Chiari Online Support Group

Symptoms after surgery


#1

I am 2 mos. Post chiari surgery. I also had a shunt surgery before that. I am having alot of issues since my surgery that has either worsened or appeared since surgery. I had a MRI through my family doctor who said I had chiari. She said my symptoms weren’t related. I went online n I had all the symptoms of chiari. I took my MRI to a neurosurgeon who said I had fluid on my brain. He placed a shunt. The regular doc never mentioned fluid on my brain from the MRI. I was so bad I couldn’t function anymore yet she said not chiari. I had to have decompression surgery n it did help with the severe headaches, nausea n vomiting n the tingling n numbness in my arms n legs. I went to her today for my annual check up n she still doesn’t want to acknowledge chiari. She said people go all there lives n don’t have any issues. I was so bad they were going to admit me to the hospital. She is down playing all my symptoms now n I really am very upset over this. I am having issues with my blood pressure fluctuating n hot n cold temperatures associated with numbness n tingling in my arms, hands, legs n feet. Basically my family doctor now refuses to acknowledge that I have even really had chiari related symptoms. She raked me over the coals n is trying to get me to test for other possibilities. She keeps saying It’s my thyroid. Every year I get a thyroid test done n It’s perfectly fine. I just had one done last May n now she wants me to do another one. Everything is right here in front of her but she refuses to believe it cause she didn’t diagnose me correctly. She has misdiagnosed other things along the way too. I really have no other choice but to look for a new doctor. She said to me I want you to keep an open mind n realize that most of this is not related to your chiari. I just want to know if anyone else is experiencing anything like this post surgery? I am at a loss here. I thought once I had the surgery done that the worst was over. Now I am finding my doctor to be an even bigger disappointment. I had a good neurosurgeon. This doctor in my opinion shouldn’t even be practicing medicine. I could tell she was more interested in my insurance company than my health. Does anyone else experience symptoms post surgery and does your doctor believe in chiari? She told me hot n cold feelings associated with the numbness n tingling cannot be caused by chiari, yet I read where it can. She yelled at me and said it isn’t possible, n said tell me how it is associated. I said nerve damage from not being properly diagnosed before the damage got too bad. She says not physically possible. I am on a new search for a family doctor.


#2

I’m so sorry to hear that you are going through this. Have you had a follow up with your neuro surgeon since the decompression surgery? It seems he/she is the one you should be talking to not your family doctor especially if your family doctor is dismissing your complaints. If you are still suffering from numbness and tingling in your extremities I would most certainly go back to the surgeon. Good luck and I hope you find the answers your looking for.


#3

I have to agree with chiarimom121713 the one you need to go to is the neurosurgeon. A lot of doctors who do not know about chiari will tell you it is something else. In my case I have spina bifida and chiari before I changed PCP’s I kept being told my back pain which was getting worse and numbness and tingling was due to my spina bifida and nothing she could do about it. Well I finally switched back to my current Dr’s who know about spina bifida had tests done and they found the chiari issue so they sent me to my neurosurgeon. I still have some of the symptoms but that is because the fluid has not gone down and my neurosurgeon has suggested the shunt to me but he doesn’t think i should do it until the symptoms can no longer be managed any other way. I hope you find a Dr who knows about your condition and acknowledges it instead of writing it off. Best of luck.


#4

Thank you for your response but the problem is I have to go to a family doctor for my annual exams n every day things. I have no choice in that matter. Finding a doctor who believes in chiari is going to be tough because the insurance companies are telling the doctors what they can n cannot do. I have the symptoms of diabetes n thyroid issues but she tests me over n over n I don’t have either. She is being governed by the insurance company. It is ridiculous. She told me the last time she did my pap test that my cervix looked great. I said wow yoiu are really good. She said Thank you. I said I haven’t had a cervix in 26 yrs n now you are telling me I have one? I said you are really good. It’s called not everyone should be a doctor that is.

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#5

Unfortunately the neurosurgeon refuses to see me any more. He said he only does surgery. That’s how he left it n he cancelled the appointment.