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620923 tn?1452915648

What is the worst thing you deal with , with Chiari?

Hi All....please list some of the worst things you have had to deal with as a result of having Chiari?

Examples- no one believeing your pain
                - not being able to find an experienced Dr.....
10 Responses
620923 tn?1452915648
COMMUNITY LEADER
Hi all....I am hoping that some of you will participate in this thread....reading these threads can help those that have yet to join to see they are not alone in how they feel.
2 Comments
For me is Dr’s thinking they know me when meeting me for the first time and don’t got a clue!!!!!! It’s there way or no way. Don’t listen!!!!!  The last one I saw was arrogant and made me feel that I needed help but not with him!!! Like really. He don’t even know me to make that assumption. It’s easier to deal with things then to explain myself all the time . I’ve given up on Dr’s and I’m just dealing
As I mentioned above BTDT too....so I know how you feel.I had a few very arrogant Drs....one said I didn't have Chiari the next said I did but it was above him and he couldn't help me and could not suggest where I went......but there is hope and there are Drs out there that can and will help...it is finding them that can be frustrating.
I have a list of Drs from members here that liked the Dr and were treated by these Drs....it is in no way a referral nor an endorsement of the Drs, but a means to narrow the list of whom you research to find the right Dr.If you would like names to research let me know what area you are in and can travel to.
Avatar universal
One of the hardest things for me is not having the family support. Aside from my husband, who has been my rock
1 Comments
Kerri I know what you mean, since they never heard of Chiari it must not be anything of great importance or something to worry over....and even with surgery many feel ok now your cured....if only.....
1679858 tn?1346765181
Getting doctors to understand my vague symptoms.
Feeling like they think I'm just an anxious mess!
1 Comments
HI Lynn.....oh I remember those Drs too.....the worst
Avatar universal
- the obvious constant head, neck, and, joint pain, the daily muscle weakness, spasms, twitches and numbness, the heat explosions (because they are definitely not hot flashes - trust me, I've been through menopause), the ear, nose, and head fullness, the inability to maintain a normal body temperature, the memory, speech, balance issues

- finding out the newly discovered symptoms, that are connected to this condition, daily

- the one or two days a month when you actually feel okay and, you think "wow, everybody is right, there really is nothing wrong with me"

- the several different diagnoses' from the so-called "trained" experts

- realizing at 54 years-old that, I can't perform my work duties but, I don't qualify for LTD because, my GP made some bad decisions, when filling out my application

Sorry, if I sound like a Debby Downer LOL just wanted to put it out there!!
2 Comments
Hi and welcome to the Chiari forum.

We all know too well having a Dr not well informed on Chiari that can hinder us getting to the Right help we need.

I was also denied LTD, and I was told in order to fight it, it would cost more in lawyer fees then I would end up getting, and at the time it happened to me, the only well versed lawyers on ERISA law were out in California....ugh

One thing many of us do not realize, is Chiari symptoms cycle, so we can have a few days, weeks, months or even years feeling good only to have it all come tumbling down with never ending pain......

May I ask what testing have you had to date and what other DX's did you receive?
Hi selmaS,

Since 2011 I have had 4 CT scans and, 4 MRI's.

2011 - d'xs - daily headache syndrome (cop out) given meds that just create meds hangovers so, I don't take them.
2013 - d'xs - CM1 but, pain controlled with topomax & elavil so, told to come back if symptoms worsened and, NS will put me on surgery list.
2014 - new d'xs from same NS - IIH - given Blood patch (hurt like hell) didn't help, at all!!
2018 - I don't do anything for 4 years bc I am so disallusioned but, bc the symptoms are still there I go back to the NS and, he does another MRI which shows not much difference from the previous one.
2019 - the pain/symptoms are unbearable and, I am unable to perform my work duties.  Now my NS tells me the pain/symptoms I have couldn't possibly be related to CM and, he is sticking to the IIH d'xs.  He says he can't tell me why my memory doesn't work and, I am in so much pain - I will have to go back to my NL and/or a Pain Clinic (btw this is the 1st time he has ever mentioned a PC to me).  I leave his office bawling my eyes out!!  My new NL seems nice but, tells my GP I am suffering from migraines only, without even seeing my imaging.  My PC referral mysteriously gets changed to a Headache Clinic referral and, they want to treat me for migraines only.  My 6mth FU NL apptmt gets cancelled due to a "family emergency" and, never gets rescheduled.  This is after he has now received my imaging.  I have an "assessment" apptmt with a Psychiatrist that I thought was for treatment (who knew you had to qualify for mental health treatment). She started being pushy with me and, judged me for being an occasional MJ user (even though she didn't ask my medical history) so, I just gave her quick answers to get out of there and, immediately told my GP to disregard her report as, it was not going to be accurate. My GP decides to believe this PSYCH assessment over, what she can assess in front of her - I am an emotional wreck, in her office, every other week, which is when I have to see her, as per my STD requirements (which my work not once had to ask my GP for any records/notes during my STD they actually believed that I was ill just, from our phone convo's & 1 face-to-face with the company GP). I have had push backs from my GP, to return to work, when I was obviously emotionally unready and, she screwed up my LTD application by understating my conditions and, lying about my progress and, then charged me $144.15 (which my son's GF had to, go out of her way, to deliver in cash, before her secretary would fax the app).
2020 - I have a new GP - YAY!!  I have a new PYSCH d'xs - depression due to my CM condition. I have found this wonderful service, through my husband's benefits, called bestdoctorscanada.com whereas I uploaded all of my imaging and, records to their secure email/fax lines and, they have consulted with a world renowned NS Dr. Roberto Heros, who has confirmed my CM1 diagnosis and, has recommended surgery without even having a CINE flow MRI. So, now I am in search of a NS who specializes in CM.

Sorry for being so long winded - I just didn't know what to leave out LOL

620923 tn?1452915648
COMMUNITY LEADER
Hi no worries and no need to apologize....we all have BTDT and been treated that way...you defiantly need to find a true Chiari specialist. I will add the link to a thread that members added names of Drs in Canada that helped them....NOT ALL on the list may be true Chiari specialist but the list is meant to be a tool to research Drs.

https://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-CANADA/show/1270605

Please do not rush to have surgery just because a Dr offers it...many do because they get paid when they perform surgery...but ego's do not always allow those Drs to think it out and admit they do not know the co-morbid conditions OR precautions to take during surgery. Many  Drs have left patients off worse then they were before. Surgery is NOT A CURE OR FIX it is only meant as a means to slow progression and restore CSF flow...so how, HOW can a Dr offer surgery without a CINE MRI?  It is possible to have symptoms without an obstruction to flow....if that is your case surgery should not be done....

Take deep breathes....slow down and educate yourself on Chiari and ALL related conditions and research Drs in your area...OR travel to get to a Dr that is well informed and EXPERIENCED with Chiari and ALL related condiitons.
Avatar universal
Hi Everyone, I saw a Dr.  a while ago now who actually said that my diagnoses was an accidentally finding and that I should see a physiologist. Never in my life have I felt so belittled. I get that I can live a normal life more than not but when I have my days they are not good. I am always getting fluid in my ears or infections and then when I go to the specialist they say there isn't any fluid there. My family Dr. wasn't happy about it  but nothing he can do he isn't the specialist. I have a 10mm herniation and never had surgery the one Dr.  I saw in Newfoundland was totally so unprofessional and honestly I wouldn't let him touch me at this point.
1 Comments
Hi and welcome to the Chiari forum.
Many Drs consider Chiari an incidental finding, and even more still  do not know or understand  how it can and does affect us..
You need to find a  true Chiari specialist....and even then , do your research and educate yourself so you will know when you have the right Dr.  I have seen many that once a Dr offers surgery they feel they found the right Dr...but surgery is not always your best option....so, again educate yourself.

Now, you mention a 10 mm  herniation, but  do  you have an obstruction to your CSF flow? Do you have any co-morbid conditions?

I know just how you feel, I saw a few Drs that made me feel insignificant, and small.

Some Drs  here in the States will do a virtual call  and may be able to steer you and your Drs in the right direction,.
992677 tn?1537668903
Wow! You come up with some good questions selmaS!

I’m taking a break from my normal response to answer this question. Normally, I would read all the responses before answering so as to not repeat someone else. With this question I believe repeating may be necessary to help us all see the real answer to the question.  So her goes I’ll try and keep it short lol

Doctors that think their  own perceived knowledge give them more insight than a specialist who actually understands chiari. Doctors who see CM on your chart and turn you away from the ER thinking oh they are just making it up. Doctors who like to ignore you to tell you what is going on without even talking to you about why you came in for the visit.

I’m not sure if this fits or not? Forgive me if it doesn’t. Perhaps my absolute most emotionally difficult thing with Chiari is never knowing if this new symptom is another evil tentacle of CM that can be ignored or if I’m going to have to fight to get some doctor to open their eyeballs enough to see oh we should check that out. Current example - part of my birth symptoms from CM was near death due to spina bifida occulta. My spine stopped just short of killing me at birth. Because of that my spine has continued to decline the pain is so extreme at times I can’t even get into a bathtub to soak. Yet you go to the ER for what? Help? NO, because they don’t do anything but say oh it is just your chiari. I hate living in a small community of blind people. My wife gets it because she knows me and sees what I deal with even when I try to hide it.  Others who knew me my whole life??? People I’ve bent over backwards to help my whole life... do they get it or even try??? Nope. I’m not alive anymore because that would be too difficult for them to accept. I hate the part of me that still wants to help even those people. I hate that I can’t just say screw you and move on. I hate that it isn’t someone’s fault that we can blame but you know what it really is our load to carry not that of others. Sometiems for me that is the hard part. When pain from a combination of things gets to the point where you feel like you need help but no one will listen because they figure ‘we’ll he had the surgery he should be fine’ or even worse is the IDIOTS calling themselves Doctors that have the understanding of an unborn child.

I’m sure the list goes on for us all. To boil it all down for me it is the same thing that I already despise in humanity. It is just amplified by the above things in my case. I expect basic human decency from anyone I associate with or consider my doctor. With CM you seem to loose the right in the eyes of others to be treated as a normal human being. When they have a bad you are supposed to bend over backwards with empathy but when you do it is just oh you having a bad day. Ok well hope it goes well and they disappear. Doctors are some of the worst at this!!! They want easy cases not something that might have a hiccup

CW
3 Comments
CW what can I say, well said....yup, yup AND YUP!!
I can totally relate to much of what you said and if it is a repeat of something someone else said then it goes to prove that we are truly all dealing with the same issues. Drs being the first and biggest obstacle in getting relief due to their egos or lack of information and or experience with Chiari.

It's nice seeing your posts again...hope you stick around <3 sis
Here I will add one more thing. It has been happening in my case for nearly 4 years now. Pain is not necessarily my head. No, but my mobility has been declining to the point I’m stuck in a chair now. It started in my neck which we all get. About four’ish years back it started moving up from my right hip through the pelvic area etc... blah blah Anyway as always even though my digestive system has been proven to not metabolize opiates for whatever reason doctors still always seem to believe that is what you want no matter what I say. Then you don’ take their worthless script and they think you just don’t want help??? Huh!!!

Briefly, because I’m kind of not myself right now I’ll take my filter off.  Selma... forgive me if I go to far and just delete I won’t be offended. I just do not get mad. That isn’t me. But right now I am realizing maybe not how but I do get why some people fly off the handle so easy. I’ve never been so ticked in my life.

In the last four years I’ve seen as many pain specialist for the back issues that are affecting my mobility. Everyone says noting wrong even though one PA showed me two fractured vertebrae at T10 &11 and told me that was part of the causation her boss disagreed and that was that. Well since then pics show she was right and of course now it’s healed with the nice little bulges that causes. Shorten the story each of the doctors I’ve seen have had weird reactions with their choices of treatment. One accidentally nicked my cord trying to implant a stimulator due to the angle of curvature in my low lumbar alone with the slippage he could not get it in. So he referred me to someone he felt was better. That guy was a joke seen me twice and moved me somewhere else. To be fair he was a quack though. Ran ppl through like cattle and did the same treatment on everyone. The next guy was pretty decent and not afraid to say I don’t know when the time came for it.

It was cool in a weird way. At this point I tell every single new Doctor that if they can’t say I don’t know if the time comes that they need to then tell me now so I can leave. Some get an attitude I don’t give a hoot any more.  Sick of the games. Well this guy tried a couple of treatments and then went back through all of my records that he could find. Which was only back to around 30ish years of age. After that he called me into the office. He showed me the videos of his procedures. Said he was looking to see if the nerves in my low sacrum area had ever been damaged. Showed me his file and the nerves that he felt caused the paralysis temporarily after his nerve blocks. Then this dude faced me and knelt down to my level. He said Michael, I am sorry but I do not understand how to help you. Then asked me if he could send me to Doctor in Lorain Ohio that he felt was better qualified. Ok. So I go with high hopes this guy is supposed to be good. That was a year ago. He recommended RF ablation after looking at the records. But wanted to attack my neck first when the major issues were in the low back. So we agreed to try Chiro and deep massage for the low and mid back. It was working  until around December of last year. I was taken into the ER and no one can agree what happened. But that started a whole new chapter of ignorant doctors. Science is not exact we all get that. But how can 5 different doctors have 5 different answers for what caused my symptoms that night? One bluntly insisted it was a DVT  that had broken up. Others insisted no but an unspecified thrombosis and nothing ended up happening. So I went back to my PCP and he says I made it up. Huh!!!!! I went down, my wife observes my inner thigh bulging it was that artery bulging and pulsing then the vein or whatever on my left temple started doing the same thing and pain whew yeah. But because they can’t figure it my PCP says I made it up???? Did I mention I’ve not seen him since and won’t until the urge to tactful tell him off leaves. And then it will be to say you are fired and tell him what quack he is to his face. Uggg maybe I will. Lol Anyway fast forward to last week.

Something happened during the night a week and a half ago. I was sent to the Guy in Lorain yet a second time. So yesterday I went. Doctor had the CPN interview me again since it has been a year. She was super nice and I felt listened. That is a plus. She promises she will call with results of the pictures when they are done. No problem sounds good, right? Yeah, no phone call. No explanation. Just a note in their MyCharts telling me the doctor isn’t comfortable treating me and I need to go to a Chronic Pain management program at Cleveland. That is a 3 hour drive each way and they know the ride is what causes the majority of the pain.

Sorry, I try to be the source of encouragement when I come on this list. That frankly makes me feel good to try and help someone else. But right now... just want to yell at something. When I was younger I would have said punch something even though I never did. But now chiari makes sure I don’t feel like moving that fast. Lol.

But seriously, in this world we live in. It isn’t perfect by far we all know that. But medical care should have come far enough that there could be some standard of care. Because you see Chiari Malformation or one of the other weird issues it brings with it... no there should be a law against supposed Medical ‘professionals’ blowing you off just because they understand one illness or condition that you deal with. Because you know what one of these times they will send one of us away blaming something on Chiari that isn’t chiari.

Ok... do I send this or delete it and call it therapy. 3rd person here so uh don’t send the paddy wagon yet selmaS. Lol You know, just in case it helps one of you unfortunate ones that actually read to the end. Here goes more exposure than I’ve ever given on a forum.

CW
My Dear CW, I figured something was going on, but I hope you know I am always here for you..PM or here on the forum. I do understand your frustration with the medical community as I have been dealing with them in /on a different issue but the results are the same....no answers and they claim you came for one reason that had never been mentioned...ugh.....so, I do understand.

Now what can we do? I wish I had an answer....I think it is finding the right Dr...and we know unfortunately there are not that many that are well informed AND experienced on Chiari and related conditions.

I am not sending the paddy wagon just yet, CW I know you will let me know when you need it.

Remember I am here,
sis
1679858 tn?1346765181
I think the ever changing symptoms, (as well as the usual continuous symptoms) are confusing to me, let alone a doctor! When I’m asked, “what are your symptoms?”, by a doctor, I often don’t even know where to begin, it’s so extensive! :(
I also feel that I’ve been told for so long, that it’s all in my head, that sometimes I believe that it may be the case (or wish that were the case) I honestly don’t know what’s real and what might be in my head anymore!
Getting my thoughts straight, on paper, isn’t the easiest either, never mind going to a doctors office and being expected to shoot off the most important essay of my life, only to walk out without answers to most of it!
I could go on and on here...stay tuned! Ha!
Avatar universal
For me, it my legs and speech difficulties. A friend of mine understands what's happening to me, he asked how I was doing and he was like "oh crap" because I held up my crutches, he understands it progressing. I went undiagnosed for almost 15 months now. I hate when a couple of people claim "Chiari can't progress" and it can. I went two fully functioning legs to legs that can't work well. Last weekend, I had two visitors they were like "you're walking fine" to that Monday they were like "you don't need crutches to walk." and I felt humiliated because I do need the crutches to help because I can barely walk, when I do walk without them, I struggle big time. I can do short distances, like really short but long distance is hard.
1 Comments
Hi I answered on your thread, have you had a full spine MRI? Was a syrinx ruled out? Other issues/conditions ruled out?
Make sure you get a Dr to RX them and then you can apply for the handicap placard  for parking....I know how difficult it is to walk too.
992677 tn?1537668903
Wow…. Lol! Not laughing at you or the question. Just the reality of how many ways Chiari has an affect or effect or lives is just overwhelming if you let yourself think on it.

When a trip to the ER becomes necessary, visit to a new Doctor, etc. With virtually any change in your health care you have to deal with the sorry but idiot policies. Here we have what they call a trauma center. Locals call it a joke. Yet to get anyone to give me the time of day when things do go wrong I have to drive not 3 miles but just over 3 hours to get help. Here the ER has sent me to Cleveland Clinic for sciatica pain. Well the fact that I’m a double amputee has more to do with the sciatica pain than Chiari does???? More recently I’ve given in and sought a therapist just to help my mind come along for the ride. I’ve always had issues riding or driving pain wise due to other issues. So making us drive additional hours ina car because medical staff here can’t do a little research on their own.. ahhh wrong day for me to have read that question Sis. LOL

CW
3 Comments
Hey CW--- So sorry to see you are having a rough day.....I pray for you and your family daily...miss you.
Have you been working on your book? LOL...not laughing at you either , but at myself as I know the answer. I am trying to help this forum become the community it once was....but , it doesn't seem that people want that anymore.
I hate to hear that Selma. I personally haven’t done anything to help that. Hopefully one day I can… ATM pain from other unrelated issues have levels beyond what I’m able to deal with very well. Mostly spinal garbage.

Frustration with medical personnel is growing. It has been similar to finding a CM dx it seems pointless at times. Two days ago I had MRIs of the cervical, t spine and lumbar. I didn’t say anything to the tech but she stopped the testing short because my neck and back went into spasms from laying on the table. Something in my T-spine and lower lumbar have been getting continuously worse over the last few years. Since February of last year the progression in pain has been unbearable at times. So yesterday my primary care sent me to the ER thinking I was having a heart attack. I told them NO it is the nerves in my t spine. I can feel something wrapping from a spot just below the shoulder blades. At least that is where it feels like it coming from. And again Radiologist say no change??? Something is different to the point that frankly I had better quality of life when CM was the problem. Numbness in my back that won’t even let one push to have a bowel movement. My minds says push but you just sit there nothing happens as I can’t seem to use those muscles. Yet radiology still says nothing different from 2 years ago.  Told my Docots nurse just now that is such a crock I feel like never listening or seeing a doctor again. Something is wrong and getting worse rapidly at least it feels worse pain wise. After 5 hours in the ER he confirmed what I said when we got there. I told them it was something in my t spine as I can feel it wrapping around me like a band of pain. His synopsis says pain from t spine related nerves. Wo what do they do about? Do they even care to look for an answer as to why? Nope!

Instead I just got a phone call from the Doctors nurse. The whole phone call felt like she was just calling to try and say I was suicidal. Which I am not. Told her I am fed up with the system. When you need help for pain waiting 3-6 months to see new doctors that say exactly the same garbage is BS. When someone needs help after a car accident you dont say Oh I’m sorry come back in 6 months? So why arggg sorry I frankly don’t get ticked anymore rarely ever. This has my blood boiling! Radiologist states in his finding that he can’t properly view portions due to past surgeries. Ok, I’ve had 4 hernia surgeries since the last MRI. That is in my gut not my back. So his response makes no since being as an MRI from August 2019 they could see that area. Just goes on and on and on… nurses response is so appalling I myself heard it and can’t believe it. I asked if it isn’t bone then wherre to we go find an answer and she said “,, I know that severe pain just makes us feel like the only solution is to put a bullet in your head..” HUH!?!?!?!?!?! Since when do you talk to a patient and make comments like that?

I should delete this but Sis I know you care so I won’t delete it. Just fed up atm

CW
CW I am so sorry Bo.....my heart is breaking for you...I know how much you have put up with and now this....it is not right and I agree, they wouldn't make someone that was in an accident wait to get care and a DX, so why do that to you??? UGGHHHH I am frustrated along with you.

I know you know about tethered cord, has that been ruled out for you?

And since you are saying your gut and not your back, do  you have pain that radiates to your back from your gut? Have you been tested for diverticulitis? Trust me the pain is severe!! I have been to the ER twice with the pain and no DX....however years ago I was told I had diverticulitis, but it was not causing issues, or so they ( medical professionals) but when I had flares of this, they couldn't tell me what was causing the pain. I also can feel it in my shoulders ( or by my chicken wings as I call them...lol) When I have a flare, the pain  is so bad I was on dilauid and valium....and it didn't help...I figured out myself what was causing it by deduction and reading up on the symptoms I was having. One thing I read said in a flare  to only eat via a liquid diet to allow things to calm down..well I had a flare up and no more dilauid, so I used what I had, NSAIDS, Hemp tea and CBD gummies....it resolved faster then when I was using the dilauid and valium....so I am certain that is my issue, since I had a better turn around doing this.

I hope you get answers soon, I know how frustrating  it is to not have answers.....

Keep in touch sis.
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