I want to introduce myself. I have had two decompression surgeries and then a 3rd surgery for a C2 laminectomy (all in the past 20 months). I am 42 years old and have been told my whole life that my symptoms were due to stress and anxiety. Feel free to contact me with any questions/thoughts that you might have.
I have pretty good knowledge with surgeons and ideas to help you gather information on how to meet with them. I have had my battles with insurance companies and have won all but one of my battles.
If there is anything that I can do to help you, please contact me.
When I flew out to SC to meet Dr. Rosner, part of his legal issues made it where I had to visit Dr. Englebreck (it was a stupid lawsuit against Dr. Rosner - I actually have the whole court proceedings save to my computer and Dr. Rosner had all the best Chiari surgeons in the world defend him - I feel really bad for him). Dr. E was amazing. You have some great resources there.
Chiari is tough on everyone. When I talk to people I always remember that everyone is different and do the best I can to help. That is all we can do.
Hi jeff, my name is Tracy Jessica. I am yet to have my surgery. You know, finding a qualified surgeon that my insurance actually covers, MAJOR surgery phobia, etc. I am very curious as to why you needed 2 decompression surgeries. I am also wondering how you are doing now. I am curious about a gazillion things, but I will start with those 2 things if it is ok.
Dear jeff, you are truly a remarkable person. My name is robin and I have used this site for the many triumphs and struggles with this condition. Even im having a hard time with this condition. Ive had a 3 level diskectomy fusion from c4 to c7 (2011) and my decomptession and stenosis surgery march of 2013. My symptoms are quite strange to me. My throbbing headaches have lessoned somewhat but I still have severe neck pain with doing pt 2 times a week and now my doc wants me to see another neurologist. What concerns me is the neck pain which is constant but my thinking process is constantly overloaded with thoughts and hearing is still off. I also have problems with focusing my eyes. Do you feel some of these symptoms are common? I hope they are cause life feels pretty bizarre. I get to have another 3 months off to recuperate. If anything thank you so much for listening my friend. Sincerely robin
That is something. My surgery is coming up in July and I have been having reservations, but I know I have to have it done so I can get some relief. I have read some interesting stories on this website and navigated through the resources, but the true life experiences is a comfort to me. I appreciate you sharing your story. I pray that you are well.
If you get a chance, read my blog about talking to a NS - I gave some description as to why I needed three surgeries there. I am a strong believer that most Chiarians need surgery to relieve symptoms, but for some the surgery has more risks than make it worth it. There are a lot of other problems associated with Chiari that become problematic. If you don't have all the other problems, surgery works best for most, but even in these cases, sometimes it just doesn't help. It is a sad state of Chiari.
I had a leak after my first surgery and I also ended up with spinal cord tethering at C1. After my 2nd surgery, I didn't have any leaks, but again my cord was tethered, now at C2. Basically, as your body heals you form scare tissue. If your cord (which moves somewhat with CSF flow, touching this scar tissue you can get tethering). I had a C2 lamincectomy done a few weeks ago. I feel good, but am still healing. I will know more in the coming weeks. I hope this is the end, but I really don't know at this point.
Your "Phobia" is normal. I wasn't afraid of surgery the first time. I guess you can say, I am still not afraid of surgery. What worries me is that when I go under I won't wake up and my daughter will grow up not knowing her father. Surgery itself, if I pick a qualified surgeon, doesn't scare me. I never knew my dad. He left when I was three and died when I was nine. I never saw him. The idea that this could happen to my daughter scares me. In the end, I have just had to way all the factors and put trust in myself and those who I pick to help.
Feel free to email me. Hope you are doing well.
Jeff
jessica said:
Hi jeff, my name is Tracy Jessica. I am yet to have my surgery. You know, finding a qualified surgeon that my insurance actually covers, MAJOR surgery phobia, etc. I am very curious as to why you needed 2 decompression surgeries. I am also wondering how you are doing now. I am curious about a gazillion things, but I will start with those 2 things if it is ok.
Thanks for sharing. I try to keep a list of names/facilities for Chiari surgeons. Could you please let us know who you are seeing and where. Please feel free to contact me.
Thanks,
Jeff
Val said:
That is something. My surgery is coming up in July and I have been having reservations, but I know I have to have it done so I can get some relief. I have read some interesting stories on this website and navigated through the resources, but the true life experiences is a comfort to me. I appreciate you sharing your story. I pray that you are well.
There ya be! I could have checked your pics before i checked it was you...duh. Maybe your presence will get me back on the boards! I have been in denial, in a way of sorts, esp since i have had a few symptoms intermittently sneak back in. It's a great group here and i am glad that you joined.... :-)
Small world once again! I wouldn't say I was stalked, but that is funny! Tomorrow, I am trying to get out of my shell and we are doing a BBQ Potluck style. One thing that I have learned through out this is that I need to be me as much as possible. Post surgery #1, I went into a hole and it took me a year to get out. Now I am back, but being smart about it. There is nothing easy or fun about Chiari and we have to keep our expectations at a decent level. I am off for the summer and will be heavily involved in this site (since when I go back to teaching in Aug. I know it will be more difficult). What are your symptoms? How did your post surgery MRI go? Did you get the radiologist reports?
Thank you Jeff. I thank you for sharing your knowledge. Are you doing better? I'm so thankful I didn't have any of my symptoms until I was almost 50. (A car wreck activated my chiari & syrinx symptoms.)
I do have a question. Do you know of a less sedating muscle relaxer? Even though I’ve been increasing my magnesium my muscle spasms are increasing. I’ve been taking Zanaflex (Tizanidine) for years, but it is very sedating. I'm fixing to post this question if I can figure out how to post a question here :).
Thank you again for helping us and being a moderator.
I am doing well. I would definitely do a hormone, vitamin, and mineral blood test to find out if you are lacking. Chiari has a way of depleting our system of nutriance and mineals and all of them can cause spasm problems.
I used Gabapentin for years, but it is can also be sedating. Gabapentin is also good for nerve pain.
Let me know if this helps or if you have other questions.
Hello Jeff. I am seeing Dr. Joel Pickett at the Spine & Neuro Center in Huntsville, AL. My surgery is being performed at Huntsville Hospital. From my research, he has done numerous decompression surgeries, so that is another comfort to me.
Since you've already met with Dr. Ciricillo, do you have any suggestions for me how I can make my appointment a little smoother? Seems like most NS just look through the paperwork and send you on your way. Since I've had to wait so long to see him I'd really like to be as prepared as possible. Thanks!!
Thanks for being here for all of us!! I am fairly new to this. My 17yr old son was just diagnosed in May after years of headaches, In the past 6-8 months he has developed abdominal issues and anxiety. We have seen one NS that is a family friend and recommends surgery, he is fairly new NS so we asked around and have been referred to Barrows Neurological institute in Phoenix. We have heard from many people that this is the place to be treated. We had to send all his test/imaging and medical records for them to review before they would set an appointment. We have an appointment with a NS on the 24.
You and other people have mentioned that you have had battles with insurance companies. What kind of issues have you had and is there anything I should be proactive with if we do surgery.
Hi Jeff, my name is Robin and my husband had decompression surgery 5 mo ago and is still having daily headaches. I know he has probably been too physically active with goin back to work full time (construction) and being active with our 4 kids. I’m just looking for something that may give him some relief from the headaches that is not narcotic. Is there something that has worked for you and how long did it take you to feel close to normal? Any information would be greatly appreciated.