Weight Question and Numbness

General
1

Hi there, I’m Kris. I am new to the site.

I was diagnosed in 2011 because of these thunderclap headaches. I was originally told it was high blood pressure (despite being on meds). Eventually a doctor sent me for an MRI. He said, “I had to Google this. I’ve never heard of it before.” I was just glad to have an answer. I suspected I had a Chiari long before I was diagnosed, by browsing forum’s like this. The nurologist told me I was a classic case. I can’t remember what measurment I am though. I think 3mm but don’t quote me on that.

My question is, has anyone noticed a correlation between weight gain and symptoms? I have gained a significant amount of weight, and I went from having headaches only when I laughed/coughed hard, to having multiple every day. It’s almost debilitating. Even though it’s relatively fast, it sometimes leaves me on my knees, and very dizzy. It seems to get worse with weight gain but I can’t figure out why except that maybe weight on the back of my neck is contributing to the pressure?

Also, I’ve been having a lot of pain in my hands, and numbness. I have a history of arthritis but this feels different. It’s all day in and out, mostly when I raise my hands to a position that is 90 degrees bent at the elbow. Does anyone have that? I feel it coming on now as I’m typing this. LOL

Lastly, has anyone found relief without surgery? The Neurosurgon scared me when he said I shouldn’t have surgery except for a last resort because a slip of the hand could leave me paralized, but I’m constantly trying to figure out where I draw the line at what is tolerable.

I am also trying medical marijuana, but as much as it helps for every other symtom, it doesn’t SEEM to help the headaches. If anything, if I smoke it (vs edibles), there’s a good chance the coughing will actually bring one on.

I’ve tried bowing my head, burrying my head in my hands with my eyes closed, I’ve tried walking around (hard to do in the moment), laying down… it doesn’t seem to help.

2

Dear krispynachos,

Chiaris is complicated, multifaceted, diverse, and dumb. That’s to say, it gives each of us a different story to tell!

I did gain 50-pounds with my Chiaris, simply because I was close to total paralysis for 10 years before I was diagnosed and had decompression surgery (2002 - 2012). Sitting around unable to do anything will make you gain weight! Since I had the surgery, I have lost those 50 pounds.

However, I am on a post-surgery pain medication in which the side effect is potential weight gain. And, that is something I have to fight with daily. Food cravings is a major side effect of amatriptalyne (sp?) - but the medication is very good at stopping the pain from nerves damaged from the Chiari brain squish. Even after the decompression surgery, I have nerves in the brain that still want to say “ouch, ouch, ouch,” even though the damage is no longer there. Call it 'phantom pains," I don’t know. Our CNS is a grand mystery. Even though my brain should have healed years ago from Chiaris - it still seems to ‘remember’ the oweys. That’s why I have to stay on the amitriptelyne (sp?) - to keep me from chronic brain pain. I would have a non-stop headache if I were not on the amitrip… :thinking:

And, to mix things up even more…

You have issues with high blood pressure. I have extreme issues with LOW blood pressure! That’s why my hands and feet will go numb on me - I will lose blood pressure to my extremities. Isn’t Chiaris grand? Just when you think you’ve figured it out… :no_mouth:

When I work my arms too much (like Christmas baking tanked me the last couple weeks), or if I use my legs too much (like when I tried to boost my race walking training), these extremities went numb for days, especially at night. It’s all because blood pressure to my arms or legs just didn’t want to work well.

I didn’t recover normal blood pressure in these arms or legs until I gave up the stressing activity for a couple weeks. This is still the case 5-years post decompression surgery. I imagine blood pressure extremes are going to torment us Chiarians. After all, it is the brain stem that’s getting squished - and the brain stem is in charge of our blood pressure.

On a temporary basis - I am able to boost my low blood pressure with caffeine. On my functional days, if I start feeling my head go woozy from blood pressure starting to tank-out, all I have to do is guzzle a Pepsi - or grab a cup of thick coffee. And, my blood pressure starts to normalize. Eating a salty snack also helps. If you have high blood pressure - then ignore what I just said, though!!! I think blood pressure BOOSTS may be bad for you. :hushed:

I hope you are able to find a Chiari specialist where you are. I would also be terrified of a neuro-doc who says a slip in surgery might paralise you! Yikes! I’d turn and run, too! I was so blessed to Google - and find a Chiari specialist within a 90-minute drive of where I lived. He does nothing but Chiari decompression surgery - and he takes patients from around the world. He’s also getting older, and I’m afraid he might retire soon. He did tell me that the longer you wait - and the older you are - the less your chance of 100% recovery from decompression surgery.

I had waited 10 years from when I first developed symptoms - and I’m quite over 50 yrs old. So, my chances of 100% recovery were quite slim. But, I was willing to take even a 10% chance of recovery because I had been in 24/7 excruciating agony from my Chiaris - and hankered for even a minute of relief! Now - five years post-surgery - I get 3 days of relief, and one day of agony. Still. But, I am so happy to get those three days of relief!!! Vast improvement over no relief at all! :rofl:

BethR

3

BethR

I am reading about the low blood pressure and have not heard this before. Please understand I am not at all debating what you are saying but just surprised. No one tells you these things n I too suffer like you are talking about. I am post chiari surgery 4 weeks Jan. 1, 2018. How did you hear of this? I would like more info. They keep telling me it’s the nerves but I to suffer from low blood pressure and your symptoms sound like mine. Any info on this or where I can find reading material would be so welcomed. As for anyone else, do not listen to regular doctors about chiari. I had to be my own doctor n really push to get answers n went to a nerurosurgeon myself before I got any help.

4

Dear WRUMBLE,

Low blood pressure is one of my most obnoxious post-surgery symptoms that sill disables me. And, I am 6-years post surgery. If I stand up too fast - I’ll pass out. My neurosurgeon says I have permanent “orthostatic intolerance.” That means if I stand still in one place for over 10-seconds without moving any muscles, - especially leg muscles - my blood pressure will bottom out. When I did the tilt table test, my bottoming out blood pressure numbers were something like 60-over-45. I think that’s not too good - because I heard the tilt table techs saying they were about to go ‘get the paddles’ to revive me - once they leveled out the table. Fortunately, my pressure went up to 70-over-50 once I got some salt in me. But, I do have to be so careful.

Most of what I’ve learned about “why” and “how” symptoms happened - and keep happening - has been from my own study on brain anatomy. Like you, I’ve had to be ‘my own doctor!’ I think most of Chiarians have had to be quite proactive in trying to figure ourselves out. That’s what I love about this site - I am learning more and more every day.

All I know is that with me - my Chiari surgery involved about 1mm of cerebellum “ooze” that my neurosurgeon actually cut out & removed. (My neuro-doc jokingly said I wouldn’t miss that piece of brain) But, sometimes I DO wonder if I am missing that piece of cerebellum that got cut out! :thinking:

In my research on the brain - it is the cerebellum that is in charge of muscle coordination. A big part of my returning symptoms involves total loss of muscle coordination all over my body! I can’t walk straight. I stagger around like a drunk. I can’t pour water into a cup, tie a shoe, button a button, etc. I can get massively frustrated when I lose this muscle functioning. But, at least I have a 24-hour predictable ‘relapse’ every 4 days where my muscle coordination simply disappears. I’m learning to do nothing during those 24 hours. Just lay on my back and watch TV. In 24 hours, the muscle function returns. (So far - by the grace of God!) I just have to be patient and wait.

Same with the blood pressure problem. From researching the function of brain parts, I’ve learned that the brain stem is in charge of everything automatic - everything you don’t have to think about: sweating, shivering, eye focal muscles, intestinal movement, gag reflexes, ALL reflexes, cardiac function, diaphram breathing, etc. The list is enormous! When your brain stem gets “The Squish” from Chiaris, everything automatic can go wonky. For me, I had years of cardiac problems; palpitations for weeks, blood pressure skyrocketing followed by blood pressure plummeting - along with irregular heart beats. For years I went to various cardiologists. All of them tested my heart, and kept saying, “Your heart is normal. Don’t find anything wrong.” Grrr.

Well, the cardiologists were right. There was nothing with my heart. The problem was with my body’s ‘electrical system’ - which is the brain stem and its Central Nervous System. My CNS was short-circuiting all the time from Chiari ‘squish.’ Since my decompression surgery, I have very few of those old cardiac problems EXCEPT for the low blood pressure. Low pressure still has been my bane. Ugh.

I have asked my neurosurgeon about these symptoms - the “Why” and “How,” and I have not been given a definite answer. I’m beginning to wonder if even doctors who specialize in neurology don’t even know what specific parts of the brain and Central Nervous System all do! Personally, I think they need to study US. They need to follow all of us post-Chiari decompression surgery folk - and learn from us how our brains recover - or not recover - and why. :roll_eyes:

I can’t believe how many of my acquaintances perpetually ask me “why does your blood pressure keep dropping? Why do you keep having symptoms after your surgery? How come your surgery didn’t fix you totally? Why? Why? Why?” It is frustrating. I get a lot of my answers from this website - not so much more from the medical professionals. Brains. Can’ live with 'em, can’t live without 'em!

Hope 2018 helps you ‘balance the pressure.’ :wink:

BethR