Chiari Online Support Group

Second time for surgery in a year

Hello all. I hope this message finds you all doing great and having a very manageable symptom day! I was just curious if anyone who has had the surgery completed more than once would be kind enough to share your thoughts and experience? I had my first surgery Sept / 2015 and I’m just 5 days post op from my second one. I’m not sure if there is much I can say right now about my second surgery other than I can tell you it is extremely more painful than the first time. Hopefully I’ll have some positive results this time, but it is way too early to tell at this time. Thanks for sharing.

Gosh! Once was enough for me. I hope that your recovery goes well. Post surgery, I found that mini-isometric contractions of localized cervical muscles worked well for me at keeping the pain at bay and me more aware of my neck’s location in space. Of course, there are lots of other methods.

Good luck in finding what works well for you!

Thanks for your response Gabby! I had a new neurosurgeon this time around. My old one said I needed someone more specialized than himself. Which off topic, I think was awesome! A doctor who admitted his short comings and referred out instead of trying to do something he cant! Anyway, the new neuro said the pain would much worse the second time around. I can tell you he wasn’t lying! I’m just one week post op, but my neck pain is off the charts. Plus, I still have a lot of other post op pain to go along with the pain with the symptoms I’ve had for years. I have no clue what it’s like to be pain free. Last time was over five years ago at least.
Anyway, I try to take as much positive advice as I can, so thank you again!

Trver

Hello Trever, so I see that not only do we have Chiari in common, but we both also live in Ohio. First off, I hope you are getting better and better by the day. This has got to be a hard process again. I hope this surgery helps you and your done with future surgery.

Thank you for responding! I’m guessing you are up in northeast Ohio?! It sounds like you have a lot going on. Much more than just Chiari, which is completely dibilatating on its own. How long did it take someone to finally diagnose you with Chiari? I believe it was almost 5 years for me. The only person that believed me was my family doctor. He was treating me for fibromyalgia. He still does too!! Unfortunately, he’s the only one to provide pain scripts for me, which I certainly can’t function without at this time. I knew in my heart of hearts that there was something much worse going on, so he referred me out to see all kinds of specialist. However, they all said they don’t treat Fibro. After 6 months of trying, a found a neurologist who would actually see me. First thing he said was I don’t treat fibromyalgia. “I don’t want to be treated for Fibro and there has to be something more”. He very reluctantly sent me for an MRI and made my next appointment with him 5 months afterwards. That was his way of saying there’s nothing wrong you". Oh yeah, he gave me another script too, which put my total up to 13 at the time. Anyway, I’m getting off track. My father and mother didn’t even believe me, and dad is a doc and mom a nurse. Well, I got the MRI done that day. The neuro called me two days later and said you really need to see me like right now! And then it begins!! Turns out I have a 22 mm herniation and was most likely is causing all my problems. I’ve done so much reading on CM and I’ve heard that many have to go back for a second, or even third operation 4-5 years after the first one. Well, mine was just under a year when they told me I needed another one. My
current neurosurgeon said it was too much for him, and I was referred to a Dr, Ringer at the Mayfield Clinic in Cincinnati here they specialize in brain and spine issues. These people were awesome! Now that I’m around 3 weeks post op, I’m beginning to tell the different between surgical pain and CM pain. I still have a lot of CM pain, and that frightens me a little bit. If it were just me, it wouldn’t be so bad. However, I’m a single dad with an 8 year old daughter who is just an incredible young baby girl. I honestly don’t think I’d have the strength to do this without her. On a side note, my ex wife took both opportunities and file for full custody. That’s a whole other story, but she lost both times and just caused an unbelievable amount of stress on me…like I didn’t have enough already. Anyway, I can’t imagine her having to grow up without her daddy. Each surgery adds more and more risks, with stroke and/or death. Well, I think I’ve went on and on and on here. My apologies for the length. Thank you very much for responding in the first place. It means the world to me when someone does respond. It gives me hope, when I’m almost out. Thank you very much, and I hope you’re having a great day.zy

Trever, I understand all too well my kind sir. I have had headaches since I was a very little girl. I used to describe them as hell itself is in my head. All my doctors chalked it up to migraine. And still tried to treat them that way when I went in for them with migraine meds, needless to say that they never worked. After each pregnancy, my headache got worse. I had my last son 10 years apart from the others. Once I had him I got put back in the hospital3 times during my maternity leave. They “thought” I was having post pardum pre eclampsia. Where all you organ fail. My blood pressure was at stroke level. They finally sent a neurologist to see me and did an mri if my brain. This was in June. As soon as the Mri was done I had an appointment with a neurosurgeon. He said “yes, you have Chiari, but let’s monitor it and see” in July. By September my brain dropped more and blew out my spinal cord causing the syrinx. And the nerve damage that I still have today. The neurosurgeon then thought it was a good time for surgery. I didn’t know all of this at the time so I let him do the surgery. He did okay. But caused nerve damage on the left side of my head by my incision. Hurts to brush my hair. My nerve damage in my arm has never gone away and so I was sent to the Cleveland clinic for a electronic stimulator device this April. So the first surgery they messed up. I woke up with nerve pain down my other are too. I was sooo scared. … then they did the surgery again and I had them wake me up during(very scary) and tell them where to put the electrode. It is still not providing great coverage, but my pain doctor still wants to try to take my off some of my pain meds for this stimulator to be deemed effective. I just got dropped down to two to one day at work and got wrote up after 10 years for unsatisfactory work. Mind you I was the boss up till dec but now am just an employee. And they still need me to jump through hoops to start this disability process. Ugh I get really exhausted some times. It’s hard enough fighting to get around and function for my family. But these people want me to spend all this time appeasing them. I’m a very nice person but boy oh boy do they all waste a person’s life. Something we know is special. I do live up northwest oh. 45 min south of Toledo. I am coming up onmy 4 years since surgery and have already been having issues again. Wow. Sorry for the sad text, but reading your story too. We are pretty darn close on the “SPECIAL” scale. Lol as far as your ex.they always try and get you when you are down. Just rise above like the warrior that you are. Oh and I’ve gotten myself down to five meds. Woot woo.