Last week I had 4 "bad days" with three of them being this entire weekend. Up until this point, I had had no more than a day here or there that were challenging...and those I just chalked up to the "healing process." Having three days in a row (plus today's not a lot better) is scaring me. I went ahead and called my NS office today to ask when I should be concerned. I wasn't supposed to have another scan until August 2014. My NS is out of the country for a few more days. The lady who I spoke to on the phone encouraged me to start taking my muscle relaxers again on at regular intervals and she's calling in Fioricet for the headaches (previously I was never prescribed any headache meds...just relied on tylenol and advil rotations). She thinks based on my symptoms that the NS will want to move up my scan. She'll have to check to see if my insurance will cover it this soon. I could use some encouragment/wisdom as I'm struggling with fear at this point. I'm not bedridden or in bad enough pain to go to an ER or anything...but this is how life was before surgery...slow worsening progression.
Nancey,
I can relate, it’s hard not panic! I would give it some more time before you decide things haven’t worked out. Did you do a little extra activity recently? Have you been upset or particularly stressed out before this new onset? I’m almost 9 months post op and still take a muscle relaxer daily- it helps with the headache for me. Are you having heart palpitations? Is it just the headache or other symptoms back too?
I don't know if they are "heart palpitations," but I do keep feeling like my heart is pounding hard. When I check my pulse it's usually in the 80's instead of the 60's. Why do you ask about that? Headaches, valsalva pain, neck pain (to the point that it feels bruised when I touch it), eye pain, jumbled words, "fuzzy brain," fatigue is returning, overwhelmed feeling when shopping. This is my stressful time of year at work (I own a retail and online toy business). :) It's just been about a year and a half since my Chiari diagnosis...so I'm just not sure what to expect as "normal" at this point.
I was asking about the heart palpitations because I developed dysautonomia after surgery, some of those symptoms can feel like Chiari too including headache. Just throwing it out there. I hope this headache goes away soon. If it doesn’t and the other returning symptoms stay then there other things to look into like EDS and instability, and dysautonomia. Also, if I get stressed out or upset I get a flood if Chiari symptoms.
I'm a year post-op and a few times during my recovery I've had setbacks that kind of worried me but thankfully they pass and I go back to my new post-op normal. I do notice that more symptoms seem to pop up when I'm under the most stress or when it's "that time". Hopefully this is just a normal part of the healing process for you. I'm glad your NS office is taking you seriously and offering help!
Thank you both so much for your replies. It is so helpful to have someone to talk to in this journey of the unknown.
I had read about dysautonomia not too long ago...I do have several of the symptoms...wonder if I should get checked for it...it there much that can be done to help it?
I have had a lot of those days since my surgery and this recovery is very hard,it is up and down.There will probably be more of these days,just try to take one day at a time.My surgeon has told me that the recovery time can take up to three years.I’m sure you don’t want to hear this no one told me that this recovery would be so long in coming.The NS has dx dysautonomia,I’m hoping still that some of these symptoms will improve as time goes along.I understand the fear that comes when things have gone backwards,it is the way the brain heals too.This is not like any other surgery I’ve been through.The full effect to the symptoms just take so long,just know you have friends here who understand how long this road is.There’s not a cure for chiari only the decompression treatment and that’s what it is.Keep us posted,I’ll be praying for you.
Yes, there are meds for it, my meds have me a great deal with side effects.
Hi friends,
Well, it's been about two and a half weeks since I've started having the increasing symptoms I mentioned in my original post. Yesterday I had a small emotional melt down as I just feel overwhelmed and unsure of what to do next.
When my NS called back he said that a scan only two months after my last one wouldn't show any major changes and advised me to see my primary care doctor. Argh! I've continued to take the Fiorcet and the muscle relaxers around the clock...they do help with the headache and neck pain. They do not help with my other symptoms and if I'm late in taking them I pay for it. I am going to talk with my primary today because at least she listens and cares...the only neurologist I saw was a joke and the rheumatoligist was even worse. I'm going to ask her about dysautonomia. In fact I'm going to print out and highlight my symptoms in hopes for it to be more concrete. I don't really think she'll have the answers, but sometimes along this journey she's been able to order tests I needed and such.
I really appreciate all of you who mentioned that you would pray for me. I've been asking for wisdom to know how to proceed.
Nancyejane,
I understand why you had a meltdown- it’s devastating to have this after surgery and I’m so sorry. I’m glad you are moving forward with the dysautonomia symptoms, but also please look into Ehlers Danlos Syndrome. I was doing well post op until about month 4. I got the usual Chiari headache I’d had before surgery but worse. I was literally in bed for 6 days. My NS was not interested in a new MRI either, but he did suggest I start wearing a soft cervical collar. After a day or so the headache lifted and I have been wearing the collar since June. I’m telling you this to point out how EDS can cause the same symptoms as Chiari. EDS causes ligaments to become lax and stretchy. When the ligaments that hold your head onto your neck stretch, it can cause abnormal movement in the joints causing cord compression all over again, just like the Chiari. I’m going to see another Chiari surgeon who deals with the “failed” decompressions due to instability about this in a few months.
Some of the wise ladies on this site told me something that made me feel so much better when I was having my own meltdown about this… Think of your Chiari more as a journey, you have taken some of the necessary steps already but that doesn’t mean you have reached the end of the road.
Jenn
Thank you Jenn for your kindness and your wisdom. Previously when I had looked up EDS I kept thinking that I didn't have much of the described symptoms...my joints aren't that flexible and my skin isn't that stretchy of anything. BUT, what you're mentioning concerning just the head/neck does make sense. I wore a soft cervical collar for a stint last year after ending up in the ER with pain they said from a bulging disk. I will bring this up today also.
I have definitely been reminding myself that there is not a cure for Chiari that the surgery was a treatment and that I may need further treatments.
Again, thanks so much for the quick reply full of compassion.