Decompression surgery in January 2018

Brain and nerves
1

I just wrote something really long out and my phone disconnected from WiFi and now I have to start over!

Ok so I had decompression surgery on 1st january 2018. 

I am still getting severe head pain, mostly from laughing and coughing. And more than often from doing nothing more than simply waking up in the morning, which is bizarre to me. 

The most alarming thing I have noticed recently is that I am EXHAUSTED. I just started a new job (after 4 months off from recovering) and I do 8 hour days. I literally come home and collapse into bed. I am mentally drained and my eyes pretty much shut as soon as my head hits the pillow. My body has zero energy and my mind just wants to shut down. 

The second thing I have noticed is memory loss. This one is a little more alarming for me as I’m only 29 and I have an important job. It’s happened a few times now and I’ve only really noticed it when it was something quite scary... I was walking to work and suddenly stopped. My mind went blank. I couldn’t remember where I was or where I was going. It took me a good minute before I regained memory. 

Thirdly is clumsiness. This one is hard to differentiate from my normal clumsiness but I definitely don’t usually fall over all the time, or have difficulty holding a pen or unbuttoning my blouses. This is another thing I have noticed over the passed few months. 

I’m honesty just hoping this message resonates with someone on here. You don’t have to reply with a long message but just simply an acknowledgment that someone has read mine. I’m feeling so alone, anxious, scared. 

My biggest fear is that the surgery hasn’t worked. I won’t get better, and I might get worse. 

Thank you for reading and look after your head! X

2

I empathise with you totally cant imagine waking up and feeling like that on a daily basis and myself having a daughter who everyday wakes up feeling ill and coping with epilepsy her life has changed so dramatically in 3 years the more i hear from people like your self thats had decompression surgery makes me think is it the right route to go down many thanks for your reply I would like to think that with research there can be a cure for those who suffer we can only hope

3

Hi Luna,

I completely understand what you're going through. I also get the pain when laughing and coughing etc, my balance is terrible despite seeing a Neuro dedicated physiotherapist... And I still have a lot of neck pain, and pain running down through my jaw, shoulder and arm on the right side. I have started drawing and doing art stuff, but it's very frustrating because my arm twitches and my pen is really unsteady in my hand sometimes. I'm always covering up mistakes or starting again lol

I was decompressed a year ago tomorrow! My Neurosurgeon signed me off after a 6 week review, and told me that everything is now correct anatomically but that the real recovery time is 2 years. It's not a linear recovery and will sometimes feel like one step forwards, 2 steps backwards! After 2 years, what symptoms you are left with, you are unlikely to recover further from and will most likely be the result of permanent nerve damage! If things get worse, then I am to go back to him, but apart from that I am on my own and just have to get on with!

He also mentioned that the reason I still had a constant headache, as well as the increased pain when sneezing/laughing/coughing etc is because you brain needs time to adjust to the new CSF flow, where it has been compromised for so long. For some of us, that can take a really long time to correct itself!

I am always tired too... Even though I'm not currently working! It's ridiculous! I feel so doubtful sometimes, that in a years time, I will suddenly feel OK, but I guess I just have to give it time. I will turn 40 next year though and I don't want to start 40s like this!

I really understand how you feel, and I'm in the same position myself. I'm so sorry you're going through this too! Are you a member of any of the Facebook groups? They can be a great place for support! There are lots of people like us who are still having symptoms.

One thing I would suggest is supplementing with vitamin B12. There are studies that show people with Chiari don't absorb vitamins and minerals very well. Apparently the vagus nerve is compressed, which in turn affects digestion. Look up the symptoms of vitamin B12 deficiency... It's also another explanation for your symptoms! I had quite a severe deficiency a few years back and did exactly what you described. I got lost in the town I lived in for 5 years, and couldn't remember where I lived or how to get there! I actually ended up needing B12 injections from the doctor for a while, which helped massively with the things you've described! It could really help with your recovery.

I'm sorry I don't really have any advice etc but just wanted you to know you're not alone! Sorry for the long reply lol x

P. S I'm too tired to edit it, so I'm sorry for any mistakes. I hope it's readable!

4

Hi Luna,

I had my surgery last Jan 17 2017. I have many of the same issues that you have. The first year you must remember is healing so u have to be a  little bit more patient. And please stop worrying and causing yourself stress because us Chiari patients do not handle stress well and it has a definite effect on your mind and cognitive states.

Now the EXHAUSTED feeling is normal while your healing, but you may need to check your levels to be sure you are not anemic. Exhaustion is a direct symptom of Anemia. Be sure you are up on your B vitamins (b-12 & b3). I am 2 yrs out and I still get sleepy at 3pm, my nap time when I was still recovering.

5

Now the memory loss is commmon. I unfoirtunely went thru a long period where i thought i was going crazy because my short term memory was so bad. I had another brain scan  and found i have MS. which directly effect my short term memory. BUT......i am so much better now i feel and look brand new. I have implemented my self on vitamin immuneotherapy. I have been studing this for a while and i have a lot of knowledge on the Chiari issue and neurological issues. Also balance and coordination will come, but for me it is a struggle because of my MS.

Also brain foggy days, is also normal and getting the right amount of sleep will actually counter act that.

BUT you are healing now, so dont worry and also remember to pray daily.

Soooooooo here's what you'll do.

1- start vitamin's daily B-12, B-7 & B-3, b7 Nacin this will improve your mempry and consintration ability as well as help with the vertigo (room spinning)., and my skin is Flawless since i started the regimens. B3- Biotin is essential (especially for my MS). I tell you i and having some vision problems due to surgery and MS and i started taking Biotin on a sunday and by wendsday i could see clearly with out glasses.

so there is hope for us after all.

By next year you will be completely head ache free.

if you have any more ?'s just reply ....

Hope this helps......

Leneta

6

Hi Susan,

Thanks for replying. Yes it's very frustrating waking up with head pain, especially if i've had a long, good nights sleep, it doesn't seem right to then wake up with pain. My uncle sadly passed away with epilepsy so i empathise with how difficult having it is. I hope your daughter is able to manage it and live with it the best that she can. X

7

Hi Kerenza,

Thanks for taking the time to send such an in depth message to me!

Isn't it strange to get pain whilst laughing? I was at my friends hen-do recently and was having a great time until i burst out laughing, suddenly this searing shock of pain entered my head and i had to stop myself immediately from laughing - its ridiculous! I hadn't actually noticed much neck pain until I had to move something quite heavy at work, which required me to look up, it was only during that i realised my neck was becoming very sore around the area I had surgery.

I'm sorry about the twitching! must be very frustrating when trying to continue with your art. What sort of things do you draw? I bet it helps to relax you though smile I have yet to take up a hobby as I've been a little anxious about starting to be active again...

Unfortunately I don't have Facebook anymore! I quit it quite a few years ago now but thank you for letting me know.

That's interesting about the vitamin B12 supplement. I've never heard of that helping with Chiari before, i will definitely be buying some. I'll try anything if it helps me. X

 

8

Hello Leneta,

Thank you for your message.

The memory loss is certainly new to me. I didn't realise it was so common until I searched through the Chiari forums on here and noticed people mentioning it over and over again. It's quite scary to think that it's something i'll just have to deal with. 

Thank you for your recommendations on which vitamins to take to help me - I must admit i haven't looked into this before but it seems a few people have benefited from taking them. 

Thank you also for your words of encouragement, I really do hope I am headache free next year smile I hope your health improves also and that your vision and MS are more manageable in the near future.. X

9

I had decompression will be a year on 8th of september. I still wake up with pains in my head i cant rest my head on my right shoulder i cant lie on my tummy and lift head up to watch tv. My memory is terrible i thot it was just normal and im on 31 i cant even play with my kids in soft play as always end up with banging sore heads. Im on daily meducation which is frustrating i take small dizzy turns not sure if its the medication or the chiari. I no chiari never goes away the operation is ment to prevent symptoms getting worse and hopefuly not getting any more but my ns told me my now head aches have nothing to do with my chiari and i have always been a healthy person before getting diagnosed.

10

Hello,

headaches are normal, but you must remember that you have suffered some brain damage from the pressure that was on ur brain.

The only medication i take is Neproxen 500 mg and it stops the headaches, ibprofien does not help.

Ur short term memory is effected from the pressure that was there and for myself i went back in Feb this yr and my memory issue is because i now have develpped MS which is a vitamin D deficency.

But there is help you must start healing your body with Immune therapy. addressing your issues with vitamin regiments.

Ur memory will strart to come back immeiately once you start the b vitamins.

Niacin B7 - improves memory and restores your concentration too.

Biotin B3- essenital vitamin needed - i was having trouble with blurred vision and i started bitotin on a sunday and i 3 days i could see clearly.  Also be sure you are sleeping with your head elevated to help your neck & shoulder pain (i have it as well).

I know its frustrating but just take a deep breath because Anxiety is also a side effect from the presure that was on the brain. Also you will not notice the healing unti after the 1st yr.

but please take my advise just a few months ago i was filing for disablity because of my cognitive state being so delayed. but these 2 vitamins will change ur life.

11

Ibtryed naproxen at tge start and it didnt help me at all i use tramadol for the headaches and gabapentine for tge muscle damage or something in my neck im back again for my second follow up in oct so wel see what they say then i might try the vitamins see if they help aswell thanks

12

Im sick of just not feeling normal now

13

Me too Leanne sad

14

don't rely on medication, surgery is traumatic and you have to nurse your body back to health. B vitamins is the keep especially for healing. Also I take Turmeric w/ ginger powder 500 mg a day, stops pain within that week. I gave my mom the turmeric she has osteoporosis in pain constantly, she has not taken any pain med's in 2 weeks. I will change your life ladies being pain free. It also helps with my MS flare ups. And my skin & nails are flawless...lol

15

don't rely on medication, surgery is traumatic and you have to nurse your body back to health. B vitamins is the keep especially for healing. Also I take Turmeric w/ ginger powder 500 mg a day, stops pain within that week. I gave my mom the turmeric she has osteoporosis in pain constantly, she has not taken any pain med's in 2 weeks. I will change your life ladies being pain free. It also helps with my MS flare ups. And my skin & nails are flawless...lol

16

don't rely on medication, surgery is traumatic and you have to nurse your body back to health. B vitamins is the keep especially for healing. Also I take Turmeric w/ ginger powder 500 mg a day, stops pain within that week. I gave my mom the turmeric she has osteoporosis in pain constantly, she has not taken any pain med's in 2 weeks. I will change your life ladies being pain free. It also helps with my MS flare ups. And my skin & nails are flawless...lol

17

I agree about just relying on medication. I did this for a while and i suppose to some extent i still do.. especially when i get the head pain, my instinct is to reach for the pack of codeine because i know it will get rid of that searing pain at the back of my head. I have just started other things though such as making sure i drink plenty of water (I didn't really before, oops!) gentle exercise, plenty of sleep and i just ordered some vitamin B12. 

18

Every one who commented on this saying how important it is to take certain vitamin this is something I will have to try with my daughter it May help all disscusions realy interesting need more research into chiari thank you all for your advice and sharing how individuals deal with this

19

Hi Susan,

I agree, I keep seeing vitamins come up over and over again. It must be doing something! funny how doctors never really mention it though? I'm starting mine today. X

20

Please let me no if the vitamins make a difference