What should I realistically expect after surgery

[NanaRule]

I was diagnosed 4-21-16 with Severe Type 1 Chiari and will have surgery when all pre-op tests (EKG, X-ray, bloodwork and a complete spine MRI) are done.  I also have DDD and Spinal Stenosis and applied for disability before my Chiari diagnosis.  I am 53 yr old female and cannot express my thanks enough for this community.  I was so relieved to know I was truly not alone and have learned a lot but want to know what specifically to prepare for as far as surgery recovery.  What will I realistically be able to do a week after surgery, the following week and so on.  I don't get much done anymore as it is but are there certain things I can try to get done before that will make things easier?  Thanks

[Initwithyou]

Your diagnosis of "severe" Chiari sound very similar to my diagnosis 2 years ago.  Everyone keeps saying everyone is different and that is true.  At 3 weeks post op my neck was still stiff (I was continued to be on a lot of medications) and I had a lot of help up until then from my husband and mother.  Slowly I increased my activity and by 6 weeks was doing some light housekeeping and increasing my walking distance.  I had to return to work by 12 weeks or lose my job needing to lift greater than 50 pounds multiple times during a test to return to work.  I work in healthcare and must be able to lift people over 200 pounds at times by myself.  I was able to return on time but it was very difficult and fatiguing.  Each month got better and I was able to greatly reduce medications that kept me going during the first year post op to minimal amounts.  My husband was very instrumental in helping me during the first couple of months returning to work. I slept in a recliner (borrowed an electric lift chair) for awhile.  That was for about 3 weeks.  I do not have cervical spine involvement.
You will have to let us know if you were able to get disability.  Does your other diagnosis qualify you for it?  I ask because I have seen other posts that report Chiari does not qualify.  Best wishes to you for good results.  Many people do very well post operative.  I hope you get some relief.  Do you have a surgery date yet?

[Getupgetgoing]

I wasn't able to bend my head down after surgery so put all bathroom and cooking supplies up out of bottom drawers and at eye level. I needed a shower chair because I was too weak too stand the entire time and I used travel sized containers for shampoo/soap because I'd drop full sized bottles.  Lots of sweat pants and I liked wide neck t-shirts. Pillows-I sewed two travel sized pillows at the top and bottom thus leaving a small opening for incision to nestle in. I did buy two zipperhead pillows but still prefer the cheap old sewed together travel pillows. Raised the head of my bed with a few boards between matress and box spring and sleep with a pillow under my knees. Used heating pad everyday for weeks. I left the hospital with a walker and still use it. Grocery shopping post op is super hard so stock up on frozen food and I couldn't open a water bottle post op but I found there's gadgets to help with that. I couldn't carry a laundry basket or heavy stuff for weeks . Stairs were challenging so moved all necessity items to ground level. You won't be driving for awhile and your head hurts bad and it takes time to get the range of motion back.  I also recommend stool softeners right from the get go if you're prone to constipation. Good luck with surgery and have patience with your bodies limitations post surgery. I was weak, slow and tired. Not everyone bounces right back. I'm 43 and 12 weeks post surgery and am just finally getting some strength and endurance back.

[NanaRule]

thanks...I am 53 and this is what I was looking for and truly appreciate the time it took for your response!  Hope you are having a good day!!

[selmaS]

  Hi Amber and welcome to the Chiari forum.

So glad to hear your leak has sealed....I know how hard it can be to lay flat for a week due to a CSF leak.no fun and very painful.

Sending prayers you continue to have a smooth recovery going forward.

[AmberS955]

I thought I was doing good one week post op but then I felt like something wasn't right. Then the Headaches which they call posterial headaches (fine when laying not when standing) are caused from leaking spinal fluid flowing freely in your head. I had a major one two weeks post op and leaking clear fluid constantly from my incision. I was put back in by my surgeon and a lumbar drain was placed in my back for 7 days I had to lay flat in a hospital bed and drain the fluid away from my brain so that the patch itself could seal on its own. First day home, so far so good. It will be different for everyone but don't expect to be able to do too much for at least 4 weeks in and That is with no complications. Good luck!!

[NanaRule]

Thanks Amber...I certainly hope today is better for you and glad you are home.

[selmaS]

  Well again since we are all different your post op experience may be different from mine but I would say you will need help for at least 2 weeks during the day.....

The symptoms of Chiari are similar if not the same as MS so it is often thought we have MS.....most Drs will rule out all related and non related conditions to be sure.

Your Dr seems to be going on the length of herniation in calling it severe....to me severe is someone with drop attacks or breathing  issues.....some just look at the length of herniation.

[NanaRule]

Thanks for the feedback!

[selmaS]

  Hi Nana and welcome to the Chiari forum.

May I ask what your Drs mean by severe Chiari I?

What symptoms did/do you have and what is the reason for surgery? Do you have a CSF obstruction and or any related conditions?

It is not easy to tell you what to expect bcuz we ALL may have different related and non related conditions which can affect how we feel and heal post op.

How has your Chiari affected to this point....do you have a syrinx, drop attacks, vision issues...????

I had surgery 8 yrs ago this May 28th....and I am doing better then ever,,,yes I still have some issues and symptoms BUT I also have related conditions so that is to be expected.....so not knowing what all is going on with you....I am not sure how to answer your question.

[NanaRule]

My NS walked into the exam room and after introductions said you have severe chiari Type 1 and there is absolutely no doubt that you need surgery to stop things from getting worse.  My MRI reads as follows:  Findings consistent with Chiari 1 malformation with 16mm of cerebellar tonsillar ectopia without evidence of cervical cord syrinx or medullary kinking.   Dr Kumar has also requested a complete spine MRI to check for cysts on my spine.  My symptoms are as follows:  walking with cane but still no real help other than to keep me from falling because my legs just give at the knee or hip, pain in neck that will not go below a 7 most days, pain in mid to lower back that has taken up permanent residence at a 5, inability to focus for any length of time, blurred vision, muscle spasms/twitching ( I call it chihuahua syndrome because they are all over the place), extreme fatigue but unable to sleep, difficulty swallowing and I'm sure you get the pic by now.  I had a lumbar spine injury (my lumbar curve decided it wanted to go straight) in 96 and was diagnosed with Fibro, then in 2013 I was rear ended in a car accident and everything went downhill fast from there.  My diagnosis from pain doctor was DDD, Spinal Stenosis and a few other that I have forgotten (memory is absoutely horrible).  They chose to treat with pain pills and every muscle relaxer made with no success so one of the pain treatment doctors ordered me to get an MRI and casually stated I may have MS and here I am trying to learn more about what is really going on. I am getting more stressed about the surgery and recovery even though I know stress tends to make symptoms worse.  The reason I ask what to expect after surgery is because I will have very limited help after surgery so need to prepare the best I can...thank you so much for your time and any advice you may have for me.