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1598790 tn?1297817917

Pictures - Please tell me what you think!

I am new to this so I don't know who sees what...I posted some new pictures if people can take a look and let me know what you think.  I don't take any of the opinions as a diagnosis...just opinions.  I am getting more miserable by the day with the pain. :(
Best Answer
1179332 tn?1297478990
Hello

I took a look at the pics you posted and it definitely does look like in at least one of your pics that the tonsils are not a normal shape. It is really hard to tell though if it looks like there is any blockage. With mine, my NS could clearly show where my cerebellum was pushed up against my skull but that was with a really good, high resolution image.

I am not sure of your story? Have you been dx'd with Chiari or suspect that you have it? Has anyone mentioned tonsillar descent to you? I imagine that you are having quite a few symptoms that has caused you to try and figure out what is going on. Either way, like I said, it does look like there isn't something quite right and so I would start looking for some answers in that directions.

Good luck!
Carolyn
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1598790 tn?1297817917
It's hard because my NL was so insistent that everything looked fine with my brain MRI.  I have had three doctors now all draw a possible conclusiono of Fibromyalgia.....my symptoms match a lot of those but I am not sure.....this has been going since early January and although as of late it seems to have eased up some it's still there......I finally have my follow up appointment with my NL this Friday, but I don't see anything new coming up from this because all other tests I've had have been normal minus the MRI of my c-spine......I personally thought it looked like my cerebellum is crowding my brain stem but I assumed a NL would recognize that if were happening?
Helpful - 0
1570846 tn?1295829627
it took me many many years to get diagnosed. and i found a great NS and had my surgery in less then 3 weeks after my diagnoses. mine was causing so much pressure i was falling and blacking out adn it had to be done. I hope you can get to a specialist and get yours taken care of the pain after surgery is not as bad as the symptoms taht were coming every day. taht is how i looked at it. and im doing ok jsut about a month out of surgery jsut normal recovery pain mostly
Helpful - 0
314892 tn?1264623903
I am not a doc. But I looked at your scans. I have done a lot of research comparing my scans to those online.

Look up the term "retroflexed odontoid".

Yours reminds me of some MRI images I have seen.
Helpful - 0
1598790 tn?1297817917
I have read a little about the Cervical Stenosis and it sounds like unless it's a birth defect that for someone my age it's not really a common thing to just have happen.....it sounds like it happens more as you get older into your 50s because of things changing and wearing.  So now I am like ok is there something ELSE causing this?  Now I am a little concerned because my NL wasn't even going to do an MRI of my spine...as I mentioned before he said he could see 6 of 7 of my cervical vertebra and it looked fine.  I think it said it's secondary to the cervical disk?  Something like that........I have a starting point but I have a feeling I am just at a starting point now with figuring this out......

Last weekend I started to feel a pressure feeling in the middle of my back just around the end of the shoulder blades area.....
Helpful - 0
1303966 tn?1296740010
The Wisconsin Chiari Center does not charge anything unless you come to see Dr. Hefezz.  The New York Institute did not charge me to look at my MRI's and give me an opinion either.  Dr. B from The Chiari Institute in New York answered many of my questions via email several times, and if I have a question, he still answers.  

I wore a hard collar for 5-6 weeks for cervical myelopathy (stenosis).  To my knowledge, myelopathy is a common problem with those who have Chiari.  This helped a lot with the neck pain, shoulder/arm pain, and hand/finger pain.  I wore the soft collar to bed.  This collar also helped with the headaches.  A hard collar worked much better than a soft collar for support.  

I'm sure this is all very overwhelming for you.  There is naturally going to be a little anxiety so try to take a deep breath and find time to relax.  I pray you find relief and answer very soon.

Kristel

Helpful - 0
1598790 tn?1297817917
My EEG was normal but my MRI of the C-spine showed a mild cervical stenosis....
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1598790 tn?1297817917
I am actually probably not that far....I am in Illinois.  I was thinking about calling my NL office to see if they would give me the results of the EEG over the phone...but I know they like to go over things during a follow up, but he's so booked I can't see him again until April 1st.  That's so long to wait!  I just had an MRI of my C-spine tonight......that I should know in a day or two because my regular doctor ordered that.  He said with the reflexes that sometimes if people are nervous or anxious they can have brisk reflexes as well.....

It's hard because my symptoms also match Fibromyalgia..over the last week or so my knees are now getting really sore on the inside....I have to hold onto something at times to stand up........

So the Wisconsin place doesn't charge you just to evaluate your MRI and see if they feel that you should be seen?
Helpful - 0
1303966 tn?1296740010
Hyperflexia is very common with Chiari.  I have hyperflexia.  When your doctor says your reflexes are brisk, this is what he may be referring to.  Don't be alarmed by the Chiari Center asking for your insurance card.  Renee is great!  She just does her homework ahead of time in case the doctor thinks you would benefit from seeing him after reviewing your MRI's and the forms you send.  She will let you know exactly down to the penny what your insurance will cover.  No worries.  Dr. Hefezz is the Director of the Wisconsin Chiari Center and he is also very knowledgeable in the are of fibromyalgia.  He has done many studies and found that many people diagnosed with fibro actually have Chiari.  These studies are online.  He has not pushed surgery on me if this is a concern of yours.  He won't do surgery if you don't need it.  Dr. Hefezz did one of the most thourogh exams I've ever had.  He has his own MRI protocol.  If you decide to see him, let them know what test you've had. Don't be afraid to let them know you want to avoid repeats to avoid more medical bills.  Many people who have Chiari also have abnormal EEG's.  I found a study being conducted before and after decompression surgery and Chiari patiants who have abnormal EEG's before surgery come back and have normal EEG's after surgery.  Can I ask how far you are from The Wisconsin Chiari Center?   It's very common for Neurologists to dismiss Chiari symptoms.  This is why seeking an opionion from a specialist is very important.  Remember, they see people with Chiair who come in with the same complaints, therefore a Chiari Specialist will be able to recognize your symptoms and how they are relevant to Chiari moreso than a General Practitioner or other general Neuro.  Good luck and I pray you find a doctor who listens.
Helpful - 0
1598790 tn?1297817917
I know...I know my tonsil doesn't protrude down past the foramen magnum (?) but I didn't think it looked normal either.....this is getting frustrating.  If if comes down to Fibromyalgia I may seek a second opinion just to be sure.  I found the Wisconsin place but I got a little nervous because they want your insurance card and you haven't even seen them.  I know my EEG is going to be normal.......but I know you also have to go through the motions and cooperate with the doctor if you want them to help you.  I just need to get this figured out.  If I turn my head to one side too long I feel lightheaded and feel like I am going to pass out and then the entire length of my neck/throat will start to ache/throb.  I have to get this figured out.  It's really hurting my work performance and I definitely do not like that.  It's just my NL was so insistent that it is NOT CM....it was hard to argue..........my nerve tests were fine except for my reflexes were "brisk" and all of my other tests have been coming back normal.......
Helpful - 0
1303966 tn?1296740010
Did you get a copy of your first MRI and report?  I get a copy of every test (result) and doctors notes and keep a copy on file.  Don't let anyone make you feel bad about asking for your own records.  Be your own advocate!  

I went to my doctor with memory problems, tingling toes/feet, balance problems, trouble using my shoulders/arm, daily headache, swallowing problems, head pressure, ear problems, dizzy/vertigo, and horrible fatigue.   My family doctor ordered an MRI.  I was not told I have Chiari.  I got suspicious and ordered my own report and read it myself.  I was told that my symptoms were not related to the Chiari.  Hmm...

I began having horrible episodes (complex seizures).  I sent my MRI's to the Wisconsin Chiari Center and The Chiari Institute after visiting their websites.  I believe it is very important that you see a Chiari specialist.  They see people who come in with the same symptoms daily.  I see Dr. Hefezz at The Wisconsin Chiari Center.  I plan to get another opinion, but I do like him and trust him.  The only reason I want another opinion is because he does not do CINE MRI's.  

I pray you find the answers you are looking for.  I'm not a Chiari specialist, but your pictures don't appear normal to me, and your symptoms are very familiar.  I wish you well.
Kristel
Helpful - 0
1598790 tn?1297817917
Question - My NL said that in my MRI of my brain he could see 6 of my 7 cervical vertabra and they looked fine so he didn't think an MRI of my spine was necessary..BUT when I went into my regular doctor just recently about the neck pain he wanted to do a C-Spine to make sure I don't have a herniated disk or anything going on.  Will the C-Spine possibly show anything any different than what my NL saw in the brain MRI regarding my vertabra?  
Helpful - 0
1598790 tn?1297817917
I have my EEG today..MRI (C-spine) tomorrow....my reg doc checked my vitamin D level and that was ok too.  It's good they are elminating things but frustrating too....my upper back is starting to hurt now too.....my fingers have been getting achey and sore....I've been waking up to my thighs aching and my knees sore and stiff.....I hate to have a blanket diagnosis of Fibromyalgia but it sounds like it's what it's going to come down to...
Helpful - 0
1179332 tn?1297478990
Just a thought...I was told over and over again too that all the tests were coming out normal and I was in the same frustrating place you are. When I did finally get dx'd with Chiari, my NS told me that a lot of the standard tests that NL do, DON'T show anything. After the surgery, I went back and got copies of all my test results and noticed that they actually DID show some variations, apparently just not the ones that my NL found important. Although it is good that the tests are coming out well, it doesn't necessarily mean nothing is wrong!!

Carolyn
Helpful - 0
1598790 tn?1297817917
I just don't see how any of the tests haven't shown anything....maybe the MRI of my spine will?  I really don't think the EEG is going to show anything either...but I've never had this problem before and it just started all of the sudden about a month and a half ago....today I was in horrible pain..and it's getting harder and harder to make it through work.......It seems like my reg doc and the NL are trying everything they can to rule things out which is def making me feel better......
Helpful - 0
Avatar universal
Just a suggestion - but fibromyalgia is often used as a "blanket" diagnosis.  This means that when all else has been ruled out this term will fit the symptoms. Fibromyalgia is a very real and horrible disorder but when we are ill, scared, unsure or just desperate to put a label on something so that we can hopefully fix it - we will accept a reasonably intelligent diagnosis. Be cautious. You have definitely been given the medical runaround but try to stay patient. I am a nurse and have seen patients so fed up with horrible doctors and other medical professionals (obviously understandable) that they grasp at the first tangible diagnosis, just to be able to start somewhere. Be careful, as fibromyalgia is a "very hard to treat" diagnosis. I have CRPS (complex regional pain syndrome), which also falls under that previous heading, but I got 3 different opinions before I believed any of them. This is your life and you don't want to waste anymore of your time or health with unreal expectations. Just be careful. :)
Helpful - 0
1598790 tn?1297817917
I went to my regular doc today because I have so much pain in the neck and stuff....haven't been feeling well the last few days.....My follow up with the Neuro is so far away.....I had my blood drawn there (cus I got the hint it was cheaper if your docs office will do it instead of the hospital) so he actually had the results for me and everything the NL checked was normal.  My doc is doing an MRI of my spine (C-spine?) for neck pain...he said he could feel the tenderness in my muscles and tension and stuff.....he is making sure I don't have a herniated disc......My EEG is Monday....if they cannot find anything with the tests I will have a diagnosis of Fibromyalgia...which actually also fits the symptoms I have been having.  He is also checking my vitamin D level because a couple of years ago after my gall bladder surgery I did have a deficiency so he wanted to be sure it was doing ok.....so we'll see....
Helpful - 0
570413 tn?1299532661
I just took a peek, and to me, it looks like your tonsils are plugging the foreman magnum somewhat.  This would cause the symptoms you are having, in my nonprofessional opinion. :)

Blessings,

Rebecc
Helpful - 0
1179332 tn?1297478990
Yes, I had one early on in my symptoms and it was fine. Just recently, I had an ECHO and that was fine too. All my heart rate/respiration issues I believe is the result of the pressure my brain was putting on my brain stem. You can have your brain not pushing down on your spine, but if it is crowded, it can still be pushing on the brain stem.

Carolyn
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1598790 tn?1297817917
Did anybody have to have an EEG at some point while trying to get things figured out?
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Avatar universal
Did the doctor mention anything about Lyme disease? It can cause a lot of those symptoms.
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1598790 tn?1297817917
Sorry I realized I didn't answer all questions.... : / gotta love that memory!  I haven't had my spine checked......I don't know if I am double jointed to be honest....

I have tried to Google about the BRISK reflexes but I haven't found a whole lot...some say it's really nothing...some say it can be indicative of something else neurological.....

When I read about a B12 deficiency the symptoms were very similar to mine, almost to a T.....I just hope to get this figured out...
Helpful - 0
1598790 tn?1297817917
I don't know...This NL said that I do not have one...there is no way that it could be causing my symptoms because it's not down low enough to push on my spine.  He said he does think it's neurological but he said my symptoms don't quite fit into one category so it's hard to say one thing exactly.  I finally remembered the word he used, it was brisk.  He said I have BRISK reflexes.  I know he's checking my thyroid, B12 and folic acid level, inflammation in the blood....I think something else but I couldn't tell by the writing.  He said sometimes your reflexes can be brisk if you are nervous or anxious but I wasn't nervous and they have always reacted the way that he indicated....he gave me Topamax which has helped so much with the head pressure already......I don't know..I guess I'll see what the blood and EEG reveal and go from there.......the weird thing is that my mom is having almost the same problems I am and she finally saw our primary care....so I don't know what is going on.......the only reason I am wondering if it's possibly inflammation in blood is because it all started right after this viral thing I had.  I am just scared I will never know.  My head is feeling better but I am still tipsy with my balance and forgetful/confused....but all the other neck problems still there and the pins and needles in my hands.....
Helpful - 0
Avatar universal
My films look a lot like yours. I was diagnosed with a borderline chiari. I have been to three doctors who do think my symptoms ARE from chiari I also get burning in my toes sometimes. I also get dizziness, vertigo, ear aches, tinnitus, fatigue, confusion, pressure headaches with and w/o pain, shortness of breath. All that great stuff.

Are you double jointed? Sometimes being double jointed can mean that you have genetic connective tissue issues. People who have these issues may have different results on an MRI when they are lying down than when they are standing up. Cause when you're standing your brain will sag and your skull sinks down on your spine. They do upright MRIs. The company that does them is called Fonar.
Helpful - 0
1589097 tn?1343433112
Have u been checked for a syrinx in ur spine? I was also told by my ns my reflexes were too good, and he believes its because the syrinx I have in my c spine has already done some damage.
I'm also getting a second and third opinion, although I believe what my ns said was tru.
Mazie
Helpful - 0
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