Chiari Online Support Group

Updates/experience story/Success after surgery


#1

I responded to a post yesterday and was asked to post as a general discussion topic as well so that others would have a better chance of seeing it. I know first hand how scary the diagnoses, frustrating it is to go to doctors over and over with no real plan to fix it, and the freak out before surgery but after it was all done I would do the decompression surgery again. But here is the post...

I haven't been on the board in a long while but logged in for whatever reason today and read this. Almost a mirror image of what I was going through. I also had issues with my legs and somedays made it very hard to walk they initially tested for MS because I hadn't had any trauma but had pain in all of my limbs headaches and random pain all over. I did have an MRI of my brain with contrast that did show some white matter that they couldn't really explain but thats when they found the chiari with syrinx as well.

So from then on I was referred to a neurologist (1st one was arrogant and a total jerk, made me cry at my first appointment) he gave me some meds, did the nerve testing in both arms (EEG I think) they stuck needles in my arm about 1/4 inch and then shocked me to see how long it took the signal to travel down my arm (most painful test ever that told them nothing) and referred me back to my pcp for follow up said nothing was to the point that he would recommend seeing a neurosurgeon yet.

I followed up with my pcp and asked for a new referral to a different neurologist and went to see him. He was fabulous drew me a picture of what my head looked like and what a normal head looks like and then referred me to a neurosurgeon just to get a baseline consult to monitor it. Then I went to the neurosurgeon who I thought was going to just tell me we'll monitor it and go from there but to my surprise sat down pulled up my MRI and said this is what yours looks like and I would have recommended operating at this point, (pointing to the part at 5mm) as you can see your beyond that point about 9 mm. So I would recommend that you get with my assistant and get scheduled for a decompression surgery. I was caught off guard a little bit but I think I wanted to hug him because after a year of doctors and tests and medication there was finally some hope to get back to normal.

I had Surgery June 30, 2014 and surprise surprise my leg issues were almost immediately resolved (even though they told me they were not related), I continued on meds until October of 2015 and have been med free ever since. My neck is still really stiff at times and I still have bad days but they aren't in any way even close to the bad days before surgery.

The last MRI I had was also in October 2015 and the white spots are no longer there and the multiple sphinx are now completely gone. I still have to go for yearly MRIs to monitor scar tissue and make sure everything stays where its supposed to be. The bad days now are about the same as the good days prior to surgery.

I would recommend getting a second opinion if your issues continue and do not let them tell you for one second that leg issues are not related. There were days that I literally walked like I did have MS had to hold myself up on a shopping cart and literally drag my feet on more than one occasion and since I had surgery have not had those issues at all. They told me it was not related as well but it mysteriously resolved when they did the decompression surgery.

It definitely takes a toll on your life I could barely function when I got home from work I would literally walk in the door and lay on the couch. I have 2 children and most days it was extremely difficult to push myself to get everything done. Before my surgery I was only working from like 10-3 for about 8 months and luckily had a boss that was understanding enough that let me go home when I got tired and my pain levels were high.

It definitely took a toll on me depression, frustration, exhaustion, constant pain are things a lot of people can't understand because they can't physically see it and haven't gone through it themselves. It was a weird pain to explain and it was constant all day, everyday and pain is physically exhausting. The pain I had was like a tingling burning sensation in both my arms for hours and hours a day sometimes all day. The best explanation I could give was it was like that feeling you get on one of those like trick lighters that when you push the button it zaps you and you get the jolt down your arm but was as if you held it for hours like that everyday and nothing relieved the pain.

Hang in there and if you aren't satisfied with answers you get, go with your gut and request a second opinion. My second opinion made all the difference in the world. Good luck to you. I'll keep you in my prayers.

P.S. Always tell the doctor how you feel and if you aren't getting anywhere ask for a specialist or just annoy them until they believe you I had issues at the beginning because they thought I was med seeking. I literally had to flip out and just tell them they were nuts that I wasn't even taking as much as they prescribed because I didn't like how I felt. I just want them to fix me and finally we started getting somewhere.

To add one more thing: Get a binder (My Medical): make sure you get copies of visit summaries, reports, MRIs on CD, all blood work for everything. Request it at your appointment that day then you can avoid the charges of medical record copies (you re entitled to the copy of everything at your appointment free of charge. They can charge after the fact. Keep it all in a binder, in date order, it eliminates having to redo tests or wait on results. They'd ask me if I had this test or that test and I'd hand them my binder it spread the process up and I still keep that binder updated every time I go for a test or a doctor's appointment I get a summary and add it to the book then if I ever see a new doctor I have my entire medical record right there. Its ridiculous to most people but when you go for so long without answers and change doctors it makes life so easy. Plus saves money in copays and testing.

Any questions feel free to contact me.


#2

Thanks for sharing this with us! :)

It's so nice to hear about the positive outcomes! It's great you had such an understanding boss when your symptoms were so bad.

I'm keeping all my medical files in a binder too. When I changed my family doctor and the new doctor asked for my medical history, the previous doctor just wrote a short recap which took out about 1/5 of a small A5 size form. I'm just glad I kept some of my copies from when I was ~16 years old. The best part of it is, I kept my MRI images intact. If i hadn't, most likely noone would have figured I had Chiari.


#3

Thanks for sharing and inspiring others with your success story and tips.


#4

I wish I could update you all with a success story. Alas, I can’t do that…

I had decompression/laminectomy/
duraplasty on July 21st, 2014. I had an 8mm herniation and 100% blockage of CSF. Initially I felt great for the first three weeks after surgery. Since then, I have been getting progressively worse. The only symptom that went away and has never come back is the vertigo, everything else is worse now than what is was before the surgery.

Other than the two weeks post-op, I have never taken time away from work. I refuse to let my CM get in my way!

It’s caused chaos in my personal life. My [now] ex-husband filed for divorce because he didn’t sign on to having a sick wife. Wasn’t fair to him, he said. I’ve essentially been on my own since last summer.

I’ve relocated from Cleveland to Philly and I’ve been relapsing ever since. I still work full time (lead surgical tech at a local humane society) and try to lead as normal a life as possible.

Although I know that I’ll never be able to get on the ice ever again…I figure skated and played hockey all my life…I still try to enjoy my hobbies. Although, I do need to use a ski pole for when I’m hiking with the dog.

I’m meeting with my new GP on Monday. My last one was awesome, she did plenty of research and gave me referrals to great specialists. She gave things to me straight, respecting that I have medical training. I can only hope that this new guy will be as good.

As far as I go, I simply refuse to let my CM rule my life. Yeah, I’m in pain ALL THE TIME, but I will not be beaten!


#5

2 weeks post op you went back to work?

After my surgery I was out for 8 weeks only because it was doctor order I wanted to go back weeks before that. I even asked if he would clear me to go back to work and he said absolutely not you may feel ok but those muscles and incisions need time to heal properly and standing or sitting all day will strain those muscles and cause them not to heal correctly. I was told to either sit in a recliner in a reclined position or lay down at least half of the time I was awake and make sure my neck and head were well supported. I can’t imagine going back to work that soon. I say I was probably feeling well enough to back about 6 weeks where I wouldn’t have had to push thru the day. It was so boring being home and I was begging my office to give me something to do from home but my neurosurgeon was dead set on the 8 weeks before I went back to work.


#6

I was up and walking around only a couple hours after surgery. I couldn’t stand the urinary catheter, so I pulled it myself. Then the aides weren’t coming to help me up to go to the bathroom quick enough, so I turned off my bed alarm, unhooked myself from the monitors and used my IV pole as a walker and wheeled myself to the bathroom, lol.

I got NO instruction after my surgery. No rechecks, no follow-ups, nothing!

In fact, there were still sutures left in after my staple removal. My coworkers actually bent me over one of our surgery tables and took them out.

I’d say that my experience is out of the norm. I really didn’t have much choice about my activity level post-op. My charming [now] ex-husband was beyond useless. The day after I came home I had to walk the dogs cuz he wouldn’t. 200 lbs of Dobermans three days after brain surgery.

And I did drive myself up to Dairy Queen cuz I wanted ice cream! Lol


#7

Yes thank you for posting. No one understands unless they are going through it. It’s nice to hear others stories because you feel validated in what you are going thru. I evidently was born like this and suffered minor affects in my early years that my parents and doctors took as behavioral problems or laziness. My fathers solution was to beat my butt. I am 57 now and had an accident 15 years ago that made the problem worse. I have had a spinal, a shunt surgery and am now scheduled for chiari surgery in less than 2 weeks. Knowing I wasn’t crazy or lazy all these years has made me feel like a new person. Thank you again.