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?

[plumsaki]

I agree with Selma.  It isn't the surgery that has caused my limitations--I was limited prior to surgery and if I didn't have my PFD, I would have eventually had far worse issues to contend with.  I don't know what your individual situation is, but I can say that delaying surgery just from what you're reading here may not be the best decision.  That's just my humble opinion...

I'm also wondering if you're seeing a chiari specialist?

[selmaS]

Hi...it is not the surgery that dictates what u can and can not do it is the dx of having chiari.

If u put off surgery u could get worse and have more restrictions bcuz of perm damage.

Make sure u r scheduled with a chiari specialist.May we ask where u r having ur surgery...and who ur NS is??

"selma"

[dmm10310]

I am going for CM1 surgery in two weeks, however, after reading all of the war stories above, I'm not sure.  I want to get better.  I want to exercise and dance, and move furniture and paint my walls and lift the kids, but from the looks of it, I don't think I'll be able to do all of these things. I don't think I'll have that surgery after all.

[jnnepgn]

I would push to get that full spine MRI done.

[cfinniss]

i do sleep on my side with knees bent always because that is the only way i feel comfortable,  i feel like i have pulling sensation in shoulders, jaw area lower facial area and neck.  shrugg my shoulders a lot because it relieves tension.  My doc never did a full spine MRIon me to check for syrinx or tethered cord.  once he found the chiari and did test to check my spinal flow and saw that it was being severely restricted he scheduled the surgery.  my husband mentioned tethered cord to him and he kind of just brushed that off.  i do get pain in upper calf of legs when walking but thought that was from a lower back problem.  now i wonder?
Cathy

[selmaS]

Hi Cathy,

I would reccommend that u be completely checked out .Was a syrinx ruled for u?
Sorry, I am having diff remembering what ur situation is.

TC can cause bowel and bladder issues.Those with chiari also tend to sleep on their sides with knees bent.Pulling can be felt in the mid to lower back.Pain in the legs.

TC - bcuz it is tethered is pulling down of the brain stem and can cause chiari to form if not already there or cause it to continue to grow. I know someone that had a TC release surgery prior to the surgery her CM herniation was 7mm after it was 2mm.Drs continue to monitor the CM herniation to see if it continues to retract.

I hope this  answers ur question.Keep in mind u may continue to have risidual pains from the chiari as there is no cure.

"selma"

[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.

[selmaS]

U r welcome...I am sure the zipperheads will be of help to u.

I have not had an evel by a chiari specialist...I have been waiting for what feels like forever.I finally got confirmation yesterday that my files did infact arrive.And I was assigned a nurse, outside of that...I do not know nething else.

I have been dx with a 6mm chiari,tethered cord,scoliosis,DDD, cervical spinal stinosis.

I have other conditions not sure if they r related but the above listed r what I expect to have my eval at TCI done on.

"selma"

[tmk83]

Hi, yes I am post surgery, in June it would have been 2 years since my surgery.  I am getting very frustrated at the restrictions that I am faced with still, it seems to be getting worse and returning to what it was like before surgery.
I did have a dura patch placed during my surgery, this did leak a month or two afterwards but didn't require a second surgery to fix.  I had an MRI in December 2008 and my surgeon said everything looked good which is why I am off to see a Neurologist today to see if there could be another reason for my return symptoms.
Thank you for the recommendation of zipperheads - I might have a look :)
Have you been told that you need to have surgery?

[selmaS]

Hi...you are asking about post surgery?

If so, ask on the zipperheads link...that is where most of the member's that have had surgery are posted....so if u do not get an answer you will know who to ask.

Even tho  I have not had surgery I do understand the issues with being in  a loud place such as a restaruant.....I try and avoid those I know tend to be a bit too noisey.

I pray the specialist can help you....have u had a recent check up, MRI?
It is possible if ur surgeon did not put in a dura patch that ur herniation has reoccured.....
Please post an update
Godspeed
"selma"

[tmk83]

I am just wondering is everyone able to lead a normal life?
Work full time?  Do everything you want to?

I am sitting at work and my head is so sore - I just wish I could lay down on the floor.
I've also been to dinners and had to leave early or go outside to lay down in my car.  I understand that I may get headaches after exercise but I thought the surgery would have at least helped with every day life.

I have a specialist appointment tomorrow - I have my fingers crossed!

[redkim]

I spoke to someone who during her surgery has a part of your tonsil "burned" to help it shrink.  I asked her if she has an side effects from it and she said that she has no concept of time.  She said that it could be Tuesday and someone will say let's do X on Saturday and she would have no idea when Saturday came and went.  She said she keeps several calendars around the house, car, work, etc to help keep track...

But your situation could be different...

[tmk83]

Thank you for the return comments - what I should have said is that my surgeon has sent me to see a neurologist (the neurologist that diagnosed me has since retired).

My surgeon is a Professor and apparently one of the best in the field but I am unsure whether he is a Chiari specialist as such!  With the flow part - the surgeon said the flow at the back of the cerebellum is slightly reduced.

Does anyone know anything about "electrocautery to shrink the cerebellar tonsils.  This surgical technique involves destroying tissue with high-frequency electrical currents." or "a shunt system that drains excess fluid and relieves pressure inside the head" do either of these help?  My surgeon honestly expected me to respond well to the surgery, better than I have anyway.

[selmaS]

I also wanted to add to what Shane said, is ur NS a chiari specialist?

Ur flow report is confusing to me as well.....if u have another issue going on is unclear.

I hope u continue to post here, it's a great place for info and support!

Good luck
Godspeed
"selma"

[Shane99]

Lor124,

Yeah, right now (especially with Christmas) my money's tight, but hopefully I'll be able to get one in the next month or so.



tmk83,

Well, the problem is; sometimes the surgery just doesn't help. There is no cure for Chiari, the surgery only relieves the symptoms. It sounds like it maybe only helped you a little. Not trying to be negative or scare you, but you need to understand that it's possible that you'll never be as active as you were a few years ago. Chiari is a neurological condition. Even Chiari 1 can have adverse affects on the nervous system - way down into your spine.

You said that you had another MRI and it showed, ". . . flow is reduced at the back but flow is fine at the front so everything should be good!" I'm not sure what you mean. The front and back of what?

Also, who ordered and looked at the MRI? You said your surgeon, but then later you say he sent you to see your surgeon. Do you have more than one surgeon?

Often if nothing looks wrong on a follow up MRI, they have to start over and see if it could be something else. They're not ignoring the Chiari, they're just double checking. You could have other issues with your spine that are causing headaches.

[tmk83]

Hi, I am also 25 and have a chiari 1.  I had my operation in June 07, about a month after I was rushed to hospital in severe pain, they ended up draining fluid in the emergency room because it was putting pressure on my brain, I stayed in hospital for a few days with the though that I would need a second surgery to repair a hole in my graph however the fluid didn't build up again over those days in hospital so my surgeon left it.  Even now can't even go for a walk let alone a run etc for exercise without getting a headache afterwards which makes me need to lie down.  The only symptom I had before the surgery was really bad headaches, I had no numbing or tingling!  I thought the surgery would help - it has reduced some day to day symptoms but the lifting, moving and exercising headaches are just as bad as they used to be.  All I want to be able to do is get up and go for a run before work in the mornings! I have been back to see my surgeon and had another MRI - he said flow is reduced at the back but flow is fine at the front so everything should be good!  He reckons the reduced flow wouldn't cause me problems - so why am I still having them?  He has now sent me back to a neurosurgeon for other possible causes - whats the point if the symptoms are the same as before the surgery?  Why look for another cause?

[lor124]

Recumbent bikes are better for people with back issues. I know it works better for me than the regular ones. You say you don't have one, Can I ask...Is that because you have no way to get one home or is it a money issue?

[Shane99]

Thanks. Yeah I use the resistance bands also.

[tink71083]

I am so sorry to hear about you troubles. I cannot lift heave weights either. I just use a resistance band at home. Although my symptoms are not as severe as yours I can kind of relate to what you are going through. I hope things get better for you in time.