Hi everyone!! I apologize for not posting sooner about the procedure and the recovery. Life has definitely gotten BETTER!!!
July 8th was my revision and fusion by dr Rekate and dr Insinga from TCI. I stayed inpatient for 5 days then took the 2.5 hour drive home back to NJ.
The first 4 weeks was tough. I could not sleep laying down so I spent most of my time in a chair in the family room with my head propped up and packed in ice. The ice really made a lot of my discomfort go away. (I’m sure the meds helped in that too)
Last week I started sleeping in bed on my side with my head propped so it would remain straight and not bend into the pillow. After a few days, I made it thru the night without waking in unbearable pain and needing meds.
I no longer wear the collar as it hurts the back of my head. So I’m cautious. I would wear it if we went out somewhere or drove somewhere but now, I don’t wear it much at all. I find it more comfortable letting my head fall naturally to rest my neck muscles rather than having them tight in the collar.
I still take Flexeril for the neck spasms. I also have Vicodin for pain. The back of my head is still pretty numb and sore. I can feel the lumps in my neck and head where the screws are and they too are very sore. Dr Insinga told me that the head numbness was normal and that it would be a little bit before that subsides. My head remains pretty sore to touch. Even touching my hair is uncomfortable in some spots. I think that too will eventually get better.
I find that if I don’t overdo it I can go without the meds for longer periods of time (naturally) HOWEVER…I recommend not buying a new house before surgery and moving into it 6 weeks post-op!!! Being a wife and mom of 2, this has been a tough spot for me considering I want to pack stuff, straighten up, clean…etc. I definitely overdid it on more than one occasion and seriously paid for it later.
I have to say that I feel really good considering I am just 5 weeks out. The laundry list of issues I was dealing with before seems to be shorter now 
Dr Insinga and Dr Rekate were and are still great! They fully explain everything prior and came in post op a few times to check in. They are available via email and their nurses have always called back to answer my questions should I have one. Dr Insinga spared shaving my head as much as they first told me saying " he has four girls at home and can understand my concerns with hair not being there", which I thought was really considerate. My first surgery in 2010 by the non-chiari doc left me with a pretty big racing stripe up the back of my head. Not the case this time:)
Considering the compression of my brain stem was pretty significant (I had a bend of 114 degrees - typically brain stems bend at 145ish…yikes!) I am anxious to see what damage is long term and what / is relieving and I am able to get back. I am hopefully that the permanent damage is minimal compared to what I have been dealing with for the last four years. Being fully disabled at the age of 32 has been devastating. I’m hopeful that I can heal well enough to be able to enjoy some things I have really missed out on.
I head up to TCI for my 6 week post op appointment next week. I do have a referral for physical therapy to work on ROM, decrease muscle spasms, and strength and mobility. I am feeling more anxious now that ever before. Dealing with debilitating pain and a HUGE list of symptoms that were taking away my enjoyment in life was the worst thing I could ever go through. I see a light at the end of the tunnel now, that I pray so hard everyday that I will be able to regain some of my independence and go back to a life that I loved four years ago!! It has been a very long journey and I truly am so thankful for these doctors. They are life changing!
Feel free to ask me any questions about stuff. I really think that the more information someone has about this, dealing with it personally, the more empowered they feel to make the right choices for themselves and those that are directly impacted my it.
Hope everyone is getting around ok and listening to their bodies!! Have faith in the " gut feelings". 99% of the time, it’s right!
All the Best!
burdzmom