- I was hit head on last March just 4 days after having a baby. I suffered pretty bad whip lash and a fractured vertebrae in my T Spine. I started intensive Chiropractic care with weekly massage. My symptoms improved pretty quickly, but it was like I hit a wall after a certain point and I just didn't improve anymore. I was referred to a neurologist who said I needed to have my lumbar region fused because the accident had also herniated my L4/L5 disc, but wanted to have a full MRI done of my spine because I has having horrible neck and head pain. It was then that they found the 1cm Chiari and figured most of my symptoms/pain were coming from it. Once the surgeon decided that surgery was necessary the insurance would not pay for my chiropractic or massage anymore. It was the only thing that was keeping me functioning!I have deteriorated pretty steadily in the last 6 weeks. I have steady tremors in my hands, severe headaches, ringing in my ears, pain in my neck and shoulders, tingling in my hands and feet, blurry vision in my left eye at times, dry mouth, memory loss, loss of words when speakings and not being able to pronounce things as well. I have also suffered from horrible ear infections and loss of hearing the majority of my life. In fact just 2 years ago I had mastoidectomies, tubes in my ears 3x and sinus surgery for the issues. I know believe it was my Chiari causing the issues. My surgeon wanted to send me to see other doctors to see if they could help with the memory issues before surgery (he also wanted to just keep me drugged for the pain, but I'm a mother of 4 and a 2nd grade teacher), but my PCP and my Chiropractor, both of which I have been seeing for many years, have seen such a decline in my abilities and an increase in symptoms that they felt I shouldn't wait. So My NS said he would do the survey. He wasn't too excited to do it and really wanted to do my back first. Surgery is set for the 23rd which is in 2 weeks. I have felt all along that I was doing the right thing, but now I am starting to get really nervous and second guess myself. I have a few questions and I just need help figuring out what to do.
- 1. At what point did all of you know you couldn't wait any longer for surgery?
- * Are you glade you did it?
- * How much did your symptoms improve?
- * What advice can you give me to aide in a fast recovery?
- * Am I just crazy for jumping right into this?
- 2. How long were you really down before you could return to a somewhat normal life?
- 3. I need help with the hair situation... I have it cut in an A-line and chin length. What did all of you do?
- 4. Can I color my hair prior to surgery without a problem.
- 5. Advice on head covers for when I return to work. I just don't think I want to walk around school with part of my head bald.
- 6. How much time do I really need off from work? I have had to sit a lot this year so the kids are used to that.
- 7. I guess any other advice you can give me to help me through this. I'm just feeling very lost!
Michelle,
I'd be happy to answer all your questions, but first want to let you know my experience with Lumbar fusion prior to my Chiari surgery. My Neurosurgeon suggested doing my L5/L4/S1 fusion, bone graft and decompression surgery prior to my Chiari surgery and it was the best decision I ever made! The lumbar surgery was an easy recovery and helped with so much spinal pain it was unbelievable. I had my Posterior Decompression/Laminectomy/Duroplasty 6 and 1/2 months later. I couldn't imagine going through the Chiari with that much back pain. My Chiairi recovery was tough and it was a year before I went back to work (which I wasn't expecting...not even close)
My other suggestion is get a second opinion by a Chiari specialist! Very important!! I know your surgery is soon. Did your NS tell you why he thought you should do the lumbar first?
I'm at work right now so I can't answer your list, but will be happy to help with your questions when i get home later!!
Best of luck!
Monique
i cant clearly asna anythng bcuz i havnt had the surgery as yet but its a scary situation not knowin wat 2moro will bring…do i think ur crazy NO. HAVE FAITH AND GO WITH UR GUT…erybdy healin is diff so altho our fellow chiarians will be able to tell u abt thier experience…ery1 is different…ery case is different sooooo u will find that out wen u are on the road to recovery…i see my NS to set a date on apr 25th… y i waited so long??? im still unsure of the hlp i will get post-op. but darlin my prayers are with u and ur fam…u are strong u are a trooper and u have gotten this far. Hope all goes well.
I was and am still in somewhat of a similar situation. Best advice I can give right now though is to stay connected with this site. I've only been on it for a little over a week and I already feel so comforted and have had a lot of questions answered. These folks know what we are going through. I had a question mark pop up in my head though about some of your previous treatments... from what I've read from various sources in the Chiari field, all have led me to believe that chiropractic manipulation of the c-spine are to be completely avoided. On a few of the doctors statements and forum discussions I've found it also said that chiropractors can make a CM significantly worse. I would definitely look into those claims before you go back to one. I am by far NOT AN EXPERT on this stuff, but its at least worth an inquiry.
But as I mentioned before, stick close to this site and all your new friends here, we are all in this together, and I already feel comforted after only a week. Best wishes to you on your surgery if you chose to go through with it.
Thank you everyone!
Monique- I think the NS loves doing the back surgeries more than the Chiari's. He knows I will for sure have relief from the fusion and he can't guaruntee how much I will get from the decompression surgery. I plan on having the back surgery in June if all goes well.
Dizzy E- My Chiro is very good about my adjustments and he has focused on my back more than my neck. I trust him with my every being and I know he will not do anything to put the chiari more at risk.
Michelle,
I had a spinal expert NS do my lumbar and a Chiari/Brain expert NS do my Chiari surgery. It shouldn't be about what they like to do more.....if that' the case you need a new doc ASAP!! If he "doesn't like to do it" then don't let him! Chairi NS LIKE to do it becasue they are good at it! Sorry! I agree with Beeba. Still think you need a second opnion from a Chairi specialist. There was no way in hell I would have been able to have spinal surgery after my Chiari...not for at least 2 years I bet. I know you want to get it done, but you really need to ask all the questions....why spinal surgery before Chiari surgery? How many have you done? (for both surgeries) etc.
And it's true about the chiropractors..be careful!
Ok I took your ladies advice and I have emailed 3 other NS within reasonable driving distance. I told them my story and asked a lot of questions. I have already heard back from one, but unfortunately he no longer does surgery =( I also called my current NS office and asked a lot of questions too. The receptionist was so nice and she took them all down and is going to have the doctor call me back personally instead of trying to answer them herself. I am feeling much better already about all of this by just taking control of my care.
I have not seen my chiropractor for almost 2 months now and I am 100x worse than I ever was when I went to him. He has never don't harsh adjustments on my neck. His main focus has always been my lumbar spine.
Wanted to update you all. I heard back from the 3 offices yesterday and unfortunately they do not take my medical insurance =( I did get to speak to one NS personally and she highly recommended my NS. She said his bedside manner is horrible and that he is weird, but that I can trust his abilities. I then called his office and insisted that I consult with him or his assistant to have some questions answered.
He then called me about 6:30pm last night. He said he didn't realize how bad my head symptoms were compared to my back. That is why he wanted to do my back first. He apologized for his actions the day of my appt., so He did win some respect back by doing that. He is the only doc. in his practice that uses his its tissue to do the patch and not a donor tissue. He spent about 20 minutes answering questions for me. He has done thousands of these surgeries and he told me the very least he could promise me is I will at least feel 50% better than I do now and to be honest that sounds wonderful to me. The thought of just 50% improvement is going to be amazing!!!