Once you've had this surgery, is it best to always kee a NS that youTRUST, is a Chiari specialist & have established care with, for the rest of your life? Like...Selma, or anybody else, if something happened, do you have a NS that you already know, knows you & are "established" with that you would go to if you suddenly needed to? Is that a kind of "must have" in your back pocket for life?
It's been in my mind, as I hunt now for the RIGHT one, a true Chiari specialist that I do need to find that's I pray is it too far, as I don't have the means to travel across the U.S. to do so. That's a problem. But anyways, it's made me wonder, if those of you who've had the surgery too, especially spanning over the years, if one needs to find & keep their NS in their "back pocket" for the "just incase's"?
Thanks y'all as always.
Update-"brick" is just as heavily there as it has been sunce day one. Unfortunately, no progress is FELT...as of last CT, it still reads as "collected fluids suggestive of a CSF leak". Comparing orevioys CT's, is HAS reduced by the fraction of a mm, and that is a win for me, but my God, it's a nightmare I didn't ever anticipate. The pressure at the base of my skull, just where skull meets soft tissue, is...great...greatly overwhelming! Tinnitus and the thick, dense, distorting to the senses cotton brain is ever present. Migraines have increased, but I do know there's a difference between the migraines and the headaches I got that were Chiari headaches. (And the Sumatriptan Nasal Spray nips the migraine away in less than 20 min. So, I can't put those in the Chiari bucket). Left side tremors still, elevators are now my nightmare(makes the vertigo worse...I walk like I'm blind after a ride in an elevator- there was a time I LOVED the sensation of elevators, planes...Merry-Go-Rounds-not that I've even had the chance of going on a merry-go-round, but the thought of it is "woah...nooooo". I'm trying NOT to put all my sx in the Chiari bucket unless I DO know... Just as I saw my last 2 thyroid results(blood work), and they're both so drastically different- but both being in need of adjustments whichever one is my true result (I think a 3rd is necessary). Point being, I don't want to claim Chiari sx until I know I've ruled out the other culprits.
I'm getting injections now though...in the back of my head and neck. Occipital Nerve blocks and Trigger Point injections. I was referred to a PM specialist-but given my last experience w/ a "specialist", I did my homework and basically researched the heck out of a few Dr's I felt had good true approach to pain. Well, I certainly feel solid in his hands. Even he questioned me about if my NS was a specialist (Chiari). When I told him that my NS said he had 1 Chiari patient a mo., my PM Dr. said he didn't want to sound disrespectful, but that he highly doubted that were true. He said that in his 25yrs. of being an anesthesiologist here in Tucson, assisting at the hospital I had my surgery, I was only the 2nd Chiari patient he'd ever met. And actually, I'm the first Chiari patient (but there w/him for treating the pain) he's ever had. He said that he was "going to go back to school", meaning he was going to study up on Chiari himself, to learn further that the basics he already knew. He wants this to be a "team", together, to at least be able to manage the pain. He spent over 2hrs. at my 1st appt. (I was under the assumption that PM Dr's are quick, have no time, don't want to know anything about you, brash, etc.-not this guy-he even wanted me to know him- his hobbies, life, education, his grandchildren, etc. he was... an open, honest, personable, calm, through Dr. & that was refreshing. Very happy I researched the heck out if the top 3 & went w/him). Anyways, he went over EVERYTHING in my health history, he explained that especially w/trigger point injection, they may not work well on me due to the EDS. And..I did get them...to no avail. I wouldn't be able to even say I felt one luck of difference. It was...absolutely zero change. Sadly, the same w/the Occipital Nerve Block..the only relief I got-was the relief of having my head numb for about 8hrs. the day of the injections. I see him again March 1st & March 8th, to discuss next steps(try a few more times?). The right side pain I do not think is nerve pain. However, the left side electric shock/lightening bolt pain I DO think is nerve, so I'd like to do a ONB (occipital nerve block) on left side, that I DO think would help. But the right side, where painful "brick" is, I do not think its a nerve problem only/the real issue. It's a brick problem. So, I'll continue to try these injections to manage the pain... (and I know I'll cry like a baby again when it's done, as I still can't handle the thought of needles, let alone them going into the back of my head&neck-neck not as gross-but injection in head is just wrong &gross!!! Funny, coming from one, like you all, who's been a pincushion, a lab rat, cut open, all that-still NOT ok w/needles!)
So.....basically...no change, other than I've a great PM Dr. sho is...willing to know more about Chiari- even though he just treats pain- because "as your my patient, I need to know this major condition and all it comes with". I found that refreshing to hear.
Has anybody else had to undergo PM after their surgery? Do things like ONB injections/trigger point injections? Lingering pain that's not managed by OTC pain relievers, PT(physical therapy) , a TEN's unit, acupuncture, etc?
Still in process of looking for a NS that's somewhat nearby...I just can't fly all over U.S.... :/
As Kerri said in another thread, and I found so to the core true...the thought is that the journey is getting through the surgery. But, have discovered that the journey, this road keeps getting longer and longer! (And I did kind of paraphrase what you said Kerri...I hope you don't mind my using your truth & wisdom there! ;) )