Some questions about symptoms of Chiari 1

[weath123]

In Nov. 2009 I had an MRI of the brain and cervical spine due to having extreme neck pain for which they sent me to PT and blamed it on severe muscle spasms of the neck, shoulders and back from Fibromyalgia for which I was diagnosed in 1993.  I have chronic migraines which start at the back L side of my neck and continue up through my left temple and behind my L eye.  Always on the L side. I have had these virtually every day since I was 19.  I am now going on 58. After going through several sessions of PT for my neck I started experiencing electrical shock like spasms going from my neck down my arms (mainly left sided but did experience on both sides...through my elbow and down the outside of my are to the outside of my wrist. These would last for 30-40 min.  I also experienced a feeling of painfull "fullness" of my entire head..almost likemy brain was going to explode, making my head feel like it was too heavy for my neck to hold. I stopped PT because this was unlike anything I had had before during PT for my neck.  My PCP sent me for x rays and MRI of my cervical spine and also of my brain because I had breast cancer in 2007 and went through 6 rounds of chemo2 operations, 36 days of radiation and continuing hormonal therapy.  The MRI showed further deterioration of my cervical spine...Lordosis, 3 herniated disks and spondylitic ridging with impingement on the dural sac at C4-5 and C5-6 and C6-7. The brain MRI showed"mild bilateral cerebellar tonsillar ectopia at the level of the foramen magnum.

My question is as follows: has anyone had episodes where you feel like your blood pressure drops suddenly, you develop tunnel vision, a feeling of intense panic, you feel like you are going to suffocate...like you cannot get a deep breath and your breathing has become so shallow that you feel you may pass out. You have trouble swallowing...your head and neck feel so thick and swollen that they feel foreign to the rest of your body, and there is a full sensation in both your ears.  If any of you have had an anaphylactic reation to any drugs or food, or an insect sting...that is what this feels like. The whole thing lasts about 20- 30 min then you feel totally normal again.  I began having these episodes in 2003 and have had them since then.  At first an allergist thought I had an allergy to NSAIDS - like Ibuprofen or aleve (Naproxin). and I stopped taking those drugs for the pain of fibromyalgia. The episodes abated for a while then they started up again.  I wake up every morning with a feeling of fullness and pain at the basilar region at the back of my head. I also wake up with migraines about 90% of the time. Since the brain MRI where there was a finding of bilateral (mild) tonsilar ectopia at the level of the foramen magnum I have been to a neurosurgeon regarding my neck and the chiari and he siad there was nothing he could do. what I need to know is are the symptoms I have been having like3 any symptoms others with Chiari of any level? Also, I am from a fairly rural area in between two small cities...Allentown and Reading PA.  Does anyone know any Neuro's specializing in Chiari malformations in this area?  Any remarks would be welcome.  I spent 27 years as a Pharmaceutical Rep so I have a fair basic knowledge of various disease states, drugs, etc and I don't want to be sent to 10 different specialists to address all of my various symptoms if they cam be attributed to one disease state. Thanks in advance for your help!

[selmaS]

I had mine on Cedar Crest Blvd as well...not open air tho...lol...very small world....funny how I guessed where u were : )

It is apparent that u r a survivor and I admire ur willingness to be ur own advocate...we all must do that as we can not trust our health to someone that looks at it as a job...it is our life !!


I know what U mean I was just as dumbfounded when the NS in Philly said it was above him and nothing he could do or even suggest as my next step!!...I was so glad I hear about the NS's in NY.....

Oh my tip for the MRI's...close ur eyes and keep them closed...there is enuff air going around inside I always ask for a blanket....lol....and imagine u r lying out on a deck somewhere next to a construction site : )

I know that will not work for everyone, but it is what I do.....

"selma"

PS- My sister used to live in Kutztown.....and my niece now lives in Kempton....very small world..plus another sister went to Kutown when it was a state college, and my FSIL grad from there as a Unv......

[weath123]

Sorry...I forgot to mention that no...I have never had a Cine MRI. That would most likely be the next step but I hate brain Mri's cause of the claustrophobia...the one that I had where they found the Chiari was an open MRI on Cedar Crest BLVD.

[weath123]

Ha Ha..Yup...K-town and my first boyfriend lived in Kempton. Born and raised here went away to college and came back!  I am going to my PCP tomorrow and talk to him about these symptoms.  He is gonna look at me like I am crazy...but I used to call on him as a rep - so half the time I walk in there and say...I have pleurisy or I have a kidney infection etc and usually am right. Helps that my Grandfather was a doctor and he took me with him when he made house calls when I was young. I was starting to think I was going a little loco...the chemo that I had caused some cognitive problems so i am def. not as sharp as I used to be but I started putting all these symptoms together with the timing of this painfull full feeling at the base of my skull and wondered if some of the symptoms could be attributed to the Chiari's. So now I have some basis for research.  I went to a neuro in Reading and he basically looked at the MRI disc and said now I can see why your doctor wanted to get you in here as soon as possible. But that was really all he said. He had me walk across the room, asked me about incontinance and that was about it. Said he couldn't do anything.  I was like...Hmmm...when do you EVER hear a Neuro say they can't do anything - so that was very puzzling. Well, it's nice to know you have searched the area and have found no one so I know where to start...either Pitt or NY. thanks for the message and I am signing off as being on the computer is THE worst thing for me. Take care- Weath

[selmaS]

Hi...well howdy neighbor...I am in Allentown...where r u...Kutztown?.....Kempton....

Well, I had to go to NY for a chiari dr as I could not find one here and it was closer than going to one out in Pittsburg.

Many of ur symptoms can be considered chiari...and not all of us do have the same symptoms...the fullness, and trouble swallowing all very similar to what most of us deal with.

Most of us do not have the basic knowledge that u have about medical issues and meds like urself.

I did go to a NS at LVH...he said I did not have it...I also went to Philly, the NS there said I did but it was above him...I do not know of ne other chiari specialists in our area....

We do have a thread here, and u may have to travel like I did....u can choose to go to Pittsburg,PA- NY, Ohio....or further....

Have u had a CINE MRI?

"selma"