Chiari Online Support Group

Recurrence

Had decompression surgery June 2, 2016. Been great since then. Until a week ago- started feeling exhausted again, then dizzy and imbalanced. And mild headaches. Anyone else had this??

I called my Dr. Office and they blew me off. Plus my NS is on a leave of absence. So I had a meltdown, ranted on their FB page and called the “person in charge.” I just saw these ingrates 3 weeks ago for my surgery follow-up when all was hunky-dory!! They had told me to go see my neurologist!!! As If!! What can she do about it?? She didn’t perform the surgery and sure hasn’t bothered to check on me since I saw her last March!! If I have to go see her, it’s a good 2-3 month wait to get in and what can she do? ACKKKKKKKKK!!!

So the office manager (person in charge) checked on it and called me back and managed to get them to agree to another MRI. So I just have to wait till they order it up. Waited one day and called them to check on it and told them I want a Cine MRI, which is a video of CSF flow. MRI’s don’t always show everything!!!

So now waiting to hear from them!!!

Oh Lindy, I’m sorry this isn’t the straight trajectory recovery you deserve but I guess it is still early days. Haven’t other people had their docs say it takes up to a year or more to assess the outcome of surgery? I know you know that your body has been pulled about and any surgery with general anaesthetic is a big deal to recover from too. Hope you get some answers from the MRI, even just reassurance that all is looking good from the surgical perspective. Also don’t forget the great article we’ve got on Dizziness and Chiari which can help retrain some of the primative reflexes which can cause problems. Here is the link: Dizziness and Chiari - Information & Self Help

Is it logical to go from feeling great post surgery, riding bike, walking fast, etc. to all of the sudden going back to pre-surgery symptoms?

Yes, give your body time to heal. You are still in the early stages of recovery.

Hello there. I had surgery 6/4/15. I too had a “relief of some symptoms” right after surgery. I even went back to work 2 months after. Soon after started having relapse of symptoms. Now everything is full-blown and I’m right back at pre-surgery symptoms and then some. I lost my job and have blacked out 3 times that I can remember. I have issues with memory, hearing, and getting words out. I have numbness and tingling in both arms to the ends of my fingers. Sometimes it takes an hour or so to get feeling back in my fingers but hours for the swelling to go back to normal. I have horrible vision.
My surgeon has also kind of written me off. All he did was remove a portion of my skull and C1 laminectomy. He did nothing with the tonsils. I have 23 years medical background and therefore was able to review MRIs that were done just this year after a fall where I hit my head and caused bruising. By looking at before and then after views, I see no difference other than a huge mess. My surgeon didn’t want to go into my brain due to the serious risks involved now I’m wondering if that would have helped.
It’s so discouraging. My family have little understanding of what I go through therefore little sympathy. I’m so frustrated and feel so alone.

Sorry to hear it didn’t work. Must still be compressed. My surgeon opened up the dura and cauterized the tonsils.

I would suggest going to a different NS. My first NS didn’t want to open up the dura either. That was before they had diagnosed CSF blockage. I have issues with memory too. I said something today to my daughter and then she said “why’d you say that” and I was like “what?” My short term memory is terrible. I think I’m also starting to get problems with driving again. I don’t seem to have the reflexes I should have, and the depth perception is off. My GP prescribed scopolamine for the nausea from being dizzy. I only used one patch so I have a bunch left.

After my initial issue above, I finally got an appt. to have an MR Cine done. Then the moderator on this site told me that MR Cine’s are not that accurate and many Docs don’t use them. So then I called my Doctor’s Office and INSISTED on talking to my damn DOCTOR> And he got on the phone!!! He said that he was transferring me to someone else as he doesn’t really do much Chiari. WELL WHY THE HECK DID THEY PUT ME WITH HIM IN THE FIRST PLACE??? So now I have another appt with a different doc in November.

Wow!! That’s what is so wrong with doctors these days. They want the challenge and them when it didn’t work, well they never knew anything about it to begin with.

I had surgery (decompression and laminectomy). My doctors decided at the last minute to not open the dura layer too. Now for months I have been getting worse and worse. Back to pre-surgery status. Dizziness, horrible memory, major migraines and neck pain worse than before.

I blacked out and hit my head when I fell in january. I stayed in the hospital for 3 days. No one knew a dang thing about Chiari, main reason I went 2 states away for surgery. I went back to my surgeon to find out everything was going great. When and how is everything going great when I am back to falling again and no memory of it??? I’m stuck and feel that I have no other resources. I’m concerned. I lost my job and now I’m disabled. I’ve been trying to get disability for over 2 years now and can’t work.

I just realized that I told you this already! Sorry about that.

At this point I have no faith in doctors. Finally got in to see the last NS. He was really weird in the consult- Didn’t look at me, looked down at his clothes. However, eventually showed me the MRI which seemed to show no blockage. So next thing was to send me to have a vestibular assessment.

Still waiting for THAT to happen. They referred me to the wrong assessor. Went to PT of all things. They got me scheduled for 24 sessions of PT. Called Dr. 's office and they said, NO you are supposed to go to Vestibular for Assessment!!! That’s the last I heard from them. So annoying!!

In the meantime, I had to go get an upper GI since I’ve been vomiting for past two weeks. Probably due to Chiari. But who knows. And have very low ferriten level so have to go have an IV infusion of iron to counteract that. I am going to move to the hospital because that is where I spent all my time these days!!

So sorry to hear you are getting the runaround hope you get the appointment you need. Sounds like looking for another Dr. would be a great idea one that will listen and make sure he knows about chiari malformation.

I have been through the exact same thing. I was diagnosed July 2013 and saw several neurosurgeons and decided to have surgery in Dallas. My Dr in Dallas had ordered an MRI-Cine and it showed almost no spinal fluid flow. I had decompression surgery in October 2013 in Dallas. My Dr saw increased spinal fluid flow after he performed the craniectomy and did not open the dura. I felt amazing right after surgery and did great for approx 5 months. At that time the headaches, dizziness and brain fog started returning. I went back to my surgeon and asked about doing the duraplasty and he refused due to scar tissue. I have since seen 2 other neurosurgeons and they also refused to go back in. They all advised I find a neurologist and medicate. The last 2 years have been very tough. I am wondering if my brain has settled and caused more crowding.

I can relate to your situation. I had decompression surgery October 2013.
My Dr performed the craniectomy and lamenectomy only. He did not open the dura or address the tonsils. My symptoms returned approx 5 months post op. I’ve seen several neurosurgeons and all refuse to go back in due to scar tissue. They all advised seeing a neurologists for meds. My vision is failing fast and neck, head and arm pain are daily. I have been so discouraged over the last couple of years and do not know what to do. I am 48 years old and hate to think that my life will be like this from now on.

I had my surgery Ruth duropksdty snd c1 and c2 laminectimy on oct 28th 2026 and today it feels as if everything was a waste of time…, my symptoms are coming back!!! What can we do?!!
I’m so depressed!

Settle… Hopefully you will be able to discuss all your concerns with your doctor. It is important to rule out any complications as they can exist. If there are none, keep in mind that two months post surgery is still smack in the recovery phase. Continue to rest and not to over-exert both physically but also mentally. I know that it I over did it, fatigue, vision, vertigo (others?) would all fly back for a visit.

What else are you stressing about? At this point in recovery, it is easy for all the help set up for post-surgery to flitter away. You do not look like a pasty wraith and movement is easier, but full-blown activity levels are not always achievable. Everyone’s recovery travels at a different pace with different bumps. Any medications that could be contributing? I always suggest a medication review with a pharmacist. What are the side-effects anyways?

Surgery does not solve all of CHiari’s symptoms. What other therapies or techniques might need to come into play. Perhaps too early to jump aboard but maybe something to think about.

Sending you good vibes and a clear path of recovery.

Hey Lindy. Sorry so long for a reply. It’s been just crazy. I’m at square one again. I have had the same reaction from doctors. The problem is they do not have the medical training for Chiari. I have to travel to and from my surgeon which round trip takes 8-9 hours in one day. Now he is saying what he did worked. Really? I can tell you it didn’t work

Now I’m looking at driving 9 hours one way just to consult with a “New Chiari Surgeon”. I just don’t know if it’s worth it.