Life after surgery...

[Guest guest]

Answering back Kathleen....please see attached email. I replied to the

group as it may or may not help others......

On Behalf Of _tnl919@..._ (mailto:tnl919@...)

I am told...once a chiarian, always a chiarian.

I went to the chiari web page today....it lists all symptoms associated

with chiari, but what about following surgery? Do you still have the same

symptoms, different symptoms or what to expect....can anyone offer some

guidance and comfort? Any feedback is greatly appreciated. I still get so

sick....I just do not know what to expect or think anymore....

Kathleen's experience;

Boy, this is a rough one. All of us are so different. We've had different

surgeries and results.

My first two surgeries in 1990 left me with 24/7 headaches, I was told I

didn't have chiari anymore, I just had constant migraine issues. Well, when

other neuro type symptoms kicked in, I decided a second opinion was

necessary, that only took me seven years.

Since then I've been told I have Chiari, Hydrocephalus, EDS, TCS, so who is

to say what is left from what. I am still very prone to headaches, never was

before 1990 though.

I think it is safe to say we will all have some type of neck soreness. I've

talked with others that had surgeries in the early 1990's and they seem to

have symptom flairs with weather fronts still.

There are still those very lucky that walk away and start feeling better the

second they leave the hospital, and never look back.

I think the more conditions involved create more of a complex situation,

more symptoms....m

Once you have had any surgery, where ever it is, it's not the same. As I've

heard, you can always take it away, you can't get it back. Think hard when

going into the OR, make sure it is a step that you are willing to live with

later. I know I was ready every time I've gone into the OR, and I don't

regret it, tried of it, hell yes.

Kathleen

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Thanks...I appreciate your words. I have CM1, TC, Reynaulds. Every day is

hard...I worry especially when a special occasion is coming up... how I will

feel on that day. It is terrible as I am sure you can appreciate!! I have

days at work that I just fight myself to make it through the day...my boss just

does not understand nor would he appreciate me leaving....so I try to keep

going. I never call in; never ask to leave early. I work FT.

I pray for good days, curse the rough days. The headaches get to be so bad!

Pressure, nausea. I have had 3 decompressions, 2 TC surgeries. My body is

at its limit, I believe. It seems to be getting harder and harder to keep

positive and motivated. I lost my vision at work while in the middle of a

project last week...completely humiliated me!! I went to the ophthalmologist

to

have my eyes checked...he said they are fine. I have an appointment with my

neurologist on Tuesday....I am oh so nervous to go!! I am at the point that

I worry about going to the doctors.....sometimes they find what is wrong,

sometimes they don't.

I hate the burden I have placed on my family. The stress and emotions that

they have to deal with due to my condition. They are wonderful and have

stood by me...I feel so guilty!!! We can be out having a great time and out of

no where....I am sick. I just hate this disease!!!!

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