Chiari Malformation and Exercise

[tink71083]

I am a 25 year old female and I was diagnosed with chiari 1 in January of 2008. I had the decompression surgery in March. 4 weeks after the surgery I returned to work. Four days later I had a high fever and all the symptoms had returned. I ended up in the ER and after a week of spinal taps and antibiotics (ruling out menangitis) they found that I had a leak in the dura graft anf a pocket of fluid had collected in my head, causing the return of the symptoms. I had the second surgery to repair the leak in April and did not return to work until July. It is not the end of November and from being inactive for so long I am very out of shape. I cannot even make a flight of stairs without being winded. I started working out this past week. A little cardio and some crunches and weights. I started very slow and am being very careful of what positions I use and such. I worked our all last week. This past weekend I was extremely dizzy and had terrible headaches and muscle spazms in my neck. I haven't felt that bad since I still had the staples in my head. All of my symptoms never fully went away after surgery. i still have the leg pains pretty severely and I still get headaches and dizzy spells. But it is much much better than it was before. Will I ever be able to exercise symptom free?

[cfinniss]

My Neurosurgeon is not a Chiari specialist but has done several Chiari surgeries with success.  I was just wondering if I should push a full spine MRI or not to check for a Tethered Cord?  I do have a lot of pressure and pain inbetween shoulder blades and lower back pain but I just figured that was from a previous injury when I fell and hit my tail bone really hard when I was younger.
What would symptoms of tethered cord be?
Cathy

[jnnepgn]

Prior to having my surgery, my neorosurgeon sent me back to get a full spine MRI after already having a head MRI which showed the Chiari and the syrinx. She wanted to determine the status of the remainder of my spine. Thankfully it looked good. Now, my surgery was February 25th. I already had a MRI post surgery last Wednesday. I think the reason I had it very soon was because we thought I was leaking CSF because I was suffering from severe head aches at the end of the 1st week I was home and after inspection of the site it was determined that they were weening me off the steroids too soon and that I was not leaking so she bumped my steroids up again, then the following week I saw her again to remove my staples and some fluid came out.  That day I didn't feel too good and was also the 2nd day of the weening off of the steroids.  So because I was having headaches again and some fluid came out she wrapped me up for 72 hours and ordered the MRI prior to my next appt with her.  The MRI showed no leak whatso ever. What came out was just residual from the surgery I was just having a bad time weening off the steroids. For that post surgery MRI she ordered an head MRI and upper Spine because I was feeling pressure in my upper spine so I thought it would be that the syrinx was collapsing. Which I'm happy to report has already gotten slightly smaller. My next appt with her is in about 4 weeks but she told me that she is going to send me for another MRI in 6 weeks.  So, I guess if the insurance will pay for it I would have her request it to ease any concerns you have.

Jeannie

[selmaS]

Hi Cathy,

I have not had the surgery yet.I have heard it is usually 6months for a MRI after surgery, but all NS are different and I also imagine it depends on how ur surgerya and recovery is going.

I had my full spine MRI'd and I am glad I had it done as I found I have scoliosis, and tethered cord.Had it not been done, just a decompression surgery would not have helped me bcuz of the TC.Sometimes a syrinx can be missed on MRI's and found during surgery.

May I ask was ur NS a chiari specialist?

Godspeed
"selma"

[cfinniss]

do any of you know how soon after decompression surgery should an MRI be done?
MY Neurosurgeon is not doing my MRI until 6 months after my surgery and I thought I would be getting an MRI much sooner than that.  My surgery was January 14 this year.
Can you guys let me know when you had your first MRI after your surgery please.
I also never had a full spine MRI only a brain and C-spine and I was wondering why my surgeon did not do a full spine MRI to check for a Syrinx or Tethered Cord.  Did any of you have a full spine MRI and do you know if that should be done for patients who have Chiari?
Thanks
cfinniss (cathy)

[selmaS]

I pray u find out what is going on and u share with us , so we can learn all the possibilities of this condition.

It's bad enuff that most of us have spent a lifetime seeing drs with no answers and then when u get a dx we get dismissed by drs.

Wow u did have a quick turn around from dx to surgery.

I do not know if I am fortunate or unfortunate in having to wait over a yr since dx.

Godspeed
"selma"

[tmk83]

I know what you meant about waiting.  It took 2 years to work out what was wrong with me.  I started to think that people thought I was exaggerating how bad I was feeling.

I was luck however that when I was told I had a Chiari it was a thursday and the following tuesday (4 days) I was in surgery.
That part I was glad I didn't have to wait for.

Now its just more waiting and worndering if something else is wrong.

Best of luck to you.