What I would like to ask of the people here, is those of you who have had the decompression surgery, how long of recovery period did you have? What all did your recovery process entail? Did you have to go for any type of physical therapy afterwards? Just trying to get an idea of the road ahead for me. I know each case and each person is different, but I'm sure some things are the same, any insight would be greatly appreciated.
Thank you all for your continued support and well wishes, Megan
Hi Emma,
I do appreciate your response, and I'm glad your improving and I'm hope that is what will come out of my surgery when I have it in November. Trying to keep myself stress free beforehand, thinking that might help through the surgery as well. While everyone is falling a part around me, because I have to go in, I'm actually rather calm about it and levelheaded. I appreciate your response, and I will let you all know how everything goes and how everything progresses, again thanks for your insight and I'm sure I will talk to you again.
Megan
Hi Megan, I had my decompression almost 2 years ago. I had a 13 mm herniation and was 100% blocked. The surgery took about 4 hours and I was in hospital for 5 days total. It took me about a week before I was able to leave the house and I had to use a walker to steady myself. They started me in PT while I was in the hospital and I continued that for about 5 weeks after the surgery. I took all my pain meds and slept alot. The incision was sore to touch or lay on so I spent most of my time on my side. They used staples to close the incision and I had those taken out 10 days after surgery (that didn't hurt at all except for one stubborn staple at the bottom!) I just took it easy for about 6 weeks and then I got the go ahead to drive and lift 5-10-15 pounds and I was back in business. The recovery process is loooong. Some days will be better and some will be not so good. I got tired very easily for a while after the surgery. I had trouble with my memory which was scary to me. I had Occupational Therapy to help with the memory stuff. I felt really good right after surgery and the awful pain up the back of my head was gone. I can send you a picture of my incision if you want to see what it looks like! Terri
Hi Terra,
Sorry I didn't reply to your post earlier, but I haven't been feeling all that great and haven't been getting online all that much. But I appreciate your insight and if you want to send the picture that would be fine, my e-mail is ■■■■■■■■■■■■■■■■■■. I'm not currently working right now, but I've been looking for a job for the past year, and I've been trying to lay off looking for one right now, at least until after my surgery, not wanting to get into a job and have to leave an employer high and dry for the surgery. But again I appreciate your insight and I hope to talk to you again soon.
Take care, Megan
I think it depends a lot on your age, how long you've had symptoms, and your general activity level before you started going downhill with your symptoms. I was never super-active and I've always been overweight, but when I started getting symptoms (of course I didn't know they were chiari symptoms til much, MUCH later), I stopped being active like I was, I got tired easier and stopped going to the gym. Eventually I worked my way to sitting at my desk all day and going home and sitting on the couch all night - over the course of about 3 years and I put on about 80lbs, I think this is when i started having symptoms and they gradually got worse.
I turned 26 about 9 days after my decompression and my surgery itself was really hard for me. I've had 2 other surgeries in my life, just "routine" - tonsils when I was 23 (worst experience until brain surgery!), and toe surgery when I was 21. I suggest you find out exactly what they are doing to you - I had a duraplasty and a c1 and c2 laminectomy. They put in a bovine patch for the duraplasty. You can simply google the medical terms and Chiari medical sites will pop up, one in particular I found diagrams of what they do, it was really helpful for me. My incision turned out to be a lot bigger than I expected, it's about 5-6inches long, only about an inch into my hair line, the rest is down my neck and between my shoulder blades. They didn't even give me staples in mine - they said it causes too much scarring and so they stitched it internally with dissolvable stitches and steri-striped it and bandaged it. I just let the steri-strips fall off on their own, no staple-removal.
The surgery was simple - I was knocked out before I was even on the operating table...a few hours later I woke up and everyone told me my head was the size of a pumpkin! I can't even believe them now! I didn't want to do anything but sleep. I was so sick afterwards, I think it was the morphine, they had me on anti-nausea meds - (it's almost 15 weeks later now so a lot is a blur). I was in the hospital for 4 days, they released me before I was eating solid food. For some reason I had trouble with my oxygen levels, I had a heart arrythmia and they sent me home with oxygen, I'm still fighting to get them to take the oxygen tanks out of my house! (the pulmonary people are making me take a sleep apnea test). In the hospital my surgeon made all these claims, said i was going to be sitting up, walking the first day - I stayed in bed for the first 2 days I think, I barely walked until I got home. I had to go thru a lot of stuff (CT scans, walking/breathing tests) because of the oxygen level thing, but they did have me go thru a quick PT session before I left the hospital, but since I live with my spouse and he was going to stay with me 24/7 the first week I would be home they didn't need to spend much time going over things with me, just the basics, how to get out of bed, the shower, toilet, etc, without bending/turning my neck - you'll be really surprised how hard it is to do things when you can't move your neck at all! Plus I was a special case since I was going home with an oxygen tank.
The real fun came 7.5 weeks after surgery when I became violently ill and ended up in the ER with a spinal fluid leak. I blacked out a few times and was in h*ll!! it was definitely the worst experience of my life - if you go back thru my posts you'll see where I posted about it. I was in the hospital for 4 days, in ICU, potassium chloride IV in one arm (because I hadn't eaten for days, I was just throwing up spinal fluid), an IV for morphine and nausea meds in the other arm, I was in the most pain of my life even while on the morphine and nausea meds it was that bad. I had emergency repair surgery - I couldn't wait for them to cut me open!! When I woke up from that brain surgery - it was amazing, I felt SO much better. and now today, 6 weeks and 3 days later, I feel like I'm becoming normal again! I have no chiari symptoms, just some surgical pain - mostly from the 2nd surgery, I have a lot of numbness on the back/top of my head - it's not completely numb (and I see my surgeon tomorrow so I will ask him about it), but even if the feeling never comes back I will be happy to live like this. I'm starting to get my energy back, I've lost 20lbs, effortlessly since the first surgery, I haven't had a headache or migraine, no more tunnel vision - although if my neck pain/shoulder pain from surgery is bad enough I will sometimes get double vision, but it's usually at night and I'm still on muscle relaxers so I'm hopeful this will clear up with time. My tunnel vision was better after surgery but I had terrible double vision with the pain after surgery - so much that I couldn't type or text or read! It's better now...but I haven't had a headache to test that!
Overall, I am VERY happy with my surgery and yes, there were times where I completely broke down, cried and regretted having surgery. I wished and wished that I could go back and never gone through with it.
Right now I have a lump forming again on the back of my head and I am concerned it could be another leak. I will see what my surgeon says tomorrow morning, but for the time being I am completely happy with how i have been feeling and hope that the lump is just post-surgery scarring or blood-pooling and not another leak, my surgeon assured me before that it would be near-impossible with all the precautions he took that another leak be highly unlikely, so I'm hoping he has good news tomorrow.
I wish you all the best of luck - I know exactly what you are going through - you can look thru my past posts and see how agonized I was before surgery. Even after surgery I was a mess, trying to figure out if I made the right decision - I sometimes even doubted my surgeon. Sometimes still do, lol. I always had hope in knowing there are people like me out there - having these crazy symptoms and so many people not believing you or thinking you're crazy. I'm not crazy...and now I don't have crazy symptoms either and I'm living proof that the symptoms were in fact related. Get in touch if you want to talk!