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10-10-2012, 04:24 PM | #1 | ||
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As hard as it is...you're going to just have to wait for the results. I know how hard it is. I had to wait almost a week for my initial results and it felt like forever. If the pain and what not is getting worse, I'd either call the doc or head for the ER. |
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09-26-2013, 12:16 PM | #2 | ||
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I just had this surgery September20,2013. The first night was impossible. I was in a lot of pain and nautious! I was released the next day after my surgeon came in and saw me. He said that I really needed this surgery. I have suffered for over 20 years with migraines and temporary paralysis. I couldn't hold a job for very long because the management and coworkers never understood. This year has been full of health issues starting with a heart attack but any way... I wasn't nervous or scared about the surgery. I actually was cracking jokes up until I was put under. The surgeon also advised me the incision was a lot bigger than he expected. He also told me my recovery will take longer than expected as well! I'm on day 6 and I'm pretty much confined to the couch. My symptoms are as follow; I can't sit,stand,read and watch tv for long periods of times because I become dizzy. I'm nautious 24/7 even with medication, I feel exhausted,sometimes I can't get comfortable,my hearing has become muffled,I can't feel the tip of my tongue,when I stand up on my left side of my scalp I feel like there are bugs crawling under my skin, I can't move my head from side to side or up and down,and last thing I can't hold the phone up to either ear because it hurts and echoes. I am waiting for the surgeon to call me back to see if all of these symptoms are normal. Back track here a little bit the reason why I wasn't nervous about the surgery is because my neurosurgeon is the best on the west coast and my doctor who found this malformation and pineal cysts two years ago already prepared me about the surgery. well that's my story so far about my surgery! I don't know if it helps or not but just like everybody has said that each person is different... Lol now I can add cow (which is what replaced the part of my skull the dr removed) to my genealogy!! Kay |
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01-31-2014, 11:42 AM | #3 | ||
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HI. I have had this sugery on dec 4 . if I new wht I no now would have never done it
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02-14-2014, 02:50 PM | #4 | ||
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I realize this is an older thread, but newer responses are here and I wanted to offer my experience.
I had the decompression surgery 10/04. I also have a syrinx in my cervical spinal cord that has done severe damage. I'm in pain mgmt for the rest of my life, but it's ok. I can deal with that. When I was in the hospital after surgery it was all good. Then they sent me home. By my 2nd day home I was in tears because the pain was so bad. I went into the dr's office and he asked, "Are you taking all the meds we sent home? The pain meds and steroids?" Well, they forgot to send home steroids. We filled that script fast and within an HOUR after taking it, I felt like I was actually going to live. There was still post surgery pain - I mean, hey, it was freaking brain surgery and they removed a piece of my spine, but the steroid reducing that swelling was the life-saver. Through my sharing on the 'net, I've discovered that sometimes dr's don't think to send home that steroid script. And when asked and it's given, people are getting relief. I'm not saying that's the case for the majority of the posters here, your continuing pain, long past initial recovery is something entirely different. My other advice is to find a really good pain management clinic. I'm on a boatload of meds, but I also have 6 diseases. But for the Chiari/Syrinx, the mix that works for me is Hydrocodone, Zonegran (I can't take Gapapentin in any form whether it's Neurontin, LYrica, etc. because it makes me psychotic - a KNOWN side effect dr's don't tell you about til you're about to kill yourself), a muscle relaxer and if I hadn't had gastric bypass (weight loss surgery) I'd be taking an anti-inflammatory - that's a life saver to people with ACM 1 and/or Syrinx. I hope all who've had the surgery can find relief both in the short and long term. It's hard enough to have had to suffer from these debilitating diseases for so long, but when the recovery goes on and on...it can be disheartening. It also did me a lot of good to find a great therapist to help me deal. |
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11-13-2008, 11:17 PM | #5 | ||
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Thanks, mother&wife |
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11-30-2008, 02:02 AM | #6 | ||
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12-04-2008, 08:18 AM | #7 | ||
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I am sorry to hear that you are not doing better. I recently had my decompression done on 11/10/2008 and even though I am still just shy of a month after surgery I am doing a lot better. I have found these sites that might be helpful to you. Type in Chip's Chiari Page in your search engine. This page has helped me a lot and they also have a support group. Try also typing in Chiari Malformation Institute in your search engine too. They are a hospital in New York that does ONLY Chiari Malformation procedures and may be able to help you. I don't know where you are located, but it's worth a shot maybe just to get some answers. Maybe your doctor just had not done enough of these procedures too and cannot help you. Have you tried searching for a surgeon in your area that is top notch in this field or has done quite a lot of them? I didn't know that my town even had a support group until I looked and found quite a lot of people who have had this done. I thought I was very much alone in my journey until I started searching. Now, I don't know what the months ahead have in store for me, but I am going to keep the faith that I WILL get better each and every day, even though sometimes I think I will not. I have to as I have two beautiful children that need me. I wish you luck on your journey and if you have anymore questions or anything please don't hesitate to contact me.
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05-20-2009, 08:06 PM | #8 | ||
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Hello, I am look to find a sugeon to relief me from this pressures headache and this noise in my left ear that is driving me crazy and I am having other symptom, have been dx with a9.4mm chiari 2 month ago and not getting any better. can you please tell me the name of the Dr that did the surgery please
thank Laura Quincy,MI Chiari 9.4mm Quote:
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05-22-2009, 06:30 PM | #9 | ||
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There is a web site called "WACMA" The World Arnold Chiari Association********Click on onsite info and there is a listing for doctors and you can search by state. It looks like there is only one in your state, but if you are willing to travel you can go to another state. Good luck.
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07-19-2009, 10:33 AM | #10 | ||
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Good Luck! |
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