After Surgery

Question

I was recently diagnosed with Chiari 1 Malformation (I was diagnosed 1 month ago but i've had this severe debilitating headache since Nov. 21st; I had to drop out of school and I have to call out or work or leave work early a lot because the pain gets so intense in my head) anyway I've been reading about the surgery and it is something that I am probably going to need (I see a NS at the end of this month for a second opinion and everything) but I see a lot of talk about the recovery period taking up to 6 months...but people have also said the surgery is a minor surgery so I'm scared of what i'll be like directly after the surgery if it takes a whole 6 months to recover. 

Is anyone who has had the surgery willing to tell me what the recovery was like? I'm scared about all this because i'm only 22 and I don't know what my life will be like directly after the surgery

ljturner5366 · Accepted Answer

In my case, I am in pain, and it is in the neck. I knew it would hurt because of the incision and the movement of the muscle. So yes, that hurts, but I kind of have it in a category in my mind as being temporary and I can tolerate it.

In terms of symptom relief, to describe how it feels is almost impossible. Even though the pain I feel in my neck is as bad and sometimes worse than my head used to hurt, it isn't bothering me the way the headaches did. No foggy brain anymore, everything seems clearer to me. That sense of pressure and fullness on the left side of my face and neck is completely gone. 

For me, deciding to have surgery was hard because I didn't have a syrinx and I think I had been minimizing my symptoms for years. The time in between the first appointment with the neurosurgeon and the one where I decided to go ahead I spent paying close attention to how I felt every day. So by the time I had to decide, I believed it would be worth going ahead. The neurosurgeon spent plenty of time showing me how he was interpreting my MRI and that there was no doubt that the CSF flow was blocked. 

In the surgery, when the NS opened the skull my herniation was at C2. By removing C1 and shaving C2, the ultrasound showed that the pressure went away as he described it "dramatically". This meant no opening of the dura. I had so hoped that would be the case. It was the first thing I remember sking when they woke me up. 

I was in a neuro-step down ICU for one night, a private room for the second night, and home the next day. I decided to go home because once I was out of the step down the wait times for pain meds went up and I was completely stable in my vital signs.  It was the best decision for me, I have been sleeping so well and my cats have been keeping me company all day!

Sorry to go on and on...I think it's important that you hear from people who have had the surgery, I know it helped me.

Jtay2630 · Answer

I know it was years since you posted this and i'm sorry that it took me so long to reply. I've had a lot of ups and downs the past few years lol but I did see this before surgery and although it was different for me, there was no doubt in my mind to have the surgery but that was because i couldn't go a single day without begging someone to shoot my in the head just to stop the pain i was in (I am not or will i ever be suicidal mind you) and after every surgery i've had since i have felt so much better directly after. and sometimes even for a few months i was okay which was amazing. Unfortunately though i'm always brought back to that place of pain and misery because my case ended up being A LOT more complicated than just a Chiari decompression surgery. but thank you for the reply. It did help me feel better about it being so young.

Jtay2630 · Answer

I know this surgery isn't a cure just a treatment but anything that helps would be better. If I do anything (even throwing a ball with my puppy) i'm exhausted and in the worst pain ever I have neuropathy now as of a couple days ago I don't even feel like myself anymore it's terrible. Most of you i'm sure know how i'm feeling. Everyone else doesn't believe me not even a lot of doctors, they think i'm just making up the symptoms even though the MRI shows I have chiari malformation

linnielou232 · Answer

As every one else stated above.  Every one is different in healing so you can't go by other's as far as healing.  I will share a little of my experience.  I had to have 4 surgeries in all due to complication's due to my own body. CSF leak's.  So every body's body responds so differently.  I agree with megthp.  Even though my journey was one of the long road's I had to go on.  I'm thankful I had the surgery.  I can think straight, do some thing's I enjoy which I couldn't do before surgery, just in different way's.  I also want to say.  Once you have Chairi you will alway's have it.  Having surgery isn't a cure it only slow's down the progession, so having Chairi with or without surgery is life altering.  Sorry to say, but it is.  I hope you find the right answer's that work for you.  It's hard to live in pain every day, but it does get better.

megthp · Answer

I'm 3 weeks post-op.  I had a small complication that seems to be clearing up on so I'm not sure how typical my recovery has been so far, but I think everyone is a little different so thought I'd share.

For the surgery, there's definitely trauma to your neck muscles so this is one of the primary things that hurts after, along with headaches.  I start physical therapy tomorrow so I'm not sure what's in store there, but they have me scheduled for 2 appointments per week for 8 weeks (and mentioned we may be able to cancel the last few depending on how I'm doing).

I can agree with what's been said above - recovery isn't necessarily fun, but it isn't as bad as I thought it would be either, and I can compartmentalize it because its temporary.  Even if for some people recovery is really slow, its still progress, and if anything was progressing for me pre-surgery, it was my symptoms progressively getting worse...

Also, I can tell you that even with the complications I've had so far, I'd definitely do the surgery again in a heartbeat.  I don't think its like this for everyone, but I felt an immediate difference when I woke up in ICU.  My brain just felt clearer than it had in years.  The only analogy I can think of is if you're really really out of shape for a long time, then instantly your body is back in shape.  It just feels better and works better than it has in a long time - that's what my brain feels like after surgery.  Pre-surgery, my main symptoms were chronic dizziness, fatigue, headaches and ears ringing.  The dizziness is gone, as is the ears ringing.  Fatigue and headaches - hard to tell what is fatigue from having major surgery and what is from presurgery, and same with the headaches, but I have high hopes!  And I think I've had more fatigue and headaches than others due to the complication (aseptic meningitis - not the scary kind, and seems easy to treat).

Hope the info helps!  One thing I can tell you for sure is that this forum helps!!

Jtay2630 · Answer

No this helped me a lot. I'm not minimizing my symptoms but once I was diagnosed some of the symptoms i've just been ignoring for years suddenly made sense. Unfortunately it's my doctors that are minimizing my symptoms. I had some episode with my feet and hand and arm the other day where they were all numb and tingly and I had trouble feeling them and had trouble walking. Well turns out I developed neuropathy but the doctors I went to said it was temporary neuropathy caused by hyperventilation....well I still have the sensations and its 3 days in so I really don't think that is the case. It's just so frustrating dealing with people who either don't believe me or don't care about my situation and I think its doubling my headache because my headache and neck pain never entirely go away but it seems to get SO much worse when dealing with idiots :/

Jtay2630 · Answer

I know that my brain is 13 mm down but I don't know where it hits i'm seeing a specialist in NY on Feb.  23rd because I don't trust anyone around here after all the crap they've put me through and NY is the best. But you didn't have to have any kind of physical therapy or anything like that after the surgery or were you the same as you were before the surgery just in pain from the surgery?

ljturner5366 · Answer

Hi, I am a week and a half post op (surgery was 1/26) and I feel really good. I had a lot of good things going for me with the surgery; no syrinx or tetghered cord or any other doagnosis but Chiari. On the MRI it appeared that the herniation extended to C1, but it was really as far down as C2. I also didn't need a duraplasty.

I think recovery is on a spectrum and there are a lot of things that will impact how it goes for everyone. The main thing is to keep affirming to yourself that you will get the right treatment and stay strong throughout the experience.

Make sure you ask any questions you have and keep asking until you really understand what the best option will be for you. 

Best of luck!

selmaS · Answer

Hi and welcome to the Chiari forum.

 There is much u need to do and be tested for b4 u consider surgery, which is not minor surgery, it is major surgery and can take more then 6 months to recover...we are all different, so u have to look at u, how u normally heal..fast or slow to know how ur scar will heal, if u r considered a surgical candidate, or if u heal slowly...

 The u have to keep in mind that is outwardly that is healed, the part that can be seen....the nerves can take up to a yr to heal....

  Make sure the NS u see is a true chiari specialist...and that u r checked for related conditions as it can affect how u feel and heal.

    "selma"