PLEASE HELP, SPINAL TUMOR AND SCARED!!!

[tc]

Ashley,
If you register at this site (no cost), you will have access to a private inbox and outbox. You will also have access to some members' email addresses, if they have chosen to share them. I'd be happy to talk to you on the phone, too. I know it is a very scary time for you. I remember crying myself to sleep last summer and not knowing what to do next about my tumor. It took me several months to find this discussion board, so I was in a pretty lonely place for awhile. I'm glad you found us early on.
If you haven't already, read some of the stories on the People Page, especially the ones with tumors in the same place as yours. Also, check out the "library" page and read the "Common Questions and Concerns" written by Dr. Jallo.
Please ask all your questions!
Teresa

[asklein]

Ashley,
The responses and the information they gave you are first rate. Please listen to what you have been told. The ependymoma I had was at C1-2 and I am a urologic surgeon and still do surgery every week. My surgery was in 1996. There is no reason you can't be an outstanding Vet even after the tumor is removed.
Scott

[msweeney]

Ashley:

I think all of us remember the days around our initial diagnosis. It is so very hard to take it all in. I wish we could take away some of that fear and anxiety but all we can do is offer our experience and advice. My words of advice would be to take things one step at a time.

Focus on getting the very best surgeon you can to do the operation. That is the only variable you control at this point. Dr. Jallo at John Hopkins is the expert that all of us are familiar with. He will review your films and give you a second opinion. You can also start a new thread and ask for referrals from people who live in your area. If you cannot find a good surgeon in Nashville then broaden your geographic area.

It is very important to find a surgeon that does these tumor resections on a regular basis (I personally wanted someone who does ten to fifteen a year). Nothing speaks to the surgeon's skills more than number of surgeries with these tumors. If he does it well he will get referrals so look for how many a year he does and how many years he has been doing that kind of volume. That is my advice on surgeons.

Then spend your energy getting ready for surgery. It is too hard not to let your mind wander about what the probable outcome will be. The surgeon can only give you statistics and they will be vague only because they really don't know what your specific results will be. I remember worrying about what I would wind up like and my fears were all over the board. I, too, worried about sexual function as my tumor was right at the level where many of those nerves could be impacted (T9-T11). Many of the doctors who reviewed my films were surprised I had bladder and sexual functions intact prior to surgery. I have all those functions post surgery, though they took a while to wake back up after surgery.

After surgery the swelling in your spinal cord will cause a good deal of loss of function and as the swelling goes down and function returns you will know what if any damage has occurred. Then it is time to focus on rehab and getting strong again. Just know that this surgery can be very effective depending on the type of tumor and how it has grown etc...

This is a very scary time for you as it has been for all of us. You will be challenged in very new ways and we are all here for you and hope you have the very best result. God bless and keep you...

Matt

[David]

Hi Ashley,
I had an ependymoma (C6/C7) removed 10 years ago. At the time, the doctor's told me that I had a 60% chance of walking again. The tumor had attached itself to the left side of my spinal cord (weakening my left side of my body). I;m lucky that I'm right handed. You definitely get used to the numbness in your body. i was very lucky with my surgery. I walk with a brace on my left foot (my left ankle dozen;t work). I can drive a car and play golf with my son. I still face quite a bit of pain from time to time but I've found th Best way to fight the pain is to go to physical therapy. They help me keep my muscle tone & keep my muscles limber. I really have to stay religious with my stretching exercises or else I will have extreme tightness in my body. At the time of my surgery, my kids were really young (5, 7, and 9). I feel really blessed that I've had a chance to spend time with my wife and kids. They have all been so supportive of helping me through my rough times which aren't too frequent. As for your question on sex, my sex life has been wonderful (just can't perform as many positions as my wife would probably prefer -- isn't really an issue). I've been really lucky with life after my surgery. I think you'll be fine. You'll be amazed at what you can really deal with. You will definitely be weaker after your surgery & you'll have to work hard at rehab afterward to make your quality of life better.
Yf you need someone to talk with about your surgery, please feel Free to send me an email or give me a call ([e-mail])

[stevieray]

Ashley,

I hope you aren't freaked out by all this information. You can have your MRI's sent to Dr Jallo for a free diagnosis and opinion, he is one of the best surgeons in this area. He is at Johns Hopkins in Baltimore and has done surgeries for a lot of the members here. Please don't hesitate to send me an email if you have questions.

Steve
[e-mail]