Chiari Malformation Community
5.22k Members
Avatar universal

Has anyone bought forearm crutches because they found it difficult to walk?

I was recently diagnosed with Chiari on the 18th of September. This past Friday, I was struggling a little bit to get up the stairs but then Sunday came cause I stayed at a friend's house all weekend, I found it very difficult to get up the stairs and then a nurse where I am at thought crutches would be a good idea to get along with the hospital said so too. Has anyone had Chiari progress like this?
2 Responses
620923 tn?1452915648
Hi and welcome to the Chiari forum.

I use a cane , I found the longer the day was the less able I was to walk....crutches were not an idea I had, but there were times the cane wasn't quite enough. I have had surgery and don't need to rely on my cane as much as I did prior to surgery.....

We all will be different as we all may have other co-morbid conditions along with our Chiari...so that will change our symptoms and issues.

Do you have a true Chiari specialist helping you?
No, I don't, I'm getting a neurologist though. I had to switch primary cares cause the first one kept brushing me off. I've found that forearm crutches help me a lot but I struggle with going through the food line. I'm a college freshman which makes this harder.
May I ask what area of the world you call home? We do have a list of Drs compiled by the members here....it is not a referral but a starting place to research Drs.

So, you are in the beginning stages of your personal education on Chiari and related conditions then. Please feel free to ask questions and I will try my best to answer them and I am sure others will chime in too.

I only wish I was diagnosed at a younger age, I was 48 when I finally got my diagnosis....and I went to Drs while still in grade school, which told my parents it was " growing pains" funny I have three sisters they didn't get the same " growing pains" as myself.....hmmmm.

My mom also reported at a few months of age I wouldn't sleep on a different side of my head, she was concerned about my head shape and  the Dr reply was " be happy she's a girl, her hair will hide it".....imagine....ugh....

SO I definitely was born with this....mine was not acquired....but because MRI's were not used for this type of diagnosing, there was no way to really know what was going on.....so over the years I was given so many pain meds....and then meds for the side effects....

Hang in there, you in my opinion are lucky to get your  DX and there are really good specialists in the field that can help guide you.  
Hiya Mrs. Selma S.
I'm actually 18yrs old and the Midwest is what I call home. My parents are hard of understanding  that its progressing, they don't believe it can, they're in their mid-50s. My previous doc thought it was migraines, stress tension headaches, my eyes, dehydration, too much salt intake, not taking certain things, or just being a hypochondriac.  
I have read through some of your previous posts, I've actually found them rather helpful. I also have Autism (high functioning). My new doctor, he looks like Dopinder from Deadpool and he's brilliant like Dopinder as well. He took a look at my files and he's like "you've had this for a long long time." <---- I'm not sure if I acquired mine or not but I used to get headaches off an' on throughout my whole life. In October of my sophomore yr I got a concussion.....I was jumping on a bouncy pillow at a pumpkin patch.
I shall confess on the activities list: I listen to my music loud, I do end up leaning back at the salon (I also haven't gotten a haircut in 6/7 months ish), I used to weightlift, bench press up to 95 pounds, I used to run a lot, I sleep on my side/back/stomach, I used to dance for fun along to music, I used to do a lot of activities, like bike riding which I can't really do unless I want my crutches stolen.

I did read the list you made of activities/things to avoid, I'll confess, like I did to a buddy of mine he also has it as well, but he's had the surgery. I'm new to this, he's been like an older brother to me on all this. He went from me walking without crutches to using crutches to get around on the daily. On September 13th I woke up at 2am it felt like someone had ran my head over with a semi, my speech went downhill, I started to space out a lot, I even did that my drs appointment at my follow up right in front of the doctor. My mind went blank and I just stared off into space forgetting what I was going to say. The doctor was like "Do you lose track of time?" "Yeah."
I was recently taken off of a medication, and for our campus residency halls I'm pretty sure I'm the record holder, I've had to go to the ER twice via ambulance, the cops have shown up twice as well.....so yeah, the medication was a tricyclic coupled with an antidepressant. Does any of this help?
Yes it helps,  I understand what is going on a little more....Make sure you don't have a CSF obstruction due to the tonsils OR a retroflexed odontoid...either can cause compression of the brain stem.

A syrinx can also be a contributor to issues like yours.....that's the problem, so many think it's just Chiari when in fact there are so many variables to consider.

As for your parents not understanding how Chiari symptoms can increase and intensify, because there are far more Drs that just don't get it either....

Have you had a CINE MRI< MRI's of the thoracic, and lumbar spine in addition to the cervical spine?
I had an MRI last week of the brain & stem without contrast but here's what some of the report said: The cerebellar tonsils extend approximate 6 mm, a slightly pointed inferior configuration. Artifact obscures much of the upper cervical spine spinal cord on the sagittal T1-weighted image . No obvious cervical syrinx.
I've also had the headaches but not the mobility issues for 15 months
Having a syrinx ruled out in the cervical spine is a start, but a syrinx can form anywhere in the spine so you will want a thoracic and lumbar MRI to make sure you don't have one elsewhere in the spine. Then a CINE MRI to rule out an obstruction of CSF flow.
I just got back from the ER again, it'll be my 3rd time this semester (in less than a month too). They took a CT scan of my brain but the doc who was there tonight she was like "your case is mild, the headaches are probably from stress, and you don't really need the crutches because you should be able to walk fine." I had explain to what had gone as to why I had them, she was surprised but then she went quiet afterwards. Then I wanted to use the bathroom, my legs would barely even move. I ended up moving them manually with my arms so I could move. I struggled that much to get my legs to move, I wanted to cry the whole time in ER, I eventually tried to move them around but they would only go up an inch off the mattress, eventually they remembered how to work properly it just took some assistance to get them to move. When first laid there and needed to use the bathroom, the nurse was like "lets try to stand up." I looked at my feet and concentrated so hard to get them to move, it took time for my legs actually move like normal. I was scared, really scared.

Curious question about the syrinx: is there a chance it could be down low on my spinal cord and they missed it? My upper body strength is still really really good though. But can't Chiari affect some limbs worse off than other limbs? Its hit my legs pretty hard but my upper body is still doing really well off.

Then an anesthesiologist had to come in and give me an IV, so I had to explain what had gone on. He said "Do you have spina bifida?" I looked at him funny cause I said "No, not that I know of" he then said "It's the only thing that I can think that would weaken your legs like that." so I don't know what's going on anymore. All I know is, my case just got 10 times more confusing.
Yes a syrinx can form anywhere in the spine...and depending where will depend on how and where you are affected......so, if you are not getting a thoracic or lumbar spine MRI, it can be totally missed.
I have a neurologist appointment next week Friday. Ok, makes sense but they don’t know whats causing leg weakness.
Issues with the lumbar spine can cause leg and lower back pains......hopefully they will check your entire spine.....keep in mind there are so many Drs that are not well informed or experienced on Chiari and related conditions. Good Luck Friday and keep us posted on what you find out.
I ended up in the ER for a 4th time, my thyroid was really high. I was doing fine then I started to have a like a seizure, I was laying down on the couch in my residence hall’s main lobby. My RA was watching me and I would jerk, relax /space off, repeat for a long time. He got up and got another RA, I saw my family dog who passed away when I was seizing basically. They tried to get my attention by using the handwave trick in front of the face, they had to hit the couch to get me to respond. The EMTs asked if I’ve ever had a seizure and I said no. I was put on antiseizure medication today as well. I have to get a EEG on the 9th so yay. The neurologist said “Your Chiari is mild but why is it causing all these problems?”  I used to zone out a lot back in high school and stuff to the point the teacher had to stop class to get my attention. Then I have to meet with an endocrinologist about my thyroid cause the neurologist wonder if that was causing some of the problems. He felt my head and neck, those were really tender considering I thrusted my head back and forth multiple times into couch cushions and my body was all jerky. I’m still sore from the experience to be honest, my whole body is just tired. My PC said to mention the seizure activity to neurology, the neurologist  said it could’ve been rigor. I was scared. Since my heart rate is spiking up, I have to get a halter monitor as well.
I have issues with Drs that refer to Chiari as MILD or any other term....the problem is they are looking at your herniation length and not your symptoms....Drs will think your are  a serious case if your herniation is 13mm's however it is possible to have that long a herniation and no symptoms while someone with a 4mm herniation is passing out....it is more so the width and the restriction of CSF flow that is  important then the length of the herniation....imagine  a funnel...now pass shoe string licorice through the funnel holding onto one end while the other hangs out the bottom....can you still pour liquid through, does it slow it down? Most likely not.....now take a gum drop and place the top into the hole of the funnel....does that slow the liquid when you pour? Yes.....so, I made my point....it is the obstruction of CSF flow not how long the tonsils extend through the foreman magmum. Unfortunately not enough Drs are  well informed or experienced with Chiari to really know this, same goes for radiologists.

You need to find a true Chiari specialist to help you with this.

Have you had your thyroid checked using an ultra sound? When you have blood work, make sure they look at your free T3 and free T4 ...some only look at TSH levels and so many with Chiari also have Hashimoto's which can cause nodules to form, hence the reason for the ultra sound. I went   to an endo and he did nothing for me...my PCP finally put me on synthroid.

Keep us posted.
My thyroid is at a 12 for levels, a couple of people think I’ll be kicked out of college cause of my health (plus al the 911 calls)  and doctors will ignore me from here on out. I’ve been put on anti seizure medication. I haven’t had an ultrasound sound of my thyroid yet. I was put on Topiramate and unable to Levorythroxine.
My herniation per say is 6mm, that is all, but the neurologist was not happy about me quitting my antidepressant Bupropion weeks ago. It aggravated my symptoms, and it didn’t make feel in control. He didn’t get what caused the seizure though, so I get a sleep deprived EEG for that. I just wish my life could return to somewhat normal.
6mm that is all??? First there are two tonsils and they typically give the longer herniation measurement, mine were 6mm and 4mm AND I had surgery because I also had a partially retroflexed odontoid making the area for the CSF to flow even tighter.....as I said it is not the length if herniation but if it is causing an obstruction, a CINE MRI will be able to help your Drs determine if this is what is going on....obstruction of CSF flow can cause all sorts of symptoms one being drop attacks which is what I had and why I had surgery, to restore CSF flow and help avoid a syrinx from forming, A syrinx will form when there is an obstruction to flow.....again the main reason for the PFD surgery. It id not a cure and you may continue with symptoms....it just helps CSF to flow the way it should. We do hope for a reduction in symptoms....some do, so get worse....we are all different. And having the right Dr is key!!
Hi Mrs. Selma,

I was in the ER last night, 5th time. I had a seizure. My stomach felt weird, it was upset or achy, it just felt weird. Then I started shivering, then the seizing got bad. Thankfully a friend of mine was with me. That would've been my second seizure last night. They call 911, I was unresponsive, I was awake but I couldn't do anything. A cop showed up, he tried talking to me, got no response is what my friend says, he tried squeezing my hand, still no response, so he did a sternal rub, I made a noise that came out like "arrrr" or something like that cause I couldn't get my mouth to move in sync with my brain. I went from responsive to unresponsive so they decided the best way to communicate with me was through eyeblinks until I had stopped seizing(I kept trying to make vocals but it was no use because it was all bad, not even gibberish). I was seizing when the ambulance crew came in. They had to give me medication to stop the seizure, then the ambulance crew wonders how I am able to shut the shivering thing off/on. I don't know what they mean by that. What I do know is my 2 seizures go like this jerk-stare-relax-jerk-stare-relax-jerk-repeat along with weird breathing gaggy noises. The cop titled my head into the recovery position, the EMT put some tubing into my nose (and I think I freaked out due to a bad experience of COVID testing scarred me for life). One after the other after the other. They start off at 10 seconds and slowly they get longer and more happen and compile to be 10-15 minutes until they stop. The ER nurse thinks I want attention, 2 people think I need sleep, I don't know what's wrong. Most of the information I got was when I was coherent, I ended up looking at the EMT and asking him in the back of the ambulance "What happened?" cause I didn't remember how bad it got. I couldn't really even talk so when I kept saying Pikachu, it kept coming out like "Pee kah huu" cause I couldn't say it right, my words were really slurred.
620923 tn?1452915648
I really don't know what to tell you aside from what I already have.....you need to find Drs well informed and experienced with Chiari to help you,
Why would you be talking about Pikachu? Is it something important to you? Or random?

Did you have an EEG? Have they looked for seizure activity in your brain to make sure it is not a neurological issue?

For the amount of time you go to the ER, you really need to find a Dr and get the right testing done.....the ER will treat obvious symptoms and send you home to make appointments with the appropriate Drs....
Pikachu is my stuffed animal that goes with me to the ER, it helps keep me calm, part of being on the Autism Spectrum.
They also keep telling me the seizure episodes are in my head.
"In your head" meaning psychosomatic ? Let me tell you, there are many Drs that feel our  pain from Chiari is psychosomatic too....if that were the case we would not see benefits from the PFD surgery.As I stated before, an ER is not the place for those with this condition as you may never find someone there that is well aware of Chiari and how it can and does affect us.
I went to a different ER they helped, turn out, I have an infection along with a few benign liver cysts. So they look benign but the ER doc told me routine scanning to make sure they don’t develop into something worse.
The cysts are growing on my liver.
Wow, Glad they found this so you can keep an eye on it....what type of infection?
UTI, really severe UTI. Honestly, I feel like I’ve been sent through the wringer. I have problems with my Cochlea, Chiari, now the few cysts on my liver as well. I can’t get a break from healthcare it seems like. In the ER they were thinking it was my appendix going and about to burst which is how I ended up getting a CT with contrast. When the CT came back, I thought it would come back normal. Nope, I just got a few cysts that look benign but need routine scanning incase they decide to become problems. The UTI is so severe that I’m on a muscle relaxer cause it hurts my back so bad and my abdomen is sore.
I know the pain your back can have with a UTI, BTDT many times...plus, I also have a neurogenic bladder and can't always feel the need to go, but if my back starts to hurt OR I get waves  of heat all over I know to go and try,.....as I said how Chiari will affect someone always depends on what else is going on..and we have to find out what those other issues are to know just how your chiari is affect you,
I just know the headaches are the worst for me. This past Monday, before Wednesday. I was hanging out with a friend, my stomach felt weird beforehand and I somehow ended up in the grass. My friend called the RA duty phone who then called the head RD. The head RD had to roll me on my side because I was starting to have problems breathing. My friend said I was making gagging/choking sounds it was.
You really need to have more testing done to see what all is going on, it may be Chiari related and it may not be.....but until you have the testing there is no way to know for sure.
I get an  EEG so we'll know more hopefully by then. I just wonder what else is going wrong with my body that hasn't been discovered. It's crazy
Cause I have:
1. Autism
2. Depression (I don't think I do)
3. Anxiety (I don't think I do)
4. Chiari Malformation Type 1
5. Those seizure episodes
6. A few cysts on my liver (which was not expecting to learn or figure out)

What else is there that doctors can't seem to figure out. I mean it, honestly, what else is gonna be found within the upcoming months?
Well as I said Chiari rarely comes alone it has co-morbid conditions that it always seems to arrive with....Syringomyelia, Hashimoto's, POTS, ICP, Ehlers-Danlos Syndrome, Tethered Cord, ....and the list goes on.
Te depression and anxiety DX can be related to Chiari.....so many of us are labeled with them.
Apparently I also have hypoglycemia now too, its bad my doc said "You need a medical alert bracelet." cause my blood sugar went like this at the hypoglycemia test
Started off at: 85
Up to: 111
Down to: 104
Back up: 110
Dropped to: 78
So that wasn't fun to hear about. So now I have to carry food almost everywhere I go.
Just to throw my 2 cents in. Selma is totally correct about needing a chiari specialist. They are the ones who treat chiari but you’ll need to know what is causing what. As she said, there are many co-morbid conditions that comes with chiari

That being said, I’ve had 2 decompressions. 1 in 2015 and the second in 2019. The second one was the hardest for me. I had a mesh plate that adhered to my brain and actually had brain tissue woven through it. And scar tissue that wrapped around the 4th ventricle almost completely obstructing spinal fluid flow. Plus I’m a weirdo who actually regrew bone further restricting the area.

Now I have high icp and a spinal fluid leak which is causing seizure like episodes so I understand some of what you’re going through with that.

It all takes time to weed through but you’ll need to be patient until all the testings are done. I know it’s a scary time but knowledge will be your friend through this journey.

Best of luck to you
One of my professors was like "Remote instruction and major health concerns have only added to the challenges." I told him my motivation was, I am not going to let my first semester break me, it will only make me stronger and tougher. 6 rides in an ambulance, 7 trips to the ER. I'm still going as strong as I can.
Good for you....but do remember to listen to your body and rest when you need to.
Have an Answer?
Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
987762 tn?1331027953
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease