Hey my chiari friends, I hope everyone is as pain free as possible…
I hoping to get dome advice and personal experiences… I will be seeing a headache specialist tiowards the end of Feb and I am hesitant to get my hopes up… Has any ever seen a headache specialist and if so how did it go??? What kind of treatments are offered? Did you get any releif from the treatment??
I was decompressed Oct 17th 2011 and had complications following…, I am more than 2 months post op and the constant headache is getting worse, not to mention everytime I cough or laugh hard or really just strain in any way, it gets worse… Like clench my head because it feels like it is going to explode… This is new, I didn’t have this type of pain when coughing or straining, rather I would “see stars” like bright flashes of light and the ringing in my ears got louder… I went to see the NS “not the one who did my surgery, a local one” and he said that everything looks good and he doesnt know why I’m having the issues that I am and he referred me to a headache specialist…
If this is my new quality of life, it’s not any better than before surgery… For every symptom that got better one got worse or I got a new one… I sure hope if u have had any experience , good or bad, that u will share it with me…
That is awful news. I haven't had surgery - I'm on the chicken side of it. Waiting until my symptoms become unbearable. I hope you find some type of relief because that is no way to spend every day - in pain and worrying about laughter and coughing.
Please keep us updated with your progress. I hope someone here will be able to give you some sort of answer that has worked for them in the past.
I will be praying for you!
~ Lori D
never been to a headache specialist but pain management has me on topomax (i think thats the name of it) it does help but, as all medications there are side effects. and one thing with side efffects is tingling in hands and feet. I hope you get the relief you need. Is this a neurologist you are seeing?
you are 3 months post op iam wondering if you need some more time to heal for the headaches to subside. Maybe when you get them try some heat or ice packs on the back of your neck.
One thing i did notice when i get one of those banger of a headache is the left side of my neck gets puffy and sore to touch and iam wondering if anyone else feels that as well-and if i put ice or heat pack there it does help a bit but if iam not careful(if its too heavy) it will also give me an upset stomach
have you noticed a pattern to your headaches? like for me i noticed that when the airpressure takes a sudden change up or down my head really is bothersome- always thought it was more due to the shunt tho'
That's exactly what my headaches were like before surgery. I know your pain on that issue. I haven't been to a headache specialist, but I sure hope they can help you. That pain is terrible. I took excedrin, it worked most of the time to dim it. It never took it away, but it was nice to have a small amount of relief. Please keep us updated on what the headache specialist says, and good luck!
I had my decompression on Oct 24th. I have a very good surgeon and the decompression (along with shaving down my C-1) was successful.
I too had complications! and my recovery was much slower than the surgeon said it would. He told me the I would be back at work 4 weeks after surgery (I am a manager for a grocery store meat dept and meatcuter as well- which is a very labor intensive/stressful job. I worked 50hrs week) PLUS I'm a pastor of a church. here in New Orleans.
The Surgeon kept calling all of my problems "Aseptic Meningitis" and loaded me down with percocet and steroids.
At one point I made when we were so frustrated with my lack of improvement and all the other issues I ws having I made an appointment with the Neurologist that diagnosed my chiari and referred me to the surgeon. Since all my doc are in the same network all he would do is send me back to my surgeon.
In December- my surgeon referred me to a Headache specialist which was really concerned about the percocet usage and had me wean myself off (which I did) and prescribed a number of other non-narcotic meds that she called "Headache Prophphilaxis" She also said that there is a chance I may always deal with headaches even though the decompression is complete.
At this point my surgeon has done all he can do- and is handing me off to the Specialist-and I like her though I've only seen here once, I think she has my best interest in mind and truly wants to help me.
Don't be afraid of the HA specialist, its a logical next step if your still having issues. Mine has a degree in neurology and obviously some understanding of chiari. They are more than just a the run of the mill "pain managers" they (so far in my experience) are really trying to help you- it make take some trial and error as far as meds that work for you. but let the specialist do his/her thing.
Its been a month since I saw her and 12 weeks since surgery and I am now been released to go back to work starting monday (light duty and only 4 hrs a day for now) but I get to go back to work!!!
I hope this helps, and you find the right Doc and they get you back on for feet and feeling like a million bucks!
Thank u guys for yOur replies! I’m terribly sorry it has taken me sooooo long to write back/…
Lori D, please dont be scared by how my story goes… From what I understand, most people have very successful stories… Unfortunately it is us who hasn’t had a great experience that are searching for answers on the Internet! Lol. Well the Ones with good experience are here too! Good luck with ur decision and I hope u are pain free…
Lisa W, I have been on topomax before too and it gave me worse headaches when I first started and. Then just cause the tingling, but oversize it didn work for me :(. I’m pretty sure this guy that I will be going to see is a neurologist and I try to ward off the bad headaches but it’s impossible… I do ice and heat my head, helps a little but not enough… I’m hoping this guy will be aggressive and want to get the show on the road… I also haven’t really noticed any triggers or cycles or anything…
Abby, thank u for your kind words
Raz, I did go to the nS and he said to me" I do brain surgery, I don’t treat hadachee so I have no clue why ur head hurts"… This is the new surgeon, NOT the one who performed my original surgery… I don’t want to seethat guy again, I’m still pissed off about all of this,
Mommy of 2, I’m not sure why, but excedrin has always made me vomit… I wish there was a Pill out there for all of us… I just don’t understand y the headaches got worse instead of better after the surgery…
Kenny, thank u very much for your detailed post… It does help that after a “successful” surgery that there was a pill out there for all there can be such problems to follow. Noe don’t get me wrong I am very sorry u still feel crappy and have a lot of pain but it does kind of maie me feel better… I’m not quite sure I can look forward to this appt just yet, still kinda pussed about how this has all Played out…
Thank u again everyone for your experiences and replies, they mean a great deal to me…
I know how you feel. I was decompressed Dec. 7th 2011 and now have headaches worse than before. I am going back to see my NS but also went and saw a local neurologist and he said if you had headaches for 6 months prior to surgery you can expect to have them 6 moths aftersurgery which sucks I havehad a HA of some kind for going on 7 months now would just like it to go away. Good luck
I have been to see two headaches specialists. The first guy told me I was depressed and that was all that was causing my headaches. He said that chiari could not cause headaches. As time went by I became paralyzed on my right side. I finally was sent to a good neurologist and she sent me to the Mayo Clinic in MN and I had my decompression. I was fine from the first of 06 until the first part of 08 and I slowly started to go downhill again. The first of last year I went to my pain management doc and he wanted me to see his headache doc. I finally said I would see him and he was not like the first guy. He was a nice guy and was one of the top headache docs in the country. He promised me that he could get rid of my headaches. I remembered what a chiari headache felt like and knew what it was. He tried trigger point injections, changed my meds, and tried numerous things but nothing helped. This last Oct. I was taken to the er unresponsive and my bp was bottomed out. I was admitted to the CCU and had tests run to see what was causing the bp problems. They did a MRI and my chiari had re-herniated. I am going to TCI on January 23rd. I hope the guy you see is a good doctor like my second headache doctor and not like the first headache doctor I saw.
I can relate to how you are feeling..i am 3 yrs post op and I finally gave in ,just today, and bought a cane b/c my balance is so bad..these falls are getting old and painful!!! Never mind dear hubby is laying the guilt on me..big time.
Personally,I don't have experience with a H/A specialist per sue ...I am dealing with a physiatrist...rehab /pain doctor.
He deals with the whole person and we are trying are best to deal with the injuries from the falls...as for H/A he does deep muscule massage..along with meds.
You could also try a neuro othomologist.....if you don't get relief from H/A doc.
Seems like lots of us take 1 step forward and 2 steps back....very depressing at times..but we will get through it together!!!
Let us know how you make out..praying for you.
PS: You should keep n mind that you are not that far along into your recovery....are you eating ,drinking and resting enough?????