Chiari Online Support Group

How things have changed since surgery 1 year ago

#1

Hi. I’m Kristine, and I’m 27. You probably don’t know me. I was active in this forum in the months leading up to my diagnosis and eventually surgery. This foum really was a place of support. :slight_smile:

Today I’m back, because it’s a day of celebration. My second birthday. And I wanted to share my experience with anyone who is going through the uncertainty, fear, disbelief, anger, pain that I went through. This is a long one, so bare with me.

I want to tell you that no matter how bad things might seem, it can get better for you. :slight_smile: Before I kew I would have the surgery, I was getting worse and worse so fast, that I thought soon I’d be tied to my bed for good. That’s how fatigued I was. All the headaches and pain aside, I thought I’d die in 5 - 10 years, if I don’t pass out in the middle of a street and get hit by a car. I really felt I was as functional as a decorative pillow.

It was hard. The hardest thing I have ever went through. But I didn’t give up, because that’s not what I do.

Basically, I had lived for ~ 9 years thinking I’m just lazy. I thought everyone felt just like me, and I was just weak and had to push through it.
Feeling too tired to move? You have to go out more! You have to work out more! You have to do more! Can’t breathe, especially when you lay down? Don’t be stupid! You need to see a psyciatrist! So I did.

I listened to everyone else but me until it got so bad, I had some kind of a paradigm shift.
Many years ago a neurologist had told me that some part of my brain has descended and it probably causes my fatigue, but thre’s nothing to be done about it. She made it look like it’s nothing special. But now, everything I had thought was true, didn’t make sense anymore. At last, I knew, in reality things were different. I didn’t have the name of the diagnosis she had made ~7 years ago. I just remembered how she described it. So I started searching online. I came across a Chiari Malformation. Reading about it, it was like someone had written what my presonal symptoms were. Luckily I had the MRI images and I could comfirm, I’d found the right diagnosis. I could start my research into it and plan on what steps to take to confirm(or deny) it with the right doctor. It wasn’t that simple of corse, but you get the gist.

When I finally got to the surgery, exactly one year ago, I felt so happy! I had read all the horror stories of pain and complications, but I didn’t care. This was the day that opened the doors to a better future. I was truly happy! :slight_smile: I din’t get my hopes up, because I understoot there was a chance I wouldn’t get better, but doing something about it was enough. It was the happiest day of my life. :slight_smile:

Today things are much better than I dared to imagine. So I think I’m qualified to tell you what to do and how to think :smile: if you are somewhere in your Chiari surgery journey.

Things can get better, but in order for that to be possible, you need to create the right environment for that success to be inevitable. You don’t have to go and climb a mountain in a single day. If you are as tired as I was, everything you do will take time and it will be hard. But that doesn’t mean it’s not doable. Just take one step at a time. Do a research on Chiari, on other possible causes, surgery, its outcomes. Research the recovery process. Do not for a single second assume the surgery is a miracle cure. It will adjust your body to the defect. It will not be a portal to another “normal” life.

Don’t live in the “It’s not fair” mindset! Does the cerebellum care if it’s fair or not? Will your definition of fair cure you? No. It won’t. What will help you? The right attitude. Those thoughts and actions that will move you forward. Do not hold on to the things and thoughts that hold you back! If you want to get better, you will have to eliminate the habits and things that hurt you. For this, I highly recommend reading the book “7 Habits of Higly Effective People”.

If you get the surgery, you have to aknowledge the fact that you have to work hard to create the optimal environment for a successful recovery. You have to understand that your body and mind has been enduring a great deal of stress and pain for most likely at least a few years. You need time to recover from all of that. I know you may not have income because of this condition. I haven’t been able to work for ~ 2 years. Now I’m getting a disability benefit, which is 64 euros a month(roughly the same in dollars). My boyfriend has been working for both of us and rarely has a day off and we still can’t pay our bills. But I’m still taking time to recover properly. Why? Whell, what good will it do us If I mess this up? In the long run it’s better for both of us if we have less money now, but I increase my chances for the future.

My recovery was slow. 7 months in, and I still wasn’t sure I would get well enough to work one day. In the mean time I was studying. Very slowly, but still. 9 months in and with confidence I could say I’m much better than 2 months ago, but not good enough. In the worst case scenario I was much better than before the surgery. :slight_smile: Then around a month ago I startd treating my vitamin D deficiency (about which the NS warned me about) and things got so much better!
Then, I developed headache again(the usual meds didn’t help, it would go on for a week), pressure in the head and thought the good times were over. So I saw a neurologist and went on meds. And now, I have to say, I’ve gotten so good, I could work full time! :slight_smile:

I’m still studying. In January I applied for and got a Google scholarship for an Android Basics course. I already applied for another scolarship.:slight_smile:
With my new skills and the successful recovery, I’m on my way to a job I’ll love.

I hope my post didn’t seem too harsh. My intension was to point out that true success comes from the right actions and most important, fundamental values. Your personal values. Educate yourself and follow your beliefs, and you’ll be ok! :slight_smile:

Best wishes,
Kristine

9 Likes
#2

Thanks for a lovely post about your journey with Chiari and surgery. Many good insights to take to heart. Many good wishes on your continued recovery into your new normal.

#3

Thank you!:slight_smile:

#4

Thank you for sharing your experience. I am having surgery on Tuesday June 20 at MA General Hospital in Boston. I am very fortunate to have one of the best surgeons for Chiari decompression surgery. However I have received very little information as to what to expect immediately after the operation and the immediate days after my release from the hospital. I found your story very enlightening and this site in general to be extremely informative.
Thanks again for sharing your story.

#5

I made 2 posts on my post op period Good things!:slight_smile: and Slowly seeing improvements.

Good luck with your surgery! Be patient afterwards and don’t owerwhelm yourself! I think that is the key of a successful recovery. :slight_smile:

#6

Thanks for sharing… I think everyone’s results and recovery time varies. I had my surgery 3 years ago and I continue to look for any information that will help improve my quality of life. Grateful for today!

#7

Thank you for sharing wonderful things!

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#8

I have posted on my recovery experience here in these forums. I am almost 8 months post op. I am currently symptom free. I too saw a very well respected Chiari expert - Dr. Michelle Chowdhary at Univ. Of Wa. Nuerosurgeons. She has devoted the last 15 years to Chiari and is amazing. The recovery for me was brutal. I did have complications due to an allergic reaction to the anesthesia. Aside from that the pain is pretty incredible. It is like having the worst imaginable case of whiplash ever. My neck was crazy stiff for a long time. I found a wedge pillow super helpful. I alternated heat and ice, took in tons of water and stayed very hydrated, asked for and got extra meds for anti nausea as vomiting after surgery is a huge no no. I had lots of help at home and started walking little bits within 24 hour after surgery. I found that fluids, p - small manageable meals with extra protein, walking for short periods around the house and lots of resting and quiet helped. I didn’t strain, lift or do anything taxing for a month. I did’t even bend over to pick anything up. I was super cautious and careful. I really tried to listen to my body and not push things and follow my Dr’s recommendations. I started physical therapy at week 8 and highly recommend it if you can get it. Today I am back to running and this month I will have logged 100 miles on my feet by the time June is over. I started cross fit again and feel better than I have in several years.

4 Likes
#9

Thank you for sharing this wonderful story!

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#10

So happy for you and I do agree with you. I am already checking into what I need to do if I can’t return to my job. If I get stressed my symptoms get worse. My surgery is scheduled for Dec. 4th. I am scared but I also know I can’t live like this any more. I can’t function. I went into the shunt surgery with the idea I would be better but I wasn’t. My headaches are slightly better but all the other symptoms are still there. I want to return to work but my job requires that I am awake sitting at a desk for days without much sleep. So I am worried about not being able to do this job again. I am a widower so it will be hard but if I can just feel a little normal again it will all have been worth it. I am going into this with the idea that it will be hard but I have to feel even a little better from the surgery at some point. I am not expecting miracles but some relief.

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#11

I am checking in - Did you have surgery on the 4th? I hope that your recovery goes well and you find some relief in the symptoms. Rest and let your body heal.

#12

Yes, Thank you for asking! I am just a week out from surgery n this is the first I have been able to get my head together for more than a few minutes at a time. I have been sleeping mostly because pain meds suck due to opioid addicts. Which I have always felt bad for anyone with an addiction. This is slowly changing my opinion on that. I have taken opioids over the years for different surgeries n nevet have become addicted. Sadly because others have this issue, I being made to suffer the pain through this surgery that I shouldn’t have to suffer. That is a whole other story. I cope with the pain by sleeping. I was wondering if this is normal for recovery? I walk to the bathroom n kitchen numerous times a day. I am sitting up more now. It sounds funny but I have energy but my head doesn’t match the way my body feels. So I am just taking my head into consideration right now. The only difference I see since surgery is the numbness, tingling, pain n coldness in my arms, hands, feet n legs. I know it’s early yet. I still have the noise in my ears, alot less dizzy, I certainly still have headaches but it’s too early for this one. Anybody have any stories on there first 2 weeks post surgery?

#13

I hope you are starting to feel better. My Surgeon warned me the pain would be super intense because the surgery gives a person the worst case of Whiplash one could ever imagine. Sleep if you need it. It is a healing mechanism. Drink lots of water, walk as much in little bits as you can, eat nourishingly. I took Duladid for pain and it helped a lot. I can’t take Oxy or another codone family drug. I was on a strict regimen with pain meds, steroids and the doseage gradually weaned me off of both. I found alternating ice and heat, using a foam wedge pillow and a neck support pillow super helpful as well.

#14

The neck pain is not too bad now I have shoulder pain down into the side of my right bicept that is the worst. I have to call my dictors office tomorrow cause it is no better. They will probably need to do a CT scan he said. They were giving me Lyrica for that n it doesn’t help. My pain meds will soon be gone so I need to call them n get the ball rolling on this issue cause I have to be back to work in March. Thank you for your help!!

#15

My 37 yr.old daughter just got diagnosed, I’m scared beyond words! Your testimony has given me hope…glad you are better…God bless

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#16

Thank you, @Deeder! Although I still have problems, I am almost done with my online studies(which for the most part I started after the surgery), and will soon be looking for a job - something I thought was lost forever. Recovery from a severe chiari condition is possible!:slight_smile: Never give up hope. All the best to your daughter!

PS. A huge help in developng a close to normal day to day routine and not burning out constantly, was to learn how to listen to my body and not push it over limits.

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#17

My 12 yrs old daughter was diagnosised with chiari malformation 1 and the cyst in her spine. She barely gets out of bed and has been taken out of school. A teacher comes to the house 2 times a week now. She is always in pain, her breathing is way to fast and pulse is irregular. She cries herself to sleep most nights and the pain meds dont always work. She has to lose a total of 20 lbs before they will do her surgery that they said she definitely needs. She is depressed. I am trying to be upbeat and positive bit today is hard for me. Last night I didn’t sleep because she was moaning all night and crying. I am at a lost on what to do. I want my baby to feel better…

#18

I hope your daughter is doing better. I can’t imagine how difficult all this is for a child and for you also.

#19

I have another surgery scheduled for March 5th (next week).

I’ve had a decompression surgery on 11/29/18, then had CSF leak (between sutures; like a faucet) which resulted in another surgery for REVISION on 1/3/19. Then developed a huge pseudomeningiocele and was convinced a VP shunt would take care of it. So I had shunt placed 1/31/19.

I’m in much worse condition than I started. I had headaches with straining (tussive headaches), constant heaviness of head/neck, and fatigue. Now after the surgeries, I have constant headaches, tussive headaches, nausea, fever, chills and extreme fatigue.

My surgeries were done with a neurosurgeon who now I know is not a chiari expert (has barely done any chiari surgeries). I had only gone to him to review my MRIs as he was available the soonest but when I was there he said I need to be in CCU immediately due to severity of my condition (per MRI images). I got scared, got admitted and had surgery. I had an appointment with a chiari expert a few days later but couldn’t go there as apparently I needed to be in CCU with neurochecks every hour.

My surgery next week is with Dr Frim who’s considered an expert at these surgeries and I’m praying for better results.

I would love to hear how you all are recovering by now.

#20

She has her good days and bad days. She has lost 13lbs and still has 7 lbs to go before they will do her decompression surgery. Everyday is a challenge. Her home bound teacher told me that she may fail the 7th grade because she is behind in her math. We are trying to get caught up but that is difficult with everything else going on with her. Thank you for asking about her and please keep us in ur prayers.

1 Like