Pain and other annoying sensations

[susan]

I was wondering if anyone saw significant improvement in pain and numbness, burning, tingling, etc post op. I am wondering about this for myself, plus for all of the people who are waiting to have surgery.
My initial symptom that led to my MRI was numbness in my right index finger and thumb that started in 2006. It eventually spread to my entire hand and I was dropping things. Later my entire right arm would go numb when I got in bed at night.
A week after my MRI and diagnosis, I had an episode where my right arm went suddenly numb and pins and needles. I was admitted to the hospital and started on decadron for my spinal cord swelling in preparation for surgery.
My concern is that those symptoms, plus the new sensory ones that appeared post-op do not seem to be going away. I think they are somewhat better with Neurontin, but they aren't going away. After surgery I developed pain in the side of my head and ear, burning around my incision and back of my head and burning of the skin on my neck and chest.
I had new motor problems with my right arm and leg post-op and those went away pretty quickly. It seems to be the sensory ones that are sticking around.
For those waiting for surgery, are they going to be stuck with the sensory symptoms that they develop while they wait? I often wonder if I had gone for my MRI sooner or if my surgery had been scheduled before I developed the bad symptoms in my arm, would I not have them at all?

[billanschell]

Susan: I don't like to be the messenger of bad news, but at the same time I appreciated when another SCTA member answered a similar question of mine honestly.

I haven't seen any aspect of my pain get better, other than the back pain that came directly from the tumor's impact area. What HAS gotten better - much better - is my ability to adapt - walking without an obvious limp or the need for assistance. But the pain generally got worse as I recovered sensation in the affected areas. On the plus side, you'll find the med mix that works for you. Or, if you're lucky, you may have a better post-op recovery than I did.

I was far better off before the surgery. But I also know that there was no choice - allowing the tumor to grow would have left me paralyzed eventually.

--Bill

[8338]

Susan,
I am five years out of surgery and I still feel the same pain as back then except for the lower back pain that lead up to the surgery. I might still have it but I am all numb back there.
I still have all the tightness all around and from the thorasic region down my legs and that in itself is painful. Gambapenten does take the edge off but at times it is quite uncomfortable!
Weather can play a big fact, as well, in how my body acts and feels.
Barb
PS This is something that I am always wondering if I am all alone in my pain.

[koreangirl]

Susan,
Unfortunately the pain never totally goes away but it will subside. My surgery was in 2003 T1-T3 . Massage and skin manipulation will help desensitize the skin, it will take a long time. There are good days and bad days. I am totally off medication which makes me feel better about myself. Sure neuro meds help with the pain and cymbalta helps with the depression but who really wants to walk around in a fog all day everyday? Not me.
I have found as time passed that some sensation has returned in my left leg and foot but not totally. The biggest down side for me is numbness that has effected me sexually.
There is much to be grateful for though. If I had not had the surgery when I did I would more than likely not be living now. I watch my children grow and I work a full time job. Life is not fair so we must deal with the cards we are given. Be optimistic and start every day with prayer. This works for me.

[Joel]

Along with basically agreeing with the other posts, I'll add that the "zinging" I felt after surgery going down to my feet at times along with the zinging I felt on my scar did go away quite a bit. But the numbness, pain, balance types of problems did not go away. Definitely damned-if-you-do and damned-if-you-don't kind of thing. You've had the surgery. Better to not get into the "what-ifs" too much. Best to try and improve and adapt as much as you can, and dwell on the things that are still easy and fun to do.
Joel

[susan]

Thanks everyone for your honest answers. I think I need to stop waiting to wake up some day and feel "normal". I suspected that if you have sensory symptoms post-op, that they aren't going to go away. Some people must be blessed with no pain/numbness/heaviness etc after surgery. Remember Ashley the young woman that had surgery this summer? She seems to not have those issues. Of course she had the advantage of youth. Oh your ability to heal when you are in your 20s....
I think that doctors don't really know what to tell you about these things. My primary care doctor has a very busy practice and had been at it for 20 years. I asked him how many of his patients had spinal cord tumors and he said "you're the only one". I think to some extent we are kind of learning as we go along.
I am concerned for our members who are in the waiting mode. If their symptoms get worse prior to surgery, will they be stuck with them? I know how sudden the worst of my symptoms hit the week after my diagnosis. If I didn't know I had a SCT, I would have thought I was having a stroke. There was no warning.
I did get possible good news today. My insurer will cover Lyrica (with a hefty co-pay, but certainly less that if they didn't cover). I at least want the opportunity to try it. I know it may not work any better than Neurontin, but it's worth a try for my quality of life. It has infuriated me that my insurer paid for surgery, but intially cut off my PT when the therapist said I needed more treatment (I did appeal and get additional sessions) and wouldn't approve Lyrica. I wondered why they pay for surgery if they aren't willing to pay for things to make you whole again.
It's not a sure thing that either of those things will make me better, but then again surgery wasn't a sure thing either.
I am grateful for my outcome from surgery. My surgeon said I was weeks away from being a quadriplegic on a ventilator. My PCP said I was "lucky" I found the tumor when I did, given my minor presenting symptoms. I say blessed, but I was lucky too.
When I explain it to people I say "I had a good outcome from surgery. I just had a bad thing wrong with me".

[qhcrazy]

Susan: I have a success story for you. When I was recovering, I absolutely could not even put any weight on my feet and hated for anyone to even try to touch either them or my legs!!!! It felt like I was wearing a jagged glass suit. I would scream if anyone touched my legs or feet! When they tried to get my to shower, I hated the thought of water hitting my skin. All the nurses thought that was so wierd, but with all of us who have had this surgery, we KNOW how wierd all this can be! Anyway, after a year, I can walk barefoot in my house and not be in too bad of pain. I can slap my legs and don't whince anymore. I am currently on NO meds., so it's all me and my skin. Hang in there, your body will eventually settle into a "new normal" for you.

[cindylee]

One thing I think we all need to remember...what if we had never had any surgery at all? Think about how much worse off we would be now. We all have another chance to just be here for the ones we love. I admit, pain can make you crazy at times. But many of us are trying to adapt as best we can and doing it. I had terrible pain for 4 1/2 years. It got so that I slept standing up, if you want to call it that, for maybe 10 minutes at a time. Nothing stopped that pain. It's a bad thing when you try to lay down and your tumor just won't let you. I don't have that pain anymore. I use very little meds, so I am lucky. Yes I still know when the weather is going to change, and I ache like crazy in the winter and am cold. But nothing like it was before. I still have balance issues and spasms and numbness and a "trick" knee. Sometimes I stagger around like I've been out on a drinking binge. But I am still moving. Still here to see another day. I know some people are not as fortunate, still in a wheelchair. That is really hard. But we are still here, and for the most part we manage. I know pain wears on me. But I try to remind myself, it isn't like it used to be. And I just keep going. Hugs to you guys, Cindy