Long time no see, update about my situation


I haven't been here for a bit, sorry about that. Sort of forgot about it (I have some memory issues). Anyways my symptoms have started to progress more and my primary care provider is sending me to Mayo Clinic in MN. I have never been there. Anyone know the neurology/neurosurgery department is? I am sort of worried because I am in a odd and rare situation. My Chiari symptoms returned about a year and a half after my surgery without any visible reason why. My test all look okay though recently by looking at past medical records it seems that I may or may not have bulged disc in my c5-c6 and c6-7 areas of my neck. I had a set of neurologist send me to a psychiatrist when my symptoms first returned (nearly 5ish years ago) because they thought my symptoms were mental and or making my symptoms up. The neuro psychiatrist said I was fine mentally and my symptoms were neurological. Well the psychiatrist is now retired and I can't get his medical records but I can get the ones from the neurologist who called me mentally ill. I am scared that Mayo clinic will see that and not take me seriously.

Anyways I have been treating my chiari symptoms and other health with different medications to help me get by but they have gotten worse after I developed some neck pain. All MRI scans look normal though still.

Below I will list some of my symptoms if anyone is curious:

Memory issues/confusion (not all the time but some)
Muscle Weakness in limbs

Paralysis in legs ( one doctor stabbed me and made me bleed to see if I was telling the truth)

Coordination issues (comes and goes)

Echolalia (comes and goes)

Muscle Spasms (sometimes full body that look like seizures)

Nerve pain

I had most of these symptoms pre-surgery, it was the muscle weakness and paralysis that got me to see a doctor. I have had bad headaches and migraines most of my life though. The doctor who did my surgery told me I most likely have had Chiari my whole life due to being premature.The echolalia didn't happen until my symptoms returned.

From my understanding and reading of things (which I have presented to doctors) that sometimes people with Chiari have symptoms not just due to CSF being blocked but also due to the cerebellum putting pressure on other parts of the brain. I know with my surgery they shaved the vertebra in my spine down to make room for the CSF and pulled my cerebellum off of my brain stem. I just wonder if it isn't just putting pressure on other parts of my brain and that combined with my horrible scoliosis isn't what causing my problems. For me that seems logical and simple but here in Missouri we don't have a lot of doctors who understand Chiari, especially in the Hannibal area.

Anyways sorry for rambling on about things. I sort of needed to talk and didn't have anyone to talk to at the moment. If anyone has been to Mayo clinic and have any thing to say about it I welcome it. Also if anyone has any suggestions/ideas about my symptoms etc I welcome that too. Thank you for those who run and manage this site :)


God Bless,

Dustin Gibbons

Glad you got back to us. Sorry to hear about your reat of symptoms. Sadly it is all to common but follow-up usually results in some relief. The MOST common reason is scar tissue. Once removed things get better most of the time. Hang in there Its a long journey.

I am having a lot of issues and the headaches are constant. So sick of this Chiari, people don’t think there is nothing wrong with you because they can’t see it. I hate this and the dr all still look at you like your just a cry baby and a hypochondriac! My arms and legs get numb and it feels like my head is to heavy for my shoulders to carry.
Sorry for venting but I’m tired, hurting and just want to have a day without all this. My ears are ringing all the time. Do any of you have that issue?
Thanks for listening! Hope everyone has a good night!
I am still going to try the 5K beach run/walk in the morning!!

I have actually heard of resected tonsils growing back! So anything is possible. There is so little we really know about the brain and even less about Chiari. I am inclined to think that the mayo clinic will want its own tests, and they WILL believe you. I have found it comfortiing and helpful to make an audio recording (you can just use your phone’s recorder for this) of the time with your neurosurgeon, or anyone who might say something that stops you in your tracks. You have stopped and invariably, they keep going. When you have them recorded, you can go back and really hear what stopped you and what was said afterwards. Also, another human in the room, who cares about you, who can remember when you forget to ask that question you wanted answered. So take someone if you can and tell them what you are hoping to learn and ask them to step up, if the meeting is ending and the things you were concerned about were not addressed, and remind you, or ask the question themselves, you have the recorder going so you will “remember” it all.

Be well, and feel free to contact me if you need to chat : )

Great idea about the recording. Don’t know why I never thought of doing it also. Hope everything turns out with some relief for you Dustin. If you don’t mind me asking, how old are you and at what age do you remember being diagnosed?
I’ve had 2 decompression surgeries. The first what’s in 2006, I was 43, the second about a year, year and a half later. The second Doctor said the first didn’t work because the dr didn’t take enough of the bone out??? So I did have relief for a few years but the old symptoms are back. Pain meds help but don’t like taking them. I also take nuratine.
Sorry I’m running off here. Our thoughts and prayers are with you! God Bless and let us know how your doing!

Best Regards
Roni Jo

I was diagnosed in college. It was around 7 years ago. I was 24 at the time. I sat down in a class and I couldn't get up. I couldn't use my legs. We thought it was a pinched nerve because of my scoliosis. We went to a scoliosis specialist and he did say my scoliosis was horrible (knew this since teen years) but he thinks my problem comes from Chiari. He then explained what Arnold-Chiari Malformation was and referred me to a neurosurgeon. The neurosurgeon told me that I most likely was born with the malformation due to being premature. I was born in early Dec. but was suppose to be born at end of Feb. He then told us about surgery. In between my first and 2nd visit with him my symptoms progressed where I couldn't walk at all and my left side was pretty much going out on me. Turned out my whole left side wasn't getting any CSF.

We got my medical records back from him just the other day and it turned out that he actually contacted Dr. Oro before he did the surgery and wanted his thoughts. Dr. Oro told him surgery most likely wouldn't help me. Anyways after surgery I was alright for about a year and half. Symptoms went away right away. It was like things went back to normal. After a year and half I started to get migraines. Then I had a stroke like event and my symptoms came back full on.

By looking at my medical records my primary care provider actually thought I was having symptom magnification. In other words my symptoms returned but not as bad as I thought, this was because before the stroke like event they came and went as sometimes they do. After the stroke like event (I fell and full symptom return) my doctor realized something was wrong.

I also have numbness in my hands and feel like my head is going to fall off. Some people I have talked to said cranial-instability is common after Chiari surgery and can produce similar symptoms.

I have quite a few symptoms I am dealing with and still waiting for one more doctor to get medical records from. As I wait my symptoms are progressing somewhat and I basically have to lay down most of the day anymore due to pain and fatigue. The most annoying symptom is the memory loss/confusion.

I hate taking pain medicine but I currently take a nerve pain pill 2-3 times a day (neurotin) and a muscle relaxer 2-3 times a day and a migraine pill about every 3 days but this pass week I have had to take one bout every other day.

Anyways sorry to ramble on like that. Part of me thinks my issues are coming from the bulging disc the scoliosis doctor never told us about and maybe some cranial instability issues. Who knows though, it could just be they are returning. I am hoping the Mayo Clinic can just help me manage my symptoms better. I do hope Mayo does their own test because the MRI machines around here aren't the greatest and perhaps a newer/more advanced machine can show more. The MRI's and CT scans I have had done haven't shown any change in my surgical site.

On another note my neurosurgeon did warn me that my symptoms may just return and sometimes they do return without a visible reason. Anyways I am done rambling :) I think I am going to head back to bed.

God Bless,