Arnold-Chiari Malformation Support Group

Jean, I have not felt what you are describing, but I just had a thought come into my mind, that I have heard of someone having a spinal cord tethered at the skull base...I wonder?

My thought might also make sense because you have been over doing it. You really should not be lifting over 40 lbs!! I know, I used to try and go ahead and do it, too, and then end up in bed for a week, so finally, I decided not to do that anymore and ask for help. There's usually someone you can ask help from around...

I have tethered cord at the lumbar (detethered in 2007) and the tightness and pulling you are describing happens to me, but below the waist.

just some thoughts

I have heard about 'tethered cord' but just in passing & really have no details. Can you give me more info? How is this condition diagnosed? Will it show up in a brain MRI, or does there have to be a cervical spinal one done? Can this be in addition to Chiari?

Thanks for your response, guess now I'll have something else to research. ***Jean

Jean, I'll see if I can find any links to share with you. I know this can happen. I just read one scientific note that said spinal cord tethering at the Cspine is rare, but usually happens due to surgery (I'm guessing scarring or arachnoid adhesions).

I know of one woman who definitely has this.

Another thought is you might research syringomyelia. Perhaps the symptoms you describe will fit with that? I hope not.

Have you had any upper cervical surgery, or skull base surgery?

here4ya

Oh, you asked how it is diagnosed. Well, that can be controversial.

Some neurosurgeons are so experienced with TC, that they can dx it by hearing the symptoms. Also, I had various office tests done. Walking on your heels (does that make you want to pee?); walking on your toes? (same thing)....lie on the floor and have someone hold your shoulders, and another person pull your legs straight; does that give you an urge to urinate?

I do not know what the sx are
(sx = symptoms, dx = diagnosis, hx = history, trx = treatment) for the spinal cord being tethered at the cervical spine. But if it is like TC at the lumbar region, which is what I have, then the sx below the site of tethering (below the waist) are much like you describe. Does that make sense?

Let's keep looking for more info. The one site I found said Cspine tethering can be evident at birth...but if found in an adult, is caused by trauma or previous surgery. I can't seem to find that webpage now.

No, I have never had back or neck surgery. My Back/neck/skull hx is: herniated C5 disk 8 yrs ago, Brain MRI 3yrs ago for MS dx (MS dx not supported at that time) & all 3 spine MRI's also 3 yrs ago (again for MS dx) w/ spurs (arthritis) at C5 & L5. The Chiari was not 'documented' 3 yrs ago kinda to the surprise of the NL who ordered the brain MRI then & read the report from the latest MRI (Sept 09) to me. I've thought about syrinx & the MRI's that would dx one/them, but I can't even get a med professional to take this Chiari dx serious (I've seen my scans & from the research & other Chiari scans I've seen, the CM is there.)

My PCP sent me a letter (he ordered the Sept 09 MRI due to vision issues I experienced during a stroke-type episode) after he got the results & stated "the MRI showed areas of pressure at the base of the brain" & to see a NL. So I went to the NL who had the MRI's done 3 yrs ago & he read the written results (but never looked at the scan even tho I give him a copy) & said "Chiari 1 Malformation, we don't need to be concerned about it, don't need a follow-up MRI & your symptoms are not CM related. Here's Lyrica for the nerve pain, come back & see me in 6 wks." I kept the next appt w/my PCP & he asked me what the NL said. When I told him he said OK we're going to move on w/HBP (avg 140/70) issues. I asked him several times for a NS referral so I could get some Chiari answers & when he finally gave me a name whan I called that NS's office I was told my the nurse that that NS "doesn't do Chiari patients." I made an appt w/a NS in that same office who the nurse told me had CM patients & when he heard that the NL didn't think my symptoms are CM related, he told me I am too old to have Chiari symptoms. He did order a CINE-MRI & I did that yesterday (a very long & frustrating 4 1/2 hr ordeal.) Now I wait for the results.

I've rambled on here, but I do have another question asking you for your personal opinion. After having shared w/you my recent experiences, do you think it would be wise for me to start w/another PCP & ask for their recommendations for a NL & NS? Although, I'm assuming I wouldn't need a NS if the CSF is not compromised. And one more question (for now anyway LOL), how would you suggest I go about trying to engage my med professionals in a discussion about syrinx &/or TC? Thanks so much for your help & for listening. ***Jean

Wow, Jean, it's amazing the ignorance that is out there huh? All the doctors who have crossed your path have such a rudimentary knowledge of CM and a very antiquated opx about it, too! They are so wrong!!!

Yes, I'd get new doctors. Now, that's easier said than done. I'm sure many others here have experienced like I have (and still do) those appts with PCPs and NLs and NSs, and they don't listen, don't seem to care, etc.

I had the expert at UCLA tell me, "You're lucky to be alive. Get off the internet and get on with your life." Another friend went to Barrows Neurological Institute in PHX and was told to dye her hair, she'd feel better!!

The best thing to do is to find a regional doctor, perhaps, someone who comes highly recommended by someone you know. Do you mind posting where you live? What state and area? This might not be a large enough message board on which to ask the question and get some good feedback on doctors.

I used to think the only thing to do is go to the big, well known experts, but have recently been burned by such, so I am now seeking a new NS myself, but closer to home (Portland, OR).

I have heard of a good doctor up in Seattle, if you are near there at all. Not Ellenbogen, but at Swedish Hospital.

These are just my opx!! For what they are worth. In your situation, I would definitely get a new PCP who will refer you after listening to your research. I'd ask the gal in the office, when scheduling, "I am very sick neurologically and I am a good patient, but I need a compassionate doctor who will listen and work with me and consider me part of the team. Is your doctor that person?"

If the answer is yes, then I'd say this to the doctor when I saw him or her. Not in a defensive tone, but in a factual way. I've done this before, and it helped a lot. I asked my primary for work comp (all of my issues are trauma related) who was a physiatrist, "Will YOU be that guy who will help me and listen and admit what you don't know and send me where I need to go?" And he answered very sincerely, "Yes." And he was great!

Let's see if we can find anyone who can recommend someone in your area. Let us know where you live....definitely the doctors you have now are not one iota on your side!

In my opx, YOU need help and you need it now!

here4ya

Actually I live in an area that has a world class medical institution just 20 miles away...The Cleveland Clinic!! I am actually dealing with a Cleve Clinic NS now & getting no where. I have heard of several NS's with the Clinic who are to be Chiari specialists, but I think I've made the mistake by going along w/my PCP's (he's not Cleve Clinic)referrals. I am concerned at this point about getting the written report of my CINE-MRI before moving on to a new set of dr's. I guess my plan right now (although I have already started to dial the NS's number & have hung twice.)

So, in answer to your question & as a plea to our other members for NS & NL information (both good & bad please), I live in NorthEastern Ohio just east of Cleveland. At this point I am willing to travel, hopefully keeping the trip under 5 hrs. My husband is seriously checking out the TCI in NY, but I'm not sure I want to recover that far away from home if surgery is decided on or required. Any help with NL or NS names would be so appreciated. ***Jean

Jean, I hope to reply to you privately, but for right now, two thoughts:

Being on the "boards" for five years, I've never heard one good thing about Cleveland Clinic. Not one. They are not good for Chiari.

How about going to Wisconsin to Dr. Heffez? That would be closer, wouldn't it? I've heard some good things about him. If I lived closer to him, that is where I'd go (try).

Get those reports!! The law is on your side, it's freedom of information act. They have to give you copies of all records and imaging, etc, so I'd confidently ask for that. You have to pay for copying, so it could cost you $30 or more. Depending on how big your file is.... and I strongly advise ALL patients to have copies of all their imaging and records...keep them organized. Even if you love your doctor and all is going well, you should keep those records on hand for yourself, you never know what might happen on the other end...

more later, on the run now...

here4ya

Yes, I too have the rice crispy effects. Had my Chiari Decompression in Feb. 09 for 22mm herniated tonsils. Had lots of symptoms that went untreated for years but did not have the snap crackle and pop until recently.I think its just extra fluid that is stuck in tissues around incision site.Also have the tugging sensation on right side of neck and into right ear. PT said it was muscular and an "occipital release" which can be done by PT or massage therapist(or by yourself using a sock and 2 tennis balls--google it)usually relieves pain/discomfort.... temporarily. Good luck!