I've been gone for awhile

[tc]

Julie,
Where in your spine was your tumor located? How big had it gotten? I wanted to hear more of your story, such as symptoms that led to the discovery of the tumor and how long between discovery and surgery. I'm so glad to hear about your good outcome. I'm so sorry to hear about the delay in your schooling. I hope you'll be able to get back into it soon. I sent you a private message yesterday (click on the red "messages" in the top right header of your screen).
Teresa

[qhcrazy]

Hi Julie! Glad to hear you're walking! As for the downstairs region, I too was numb there for awhile. It was very slow to come back, but it did. Hang in there and keep in touch!

[8338]

Hi Julie,
Congrats on the positive outcome of your surgery. I am also interested in what part of your cord the tumor was. Mine was from t1-t2. I am still numb "here and there" down below but still have a numb butt and all the way up to where the tumor was. A very understanding husband is important and even though mine is disappointed that it's not like it used to be, he is comforted that I can enjoy just having him message my legs, arms etc.
Keep us updated. You're right..............no one can understand like all of us and thank God we can come here!!!!!!!!!!!!!
Barb

[msweeney]

Julie:

So very happy to hear that you are through surgery and are up and walking. I, too, had significant impact to my leg (though it was my left leg). It took me longer to walk unaided (roughly three months before I got rid of first one arm crutch then another month before dropping the other). I also had/have significant sensory impairment in my lower extremities.

Your question about genital sensation is one that was discussed a long time ago on our previous web site and there was a good thread that covered this topic. It is a topic that makes some people uncomfortable (and here I would include myself). It is also a topic that affects many and consequently is worthwhile of our attention and discussion both for you and for others who would search this site for information. So thank you for your courage in broaching this subject.

As I have said this is a very uncomfortable topic for me. As my wife likes to say, I grew up in a non-naked family, very proper around such things. But today is my three year anniversary and one of the things that I wanted to do as part of my day was to check in here and be supportive of our community. So despite my lack of comfort on the subject I have tried to share my experience in a straight forward manner. What follows lacks euphemisms so if that is uncomfortable you may want to stop reading at this point.

When I first was recovering from surgery I had little sensation below the surgical site (T9-T11). As sensation returned it seemed to come back in areas in different ways. As an example, on one leg I lack temperature sense on the other leg I have hypersensitivity to temperature (part of brown secourd syndrome). I began to get function in my pelvic region in the first three weeks but it was very much impaired. The pudendal nerve is a nerve in the pelvic region that innervates the external genitalia of both sexes, as well as sphincters for the bladder and the rectum. The pudendal nerve gives off branches that cover the above mentioned areas so it is not an all or nothing situation when it comes to sensation and function in those areas.

I began to regain control of my bladder within the first two weeks and rectum slower but followed. Seven days after surgery I began to wake in the morning with erections (normal occurrence for males). I was able to climax within two weeks despite some significant sensory deprivation. From there I can say that my sensory deprivation has improved steadily and significantly over a long period of time. It seemed to come back first to the penis and then to my testicles/scrotum improving from right to left.

Now I feel like overall my sensation in my genitals has mostly returned, though not exactly the same as it was before surgery. Specifically what I mean is that pressure sensations seem a bit heightened and I feel heightened temperature sensations generally in those areas. When I sit for longer periods I can get a fire/ice sensation around my perineum and rectum. I still feel improvements as the sensation seems to not be fully complete in my left testicle.

So there you have it and I will share one other aspect of recovery. I have to admit that I struggled for some time with body image. Without going into too much detail, I would say that I had a sense that a big part of who you are is your physical body. After surgery I felt that my body was damaged and this had an impact on how I felt about myself sexually. It took time and some work on my part to push beyond that and to come to healthy resolution on that issue. I would guess that many of us have struggled with that and I am happy to share more about that and what helped me individually with those who are in the midst of that struggle.

I wish you the very best in recovery!

Matt

[Day]

Congrats on making it through! Thank the Lord the thing was benign!

On the issue of numb nether regions. Mine were numb before and after surgery. My Bladder and Bowel responded much faster than the other area. But by about 3 1/2 months after my first surgery things began to "wake up". Things still continue to improve. Guess I just need more practice

Congrats again...May God Bless You,
Day

[guest]

Day: You wrote: "On the issue of numb nether regions. Mine were numb before and after surgery."

Are there any others out there (especially women) who felt that their "nether regions" started to lose feeling before their tumor was even discovered?