Chiari Online Support Group

It's been a month since my husband's decompression surgery. It has reinvigorated him to live life! :) :)

Wow. I feel compelled to return to this site to let people know that you can have this surgery and have (so far thank God) no complications. Before Brian’s surgery, as we were researching, we read horror story after horror story of surgery complications/surgery not working/surgery making new symptoms. It terrified us to say the least. My husband had:decompression surgery, duraplasty, and they shaved some of his verterbrae down I believe. Healing was a process, but each day and week he improved slightly. Currently, he is walking, DRIVING, going up 3 flights of stairs (we live on the 3rd floor) and returns to work tomorrow as a 1st grade teacher. He is only doing a half day because he is still building back his stamina.
One thing we have noticed, besides his symptoms going away, is if he doesn’t eat healthy or sleep enough he feels very weak and “hits a wall”. It’s weird that the body knows what it wants and what it needs.

If anyone is getting the surgery and has specific questions I am more than happy to answer them and if I don’t know it then I’ll ask him. :slight_smile:
The surgeon who operated on Brian was Dr. Parrish in Houston. We fully recommend him!!!

Thanks for sharing your DH's story. Hearing stories like yours help me feel more confident in my decision to have surgery. Hope his recovery keeps going smoothly.

Diana

I'm glad to hear that he's doing better and tell him not to strees too much and get a lot of rest!

Thanks for sharing…I have also read so many horror stories and am scared to death about my up coming surgery…how long was he in the hospital and when did he start to drive?

That is great to hear. I have surgery in 3 months and also wonder what all could happen but am trying to just think the only thing that will happen is that I will be much better after the surgery. I am glad to hear your husband did so well.

So happy he is doing better. I am happy for you as well. Quite the worry for you too no doubt.

Thats FANTASTIC!! Thank you for sharing you husbands “surgery success” story!!! I think it sure helps folks feel better that are going into surgery!!!

Keep up the speedy recovery!

THANK GOD…So happy that things are going so well!!

Thanks everyone!
He started driving 3 weeks afterwards. It started slow, he drove to a restaurant 10 minutes away, we ate and I would have to drive back because he was tired. Now, he can drive considerably longer (we did an hr yesterday) but he still gets tired.
I understand being scared, you are going to go through a lot. However, women handle pain better :wink: and you are going to do great!! Make sure you have someone with you at all times to keep you comfy. It helped Brian heal better he said for me being there waiting hand and foot, getting nurses, and just knowing what he needed.
Brian was in icu immediately after surgery (the surgery lasted 4 hrs) he stayed overnight in icu and left to a private room in the afternoon. He stayed in a private room for 4 days. He could of left sooner but since he didn’t have a bm we chose for him to stay an extra day. We were also nervous about leaving too soon… I was scared to be honest and he wasn’t trying to rush out.
Brian said he is going to write you and tell you more about the surgery and how it felt. He also wants to know when you are having it done.
You are going to do great, healing is a long process! (I still have to remind Brian that)

Thanks for the info. I am having it done September 22nd. My husband will be home with me for 3 weeks and hopefully from there it will just be friends and family popping in to see me. I drive for my job, sometimes 3 hours one way ( I am a k9 handler) so that is the part that makes me nervous, I’m sure I’ll be a few weeks longer for returning to work.

Tell Brian I would love to hear all about it when he feels up to it. I can email you my number if he feels up to chatting.

Thanks

Sharon

Thanks so much for sharing that positive story. My surgery is Sept. 9th and all the recent positive stories really help. I, too, wanted to know how soon before you can drive. LOL I see we all want to be able to get that independence back and drive around. At least to the store.

One question I have is did he need a special type of pillow? How was he able to sleep, on his side?

I hope Brian continues to get better and that those 1st graders don't wear him out. LOL

Thanks again

Kisimi

Hey everybody, This is Brian (the actual Zipperhead :) I’m sorry that I haven't been here sooner to talk about my experience but I'm very proud of my wife helping all of you out as I have been healing. She has been more than amazing. To start this off I have to say that I had Chiari knowingly for 5 years before I had the surgery and it became worse every year especially 2011. I was willing to do anything not to have surgery. I was terrified! I have never had any sort of surgery, not even my wisdom teeth pulled. It came to a point when I had lost the battle of living life with this burden. It got to the point where I was saying "if this surgery kills me at least I wont feel this anymore". It sounds pathetic but I have a feeling some of you understand. I did some research and found a Neurosurgeon that seemed to kick ass in this surgery. Dr. Parrish from Houston is amazing. He was a military man and has also been fixing soldiers in Iraq for years along with brains. His confidence with this surgery really felt odd to me because it was so serious in my mind but so "this is nothing" to him. I saw Dr. Parrish on July 7, 2011 and had an appointment July 26, 2011 for the decompression surgery and duraplasty. When the date was set this is when it felt overwhelming. I could not believe this was happening. I lived a small "bucket list" of things to do in my town (as well as I could) and convinced myself that this was for the best during these two weeks. On the day of the surgery that’s when I came to terms that everything is going to be okay. I set things up for my future to do after the surgery because I became Positive. I bought a concert ticket for Oct. 4 and made it my goal to be well by that date to go see that show. I bought a couple of things on EBay also so they would be waiting for me. My surgery was at 7:00 A.M so I had to be there at 5:00. The first thing they did was make me sit in a room with a gown on and wait. It was a long 30 minutes. I was so happy to have my Wife and parents there. A nurse came in to put an I.V. in and completely botched. She poked around in my hand for about 5 minutes before she said, "I’m going to have to try another vain. "Boy this is starting wonderfully,” I thought. After the I.V. was in, the anesthesiologist came in and talked to me. This guy was super nice and really made me feel comfortable. I wish could remember his name because I would like to thank him. (It’s probably on a bill somewhere) For some reason I was really scared of being put under. Maybe because is was my first time. The first thing they put in my I.V. was some type of drug to calm me down. It really worked. As I was getting carted off to the surgical room I was laughing in joy as my family was crying. When I think back to that moment it makes me laugh now. When I reached the room there was about ten people there. Dr. Parrish had some interns also with him to show them how to do this decompression surgery. I was super talkative and asking them how their morning was. I think I even told one of the nurses she was pretty. Good lord I was goofy. When they put me under they tricked me pretty good. They knew I was scared so they did a great lie and told me the mask they were putting on first was oxygen to help me relax. Next thing I new I heard someone saying "time to wake up". All I have to say is that it was the best sleep of my life. I woke up smiling and saw my wife’s face. She immediately starting tearing up because she was happy to see me alive and smiling. I got carted off to ICU and after about an hour the smile went away. Here comes the pain of brain surgery. My best advice to everyone is to have your pillows that you like. Hospital pillows are horrible. A trick that I found was to have many small towels. I could shape them around my incision just right so that it was not being touched. I did not move for about 24 hours. I did not want to. I was filled up with drugs every 4 hours. Morphine did not work like you would think it would. It did its job for about 45 minutes until I felt crappy again. Fentanyl worked a tad better but I found that the drug that really helped was Soma (muscle relaxer). It helped me sleep too. I did receive a drug that really kicked out all pain one time but made me look like a junkie with one eye open and drool dripping out of my mouth called Dilaudid. The nurse told me it is ten times stronger than Morphine. It sounds scary but it works. I only needed this once at my worst. After about 36 hours I was moved to a private room. Thank God because ICU is not relaxing. It is loud and people are always in and out. I was next to a screaming patient also who was in intense pain. I forgot to mention that Dr. Parrish saw me in my first 24 hours and made me sit up and even stand. Like I said he is a military man and at this moment I felt like I was in boot camp. It sucked to say the least the first time I got up but he said, "It helps the flow and I don’t want any infection". I did not argue and to be honest I realized I was standing a day after brain surgery. Talk about a confidence booster.

Back to the private room they took out my catheter and the I.V. that was in my artery that checked my blood pressure (don't worry they put this one I.V. in while you are put under.) I was now in a room with a TV. This was so much better. I had to walk to go to the bathroom, which was not too often. I was super constipated from the Meds. That was one of the worst parts besides the pain. I had enemas and all kinds of laxatives that made me sick to my stomach. It took about 5 days to have a bowel movement and even after that 5 more days until the next one. I had my surgery on a Tuesday and left on a Saturday. The car ride home was very uncomfortable. It was about a 30-minute drive but felt like forever and of course it was over 100 degrees in Houston that day. I stayed at my parent’s house for 2 weeks and then went to my house in Austin. For those two weeks I was nauseous and dizzy and very weak but I improved everyday in my strength and the nausea started to diminish. I had 22 staples in the back of my head that became very annoying, soar, and itchy towards the end of my two week stay at my parents. My check up was the Monday before my two week anniversary of my surgery. At this time they pulled out my staples, which actually really hurt on my neck. The one on my head did not hurt as bad getting pulled out. The only complaint I had was that I had crazy ringing in my ears. Dr. Parrish said that it was probably from the meds or my head healing from all the crap it just went through. I can tell you today that I have no ringing so whatever it was it's healed. Dr. Parrish said I looked great and to come back in two more week. By this point I was walking short distances for about 10 minutes at a time before my body would say "Okay, your done moving".

Today is my 5-week anniversary since my surgery and I feel much better. I’m not quite 100% but I will say I am about 90% to 95%. I went to work for a full day the first time today and it wore me out but I realized that it is possible and it can only get better. My symptoms from the Chiari are completely gone for the most part. Every once in awhile I feel a tad of pressure but it subsides very fast and I feel pretty normal. I asked Dr Parrish about this last visit and he told me "You have Chiari, you will always feel a tad off but you will fell better and you will not get worse” He also told me my energy should be back completely in 6 weeks and I’m at 5 weeks and would agree with him by where I’m at now energy wise. He also said 6 months I should forget I had the surgery because I will feel and be able to do all the things every else does. I hope my journey keeps going in the right direction and pray that everyone else will have the success I have had so far. Just go in with optimism and have lots of books and movies ready to read and watch. So far this has been the best decision I have ever made. I'll try to answer as many questions as I can just keep in mind that I am starting my job back up and my energy is not quite all there yet. STAY POSITIVE YOU HAVE LOTS OF LIFE TO LIVE :)

I will try to get my pics up here soon for everyone to see. I have been documenting the healing process.

Take care,

Brian Ellison



Sslakemom2 said:
Thanks for the info. I am having it done September 22nd. My husband will be home with me for 3 weeks and hopefully from there it will just be friends and family popping in to see me. I drive for my job, sometimes 3 hours one way ( I am a k9 handler) so that is the part that makes me nervous, I'm sure I'll be a few weeks longer for returning to work.

Tell Brian I would love to hear all about it when he feels up to it. I can email you my number if he feels up to chatting.

Thanks

Sharon

Wow…your an inspiration. And I feel a little better about my bucket list being checked off. I am truly frightened, which is hard because I do believe God will take care of me…it’s just hard to think that maybe he has other plans for me.

Well thanks for sharing and keep us informed.

Sharon

Brian I’m so glad that you are doing better and your story is a great one because you was optimistic about surgery for 5 years. Some here think that as long as they treat the pain that everything will be OK but it’s not OK the body is getting worse. I’m ready to see the pics and don’t let those kids worry to much: -). Take care

Love
Tradee