PLEASE HELP, SPINAL TUMOR AND SCARED CONTINUED...

[amg3w]

Hey Guys!!! Thank you all so very much for all your support comments and information. I wanted to clear one thing up, I never was going to have a biopsy done first, I am having the surgery. What I mean't by that was that they wouldn't know for sure what it was until they removed the whole tumor. I had another question for you all and hopefully you guys can help me out. My tumor is an intramedullary tumor. So this means it is actually in my spinal cord. My neurosurgeon, Dr. Kyle Weaver, at Vanderbilt University will be doing the surgery. My question is DO ANY OF YOU HAVE ANY PAIN OR SENSORY LOSS? Dr. Weaver said that because of the location of the tumor (C-5 to C-7) when the cut the spinal cord open, some of my sensory fibers will also be cut and therefore I will loss pain and temperature sensation in my arms and torso area. I noticed a lot of discussion on here about numbness and tingling, but nothing of that matter really mentioned. I think the higher the tumor the more sensory loss that the lower the tumor, but I could be wrong. I hope you all have some input. My surgery is scheduled for next Thursday, June 5th and I am scared to death of all the things that could be wrong with me when I wake up. All of yours stories though have given me some hope though! Thank you all so much.

[peilynne]

Ashley, I know how scared you are feeling, I had an intramedullary subependymoma tumor removed last June 21. The area involved was C3-T2. My surgeon figured mine was growing for at least ten years. At first, after the surgery, I really was not in a lot of pain. Now, I'm on a very low dose of slow release morphine to help ease the little pain I do have. At first after the surgery I had loss of sensation from the neck down, but most of it has returned, slowly, every day I have more and more sensation. I have regained full sensation in a lot of areas. I can feel temperature in most parts of my body. Every patient is different. Please try and go into your surgery in a very positive frame of mind, I truly believe that helps.
You are young and that is soooooo in your favor. I got through everything fine, be brave and be strong. Just tell yourself every day that this is just for now, not forever. I still have a wonderful life. I live in Canada, but my phone number is 902-432-3070 and you can call me anytime for support. I will keep you in my thoughts and prayers and I just know everything will be okay for you. All the best, Lynne

[Tmasgio]

Ashley,
I had an intermedullary ependymoma from C3-C7 so it was very large. I can feel everything from hot to cold and touch. You will have numbness and you will have sensory loss but nothing that you will not be able to adapt to with time. Your brain is resilient in the fact that it forgets in time what things used to feel like and that in time whatever you have from the surgery will become normal to you. You will be fine and you will heal but dont be hard on yourself and make sure you do your physical Therapy and keep a positive attitude. These two items will help you heal much faster. This is a very tough time in your life full of uncertainty but like us you will come out on top and move on with the rest of your long life. Also, you will be able to be a successful Vet just keep that in mind.

God Bless,
Tony

[qhcrazy]

Hey there! Me too with the intramedullary tumor, mine was quite large and after surgery things were a bit wierd, lots of surging feelings and buzzing and such. But, look forward to it settling down to whatever level your body decides. I know you probably hate hearing everyone tell you "everyone is different", but it is soooooooooo true. It depends upon your surgeon and yourself. As for me, I had a wonderfully skilled surgeon and after only 7 months post-op, I can walk wear nobody can tell there's anything wrong with me. I have NO WALKER, NO CANE, AND AM ON ZERO MEDICATION....NOTHING!!!! I have full use of my bladder and I feel hot and cold. My torso is a bit off, but guess if I had to be numb somewhere, the torso really isn't a big deal. I have no pain, just discomfort and in time I know my body will accept this as "normal". If I stay incredibly busy, and I do with 2 small kids, I find it takes my mind off of things and I actually do things like I used to. My muscles are fully functional and I can ride my horses again. As for sensory, I still buzz and my feet are tender and are slower, but it's not too bad and I am happy with my outcome. It really is remarkable that these surgeons can take these things out and give us as much mobility as they can. Physical therapy helped me out a lot and I work out and ride my horses, so it all helps in the grand scheme of things. Good luck on the 5th and let us know how you are doing. It will all work out and we support you and understand you here!!!!!!!

[drummer904]

Good luck with your surgery, Ashley, please let us know how it goes. I pray you come out of it with little or no loss. What symptoms do you have now?

[msweeney]

Ashley:

It is hard to get a sense of what the impact of your surgery will have on you from a broad discussion on this forum. I know you want answers and fear can make you crazy running scenarios of what life will be like post surgery.

It is important to understand that each tumor is different, even given a similar pathology and location. The major factor is size of the tumor, especially width, how much compression to the spinal chord has occurred and for how long. Then there are the surgical factors, did the surgeon find a clean surgical plane, what nerves were cut and/or damaged to access and remove the tumor. These are just the major variables and they can result in very different outcomes for different surgeries. Then healing can occur at different rates. I don't mean to sound confusing, rather it is a way to emphasis that, whereas you can make conclusions about average outcomes, don't get frustrated or discouraged if you can't draw some conclusion about the outcome of your surgery.

I think most of us agree that there is some fallout from surgery. It is difficult to resect a tumor within the spinal cord without causing some post surgical deficits. Some things I read on this forum I can't understand because my deficits are different. Other things I read and I think that I could have written the same words myself.

My body is very different now but count me as another who does not take medications for pain. I have sensory deficits and functional deficits. It took me a while to adjust to my post surgery body but make no mistake, the human body is remarkable and we are capable of setting new normals and adjusting. It sounds like you have chosen a good surgeon and that is good.

My prayer for you is for the best possible surgical outcome and peace of mind going into surgery. I wouldn't wish this on anybody but we often talk on this forum about the beauty that has flowed from our common hardship. Don't underestimate your own strength and determination and what a positive outlook can do in terms of your recovery. I will say a prayer for you on June 5th and send good thoughts your way. Let us know how it goes we are all rooting for you, go in there and kick that tumor right in the teeth!

Matt

[Joel]

Matt's explanation is so very clear and correct. I will only add that right now you become secure with what your NS is going to do, as well as preparing yourself for the surgery. Afterwards you can start thinking about recovery, PT, meds, etc.
Joel

[shannan]

Good luck with your surgery and know that many of us will be thinking about you on the fifth...positive thoughts have to count for something. As for the post surgery stuff, although it is difficult not to think about it, try not to worry too much....I just past my year from my surgery and continue to see progress and change with my recovery. We'll be here for you.

[phylscircus2]

Zachs GBM was intra also....began at C-2 and was connected to T2/T3. It grew free flow to the very end of the Spine itself. They rolled the tumor up from the bottom during surgery and ummm, best way to put it, scraped it as close to the cords without damaging them. The actual width of the tumor caused the l sheath to be loose when the tumor was removed and the pressure when the tumor was there made the cords flat where the width was the thickest. It really depends what and how the tumor is attached to the cords.....I read almost everyone heres post about pain and managing every day life with problems. The one things that seems consistent is numbness, tingling, and pain in certian areas OUT SIDE of the spine due to nerve damage. In Zachs case it seems a majority of the damage pre op and post op is from the areas the tumor was. He also gets tingling, numbness......if he lays in a certian position at night during the next day or two he has limp arm on the right side....so he manages by placing his hand in a pocket so he doesn't bang it into something. He did fracture his right arm in 3 places at 3....it didn't swell, didn't LOOK like something was wrong with it for almost 2 days.....I know when he fell down the hill, it didn't show problems until 2 days later when I noticed it was red on the wrist and the forearm. It started to swell and THEN quickly was obvious. As he got older we were able to ask about it showing us the difference of being numb and feeling. He says it always feels WARM......gets HOT, tingles, then goes numb....then backwords as the feeling comes back. When its numb it gets REALLY cold. The one thing I remember on pre op was being told they can't determine the tumors attachment by MRI or CT scans....if it helps Zachs tumor was literally grew between the cords.