New and scared / confused

[David K.]

I have been dealing with some really bad back pain for right at one year now. The pain is right between my shoulder blades in my spine. At times it feels like someone is stabbing me to death when the pain hits. I have been to the VA hospital several times over the past year trying to get help and find out what was going on. The pain is just unbearable. Like nothing I have ever felt. Docs kept saying it was muscle but I knew it had to be something more.

On February 18th I woke up in so much pain it was unbelievable and the pain was going down the back of both arms into my elbows. I was taken to the VA emergency room where the ER doc ordered a MRI of my spine. What they found shocked me. I have a tumor growing on the inside of the actual spinal cord of all places. They immediately called in the head of neurosurgery from Vanderbilt to take a look at it and talk to me about what was going on and what had to happen before it was too late. The doc was really surprised that I was presenting as well as I was because my spinal cord is so full of this tumor. He thought I would have lost some ability to move around by now but thank God I haven’t.

I met with my surgeon on Wednesday, March 9th for my consult. I am trying to keep a positive attitude but I feel like a scared little kid right now. My surgery is scheduled for March 21st at Vanderbilt in Nashville. I am glad that the VA referred me to Vanderbilt to have this done. My surgeons name is Matthew McGirt and he is a really good neurosurgeon. He was at John Hopkins for 8 years before coming to Vanderbilt. They have to completely remove 4 of my spinal vertebrates (C6- C7- T1- T2) to get access to the spinal cord. The tumor is inside the cord so he has to go inside the spinal cord to remove this. He says the spinal cord is the most delicate organ in the body. All your nerves go thru it. Doctor says I am probably looking at 5 days in ICU then a few more in a regular room. Then I will go to an inpatient rehab center for however long it takes. The only treatment for this is surgery. If the tumor is left untreated I will eventually lose my ability to walk. With the surgery he thinks I should come thru with only slight damage but won’t know for sure until all is said and done. He said could go anywhere from being in a wheelchair to being for the most part normal. The not knowing terrifies me. I have put it in God’s hands and I serve a big God. Any feedback from you guys on here would be great. Your prayers are appreciated and needed.

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[Todd]

Hey david, sorry you are going through this. I know that scared feeling, it's horrible. do you know how large the tumor is. seems like things are moving pretty quickly for you due to your symptoms.

I don't want to scare you anymore than you already are. do you have any specific questions?

sounds like you trust your NS, that's the first step. took me weeks to get my head together and find a good NS, 1st one I went through said things are pretty bad.

I walked into the hospital on the day of surgery and am left with some significant neurological deficits, but everything works and I don't have any nerve pain, so, I count myself lucky.

you can expect to have some numbness post op. it's normal and may or may not get better, mine got a little better but I am still numb in places.

do you have family that can help you? post op therapy is going to be crucial, and it's going to be painful. I slept in a recliner at home for a week, it was just easier.

make sure you get good pain meds post op. if you tolerate morphine, ask for it. my experience with other pain meds were that they didn't work and made me ill. but everyone is different.

I asked my NS for some valium and I took that for a couple weeks before surgery, just to help me calm down a bit. didn't take enough to be a drooling mess, just enough to take the edge off. you might look into that.

You can check out my story by following the link in my signature.

feel free to email me directly if you'd like [e-mail]

I come to boards often, so, if you post more to this thread, I'll respond as well.

take care. it sucks. it's going to keep sucking for a while but it gets better and we are all here to help you. keep us updated and ask as many questions as comes to your mind. we've all been where you're at. we feel for ya.

Todd

[hmal]

I'm so sorry that you have this. My tumor was in the same general area, though outside the cord.
Just be prepared for a long journey to recovery after surgery. I was comparing to my my appendectomy in my mind, and it was nothing like that at all!
The best advice I got here was to ask for morphine, as Todd said. They gave me dilauded after surgery, and it didn't work at all and made me very sick. Ask for a morphine drip right away.
Also, make sure you have a recliner to sit in when you are out of bed. We rented one from rentacenter.
I couldn't walk after surgery, which I also didn't expect, but in a month I was running on the treadmill, so don't get scared when/if you have no balance.
My right hand and both arms are numb, but I'm used to it now, and it's not that bad, considering what could have been.
This forum is a great resource for you to prepare for surgery and recovery.
Good luck and God bless!
Heather

[Todd]

agree, the dilauded did nothing for me but make me ill. I asked for some morphine and the pain subsided.

takes a long time for the spinal cord to settle down after someone has had their hands in it. swelling can take weeks, even month to subside in the spinal cord.

2 things I really wasn't prepared for, well, I knew that I could end up with no function from the waist down but my NS told me that something would have to go really wrong for that to be my outcome, 1) I wasn't really prepared for the pain, that's why ask for the morphine button post op, 2) I am numb from the chest down on the left side of my body. I can walk ok, and really could walk fairly well post op, it was very strange, like my leg and upper body on the left side is asleep but the sensation is more dense and less prickly.

My NS told me he'd rather operate on the brain anytime over the spinal cord. He said the spinal cord is not very forgiving of intrusion. It's scary, lifechanging stuff. I went back to work 4 1/2 weeks after surgery. I spent 2 weeks after surgery just getting up and getting things moving again. I was surprised at how much I healed up in 24hrs. My progress was noticeable on a daily basis. Of course that leveled out over the course of a couple of months and then you get therapy for the rest of it.

a lot can go wrong, but a good NS can minimize the impact. you will be different coming out of this but it gets better over time.

I was most terrified the hour before surgery, when they are prepping you. the unknown is crippling scary.

take care, try to get some sleep, it's your best friend at this point.

Todd

[David K.]

Thanks guys for your responses. Hearing from folks that have been through it seems to help me better than anything. Hopefully we can all stay in touch as we go through this together.

[Todd]

do stay in touch david. we not only want to listen and help, but we care. even though we have never met you, we know how you are feeling and I, for one, would never want to see anyone go through this, it's a tough one.

we're here for you. no question is dumb. you want to ask, vent, whatever, we are listening. we'll help where we can.

todd

[millelacskay]

Keeping a positive attitude is hard when you're facing something like this - seems like your mind wants to go directly to the worst case scenario. Having faith in my NS plus knowing about all of the intraoperative monitoring tools really helped me to believe that I would come through without being paralyzed. It was rather intimidating when I was being hooked up to it just prior to surgery, but when I woke up and could wiggle my toes I was incredibly thankful that we live in a time where these tools are available.

Sounds like you are in good hands. Wishing you all the best on the 21st and during your recovery.

Kay

[David K.]

Thought I would add a pic of my MRI.

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[crazycanuck]

Good luck to you David! Like you, I was under the knife within a few weeks of diagnosis. In some ways I wish I had more time to process things, but also like you was living with excruciating pain ( what I know now to be nerve pain). I'm now 4 weeks post-op and doing great - in fact, my first thought in the recovery room was that the nerve pain was gone (replaced by surgical and muscle pain, but I'll take that any day over what I had before)

Yes of course there are risks, and I didn't enjoy hearing the worst case scenarios, but I had confidence in my NS and the facilities in the hospital, I was so calm going into surgery.

I didn't know that vertebrae could be removed, I only required laminectomy, so I can't offer any advice there. I spent 5 days in ICU as well, it was great - own room and nurse:). One night in the general hospital population was enough for me - hospitals are no place to get well. My husband bought me a iPad for my hospital stay and recovery and I thought it was the best thing ever - email, facebook and angry birds helped pass the time.

I will be thinking of you on the 21st.

[Tmasgio]

I remember that pain all to well. It was a sure sign something was wrong and it was not a pulled muscle. My advice is to do what the surgeon tells you. Take it slow afterwards as the no pain no gain goes out the window. You are correct in that you dont have a choice as you will ultimately if left untreated be paralyzed and worse. Keep positive thoughts as we will for you as well. The one thing to keep in mind and this is the hard part is that you will have something to deal with after all this is over. Their will be permanent loss of sensation but to what degree no one can determine that so make sure you take care of yourself.

The easiest part is the surgery believe it or not and the hardest part is getting up and working at getting better. You may want to take a look at the people page as you will see many good outcomes and great stories of determination and how to cope with life. As Linda always says their is life beyond the tumor. I lead a great life and my tumor was very similar to yours. I have to say that I too was scared but do really well today despite some sensation loss. The human body is a miracle in and of itself and it will compensate for any loss you may have and in time will heal.

Good Luck and let us know after your surgery how you are doing,

Tony