "squishy" by the end of the day. But, they feel that way by the end of the day even when I'm taking it easy on my non sub. days, so I guess I'd rather be earing money while I'm uncomfortable and prone to crying about all of this. At least when I'm at school, I have to be strong and not break down. I save that for the bathroom so my kids don't see me!!!

[Tony]

You will find that all the emotions will pass and you will accept with whatever you are left with as far as limitations and ill feelings. We are resiliant in that our brains forget what it felt like to be any different than you are today.

I too had too have depression on how I feel today but I look at my family and know that I am truly blessed.

Okay so the wife nags sometimes but it still is a blessing to be surrounded by people who love me. I have two kids as well but you know kids are so flexible. They will always love you no matter what condition you are in as you are there mother.

Keep on fighting! You will win!

[jeverman]

My husband had an intramedullary ependemoma at C3 removed in 2001 at Oregon Health Sciences University and still has numbness from the chest down, tingling in his hands and feet and cannot walk barefoot because anything he steps on feels like glass. He is a tugboat captain and at 61 yrs. old is still working. He has tried taking neurontin for neuropathy, and ultracet, but has opted out of any prescription medication other than aleve, and seems to manage as long as he gets plenty of rest. His neck gets very tired. Incidentally, he had aonther ependymoma removed from the cauda equina at the base of his spinal cord in 1993. He had a full recovery from that surgery. He is finally going to start massage therapy next week. His neurosurgeon says that his symptoms are typical.