Chiari decompression twice within 10 days

[QueenB6]

Hello Everyone. I'm new to this Chiari disease. I just got diagnosed April 25th 2018,and my decompression June 15th. Well I was discharged on the morning of the 17th. The morning of the 18th I started draining clear fluid from my incision. This wasn't normal draining, it would completely saturate my clothes pillows and bedding! My husband couldn't kp me dry! I called my neurosurgeon, to only get informed this was normal. Well this went on for 3 more days and got worse with each day! And each day was told it was normal!!! That Thursday the 21st of June,I was readmitted back to the hospital to find out it was spinal fluid leaking and 1 more day at home may have killed me. I ended up having to get a 2nd decompression that Monday morning the 25th of June. I'm still so extremely stiff and I'm still in so much pain its depressing! I can turn my head left,but turning to the right is an EPIC FAIL,AND HORRIBLE PAIN! Has ANYONE else went thru this? Since its been a month post-op my headaches have returned, cant sleep, a tad bit of ringing in my ears. This is EXTREMELY frustrating. Can ANYONE answer what I should do?

[selmaS]

Hi and welcome to the Chiari forum.

I am so sorry you are having such a bad post op experience. May I ask why they had to do a second decompression surgery? They should only have had to repair the leak?...I am confused.

May I ask, was your Dr a true Chiari specialist and were ALL related conditions ruled out prior to surgery?

Do you still have swelling? If so, you need to use ice for short periods of time, but the best thing for me with the tightness you have was heat...I would use a heating pad for a few minutes and then do neck exercises my Dr recommended for me....and that helped with the headaches that come from the muscles getting tight....it is a vicious circle.

My next question is what do you do on a daily basis?

It is possible to be doing too much.....we all have our own time table as to how our body responds to surgery and how we heal...so listen to your body.

[QueenB6]

Hello SelmaS,and ty for welcoming me! I truly dont feel he was! He told me to repair my bad leak that he ALLOWED to go on for 4 days at home,3 in the hospital, it would take 45 mins. It took 4 hours. He said he noticed something he didn't see the 1st time. I'm sorry but I feel like that was BS. I also do the heat and cold compress,they help to a certain extent. I'm a MA,but due to the CM symptoms that had gotten worse over the years w/o my knowledge of what I was going thru,I've been off of work for 2 years. I'm a stay at home wife/mom. And my husband hasn't ALLOWED me to touch a thing! I do some walking thru the house,and when I go out for a bit,but no lifting, no straining, no cleaning, no cooking. My husband has bn AWESOME thru this entire process. I've also gotten alot weaker with movement/muscle tone on my right side of my body. I also have no feeling on the back right side of my head. This truly worries me. I'm currently in the process off going to see a 2nd NS,due to all these complications from this NS. I have ROM to the left,but turning to the right has been EXTREMELY painful and difficult. Alot of the symptoms prior to surgery, have started to come back. They aren't as severe, but they are PRESENT. Is this normal so soon?

[QueenB6]

And I'm so sorry for the late response. I haven't really been feeling well due to all of this surgery and trying to stay on top of pain.

[selmaS]

If you are still using  ice then don't use the heat as they are used for different issues....swelling use ice....for muscle tightness, the heat....and in addition to the heat there are exercises you should be doing to get your ROM back in your neck.

Were you ever checked for related conditions?

ANd do you have a copy of the OR report? IF not, contact the hospital/facility your surgery was performed at....this will help any other Dr you go to in the future to help you,

Symptoms do return as you heal and as you mentioned should not be as severe as before surgery or last as long.....it is something that can cause depression since just after surgery in recovery we feel sooooooooo much better, but that is all the meds we are on....once we step off  the strong meds we start to notice symptoms coming back, and yes it is normal....HOWEVER if you develop symptoms you never had or they are severe and do not go away....then you need to talk to a Dr.

[QueenB6]

Ok thank you SelmaS. You truly know ALOT about Chiari. I've done so much research on my own since I was diagnosed, but none has been informative as this group. I recently found out,I was born with this CM. What caused my symptoms to start,was back in 2014 I had 3 spinal tarps within 36 hours. Every since than,I've been HORRIBLE. But,I still haven't been to PT. My NS never sent the referral over. So I had to call my PCP to get this done! Its MISERABLE not being able to turn to the right,or having my dominant side (right) very weak. Also,is it true Chiarians have to tell the DMV about our condition? I read online if we dont,and get into an ACCIDENT we'll be fined up to $1000.

[selmaS]

Well that is an interesting question and I was not aware of it....maybe something new? But I will look into it. I no longer drive , so I am out of the loop on that topic.

Spinal taps can cause CSF leaks....and they can also pull the tonsils down if they do the draw too fast....so it is important to let the technician know if you have Chiari so they do the draw correctly...in my opinion they should do it slowly and correctly even if you do not say you have Chiari as it can cause issues for those without it too.....

It's possible you have a leak somewhere that was not detected.. Just a thought

[Lisagchiari]

I do not have an answer for you , but I am praying for you !

[QueenB6]

Thank you so much Lisagchiari.