Newly Diagnosed - overwhelmed for sure. Nor Cal Girl :)

Welcome Greetings and Introductions
1

First things first, I’m a terrible speller and I’ve recently noticed that when I type I leave out a lot of words. Sorry ahead of time if things read weird. At least now I think I may know why! (Actually, my whole life whether typing or writing I’ve transposed P and B…now I wonder if everything that has ever been “weird” about me is because of this.)

Wow…so I got a diagnosis after an MRI last Tuesday. Then I blew out of town and headed to Las Vegas for a vacation. I was able to read half of Conquering Chiari on the plane. I’m not sure it helped. Today was my first day back to work and I cried all morning.

Reading more about it has given me a lot of clarity to the mystery that is my body. I’ve always been prone to headaches and just thought maybe I wasn’t getting enough water or something. I also have really lax ligaments and used to do a lot of yoga so that hurt my body pretty well after a few years. Luckily lifting weights helped some, but there would be times I would have nausea or headaches lifting (primarily after pushing the sled with my head down!).

In 2016 I was kind of beside myself because I couldn’t get over colds. I had colds from about October 2015 through May 2016. With little rest in between. I went part time in September of '16. I think my bosses think I’m a “lazy millennial”. I tried a lot of things. I’m vegan so I had my blood tested for everything from B12 to iron to zinc. EVERYTHING was normal limits. Healthy as a horse…right. I thought maybe I had a parasite so I did a cleanse. I finally just said to myself “oh well, you have to just do less than other people,” but that felt yucky too. Having a diagnosis does make me feel a little better.

I also get major depression which is frustrating. This also is relatively new to me and I hate the medicines I’ve tried for it. I see a neurosurgeon in a couple weeks. In the meantime, I’m grateful to have this forum to look through and learn from.

I have a million questions.

2

hey :smile: don’t worry when I first found out I couldn’t even pronounce chiari :smile: .I to was very fit and healthy I actually worked at a gym.And then BAM!!! my life had changed over a period of 3 years it started happening and I did not know why I felt there was a lot of guess work involved until I got a final diagnosis.I to thought I was not drinking enough water or maybe I was stressed and my blood sugar was low.I put up with the pain for 3 long years ended up confused,angry and in extreme pain.And I could not explain why.Thank god for MRI.I got decompressed in November 2016 and even with many many complications I am still standing I can belly laugh,exercise and sorry for TMI but I can got to the toilet with NO PAIN!!!.Because I had complications including menigitus,3 csf leaks that required a lumbar drain and an infection I had to take steroids and a cocktail of antibiotics :frowning:that wasn’t fun! being a firm disbeliever in antibiotics I had! to take them.But despite all that I can most definetly say.you are not alone and even at the worst possible circumstances cranial decompression is so worth it.And I to had major depression even 6 months post op I still feel it I wake up at night with panick attacks.Obviously everyone is different but what helped me see through the darkness was just sitting out in the sun in my garden or having my pets close by.Especially at night they are very comforting.Dont worry they put me on crazy!!! medications for depression.Once I went to the supermarket and I really was in a blur!!! I didn’t even relise I was speaking to someone it was like being really really drunk and half asleep.If they give you heaps!!! of pain killers one thing I wish!!! I did before hand and during was to take a probiotic supplement as medications can really mess with your good gut bacteria and lower your immune system.Im pretty sure I learnt more about brain anatomy now then when I studied the human body at school :smile:.Its amazing what you learn when its actually happening to you.One thing I do know with this particular disease is that.It is perfectly!!! ok to not be ok.Dont let others perceptions and truth determine your truth.And when you rest you are doing exactly! what you need to be doing.I find that people often look at me with judgement because im not working.But honestly they don’t know how fatigued I feel.Lifting weights was and still is one of my passions in life that and cycling it took me a while to get back on due to vertigo and balance issues :smile:.pree opp I did cyling and swimming as it didn’t require any sort of downward head motion.I also did yoga buttttt no downward dog :smile: I tried ti chi? but Im a very! impatient person so I just gave up :smile: .I hope it gets easier for you good luck!!.

1 Like
3

Oh my dog (<- intentional :grin:) thank you so much for reaching out. I feel a little better just reading this. I miss lifting so much. I was starting to feel so amazing doing it, until I just felt like crap after several workouts. I have very lax ligaments and did and taught yoga for a few years and that caused me all kinds of pain that weights really helped with.

I’ve always had energy and low grade headaches and have missed a lot of work for what “looks like I’m fine” over my whole life. I think my bosses just figured, she is flakey, but she does good work and it is on time so we will just let it go. Now I want to be able to explain this to them and I don’t know where to start. I’ve noticed my writing has gotten really terrible and I have so much anxiety about presenting because I don’t speak as well as I used to. But again, “I don’t look sick” so it is really hard.

Thank you again for reaching out. I feel better knowing you are lifting and being active.

1 Like
4

no problem :slight_smile: it is so isolating especially with a rare disease.I use to not talk about it because I thought people might perceive it as complaining but now I know that this is my reality and I face this every single day.Often people will ask “how are you” im not gonna tell them im fine that’s a fib!!!.Don’t worry I have had friends leave my life because they don’t understand that sometimes I have to cancel plans at the last minute and I don’t do it to be rude I just have an extremely unpredictable body :smile:.I have heard there are some people that can still hold down employment but in saying that chiari is not 1 size fits all I know myself there is no way I am going back to full time work straight away after my 12 months recovery time is up.I tried study face to face butttttt it didn’t work out even 1 day a fortnight I found a lot of my fine motor skills have suffered and I forget things super easy and end up half way through a conversation and go completely blank.And it sounds crazy!!! but I will say random words that have no relation to the particular topic or conversation that is happening at the time.For example we would talk about the weather and I would randomly say “yehhhhh I love chocolate”.Like totally unrelated.Weights definetly help with recovery I was determined that chiari would not take that from me.It helped me get back on track but im finding fatigue sets in a lot quicker nowdays and I have to pick very wisely were I use my energy I find that shopping centres are a nightmare for chiari patients as my ears have tettinitus and I have sensory overload and for some weird reason I cant do hugs My doc said that its hypersensitive nerves it feels like tight clothes on sunburn I was not! expecting that post op.Also emotionally its draining.My nurse said there is a massive physcological part you go through with this.For example grieving the life you had before the disease all I can say for newbies is that it doesn’t get any easier you just get better at coping and living with it each day and be kind to yourself I mean really!!! be kind.I love yoga!!! I use to do I think??? hot yoga the heated room one omg!!! so much fun!!!.I have always wanted to try instructing yoga haha!! I can easily run a group circuit but I always figured it would be incredibly challenging instructing whilst having your body all twisted :smile:.

1 Like
5

Wow!! You both I wish I could be that active but my spina bifida and chiari have stopped me from a lot of things. I had surgery for chiari in October and have been going crazy since then just hoping everything turns out during each and every “next appointment”…while so far they have not said yes you need another surgery the neurosurgeon did tell me I will most likely need yet another which would be the shunt because the fluid is not going down.

1 Like
6

Oh I am very blessed to be able to attempt to stay active.I hope things get easier for you that is rough having chiari and spinabifida!.I was decompressed in November.Im so glad I did cause it has improved my quality of life and now after some of my symptoms are relieved im more grateful than ever! to even be alive!!!.I to just take each day as it comes and appreciate the days where I feel like superwomen but at the same time when my chiari flares up I cut myself some slack and acknowledge that im human.That must be a difficult struggle for you to go through everyday your a champion to even get out of bed!! I have chiari but having spinabifida as well <3.Its unfortunate that chiari varies so much from person to person I really struggled for ages thinking “Am I doing enough” or "I should be feeling better by now because that person with chiari was better at 3 months post op so I should be to’’.We are all so individual and I think that all you can do is your best and that is enough.

1 Like
7

my nuerosurgion had to put in a lumbar drain cause my brain was leaking spinal fluid.It really hurt :confused: I was close to needing a shunt but apparently the fluid is flowing normal now.Hopefully it stays that way cause I really!!! don’t wanna do brain surgery so close to my first one.Let me know how your shunt goes and if you have any tips or tricks in case I need have to get one :smile: I cant seem to get my head around the tube and whether or not its comfortable

8

Will do when it comes down to it…I am dreading having to have the shunt. I totally have been doing the same as far as well that person is better so maybe just giving myself time but after the tests and Dr’s telling me they think in time I will need another surgery I’m almost at the point of well what if this next surgery doesn’t help? Will I have to have surgery after surgery after surgery…I try to be positive though and am hoping for the best.

1 Like
9

Sometimes I guess we just have to say surgery after surgery after surgery that it just freaking sucks!.And a lot of people don’t know that these diseases don’t get cured they just get managed.I tried to be positive because I thought that’s everyone wanted to hear I was cured!.I got real frustrated and angry but that’s good though cause its part of the grieving process I don’t pretend im well cause its not the truth.But I progress a little bit more each day and that is enough for me.Im hoping! this will be my last op but I know it wont be and im dreading the day the shocks happen again.Hope the docs take great care of you!.

1 Like
10

thanks hope all goes well for you.

2 Likes