Post-op and NS says returning symptoms aren't Chiari related

I had my surgery on December 2ND. Since the surgery, all of my pre-op symptoms have slowly returned. I had originally been diagnosed with Encephalopathy (brain disease) by my NL. It is a pretty vague term. I called my NS yesterday to let them know what about the symptoms and they said that it is probably just migraines, because I had a history of them. These are NOT migraines. They are pressure headaches. I had migraines soon after the birth of my son, 9 yrs ago! And they only lasted for about a year. Haven't had any since! They also said that they could refer me to a headaches specialist. Ugh!!! They are sending me back to my NL. The NS also asked if I had any swelling and I told them..yes, the left side of the incision is definitely higher than the right and I am still having a lot of pain on that side. The right side feels like nothing was ever done to it. She asked if I felt a pocket of fluid and I don't. So, she said not to worry that they would see me on the 11TH. Lol. I am starting to find all of it kind of amusing. Not one of them knows what this is like and I really don't think that they have any idea what is going on.

I know that I needed to have the decompression surgery because of the syrinx, but this is all kind of crazy. Now, I feel like I am back to square one. For some reason though, I have accepted it. I am OK. I don't know what changed overnight, but I can honestly say that I am prepared for more appointments and no real answers. As my Rheumatologist said...I am a bit of an enigma. I am going to take that as a compliment! Lol.

Hope everyone is having a good day!!!

You are still very fresh from surgery so I'm not sure you can say the surgery didn't work at 4 weeks post-op. My NS told me I could see symptoms come and go for up to a year. I did have several bad headaches up through 8 weeks post-op.

Hang in there! I pray you get some relief soon.

Blessings,

Diana

Hey Dianna,

I needed the surgery and I am sure it will be a long time before I am healed from it. It just seemed like the NS passed the buck. I wish they would just take things more seriously and actually listen. I have an appt on the 11th, hopefully they will just listen. They could have said that it is just the healing process, but they seem to think at 6 wks, I will be able to return to work....in the ICU?! I am not really comfortable with that at this point. It will eventually get better. I still have faith :)

How long ago did you have your surgery? Do you still have any pre-op symptoms?

Diana Smirl said:

You are still very fresh from surgery so I'm not sure you can say the surgery didn't work at 4 weeks post-op. My NS told me I could see symptoms come and go for up to a year. I did have several bad headaches up through 8 weeks post-op.

Hang in there! I pray you get some relief soon.

Blessings,

Diana

Dr Oro did my surgery 09/20/11. I have had a very smooth recovery. I was released 11/28/11 to do anything except contact sports or fast roller coasters.

The only symptom I am still having is my pinkies on both hands are numb most to the time. I didn't really have bad headaches before surgery. The vertigo, balance issues, cognitive problems and neck pain were my pre-op symptoms that I couldn't function through. I did have some bad headaches post op but the last one was Thanksgiving day and I have been good since. I think they may be migraines like I had back in my 20s because since then I have taken migranes meds as soon as I feel one coming on and it has helped.

I returned to work at 4 weeks post op but I am an Accounting Director and need to be able to think nothing physical.

FWIW, I did see 4 NS before surgery and 3 of the 4 made no guarentees on the surgery helping with the headaches.

Try to take it easy so you can heal. Will you see the NS to be released back to work?

Diana