Chiari Online Support Group

Still having symptoms after surgery


#1

Hi, my name is Cassy. I’m new here on this site but not new to Chiari. I was diagnosed late 2015 and finally decided to get the surgery late 2016 (Oct.6). They said it would take 6 months to a year for recovery so I waited and some of my symptoms cleared for a little while but are now coming back again and worse. My neurologist already took a look at a recent MRI and said that everything healed up perfectly so now I’m wondering what is going on. I’m being sent from doctor to doctor. Has this happened to anyone?
My symptoms are dizziness and headaches everyday, frequent weakness in my arms and legs, nausea, bad ear aches everyday that keep me from doing simple activities such as talking and laughing, and depression.
I feel like since I’ve been from doctor to doctor that there won’t be a cure. I get down sometimes because I’m not my old self. Any advice?
Thank you in advance!


#2

Did you have fluid on your brain? I did n they put a permanent shunt in my head. Then did the chiari surgery. Make sure your neurologist is very experienced with chiari. Some are not. I am going on 5 weeks post chiari surgery n am doing alot better than most. Good luck to you.


#3

Hi! I had very little cerebral fluid circulating in my brain because my malformation was blocking my foramen magnum shut so my neurologist patched it up with mesh to keep the back of my brain from slipping through and to still allow for fluid flow. I’m so glad you’re doing better! :slight_smile:


#4

I am 5 weeks post Op from my chiari surgery and 1 day post op from a lateral tympanoplasty (reconstruction of my eardrum) my whole life I dealt with chiari symptoms and horrible earache especially as a child. In efforts to fix my ear situation as a child I had my tonsils and adenoids were removed but the damage was already done to my eardrum and middle ear so after my decompression surgery the ear flared up again and had to have my ear surgery done. Maybe ask for an ENT refferal and tell them about your chiari as well. I would also look into another nuerosurgeon a second opinion never hurts. Just something to think about. Good luck to you.


#5

You should also request an MRI of the spine my nuerosurgeon said that chiari can have affects all the down the spine.


#6

yes,
I had decompression surgery last May and I’m worse since having the surgery.
I had a basilar invagination and so next week I will have mri to check for spinal instabity.
my last mri showed that I still have low lying tonsils at 9.5mm


#7

Dear Cassy,

I couldn’t agree with wrumble more - you must have a Chiari specialist check you out. Not all neurosurgeons have a clue about Chiaris. Chiaris seems to be such a recently discovered “surgically fixable” problem, not many neurosurgeons in the business know about it. If you have not been seeing a neuro-doc whose credentials don’t list the word “Chiari” anywhere, I’d turn and run! (I actually did! Several of the 'best" neuro-docs in Charlotte said I didn’t even have Chairis!!!)

I am now 6 years post-Chiari decompression surgery. But, there is some permanent brain stem damage I am having to live with the rest of my life. I say I healed 75% since surgery. But, it’s 75% improvement I never had prior to surgery.

Also, I am permanently on a non-narcotic, non-addictive pain blocker. Due to Chiaris, I have nerves in the back of my head that, even though they have been declared ‘healed,’ they still like to say “ouch, ouch, ouch.” I think nerves have a way of doing that. I don’t know if you want to call it Phantom Pains, or what. But, seems to me that sometimes, nerves can be kinda stupid.

Therefore, I am on a very low dose of amitriptyline - like 3-5 mg. It’s a very old medication, used decades ago as an antidepressant. In recent years, it’s been discovered to work well in stopping ‘stupid’ nerves; nerves that can’t stop shooting neural impulses when they’re supposed to! Amitriptyline works wonders for me. Every now and then, (like every year or two) I have to switch back to Noritriptyline - when my nerves get ‘bored’ of the other stuff.

One of the side effects of most antidepressants - and for sure the tricyclics like amitrip- and noritrip- is weight gain. Oh, my. The hunger pains can be constant. The cravings can be strong! To stave off the urges to eat, I often lower my dose for a week or so. However, I sure can tell when I lower my dose too much. That pain in the back of my head wants to come back with a vengance. Then, I have to decide: “Which do I want to live with? A lot of fat, or a lot of pain?”

So - Chiari’s doesn’t really go away totally after surgery. At least for some of us. That’s why I love support sites like this one. Helps me get the boost I need when fighting Chiari’s 24/7 gets weary-ing!


#8

My nurse practitioner put me on amytriptyline n said it keeps you from gaining weight. Wow. I find most doctors any more have no more training in medicine than I do. If I don’t do my own investigating nothing happens. I just went to a doctor the other day for a simple note n they know nothing about it when I called a week later. Really? What the heck? I am starting to realize it isn’t the patients that are crazy it’s the medical community. They stretch themselves too thin n don’t have time to deal with you. Then they screw up n you are the crazy ones.
I had a dr. who had 4 masters degrees put a knee replacement in wrong n to this day refuses to admit there was a problem with it. He screamed at me. I went to another dr. who came in the first meeting n after 5 mins. said well that needs replaced. All of this due to a car accident.
I had the surgery for chiari back on Dec. 4th n caught a cold. Now the headaches, nerve tingling in arms n legs, spine are back. I even have the feeling of my brain flipping back in my head. Is this from the exertion of coughing or do I need to be concerned that the surgery didn’t work? I am so tired of drs. I guess I will go back to the neurosurgeon but it all just is so nerve wracking. I was doing good post surgery, until I got sick. Has anyone experienced a cold n had symptoms come back? Did they go away again?


#9

Dear WRumble,

You are so right that you have to be your own advocate… do your own medical research! I can do that so much better now than prior to my decompression surgery - when I was a total brain-dead zombie. I was very very blessed to have been only a 90-minute drive from one of the best Chiari neuro-docs in the world. All he does is decompression surgery for Chiari. Even so, he’s been under lawsuits - because one of his patients died 10 years after her surgery. (I still have trouble seeing the connection. I mean, 10 years is a long time.)

Even so, I have permanent CNS issues to this day. My old re-occurring Chiari symptoms come and go. Every 4th day, all my Chiari symptoms come back; I go brain-dead, paralyzed, blood pressure plummets (I can’t sit up even - or I pass out!), gag reflex fails and I’ll aspirate water, etc… However, with me, the re-occurring symptoms leave 24 hours later, and I get 3 ‘normal’ days. Odd.

I have hardly read about anyone who recovers 100% post decompression surgery. There have been a few, though! At least my neuro-doc gave me the facts in advance; he said, “with surgery, your chances are 0-100%. Higher probability of recovery happens if you are younger, and have the surgery within 2-years of symptom onset.” Well, I failed in both those categories! I was OLDER (52 yrs old), and I went 10 years with symptoms getting exponentially worse! So, my probability of full recovery was pretty nil. But, at the time, I was so eager to get even a 10-second break from the non-stop agony!!! Oh, my! Pain is so exhausting! And - pain never takes a break! :persevere:

I wouldn’t be surprised if the coughing may have re-injured the recovering Chiari site. I know directly post-surgery, I wasn’t supposed to do anything jarring: no jogging, no heavy lifting, no riding in cars over pot-holes. (like we can control the roads?!?!?) Doc didn’t say anything about coughing. But, coughing can be pretty violent and jarring. I do hope you are able to RE-recover. (Do you think that maybe the cold’s virus may have affected the healing site? I’m just guessing, here.) You are very early in the healing process, still. I really didn’t see long-term results until well into my 2nd year post-surgery. (Prior to that, I got a few good hours now and then that 1st year - but no good full days until the 2nd year.) You should see a healing continue on and on for 4-5 years or more. That’s what I read about in Rosanne Cash’s story. (she’s Johnny Cash’s daughter who had Chiaris!) She said it took her at least 4 years before she felt remotely ‘normal.’ Wow.


#10

Yes My coughing is violent for some reason. I feel horrible after I have a coughing fit. I go back to work March 15th. I want to go back but I just feel like crap some days. I am hoping going back will bring me some life cause I sure don’t feel like I am living at this point. Just existing. I am going to see the Doc this Thurs. He probably will just say It’s the cough and it will take time for me to feel better. I get that. I just can’t get rid of the cough.