Newly diagnosed Chiari 1, couple questions

[Freyjaa]

Primary doc called with MRI results: Chiari 1 and not much else she could explain (ordered because of ongoing pain, primarily in upper back...hurts especially when sitting or standing for a while). I've had a constellation of weird symptoms but the upper back pain and weakness is the worst, especially since I teach violin and school orchestra.

I will meet with a neurosurgeon to go over the MRI in a few days (more than what my primary doc could/would explain over the phone). A couple questions if anyone has some thoughts...

Is upper back pain (weakness, stabbing pain, spasms) common in Chiari 1 or would that more likely be related to syrinx or something else?

If no seriously large malformations or syrinxes, how often are you monitored (regular MRIs?). I'm worried about my body but also my whole career...can't have any nerve damage in upper body. Already weak in the wrong places.

I have some obvious hypermobility. I'm worried about that connection. Is it important to find a neurosurgeon who understands this connection or what tests are appropriate? Or do I need to also go to rheumatology to ask for hypermobility type tests and official diagnosis? (I have a few unstable joints, several double-jointed, and am generally marfan-esque in appearance).

I'll create a list of questions for the neurosurgeon and include these. But if anyone has suggestions for other important questions related to these concerns, please let me know. Much appreciated...

[Elisaandbucky]

I checked into your post and read about the insensitivity you have experienced. In the visit with the first arrogant a** ****' you must have either cried or felt like crying when you got to your car. Now, as difficult as it will be, keep pressing to find a specialist with both knowledge AND sensitivity for your pain, frustration, and fear. I hope you keep up with your posting, as we care about you finding a sense of confidence in the surgeon you are seeking. I hope, also, that you can find relief for your pain during your course. Be well.

[flameofnd]

these are 2 dr. on the list for Minnesota chiari.

Dr. Mahmoud Nagib
Neurosurgical Associates
913 East 26th Street
305 Piper Building
Minneapolis, Minnesota 55407
Phone [phone]
Fax [phone]

Dr Nicholas M. Wetjen, M.D.
Mayo - Rochester, MN
Neurosurgery & Pediatric and Adolescent Medicine

[selmaS]

  No worries...I totally understand ...most of us know just how you are feeling and have had a NS tell us, it is not Chiari causing your symptoms...phooey...they just are not well informed Drs....period,

I had a NS do the same thing with me...very arrogant and I was told was a Chiari specialist....nope....he dismissed it completely....I found a true specialist after another unproductive visit to  NS.....this is why it is important for us to educate ourselves on Chiari so we can recognize when we find the right Dr.

  Not ALL with Chiari will have the same symptoms...and once it gets worse it can be that now we have perm nerve damage so to wait...does not make sense....get another opinion....if you are like the rest of us it may take  3 or 4 tries to find  the right Dr.

Know you are not alone.

[flameofnd]

I know what you mean my apt is January 13 with Dr. Peter Nakaji ,  I was very happy he is on the list of Dr who specializes in this.

[Freyjaa]

Thanks for taking time to respond...sorry I'm overwhelmed and touchy. The appointment was crap. I found out the radiologist diagnosed Chiari 1 and a syrinx. But as the neurosurgeon walked in, before he even sat down, he said the radiologist was wrong and "he's not a very good radiologist." I was immediately put off by the unprofessionalism and the jarring insensitivity...for a week they had me believing I had this major stuff. Then he didn't even look at the four pages of symptoms and info I had to fill out. He was just convinced and wanted to nothing about me. I at least asked what might be the connection to the pressure and pain and he babbled on about how chronic pain is confusing and we don't spend enough money on research.

He was just an a-hole. I had a couple pages of questions prepared but it was obvious it wasn't going to matter. But I did find out it was herniation 4mm (so not like an obviously bad situation) and from that MRI it looked like fluid had space. He also said what the radiologist called a syrinx (long, skinny lighter thing) was just my spinal column. He might be right, and I sure hope so, but I feel like I have no reason to feel assured or confident, especially since he didn't even look at my info. I did ask if hypermobile joints would factor in and he told me to go to rheumatology.

He did all the talking in the 5 minute appointment. Arrogant and totally willing to shut me down. He said "If someone has Chiari then they have difficulty swallowing and then we do surgery." First, that sounds really dumb and black-and-white. Second, I do have difficulty swallowing (choke of fluids or random things but it's minor and I've adapted mostly...but it was marked on the info he didn't look at).

I was shaking when I left there. So invalidating and confusing. I hope he's right but he was such a **** that I don't feel like I'd be sane to trust him. I immediately called a bigger hospital with some chiari people in their neurosurgery dept and asked for a case review.

The good news is it seems like a borderline case. No imminent brain implosions. But then easy to call it "chronic pain" and tell me to go away. I'll be on disability if it gets much worse. And I hate my life. Wouldn't a radiologist and neurosurgeon not agreeing on diagnosis warrant a different test or look over of symptoms? Like standing MRI?? (laying down feels fine, but everything goes to crap when I'm upright...pressure and spasms). Cervical joint stuff? ANYTHING to act like my pain matters or maintain my confidence in the clinic? No. So I'm leaving.

[selmaS]

  I m sorry that is how it came across and not at all my intent....the big issue I have is too many go with a surgeon that offers to help and that Dr may not have the experience with Chiari as it is not as well known or taught about in med schools.....

This is very over whelming for all of us and it is so important to have the right Dr for you.

You have nothing to be sorry for, I am sorry you did not find the info offered as helpful....I am trying to help you and others that read these comments....and the one thing I see far too often is people rush to a location for surgery and do not take time to research the Drs and then have post op issues....so my intent is just to stress researching the Drs and not to go to someplace close to home, as it is sometimes better to travel to get to the right Dr....

The upper back pain can be Chiari related as the compression of nerves in the cervical spine can affect the shoulder area, much of the pain I had was my shoulders and upper back plus I also get lower back pain as I also have tethered cord.

A syrinx (syringomyelia) can also be a reason....there are a few related conditions that have similar symptoms to Chiari and there are also non related conditions that should be ruled out as well....this is where this can get even more frustrating...as we should know ALL the conditions we have b4 we consider surgery....not all NS's will look for the related conditions and this can affect recovery.

  Getting copies of ALL testing on disk as well as reports is a great idea as it will help you get opinions and help you decide what your next step will be.

We do have a list of questions for the NS in the health pages.....

  Again, I am sorry you feel you did not get the support you were looking for, and I hope this answer is helpful.

[Freyjaa]

Okay, thanks, but the comments on telling me where to go came before I mentioned top in neurosurgery. I assume I don't want one good doc but a few working on my brain. I'm totally overwhelmed and instead of answering some of my questions it feels like this was taken as an opportunity to attack "big name" clinic. I live a few hours from Mayo. And if people are worried Mayo isn't good enough, I'm totally overwhelmed and might as well forget it. I'm not going to doctor shop all over the country but I will look for someone who can confidently answer my questions. I just need to start somewhere. I don't even know if I need surgery yet since my primary doc couldn't or wouldn't explain the full MRI over the phone, just Chiari 1 but my worst pain is not in my head but in my upper back. Anyway, I have 2 pages of questions for neurosurgeon I see this week and I assume I will move on from there, probably...will ask for copies of my records.

Anyway, I feel more overwhelmed for having come here for support. I understand others read these comments but didn't realize I should have left Mayo out to keep focus instead on my very newbie questions. Maybe I'll find out I have to travel more, but I'm just starting this all...just diagnosed and trying to get together my own questions for a productive first appointment. Anyway, Sorry......

[selmaS]

  I understand your comment on the hospital, but we do have others that only read these threads and I like to reply to everyone when I do answer these posts as some thing ok...top in NS and say I will go there as it is tops....but there are top neuro surgeons that do not have a clue to Chiari and or ALL the related conditions and still perform the decompression surgery....and then consider the patient fixed or cured...and if they develop an issue post op refuse to help....this is where the difference btwn a true Chiari specialist and a NS come in to play....this is why I say look to the Dr not the hospital.....and or it's reputation.

  Call those Drs 7 to 22 hrs away and ask about accommodations and let us know what you find out. I went 3 hrs away and none of my family could visit except for my DH and DD as she was in college in NY..but I liked the idea of no visitors...quiet and I didn't have to care how I looked.....lol...we are all different in that too....just worry about one or 2 getting in to see you....and having someone there to help once you get home.  

[selmaS]

  Surgery or not.....you can not begin to discuss until you have more info on your condition and how your Chiari is affecting your overall health.

Once you have all the testing to know those answers.....

  Once you do have those answers knowing if you can wait or if you should go forward with surgery can only be made by you and your Dr.....most times, unless life threatening your Dr will leave the decision up to you.

  If you wait , not only can it become life threatening for some of us, but some can end up with permanent nerve damage.

Most hospitals do have a location for patients and family when coming from out of town....TCI in New York has Variety House, and Dr Oro has Kathy's house in CO....so all you can do is ask the Drs office staff... each location is different and what the costs and accommodations are.

There are also non profits that will fly you and family to Dr appointments and surgery....look at our Health pages to see if you qualify.

[Bamagirl40]

I know what you are going through.  It took almost ten years for me.... And now my problems are persistent and relentless.  I am passing out at a moments notice and I am TrueType terrified to drive.   Just two weeks ago I fell, no one was home) and gashed my head wide open but I could not get in touch with anyway and glued it myself after regaining my senses.  I have old films dated 2905 that clearly show Chiari.  And that has made me so darn angry...

I wish you the best!

[Bamagirl40]

I am in the same boat as no one seems to understand what in the world I have.  I live in Saraland AL and there is no one close enough to me that I would trust for after care at all.  Most of the physicians are 7-22 hours away.  I am scared to death because if one thing goes wrong, my family would have a hard time to get to me.

Does anyone know if they have reasonable accomodations for someone traveling so far away?

Or maybe can enlighten me on the subject of surgery or not.  I keep getting responses that if it is no bigger than 5 mm, and your CSF is not blocked surgery will not be needed?  But what about the symptoms?  I have fallen twice in two weeks due to dizziness/vertigo/nausea, that I even fell and gashed my head open at about two inches long.

I'm scared..

[Freyjaa]

I'm overwhelmed.

[Freyjaa]

I mean neurosurgery dept. Anyway, I'm not shopping for name brands. And honestly i'm not even at the level of second opinions yet, so I doubt Mayo would be bad for more opinions if needed. Sorry for the confusion....not "brand name" hospital shopping, just being realistic about need to probably check with someone outside of my small local clinic that did the MRI. thanks

[Freyjaa]

Thank you bean, I shouldn't have mentioned Mayo. For me it's not about the "name"...they have a huge neurology department and chiari specialists (including someone on the unofficial list here) and I could maybe afford it since it's in my network. That's where Ill start if I don't feel right about current clinic. I understand I need someone who knows about chiari. I'm overwhelmed but I've gotten this far advocating for myself I guess.

[bean418]

Selma said it best .... look for a Chiari specialist and not necessarily a big name hospital/university.

I personally have run rampant for 4 years looking for a dx to my problems and have been through many drs. and depts. at a large well known facility here in Baltimore, MD and they were absolutely no help to me.  To be perfectly honest, I have gone to both well known facilities here in Baltimore with no help.

Finally, my PCP contacted a well known neurosurgeon that is Chiari specialist and he in one consultation diagnosed me with my problems.  
Finding someone that knows what they are talking about is such a relief.

It's very sad that my first MRI 4 years ago mentioned Chiari and everyone disregarded it.  Until recently.

Good luck and wish you all the best.

[Freyjaa]

I'm central MN. LOTS of good hospitals in the state since everyone has to compete with Mayo (which is listed as #1 nationally for neurosurgery, but I know I'd still have to get in with the Chiari specialists and the wait might be horrendous). I can't do private practice or out of network. I can't even afford a new furnace. This is just really stressful. Anyway, I will be insistent on info regarding any possible syrinx as well as the hypermobility.

The pressure I feel from sitting and standing could maybe be either of those along with Chiari. My head feels seriously misfitted and overly heavy for my neck...I've worked a lot on perfect posture and have to really "think" about holding my head in just the right spot. I feel like a bobble head sometimes. So if I'd need surgery I'd demand all tests for connective tissue or hypermobility stuff. And if I don't need surgery I still want to know that head-neck joint is not somehow exacerbating this Chiari. Everything I've sensed has been pretty accurate so far. My doctor was willing to call it "chronic pain" with no obvious cause and keep prescribing pain meds and muscle relaxants. When I asked if an MRI would make sense at this point (just didn't seem right), she agreed. I like my primary doc, but it's been an interesting dance of my own learning and advocating. I understand they can't know details about everything. But yes, I need to find someone who really understands all of this.

The days before meeting with the neurosurgeon to go over the MRI are starting to feel really long!!!

[selmaS]

  Yeah, most people do not get this at all...but with many Drs, even NS's that do not get it. it is not surprising.

  My Chiari specialists checked me for EDS.....and ALL related conditions.....

  What area do you live in?

They do clinical trials...but you have to see what trials are running and  if you qualify.....

  A notebook is great, I have one as well....but you also want copies of ALL MRI's on disk as well as reports.

[Freyjaa]

Thanks again. I'll be sure to make sure I find someone who understands Chiari plus hypermobility. I would feel better at a hospital where a few have the right knowledge and am limited by what I can afford (totally dependent on myself and my own income). But I at least have a few starting options if I don't feel comfortable at the clinic where my MRI was done. We'll see.

I did get a good little notebook to keep all of my questions and notes because I don't organize new info very well and this is certainly a lot!!! I want to have enough info well organized to help me make decisions. Glad for forums like this. I tried to explain it to a friend and she said she hoped they'd find a magic pill for me. Um, no.

[selmaS]

  http://www.medhelp.org/posts/Chiari-Malformation/-Chiari--Drs-list--links-2015/show/2415432

[selmaS]

  Big names like Mayo are not always the best place for those with Chiari...they are big with other health issues but not Chiari and related conditions...so look for a Dr not a big name hospital or clinic.

I bumped up the thread of  links to our list of Drs......

  Be advised, you may have to travel to get to a true Chiari specialist....there are many NS's out there, and some will say they can help, but they do not have the experience and are not well informed on ALL related conditions....

[Freyjaa]

Thanks Selma. I'm meeting with the first neurosurgeon available, but I think once I understand more about the MRI results I will look for a Chiari specialist if possible (recent MRI was thoracic...haven't done CINE MRI). My current clinic is not Mayo, but I'm in Minnesota and would love to move my stuff there if the wait isn't horrible. They would have some Chiari specialists (is there a list on this site of Chiari specialists?)...doesn't look like my current clinic specifically has Chiari neuro docs, but I'm open to what the neuro doc has to say...should at least be helpful in understanding the MRI because my primary doc was just summarizing some stuff from the radiologist. I'm just going to be really picky on knowing I'm getting the right help. I'll know more in a few days but it's helpful to make notes and go into the appointment feeling semi-prepared with questions...and if any syrinxes, more questions.

[selmaS]

   Hi and welcome to the Chiari forum.

I am  a former violin player with hyper mobility too....my issues when I was playing was my teacher would get so upset that my finger joints would fall and I was not getting enuff pressure on the fingering...also trying to stretch into 3rd and 4th position and be able to have the right pressure on the strings was not working, I had no idea about EDS and Chiari then.....

  And I will agree keeping moving is better then being still especially if on my feet....

  You need a true Chiari specialist as they will test for EDS regardless of which type you have and take it into consideration.....it can affect recovery should you need surgery.

Have you had a CINE MRI to detect a CSF flow obstruction? A MRI of the thoracic and lumbar spine to rule out  a syrinx?

  Get copies of ALL testing, MRI's etc on disk and blood labs.....along with reports....this will be helpful in getting other opinions.

  Use the list of Drs to research a Dr that treats Chiari...they are not all the same....and we all will like different Drs for different reasons...also educate yourself on ALL related conditions so you will know what to ask the Drs.

  Know you are not alone.

[Freyjaa]

p.s. playing violin doesn't seem to make it worse (was the obvious first idea but physical therapy didn't help much and upper body pain doesn't follow very obvious patterns). Movement is much easier than stillness.