I was told that this surgery would help me but had my surgery in October 2011. Been told that I should not be still in pain in but I am. Still going dizzy, headaches over my left eye and ear ache, being sick most days can not eat as don't feel like it. I was hopeing to be back at university by know as I want to a nurse but at the moment in time am not sure if I will get back to doing it. Even don't feel safe cooking or looking after my boys and that is a killer
Hi Roxanne. I had my surgery Aug. 22, 2011 and I'm still not any where near better. I too still get dizzy, headaches (not as intense, that is a little better) and have temple pain. I also still have cerebral spinal pressure. I had a csf leak and now have a fluid buildup (pseudo menningocele). Everyone is different in their recovery. Some of us do really well and bounce back quicker than others. Have you been in touch with your NS & Neurologist? Maybe ask them to do a repeat brain and cervical spine MRI to check and make sure everything is healing ok.
Christine :)
I'm sorry you feel so bad :\
Where did you get your surgery done? Definitely tell your doctor, I'm sure they'll want a new MRI.
i have had a mri they say that it is all healing like it should be. am not sure if am ment to be in this much pain and feeling so ill. mad my surgery was done in sheffield. i have only seen a neurologist dose not want to see me for anouther 6m i feel a bit lost
Hi Roxanne,
My decompression & C1 thru C6 Laminetomies surgery was on 9/26/2005. I have a little different situation than most. We never found my CM until my verterbrae were actually being pushed out of my spinal column & only 2% of spinal fluid was getting to my brain. My cerebellum had dropped past C-5. My NS called me on my cell phone while I was driving & told me to pull over & then explained if I didn't get to Pittsburgh ASAP I would become a quadripledgic. My symptoms are much worse after my surgery. I am in constant pain & having a problem finding meds that won't make me crazy but still help. Everyday is a challenge. To make it worse I can't look down when I walk and fall a lot. I received a concussion & have post concussion syndrome, that causes horrendous headaches plus have pressure headaches so bad I feel like my head will explode & have problems swallowing & that's just the major symptoms. Each day is different.
I have a friend that had decompression surgery & runs marathons. He had a blood clot & lost sight in one eye, but doesn't have any other lingering symptoms.
This illness, disease, malformation, congential defect....whatever you want to call it has more symptoms than any other diagnosis I have studied. It also has just as many post op symptoms for most. I am sorry you are still experiencing problems. I was told my pain was due to the length of my surgery. My head and neck were open for 16 hours , thus stretching the nerves. Maybe your nerves got stretched. If any other discussion friend reads this, please let me know if you have heard anything about the length of surgery compared to post op symptoms. We learn more from eachother's experiences than from the "experts."
I hope something I have said helps you. Being like this is harder than anything I could ever imagine. I try and get through one day at a time & remember I have a wonderful famly that loves me. Remember your boys need & love you. Test your limitations and challenge them daily. Before you know it you will be cooking and taking care of your family , but it's ok to ask for help. Your surgery wasn't that long ago. It takes 18 months for the bones to heal. Allow yourself time to heal. We will all be here for you. You are not alone. We understand !!
Praying for you,
Tracy Z.
thanks for your message, sounds like you have been thought a lot.. where do you find the strenth to keep going???
i was told that if i did not have the op the i would die if i did not have surgery because i had a 22mm tonsillar descent and cleae chari 1 melformation with syringomyelia which is very extensive and rangs from c-3- t12. After my op the surgen told me that it was worse then it look on my mri scan, my op was 7 hours. Everyday is a challenge the more i do the more pain am in. this illness as taken over my life and it seems te more i fight it the more it comes back. i was not told that it could take this long to heal a bit.
Hi Roxanne,
It took many mths for me to feel just ok...but progress did come..hang in there..your body has been through a lot.
How has this week been for you?? Keep us posted.
Peace,
Lori
am not should what is going off... this week as been one of my bettter weeks! only been sick a hand full of times, dizziness. just sleeped a lot... got my appointment on the 19th march with a neurology doc so i am hopping to get more answres then??? as i was hopping to be back at uni in sep!!!
I’m sorry to hear you’re still in pain! I feel for you…I had my surgery in 2002. I ended up having to quit my job, because it took me a year to get back to “normal”. (whatever normal is) I still have pain and issues, but am glad I went through with the surgery. It can be a long recovery for some of us…hang in there! It will get better!! Bother your doc with your concerns/pain until they help you!
this illness has no panten to it.... cos this week as been a week from hell being sick all the time, dizzyness, haed as been killing. sleeping all the time and what is worst is that my kids don't understand, if they do see me be sick then am not ill in their eyes tryed sitting them down and talk to them about what is going off with me but they are only kids at the end of the day thay missser they mummy. who can blame them i gone from doing evrything for them do not doin much a part from sleeping or bein sick and stressing a lot. they don't understand that 2 hours of cleaning or going shopping puts me in bed for a week after. i seem to have more problems know that what i did be4 i had my surgery i wish i had put my surgery off untill i had completed my university course.. thanks you for all your kind words... have you gone back t work Mochico-Monique? if so what type of work only asking as i want to become a nurse?
Roxanne,
I was an OR nurse when I quit....I still work at the hospital part time, but behind a desk doing medical coding. I couldn't go back working such long hours standing in the OR. Luckily my boss is so understanding and flexible.Sometimes I miss alot of work due to medical issues (surgeries, pain, migraines, stomach probs, etc--I also have Celiac disease and Sjogren's syndrome) and she let's me make up time or work from home when needed. I only work so I am not at home feeling more miserable...keeping busy is the best! I am not one to sucumb to disability. I enjoy what I do and who I work with and would never have been able to keep a job anywhere else due to my medical probs. I am extremely lucky!
Good luck with nursing. It's an awesome profession!
i was realy hopping that you had a job doing something else that was not nursing. i still have two years to go be4 i am a nurse and all i can keep thinking is how i am going to get this done but the more i read about this crap illness the more it become really that i may not ever get their!!! i was ment to be a nurse its all i know.. your message made me cry because i know the pain am in am not going to be able to go back to what i love
I'm sorry! Don't get discouraged! It certainly doesn't mean you can't follow your dream and still do nursing! I have actually been discussing with my husband going back to nursing, just not in the OR. There are SO many different types of nursing and some are less strenuous than others! Don't give up! I look at like my life will never be the way it was before my Chiari diagnosis, just a different kind of life! You just have to get used to a different "normal" and continue to enjoy life. Don't give up on your dreams, just figure out a different way to make it work for you!! You can do it!