I am 2 months post decompression surgery now and I keep reading how the decompression surgery is only a type of treatment for chiari. So my question is what should I expect? I know that I am feeling much better than before the surgery, but will I ever be 100%? Are there restrictions that I should follow for the rest of my life? I feel very confused about what expectations I should have. I know I have heard many ppl talk about how it is just a band-aide, but what is that supposed to mean. What treatments should I look into as life long things. I just need lots of advice on where I am supposed to go from here....
Michelle,
I was actually wondering a lot of the same things as you. WHAT NOW??? I feel like I am just supposed to sit and wait for something to happen and then have the same run around as I did in the beginning of all of this. I was feeling great until about 10 to 12 weeks post op. I have new symptoms that weren't there before and now new meds, my main complaint before surgery were the awful headaches that never went away. Those are better but I still feel it usually once a day (not sure why). I am just not sure what is next. I also wondered about the restrictions and if they are life long and why they are. I would also like to know that since this isn't a cure, am I going to progressively get worse again? I will be keeping an eye on this post in the hopes of someone chiming in about the "answers." Thanks so much for posting this topic, hugs to you!
Crystal
It looks like we all have questions, worries, and the unknown is really hard. I wish Chiari was a better know thing in the medical field and we had studies and set guidelines that were for sures. I too will keep an eye out to hear what people who are further out in their surgeries go through and what they have found helpful.
Beeba- You are too cute! Yes I was feeling like you, but I also keep seeing post after post about band-aids or it just being a treatment and I WANT ANSWERS NOW!!! I'm not a very patient person. I also can't imagine not getting any better than I am now. I feel great about where I am at, but I want to be normal again. I want to know if I will reach that point. I don't care if I have to a couple of years. I just want to know. Do I still have symptoms....yes, but they are better. I have also had a lot of issues with hyper sensitive emotions. Is that normal? I just have so many questions and I just don't have many answers.
I think we all have to realize the gut wrenching diagnosis that Chiari comes with. Most people are born with CM1, so for all the years you were alive you have had this. Now after surgery everything is back to the "normal", the way it's "suppose" to be. But that is not what your body has been used to for all of those years. It will take time, and everyone will have good days and bad days. Sometimes I think we forget, even with the pain and pressure- we have all of these opportunites. Cherish the good days and try to get through the bad. It is better than the alternative, which is having no days at all. ( sorry if this seems dramatic Ive been in ICU with my daughter and you just change when you see how bad it can be) Heres to more good days than bad, Love Nicole
I can't stand the feeling of the neurosurgeon just letting us go because his job is done (the surgery is done). Then going back to the neurologist and them saying again "I don't know" why you feel this way...It just feels like NOW WHAT!? So I still have issues but they never believe that Chiari could be the cause of them. Also, do I need to avoid roller coasters and such forever!??? Or is that for like a year? This has never been gone over with me, and I am frustrated with the lack of knowledge and answers from my doctors. I feel like I know more than they do at this point! Hope everyone is feeling well today : )
Crystal
Hi Michelle,
I can definitely relate to your question. I am 10 weeks post op, and for the first few weeks was freaked out reading on here all the posts about what now?..I have very much taken the positive mind and attitude since diagnosis but had found it really hard reading so many stories. The advice from my Neurosurgeon in response to my questions around this topic prior to surgery were as follows:
Bungy Jumping, Sky Diving or other extreme experiences such as those were his suggestions of activities to avoid.
He doesnt anticipate any issues with childbirth in the future.
That after surgery I should be able to basically do anything and live a normal life.
I again saw my surgeon this week, and brought the question up with him again about what to expect now.
He stated again that he believes that I should be able to live a normal life and that having belief that the treatment is a successful treatment will go a long way in recovery and into the future.
So with his advice, that's where I am at from now, I am going to live my life not hindered by the 'what if's' and don't get me wrong I accept I have been diagnosed with this disease, I have had my grieving and dealing period and now I choose life and everything that comes with it.
Stay strong and try not to question it too much although I know its hard, Enjoy each day