Hello from a newbie! I was "officially" diagnosed with Chiari I Malformation earlier this year, though I've been symptomatic for longer than that (particularly in this past year-and-a-half). I also have breast cancer, technically Stage IV due to the fact that my original cancer (diagnosed in November 2006 when I was 27) recurred to my bones (spine and -- I guess? -- pelvis) in December 2008. However, I'm currently stable/cancer-free -- meaning the spine lesion is still there but inactive... the pelvic lesion hasn't even shown up on a scan since it was first spotted almost five years ago... and I've had no other progression.
The reason I'm even mentioning the cancer is that I do believe that it's interfered some with my Chiari diagnosis/treatment. Most doctors that I've seen (with the exception of my oncologist) tend to brush off my Chiari symptoms as somehow related to my cancer treatment... and before I learned of the Chiari even I just assumed that was the case.
Here's a bit more about my complicated health history:
1.) I had almost perfect health until age 26, HOWEVER, I was diagnosed with childhood scoliosis when I was about 8 (it didn't cause problems, but I'm mentioning it because I've read there's a connection between scoliosis/Chiari?).
2.) In April 2005, I found a lump in my breast, got it checked out right away, and was told I was "too young" for cancer. The lump grew -- I finally returned to have it looked at again in October 2006 and was properly diagnosed with Stage IIB cancer. Went through a year of off-on again chemo, which I had an easy time with for the most part (however, side effects -- which they warned could linger for years -- included fatigue, neuropathy, and muscle pain/weakness). I also had a partial mastectomy -- plus 32 treatments of radiation, which I -- again -- breezed through it (though they did mention the possibility of scarring as a side effect).
3.) Cancer recurred in December 2008, to the L5 region of my spine (plus, supposedly, my pelvis). No chemo this time. Had a number of radiation treatments to my spine and pelvis -- which I seemed to breeze through, however, they significantly lowered my WBC count and I actually ended up hospitalized with pneumonia (on a trip to Disney World, no less!) just weeks after the radiation ended. I recovered, although my WBC count was "below normal" for something like the next 3 years! (Even now, it's on the low end of normal.) Around this time -- spring 2009 -- I began my (still ongoing) treatment of Femara, Zometa, and Lupron (all drugs that can cause symptoms that overlap with some Chiari symptoms; mine seemed to mostly be fatigue, with some arthritic (?) pain, and on/off again arm/leg neuropathy).
4.) Despite the above-mentioned symptoms, things went pretty well for the next 3 years, at least on a physical level. In early 2010, I did start to notice swallowing issues, particularly with "bread"-y foods (breads, pastries, even French Fries) which seemed to just get stuck in my throat. This didn't seem to happen very often, however, and Prilosec seemed to relieve it.
The big thing for me in 2010 -- I guess you could say "psychological issues" -- at the time, they were diagnosed as "depression", although I personally believe I was struggling with anxiety. I was hospitalized for this, and briefly put on Effexor and clonazepam (both of which exacerbated my fatigue, and both of which I loathed). Eventually, I switched to Wellbutrin, which was somewhat better and I was on that for about a year. I also started to take generic Adderall for the first time in early 2010 -- I've often believed that I have adult ADHD (my childhood school history could definitely support this!) -- the amphetamine seemed to help significantly, but some stupid doctor in the psychiatric unit took me off it for the ridiculous reason of, "I don't believe you have ADHD or you would have been tested as a child." (Never mind that he doesn't know my parents, teachers, or circumstances -- didn't ask about symptoms, etc., etc. He did switch me to Modafinil while I was in the hospital, which seemed to work and which I would have been fine with... unfortunately, due to my insurance it's been impossible for me to obtain any outside of a hospital setting!)
In May 2011 I had a sort of relapse and returned to the hospital -- where I was at least able to get back on generic Adderall, which I've been taking ever since with no real problems (unfortunately, it isn't always effective, but... this will be significant to my Chiari, at least I think so!). Also that year, I briefly took lorazepam instead of clonazepam (which I much preferred), though I eventually stopped all Benzo use before the end of 2011, as I worried it was contributing to my fatigue. (In retrospect, I have to wonder if the benzos were also contributing to my anxiety, as it seems to have for the most part decreased since I stopped using them.)
5.) March 2012 -- I went in for my annual cancer scans, was (again) declared stable/cancer-free, though the CT scan showed some unusual spots on my lungs. I wasn't too worried since they said "probably benign" (I'm used to weird benign spots showing up on scans). I'd been sick the previous month with what I assumed was a bad cold -- but could have been pneumonia, for all I knew. My oncologist suggested follow-up scans, which I had in summer and again in September of that year. Both follow-up scans showed that the original spots were gone, but new/similar ones were showing up?? (Same with the scans I had earlier this year.) My oncologist suggested that the spots could be related to my swallowing issues, which had/have grown significantly worse/more noticeable since I first noticed them in early 2010 (even water could make me choke/splutter now). I also had some lung fuction tests done, which showed that my lungs were kind of "borderline" but basically normal.
6.) April 15, 2012 -- I remember specifically because my husband and I were traveling in Canada and it was the day after my birthday -- I noticed for the first time, walking back to our hotel after a large meal -- a very, very uncomfortable feeling/pounding heart/shortness of breath, which wasn't relieved until we returned to the hotel, and I was able to lie down for a bit. This is something I've noticed many times since that first time...
7.) It was right around this time that I noticed my fatigue wasn't improving, as it tended to do around spring/summer for the past several years. In fact, it seemed to be getting worse. So did my shortness of breath.
Meanwhile, in May, I had my port removed -- they'd put one in a couple years earlier, assuming I'd need it for cancer treatment, but I was doing so well on the cancer front that I simply wasn't using the port enough to justify it being there. (It now required access for often for cleaning than for treatment!) Anyhow, the nurse who attended that procedure noticed that I showed some patterns in the recovery room that suggested sleep apnea. Indeed, my husband, mom, and some friends had also pointed out that I'd wake up and seem to be gasping for breath? (I can't say I ever remember doing this, but I DID -- and still do! -- notice ever-increasing fatigue...) That summer, I was finally referred to a sleep doctor, though they weren't able to schedule me for the sleep study until October!
8.) October 2012: I had the sleep study (which I hated, but I won't go into detail as this is already long enough!). I just assumed the sleep study would show obstructive sleep apnea, and was prepared to be told that I had to use a CPAP. This was more an annoyance than anything else; I was looking forward to the CPAP if it would actually decrease my fatigue, which at that point was to the point of debilitating!
Much to my surprise, the sleep test showed that I had severe central sleep apnea. The sleep doc concluded that it must be a cardiac issue, and speculated that it was caused by a particular chemo (Adriamycin) I'd taken years earlier. (They'd mentioned possible heart damage at the time, so I was disappointed and a little scared, but not too surprised.) He started me on nighttime oxygen therapy, and referred me to a cardiologist. He basically suggested congestive heart failure, and I was prepared to be told that I have this.
(Around this time, I also saw an Ear/nose/throat doctor -- assuming my swallowing issues were a separate issue, and wanting to get to the bottom of them -- he was not my favorite doctor, either -- long story short, he "diagnosed" me with esophageal scarring supposedly due to the radiation I'd had years prior, then sent me off without even a follow-up or referral to someone else.)
9.) December 2012/January 2013: I started seeing my cardiologist (Phoebe Ashley in Olympia, WA). She is for the most part, great (not necessarily educated in Chiari -- more below -- but very thorough and caring). She started me on metroprolol for my tachycardia (another thing I'd heard mentioned from various doctors but didn't pay much attention to at first). She also performed a MUGA scan and another heart test (I can't remember what..) and even did a follow-up to one of the scans, to look more closely at an area she was mildly concerned about. Surprisingly-- the heart tests all looked basically normal. I did not appear to have congestive heart failure, after all. So why the CSN, fatigue, and tachycardia?
It was Dr. Ashley's office where I first learned of my Chiari. Oddly, she didn't actually mention it -- however, she prints a list at each appointment with a list of the patient's present issues/complaints -- and there, on my (rather long) list was Chiari Malformation 1. I hadn't mentioned it to her, either -- I didn't even know what it was until I noticed it on her list! (It turned out that she'd noticed it on a pathology report from a brain MRI I'd had back in 2010, a "standard" MRI to check for cancer metastes to the brain. I don't remember my oncologist ever mentioning the Chiari finding -- although it's possible I was so focused on the relief of the scan not showing any cancer-related brain lesions that I brushed off any other findings. Especially because the report didn't suggest follow-up, and I wasn't particularly Chiari-symptomatic at the time... save for perhaps the swallowing difficulties, which were still "new.") Incidentally, I'd had a much-more-recent brain MRI from that ear/nose/throat doctor... but that one didn't show the Chiari? Still, it was listed on Dr. Ashley's printout.
One day after receiving her printout, I started to research Chiari myself. That's when began to put the pieces together: central sleep apnea, difficulty swallowing, major fatigue, tachycardia, muscle/joint pain/weakness, neuropathy, shortness of breath particularly after exercise and sitting/standing, off/on morning headaches (I haven't mentioned these yet in this very long post, but I've struggled with this possibly as long as the swallowing difficulty, if not longer; the headaches are very "occasional", though, or rather come in spurts -- I'll have some for a few mornings in a row, then they'll go away for a long while, come back, go away, etc.)... plus "newer" symptoms I'd noticed just since the beginning of the year, including neck stiffness (especially in the morning; generally, I feel like crap overall in the morning, and come to think of it that goes back to at least last year, though the neck pain is new-ish), balance issues, dizziness, car sickness, and light sensitivity (another problem I've had since as far back as childhood, but seems to be getting worse, particularly with fluorescent lights). I've also gained 20 lbs. in the past year. :( I don't know if this is directly Chiari related, but I'm certain that my fatigue/exercise intolerance can't be helping matters...
AND there were even other things that I've seemingly always had, but never thought much of, i.e. major (albeit usually short-lived) headaches that are triggered by coughing and laughing too hard (I honestly thought this was something that happened to everyone!) and usually relieved by lying down and/or Ibuprofen.
10.) I asked my sleep doc about Chiari. He said, sounding surprised, "You have a Chiari malformation?" then looked deep in thought for a few moments before saying that he "didn't think" it was related to my sleep apnea. So I asked Dr. Ashley. She "didn't think" the Chiari was related to any of my symptoms. My oncologist, Dr. Specht, just said that she didn't know. However, it was through her -- and Seattle Cancer Care Alliance, my treatment center -- that I was able to get the referral to Dr. Ellenbogen, the neurosurgeon at University of Washington. I'd found him through my own research, heard that he was an expert and had high hopes for my initial appointment. (He also scheduled a full MRI, which I had a few weeks prior to my appointment in May 2013.)
11.) FINALLY, I had the appointment with Dr. Ellenbogen and .... meh. On a positive note: he did confirm the CM (I can't remember what size he said, though I know he said "fairly large" and that I had either little or no syrinx (?) involvement). So at least I knew the original MRI finding wasn't a fluke, and that there really could be a connection to my symptoms! Although he didn't say much about my symptoms overall. Regarding the swallowing, he told me that I had no gag reflex (??). Surprisingly, he didn't seem to feel that my tachycardia was necessarily related. As for central sleep apnea, he told me that there was merely a "50/50" chance that surgery could improve it.
On a mixed note: he recommended against surgery. My feelings on this were mixed, because: 1.) the thought of the surgery terrifies me, and 2.) he said the surgery mainly benefits those with debilitating headaches, and fortunately headaches aren't really a symptom for me at this time.
On a disappointing note: the second big reason he gave for recommending against surgery -- my cancer history. He seemed quite surprised at the fact that I had/have Stage IV cancer (and told me I "looked great" for somebody with Stage IV cancer). He also said something, though, about how because of it, he didn't recommend surgery (unless my headaches increased, then he'd re-consider)... how the Chiari "wouldn't kill me" (with the unspoken implication that the cancer would, which is probably true, but...) , and how if my oncologist "tells me I'll live for 20 years", then he'd re-consider, as well.
I think that last comment, at least the "20 years" part, was semi-exaggerated/a joke... but to be honest, it really rubbed me the wrong way. The thing is, I could kind of see where he was coming from. However, I'm not sure he realized that as far as the cancer goes, I'm doing VERY well. UNUSUALLY WELL, Most likely, about as well as anybody with Stage IV cancer could be doing... and it's been this way basically since I was first diagnosed with the recurrence, which was almost 5 years ago! Again, I've been stable/cancer-free since at least June 2009, when I had my first follow-ups scans. Even some of the side effects that I initially assumed were due to past or current treatments, I now suspect could just as easily have been Chiari symptoms, especially ones that didn't begin until months or years after I first started the cancer treatments.
It's frustrating because (simply from my experience, as I know how awful cancer is) Chiari has been 1000 times worse for me physically than cancer is/was. Yet, people "understand" cancer and are seemingly more sympathetic/empathetic to it, while nobody "gets" Chiari. (I was really surprised to hear the NS pull the "But you look so good!" card.)
Plus... I'm cancer-free, darn it! Let me "enjoy" that, at least. I understand it's "easy" to just attribute symptoms to cancer, but I hate that doctors, etc. just make that assumption (despite what my actual cancer doctor says), it merely seems like a way to brush me off.
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TL/DR (summary):
-I have a Chiari Malformation 1, "fairly large", with little/no syrinx involvement.
-Possible symptoms include: (long-term): headaches after coughing/laughing; childhood scoliosis; "ADD-like" symptoms; light sensitivity (at least a few years old): difficulty swallowing; anxiety; fatigue; feeling particularly tired/bad during the day; recurring headaches which are usually mild or moderate; muscle/joint pain (in this past year and a half) central sleep apnea; tachycardia; exercise intolerance; dizziness/balance issues, particularly when tired/dehydrated; extreme thirst at times; ringing in ears at times, and general worsening of many earlier symptoms!
-I have seen a neurosurgeon in Seattle. He recommended against surgery, due to lack of severe headaches, and cancer history.
-I have seen several other doctors: a sleep doctor, cardiologist, ENT, gastroenterologist, plus my GP. I haven't "officially" seen a speech therapist (I was referred to one, but she didn't show up to the appointment and upon calling, said she thought it was the next day! needless to say, I didn't follow up...) Most if not all of these doctors attribute my symptoms to my cancer and/or cancer treatment, with the exception being my actual oncologist, who seems puzzled by the symptoms but does not believe that any of them are related to cancer (except perhaps the muscle/joint pain/neuropathy). The two doctors I actually asked about Chiari "didn't think" it was related to my symptoms.
-I'm currently still on oxygen while I sleep, still taking metroprolol, and... not much else. I take Ibuprofen for pain, and most of the time it helps. I still take amphetamine, which doesn't do much for me any more although it kind of takes the edge off... and gives me somewhat of a boost. (Caffeine, on the other hand, actually seems to make my tachycardia worse.) I briefly attended PT per my cardiologist's referral, but my insurance only covered a handful of appointments.
-One thing I eventually noticed while going to PT: what I'd initially thought of as heart/chest pain actually seems closer to abdominal pain, and seems to worsen with walking for too long, and/or eating too much. I've also noticed that my fatigue seems worse when I change from a lying down position to sitting/standing. On that note, I recently learned of POTS and highly suspect it's an issue for me. I have an appointment with my cardiologist on Tuesday and am deliberating over whether or not to bring this up to her (my hesitation is due to the fact that I already am taking metroprolol and trying to stay hydrated -- water helps my symptoms significantly! -- plus I always fear being brushed off, even though she's one of my better doctors). Meanwhile, I'm trying to eat smaller meals, and that seems to help somewhat.
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That's about it. Thanks so much for reading all or ANY of this very, VERY long post!!!
And since surgery isn't an option for me right now, I'd especially appreciate any suggestions for managing symptoms outside of surgery. Sleep suggestions? Food suggestions? Exercise? Any tips are appreciated! :)