PLEASE HELP, SPINAL TUMOR AND SCARED!!!

[Ashley]

Hey everyone. My name is Ashley and I am 21. I live outside of Nashville, TN and two weeks ago I found out that I have a spinal tumor located from C5-C7. The doctors say that they feel it is an ependymoma, but will not know for sure until they biospy it. I have the surgery scheduled for June the 5th at Vanderbilt and am terrified. My doctors told me about the band of numbness I will have in my torso and arms, and say that I could possible be paralyzed from the neck down. Being a 21 year old, this sounds worse than death. I just graduated college and got into Vet School for next fall. I have a great boyfriend, family, life etc. and this stupid tumor seems to be messing everything up. I watched my dad die slowly of bladder cancer witch paralyzed him before he died four years ago and I don't want that to be me! It would be nice to just hear about how you all deal with it. Does the numbess become like normal. Can you drive? Can you live in general? Also can you still have/feel sex/ I know this seems silly, but I am waiting for marriage, but feel like maybe I should do it before the surgery, incase I can't feel anything, lol. Basically I have know idea what to expect but only the horrifying things my doctors say can happen. I am hoping someone out there can give some comfort and hope that life can go on like normal.

[qhcrazy]

Hi Ashley, I'd be happy to help describe my experience to you so you might have some idea about your future. That's great that you're going to vet school, good for you!!!! I am 42 and last Fall had my diagnosis of a tumor from C7-T4, it was a benign intramedullary (inside the spinal cord), ependymoma, grade II. I KNOW the shock and fear you are facing, but know that you are so NOT alone! I had surgery and it was resected fully and then I stayed in the neuro-ICU for about 10 days. I DID feel my feet and touch, but it was different. I was nothing but buzzing and charging sensations running all up and down my spine, and legs, and feet. I was then transferred to a rehab. hospital for a couple of weeks to regain strength and learn how to walk again. Let me just say, that the initial "stuff" settles down differently for everyone and everyone's recovery is different. I can walk again, and do pretty much everything I used to do. Just remember that your recovery depends upon you and your doctor. I wish you the very best and know you can come here if you have any questions after your successful surgery!!!!

[cindylee]

Hi Ashley, A lot depends on what your deficits are right now, the skill of your doctor, the rehab, and your general attitude and health. Since you are so young, you have a wonderful chance of success at this surgery. Mine was in a different location than yours, so all I can do is cheer you on in your decision. But we have a lot of other folks here who have had similiar surgery to yours that will chime in, I am sure. Do not lose your positive attitude. This place has some great information for you. Do you feel the need of a second opinion, or is this must hurry-up surgery? Do not panic. Most of the folks here will tell you that it is an adjustment, having a spinal cord tumor. But there are a lot of success stories here too. Take care and keep us posted. Hugs, Cindy

[supv26]

Hello!
Mine was a Schwannoma at T11-L1. I didn't have the numbness rather a lot of pain in my legs. They were able to get most of the tumor but now I deal with pain in the surgery area.

As for you other questions, I am 45 and married. With the help from a little blue pill now and then out intimacy it GREAT!

I do not work out and cycle at all anymore due to the pain but I do ride a motorcycle and do almost everything else I used to do!

Hang in there and be strong, follow your DR's orders and with support from your friends/family I think you'll be alright!

Oh, and be sure to hang around here too!!! Lot's of cool people here with the same issues with lots of ideas!

[Think Positive]

Ashley, please do some more research before deciding on the biopsy procedure versus tumor resection/removal. There is a recent thread that addresses this. I'll try to find it and let you know which one it is. I know you don't have much time before your scheduled procedure, but it is very important that you know what to expect, etc.

You have found the right place and the right people to help you through this.

Kim

[Think Positive]

Ashley, I found the thread that I think you should read. The Subject is "Those not yet operated on". It was started on April 22nd and the last post was May 2nd. There is a lot to read but I think it would be worth your while!

Good luck!

Kim

[Linda51]

Hi Ashley,

Welcome to the group but sorry it had to be this way. Make sure you educate yourself as much as possible. I will say you are young so that is good for you. Your tumor is small but still can do alot of damage and it good you got great family/friends support. Make sure your doctor has experience in sct. Make sure he will use Evoked potential monitoring during surgery. What this will do is let the surgeon know if he/she is getting to close to the nerves if he/she is it will go off and he/she will know to stop and then start back. I will say not all NS believes in this but those who do they usually have better outcomes for their patients. Life itself comes with many risks so this is no different but if you feel comfortable with your surgeon and you have a good attitude and with prayers you should do fine but also know you may be some different afterwards than before. I don't know how many symptoms you are having but the rule of the thumb is the way you go in is the way you come out. Some will say their experience was the opposite of that saying. Everyone case is different so please take whatever one says knowing your outcome could be the best and than again only time will tell for sure how you will be.

Today technolgy at it best so that another good thing for you. I'd like to emphasize on you talking to your doctor about the biopsy. It is true the only way they know what type of tumor you got is by doing a biopsy but most NS today goes ahead and take the tumor out the first time so you don't have to go through it again. I had the biopsy done first then a second surgery 2 months later. I was already messed up before my surgery but afterwards was worse. Just talk to your doctor about this and if your not happy with his answer you can always research for more opinions. It really doesn't hurt to have several opinions anyway.

As far as numbness it can come and go and also it might always be there. Your recovery can take 18 to 24 months but than again you may be the one that does really well and it might not be that long for you. Most in the group has therapy but there is a few that doesn't need it at all. Some even walks out of the hospital after this while other may have to use the wheelchair, walker, cane then on their own. Everyone is different. Numbness, tingling, pain, stiffness is usually something we can all agree on that we all have. It does get better and after awhile you don't even think nothing about it, it just comes natural for you to feel that way.

You should be able to drive but it will depends on your outcome how long that will be. When it comes to sct surgery you don't have surgery one day then back to normal 6 to 8 weeks it takes much longer than that but we all are different. With time and patience and not giving up you should be able to live a good normal life but you will also appreciate life in a much better way after this. Wishing you only the best and feel free to ask as many questions you like to the group. We are here for you.

~Linda

[CTOOM91]

Ashley,if you opt for surgery choose surgery to remove the tumor not biopsy alone.Do not be afraid to question your surgeon extensively,if your surgeon does not have a lot of experience with spinal cord tumors
move on,all neurosurgeons are not the same.There is much information
on this site to lead you in the right direction.When you find the right surgeon with the proper experience your chances of living a long happy life with full function are excellent.I repeat,ask lots of questions,there are no dumb questions.This is the most important decision of your life do it right the first time.

[tc]

Dear Ashley,
PLEASE get a second or third opinion before having that biopsy. I have an intramedullary tumor at C-6/7, but every neurosurgeon I have seen said not to have it biopsied. It will be biopsied when I have surgery to have the tumor resected. Please question why they are recommending a biopsy. Ask how many spinal cord tumors your neurosurgeon has operated on. How many cases does he/she do a year?
What led to the discovery of your tumor? What symptoms are you having? Are they rapidly worsening? Have you had more than one set of MRIs? In other words, have they seen growth in your tumor over a period of time? My tumor was discovered almost a year ago and I still have not had surgery (though I know it is in my future at some point). My internet friend in Miami with a tumor at C-6/7 still hasn't had surgery either. Most likely, you have time to investigate all your options and you don't have to rush into this. Choosing the right/best neurosurgeon for the job is VERY important. Ependymomas typically grow very slowly, if that is the kind of tumor that you have. I would not proceed with the biopsy unless several neurosurgeons (experienced with scts) say that is the right thing to do.
Please send your MRIs to Dr. Jallo (Johns Hopkins) or Duke University's brain tumor center or anywhere else people here recommend.
Please keep in touch and post your questions. Let us know what is going on. I am sorry that this happened to you. I'm glad you found the group.
Teresa

[bethann]

Ashley,

I did have a biopsy first. We did not understand this is what we gave the Dr only permission to do. We had not found this site yet so my husband and I had no idea what we were getting into! Since you have found this site first that is great for you! I think the Dr would not have been able to take all of my tumor the first time any how though because it started to bleed and he had to quit. He said his vision was cloudy. Just to let you know though I think the fact that my tumor was not large and I did not have a lot of issues before surgery, I came out of it pretty good! My tumor was a little lower than yours.

Please do your research make sure you have a good Doctor (one that has worked with spinal cord tumors before).

Let us know how you are doing and if you ever have anymore questions there are a great group of people on this site that can help you! And even if you just feel like venting this is the place!

Beth