Surgery is drawing near...what do I do?

General
1

I am due to have surgery on Dec.7. The closer it seems to get the more uncertain i am becoming. I am driving my husband nuts with all my back and forth. I didnt realize it til he told me this morning...that i am starting to annoy him. I guess because he gets it in his head that im gonna have surgery, then when i say i change my mind and thats my final answer...he has to reprogramm his mindset again. I feel bad for putting him through this but at the same time...who else am i supposed to vent to...Then I remembered this great big support group that i signed up with a few weeks ago. So here i am, wide open to any advice that is given. Last sept, i had an mri which showed a 6mm herniation. Surgery was not an option, especially after the neurosurgeon showed me what they do. During the months leading up to that mri, i have had a colonoscopy, endoscopy, an allteration(hysterectomy). I have seen allergists, cardiologist, had to wear a heart monitor, have been scheduled for a sleep study. All this to figure out why i have been so dizzy and lightheaded and headaches and all my other symptoms. Turns out that i was extremely anemic....which is why i had a hysterectomy...long periods. But my symptoms came back right after...so fast forward to the mri last sept. I had to avoid my neurologist who was convinced my headaches were caused by sleep apnea and is determined to make me take topomax. Had more mri's in october and now my herniation is 9 almost 10mm and my csf flow has slowed down...so surgery became an option. If anyone can decipher my rambling, i sure would appreciate some input. Thanks in advance,

Tonya.

2

Hi....

I can certainly understand you feelings about the surgery....However , like Beeba and Emmaline.....that is all true.

I had my decopression a little over 4 yrs ago...Recovery, Looking back now...was not all that bad! Don't get me wrong..the 1st 3 weeks or so, I was in a lot of surgical pain..but that did end.

This is just my opinion..I am not a doc or even in the Medical field anymore....BUT....your NL seeems to me to way off base with his thoughts on Chiari and your Sx's..many of us here have had similar experiences with NL's...they just don't see that many Chiari patient, along with being CSF flow not flowing the way it should be.

I watched a WebCast on line showing a NS doing a decompression on a small boy..during the surgery, a moderator was asking him questions throught the operation that we asked by lay people. I highly recommend you watching it.....The VERY last thing this well respected NS said was , basically.."From a NS standpoint, this operation is technically an easy surgery."

That made me have a bit more confidence in my choice to have mine done ..also..my own NS told me the EXACT same thing...He went on to tell me that the neck fusion I had have many mths before the decopmpression was "far more technical and had many more risk factors" My NS is the Chief NS in the state where I had it done. I moved 6 hrs away only 2 mths after surgery..packed up an entire house and moved..Again, looking back...I guess I must have been doing great to do that.... not to mention we drove the 6 hrs to look at houses about 2.5 weeks after surgery..my point here is that now in hindsight....My recovery went well.

I must be completely honest here..I did get some MEW SX's right after surgery..scared the heck out of me...called NS and he explained that since my CSF flow had been goofed up for so many yrs...it waas going to take time for the brain/body to adjust to this new , better flow,,,,He was spot on....after a couple of mths those Sx's went awy and did not return.

Also, you have to keep in mind that decompression is NOT A CURE..but a treatment....in hopes the Sx's do not get worse and also to avoid getting a syrinx...fluid filled cyst on the spinal cord..which can be very serious.

Sorry this is do darn long!!!! I want to suggest a book for you and your hubby , called.."Contents Under Pressure" by Ray D'Alonzo......Ray tell his story of his journey with Chiari..cannot say enough about this book.

Think if you want to get it ...you have to go online...it is cheap..about 13 bucks.

Hang in there and pls know that we are all here for you and will do our very best to answer you questions.

Peace,

Lori

3

I agree with all the above. Surgery is scary...especially brain surgery. I was extremely nervous about this surgery...I had never been so scared of a surgery before. I remember before my gallbladder and tonsils I had a feeling of peace and just knew I'd be fine. I didn't get that feeling before this surgery. I was a nervous wreck until they wheeled me in. I kept telling my husband that maybe my being so scared was a sign I shouldn't go through with it and he kept assuring me I'd be fine. In the end I had the surgery, recovery wasn't bad at all, and 6 weeks later I'm back at work!

Like Lori says my NS also told me that from a doctor's standpoint this surgery is one of the easiest neurosurgeries they do!

4

You guys have no idea how much you have helped me. You reminded me that my NS also said the same thing about this type of surgery being the least serious of all the brain surgeries they do. I really LOVE this board. I find being with folks who know exactly how you feel and what you are and will go through...is...well a blessing to say the least. And Beeba...your post made me laugh so hard. Cuz that is exactly how I see our trip to the hospital next week. Love and Blessings to you all.

Tonya.