Hi everyone- I wanted to share my positive surgery story with you :) We all need more positive things in our lives!
PRE-SURGERY: I was diagnosed with an 11 mm Chiari herniation and multiple areas of blocked CSF flow 2+ years ago but I didn't really display symptoms until a year ago when my symptoms gained momentum at an alarming rate. By the time I saw the surgeon I had horrible and frequent pressure headaches, major dizzy spells, exhaustion, total loss of my gag reflex, blurred vision, memory and word-finding problems and weakness so severe I had to be sent to the ER to get checked for a stroke. My NS told me I needed surgery and I was ready to do it.
SURGERY (4/12/13): My surgery was supposed to take 2.5 hours. Instead it took 5. It turned out that my herniation actually went past my C2 vertebrae (around 25 mm, not the previously suspected 11 mm) and the reason that it grew so much was that I had a brain tumor in that same area that was adding pressure to the tonsils and increasing their herniation and the CSF blockage (What are the odds, seriously? Apparently this is so unusual that my NS is going to present my case at a conference). I will be forever thankful that the tumor was benign and my NS was able to resect the entire mass.
RECOVERY: Since I've gotten over the initial (really painful) period I have not had any headaches, which feels like a MIRACLE. I also have not been dizzy or had vision problems. My gag reflex came back with a vengeance (my stomach does not like narcotics...) and I have taken it upon myself to do physical therapy not only for my neck, but to help rebuild the weak muscles all over my body. It is really helping! I still have some memory/word finding problems, but I'll just have to see if those get better with time. The most fun thing is that the people around me keep telling me that they are excited to see the "old Donna" coming back.
I just wanted to share with you guys that I had a really difficult and unusual case and I have come out of it with flying colors. I hope that you can find inspiration in this and that you can have the same results as well. :)
I am so glad you are going so well. Congratulations !!! We have a Success Story Group if you would like to join and add your story. It will inspire many.
Thank you so much! I really needed to hear this today. My surgery is scheduled for Thursday and I am terrified. Last night my daughter told me all she wanted was her old mom back. I am so glad to hear that this has been a positive experience for you. Just knowing you have found happiness puts a smile on my face!!!
Did they remove your tonsils of the cerebellum? I'm having some memory/word finding problems also. The removed my tonsil portion. That was not the plan, however like yours, it was worse than they originally thought.
Donna - I actually cried when you said that friends had noticed the “old donna” coming back.
I desperately want that… I get so upset that im not the same person anymore. I used to talk A LOT and be bubbly all the time. But now I barely join in on conversations. (I tune out without realising… and cant prevent myself from doing it!)
I am so so glad to read your story as my surgery is scheduled for 5th July
((Hugs))
My NS used electrocautery to shrink my tonsils, so nothing was actually removed, even though I don't think they are working in the shrunken areas anymore (that is what I think at least - don't quote me on that).
I would say that my memory/word finding issues are the same as before surgery, definitely not worse. This is why I'm hoping they will still improve over time. Even if they don't, I am still very happy with my outcome, especially considering the surprise tumor.
chiromarketing said:
Did they remove your tonsils of the cerebellum? I'm having some memory/word finding problems also. The removed my tonsil portion. That was not the plan, however like yours, it was worse than they originally thought.
I agree - making medical history is generally a bad thing. I do admit that, since everything turned out ok, I think it would be fun to see my NS present my case in medical lingo to other doctors at a conference. I'm someone that always wants more info and no one can really tell me why I got a tumor on top of my Chiari or whether I'll get another one. We'll just have to wait and see.
Beeba said:
You go girl!! This is great news and people need to hear it. You never really want to make medical history but in this case I am glad you did and are doing well. Keeping you in my thoughts for continued healing and progress.
I want to wish you great success for your surgery! I was scared beforehand and the first days were tough, but the pain got better so much faster than I thought it would and now I'm becoming the "old me" again :)
I here's to a swift recovery and excellent results for you!
Nicole Bowen said:
Donna,
Thank you so much! I really needed to hear this today. My surgery is scheduled for Thursday and I am terrified. Last night my daughter told me all she wanted was her old mom back. I am so glad to hear that this has been a positive experience for you. Just knowing you have found happiness puts a smile on my face!!!
I am so glad that I can bring you hope! Hang in there until the 5th - it will be here before you know it and then you will be on the road to recovery. :)
bozzylozzy said:
Donna - I actually cried when you said that friends had noticed the "old donna" coming back. I desperately want that.. I get so upset that im not the same person anymore. I used to talk A LOT and be bubbly all the time. But now I barely join in on conversations. (I tune out without realising.. and cant prevent myself from doing it!)
I am so so glad to read your story as my surgery is scheduled for 5th July ((Hugs))