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Post by juliefromca on Sept 24, 2008 23:21:16 GMT -6
Hello, all. I'm sorry I've been gone so long. You were all so supportive while I was awaiting my surgery. I am now 10 weeks post-surgery and finally have found the energy & initiative to visit again.
My surgery went well and I will very luckily walk even though I couldn't move my right leg after surgery. A lot of rehab later, I feel grateful that I can.
My docs don't think I should necessarily have radiation, and I'm not convinced I should either, but I really don't want to ever have surgery again. It was a horrible experience (as I'm sure many of you know).
I do have a question for those who have had surgery, though- I have no sensation in my genital region, which is very upsetting, and I was wondering if you experienced this (if you are willing to share) and if it came back. My doc said he believes it will, but of course, you never know. I would be very sad to think that I could not share that kind of intimacy with my husband ever again.
However, I am very grateful for what I do have! Thank you, God!
Julie
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Post by drummer904 on Sept 24, 2008 23:29:32 GMT -6
Hi Julie, congrats on your surgery going well and being able to walk. As far as the sensation goes, I didnt have any in that area either for a while but "some" did come back on one side, so there's hope that more will eventually. It's only been 10 weeks, you have lots if time to see what comes back. Im just over 2 years post-op and still see a little change once in a while for the better.
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Post by peilynne on Sept 25, 2008 7:03:30 GMT -6
Oh Julie, I am so HAPPY for you. Thank god you can walk, that's huge!!!!!!!!! Well, to me it is, because I'm still fighting that battle. Your post just made my day, continue to improve, lots of hugs sent your way. On the other matter I've sent you a private email to your hotmail account. Keep in touch and let us know how are doing.
Lynne
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Post by chickiet on Sept 25, 2008 7:58:24 GMT -6
Hi Julie,
Congratulations on getting through the surgery. It sounds like you have made a lot of progress so far. As far as your question goes on the lack of sensation in the genital region - I understand exactly what you're going through, because I have that same issue myself. I can't say what "normally" happens, but since I had two surgeries last fall (2 months apart) and am now looking at a 3rd one (3 spinal cord surgeries in 13 months), I don't know when/if that sensation will return. I think that you (as well as I) just have to wait and see what happens. I too am curious if others have had a return to normal sensation after some period of time?
Just remember - 10 weeks is not very long, and you will undoubtedly have more changes / improvements. Remember where you were 10 weeks ago and how far you've come. Your body still has a lot of healing to do, so please be patient.
Chris
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Post by Tmasgio on Sept 25, 2008 10:52:41 GMT -6
Hi Julie,
I am happy for you and that you have gone through the easy part which is the surgery and the hard part is the recovery. Everyone is different but in regards to sexuality even if the sensation does not come back you will adapt and learn that there are other errogeneous areas that have not been affected and may take over as a stimulus for a very gratifying sex life. However, I would anticipate that you will see small changes over time as I know I have even though it is not the same it sure is still a whole lot of fun. My new motto is even bad sex is good sex...Hang in there we are all here for you.
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Post by rugger8 on Sept 25, 2008 11:45:12 GMT -6
Hi Julie,
Congrats on getting your surgery behind you and walking again!!!! What a great accomplishment for you and only at 10 weeks. Just think of the improvements you still have ahead of you!
I'm sorry to hear about your current areas of numbness for I as well have that problem. All I can say is that it gets better with time.... and to repeat what tmasgio said...there are other areas of stimulus that are also fun. Please know that we are here for you and good luck on your continued recovery.
Kristi
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Post by susan on Sept 25, 2008 17:50:05 GMT -6
Julie,
I am so glad you feel up to visiting and posting on the site. I have often wondered how your surgery and recovery went. I'm relieved to hear that you are doing well.
The surgery really is horrible, isn't it? Did you wake up in a lot of pain like I did? I just wanted them to put me back under anesthesia. It has been 8 months for me and I still find myself replaying things in my head.
For me at this point I still have a lot of sensory problems, but I also have a lot of hope that they will eventually resolve. Physicians have told me that you can still have nerve recovery up to 2 years after surgery, so hang in there.
What was the final result of the pathology on your tumor? Were they able to get it all?
I was praying for you! Great to hear that overall, it you had a great result.
Susan
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Post by missym on Sept 25, 2008 18:39:49 GMT -6
Julie, everyone has different experiences when it comes to numbness. My tumor was high in the cervical region and everything was numb from the neck down for a while. My downstairs region was slow to come back. I think I remember feeling there again at about the 3 month mark. My butt remains numb after 6 years.
Good luck
Missy
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Post by cindylee on Sept 25, 2008 20:22:46 GMT -6
Julie, the downstairs region for me slowly has come back to life. My butt was numb for almost 2 years, and the rest was very slow to come back. I'm not in a relationship to test things out, so I can only go by that kind of "tingly" feeling that lets me know there is still life down there once in awhile. Give it time...Cindy
So glad that you made it out of surgery okay. Ten weeks is still a short time. Just keep going ....you sound like you have a great outlook on things.
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Post by juliefromca on Sept 26, 2008 0:00:30 GMT -6
Oh I am so glad I found you all and that I came back on! I feel so supported and understood. My husband is very supportive, but no one can understand exactly what I've been through like all of you. Thanks for the uplifting and encouraging words. I've been trying to have the most positive outlook that I can, which was much easier when I was in rehab for 3 weeks and had a tangible goal to focus on, but i have been so weepy lately. (I'm sure it doesn't help that I had to defer my second year of grad school in psychology, which I have waited for years to begin and love, all because of this darned tumor). Anyway, some of you were asking how the pathology report was. It was, as they thought, a benign ependymoma. Thank goodness! I know I am very lucky- I'm trying to hold on to that. I hope to offer my support to the rest of you as you have to me. Thank you!!!!!!!!!!
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