Chiari Online Support Group

One tonsil or two?

Hi

I am 5 years late to the post but I only just signed up! So, I have only 1 cerebellar tonsil that is protruding into the foramen magnum,apparantly its only at 3mm and therefore I do not have Chiari. Is this tru? can anyone help? I have had a headache for literally 16 years without a second that goes by without feeling ill. 16 years ago when i started to get symptoms everything pointed to Chiari so I went to get MRI etc and suggested I had this (i was niave back then and should of played it down) Ok so all they found was disc bulge at c5/c6, 30grand later of my own money still no diagnosis. I revisited my notes and discovered they found the above but they said had no relevance, this was on the radiologist report and was not even mentioned when i went to see the neuro after the MRI. They said it was quite normal and was not significant and thatb I didn’t have Chiari. Surely it has to be Chiari? I have had litreally every test done you can imagine, all paid for by myself because the GPs and other professionals say its pyshological… really! By the way I am not rich, I decided to work for myself, grafted hard with a headache and dizzy, general unwell feeling to save the money to try to get fixed. 16 years on still feel like shit! Help please?

ps. I meant the dosc’s said the 3mm protrusion had no significance.

I have a 7 mm n was told the same. I have suffered for years n one doc said MRI showed nothing but the 7 mm herniation the professional said fluid on the brain. He put in a shunt n said that should take care of my issues. It hasn’t. Now he says it has to be chiari n is going to do the surgery. Finally. My right shoulder is hurting so bad n now has pain shooting down into my wrist n hand. I cannot wait till the surgery is over. I really think doctors just don’t know. I wish you the best.

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Yes they told me the same and I have a 7mm. So one thing I have learned is you can be a 4 mm and have the worst symptoms and you can be a 12 mm and have little to no symptoms. I wiush some doctors would realize that not all patients are the same. It would save people who are going thru this alot of physical pain n grief.

Hi thanks for your reply. When is the surgery? Are u in the uk? It would be great to discuss our symptoms etc. Perhaps i am. Arking up the wrong tree as no one thinks its important but i mean a discomfort feeling in my head for 16 years is not normal with headache dizzy and general unwell feeling. Its only been picked on two the scans but i had a CT done when all this staryed and no mention. I am going to obtain the scan and get a 2nd opionion on that one too. I am coming for these neuros and want answers. I cannot seem to find anyone here in the uk thay does a cine mri. Help please!

No I am in the US. My surgery is Dec 4, 2017. Two Mondays from now. I am not sure what a cine mri is. I can’t have too many types of mri’s done because of knee replacements due to the same car accident that caused all of my chiari issues to worsen. A few people on here talk about a Dr. Jeffrey Greenfeld or Greenfield, not sure which. He is at the Weill Cornell Center in New York. They say he is the one of best. I go to Hershey Medical Center in Pa n my doctor did really good with the shunt he put in my head. I am experiencing alot of pain in my shoulders, neck and feel like I won’t make it till Dec. 4th. Everyday the pain worsens. I had an mri done when I had a car accident in 2002. The chiari showed 7 mm then. I had a different Dr. Then n he said don’t ever get in another casr accident cause you will be dead, paralyzed or a vegetable. He never would tell me it was the chiari he was talking about. He never mentioned the chiari at all. I found the paperwork years later on the mri and saw the chiari mentioned on it. I didn’t think any more of it. I have foound that because of the seriousness of this disease, most doctors don’t want to approach the subject and have told me it wasn’t bad enough to cause my problems. It’s crazy. I can’t work n am now scheduled for surgery that should have been done long ago. I just hope I don’t have any permanent nerve damage due to the severity of my issues and the fact that I have had them so long. The ladt mri I had was looked at by 2 doctors. One said nothing really wrong so I got a neurosurgeon who looked at it n said you have fluid on the brain. How can one doctor see it and another one not? That’s why you need to get more than one opinion. Good luck to you. I wish you the best!

Thanks for this. Oh my goodness, good luck for the 4th Dec. I can only imagine how you feel right now. I am sure all will be well. I hope you the best and that they get this sorted for you! Take care.

Hi photoman01.

It might be a good idea to make a new post with a title that shouts the ‘Need a Great UK Specialist!’ message loud and clear.

Also you can check the ‘Physician Recommendations’ section - click on the ‘Home’ button at the top of the page, then scroll down & that section is near the bottom of the list. Most recommendations are currently US-based, however I did find this:

Additionally you could use the search function to look for previous posts about UK specialists (click on the magnifying glass symbol, top right of page next to your avatar).

You have had a mightily long haul,16 years of pain sounds abysmal. All credit to you for all you’ve achieved and I hope that what sounds to me like renewed determination may herald a breakthrough, a real way forward.

Christina from Moderator Support

@photoman01 You actually would be hard pressed to find a legitimate medical center anywhere that would give much credence to a Cine MRI. There are newer Computational Flow Dynamics methods being used . Cine was ALWAYS experimental and generally used only by “Chiari Clinics” which are mostly gone now. It was less than 60% predictive and a lot of unnecessary surgery was performed with a lot of complications and no or only temporary improvement.

Turns out it was never restricted flow but rather using present methods of flow analysis, a pattern is found exclusively in the symptomatic patients is synchronous bidirectional flow, that is the simultaneous presence of a jet (high velocity in one region) and a counter jet in an adjacent location in the subarachnoid space (in other words, the simultaneous presence of flow caudad and cephalad). Cine can’t see it. But the myth of “Cine MRI” persists, but mostly just on the internet…

TJ

Let us know how it goes. I imagine you’re recovering now. :slight_smile: Where did you go to have surgery? What doctor did you use?

Sorry to hear about your troubling issues. It is generally the Chiari that is causing the disc buldges. Why…? The herniation causes the domino affect and pushes down on the spine.
If you can possibly check for another test, check for Syringomyelia. Get MRI’s of the whole spine. That would be cerebral fluid leaking in your spine, again caused from the Chiari. Your 3 mm is similar to my 3.5mm. Our bodies are not earthquakes measured on seismographs where every numerical dynamic is significant or trivial. Many doctors would like to think so. My neurologist basically brushed my 3mm aside too until he side we better do MRI of whole spine to rule out Syringomyelia. So, wouldn’t you know…? I had/have it.
The condition is so rare, doctors have to only go by what their text book says. I see wonderful stories and hear of children and people in young 20’s going on about there life after surgery as if nothing happened. I would issue caution with that. I had to have a laminectomy so my surgeon could get access to my brain. That was just a “trivial” aspect of the surgery. So now, 4 years later a FUSION needs to be done. He needs to cut in the front of my neck. I believe the fusion is needed from the laminectomy. The high you get after the surgery heals up is just that. You will feel different trust me years later.
On the plus side, the surgery has helped the headaches 20-30%. Higher in summer with the heat. I live in a temperate state and could never last in a state that is hot all the time.

Anyways, I understand the whole headache everyday thing, believe me I do. If you don’t have Syringomyelia, Hydrocephalus, or life threatening issue, you don’t want this surgery. No one in there right mind wants this surgery. Sorry for my bluntness, hope this helps.