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Chiari Malformation Community
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Avatar universal

Update, etc.and Question about Keeping a NS for life?

Curiosity-
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!  ;) )
5 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi Emme, I do consider myself lucky to have had a true Chiari specialist and if ever I need one again I fully intend on going back to him as I am confident in his abilities and liked him personally as well.

Having a GP that is willing to "go back to school" to learn how to best help you along this journey is also someone you want to keep....I found one and he has been my rock.

We have had several members go to PM post op...some were not aware of an EDS DX...some had leaks...others IH.....and some just had nerve damage due to a syrinx.

What state are you in again....sorry....I can not recall.

That is a true statement...the journey is not just getting a DX, or finding a Dr....but everyday we live.
Avatar universal
I think if you find a great NS, you should grab hold and not let go! Seriously though, I feel like there are a few of us that may need the attention of a different set of eyes. You should be glad you got away from this guy when you did. Seems to me he doesn't have an answer so he quit. I don't think that's any way to treat someone you've operated on. I was in that same boat paddling along with you. Good luck locating someone who will actually help you! And I'm cool with using the journey line!!
Avatar universal
Thanks Selma and Kerri. I live in AZ. I'm really struggling with daily overwhelming nausea,  such severe neck & base of skull pain (as well as my uninvited dinner fullest- the "brick"), tinnitus that's an everpresent reminder that things are screaming "off" to me. My vision (I wear  glasses-but there's been such a drastic decline -SO blurred that it's almost hard to believe...even my glasses don't really help. There's an element that the glasses DON'T help/correct).
I could go on, but won't...it's just too much. And the fact is, that stating all that's going on will not change the fact that as of right now, I'm at a standstill. Waiting. I'll see what my NL says..as she wanted to look into any NS in state/close by that is a specialist in Chiari, who she feels she can entrust me to. She too is very disappointed how my NS left me hanging- without willing to say "let me find someone who can".
So...I sit waiting and...feeling so ill. I'm trying to just pretend/convince myself that perhaps I'm just still healing and that's why I'm not well..5 months in. If I don't "pretend", I think I'll lose my mind. I tired of crying.
I look forward to a day that I have a Dr. that knows more about Chiari and all related conditions than I do, a NS that WANTS to know Chiari. To have that surgeon & expert in my back pocket (as it seems to me, that especially once we've opened that "box" , we need to keep a trusted NS in our lives.
Thanks for your responses to my always too long posts :/
;)
~emme~
620923 tn?1452919248
COMMUNITY LEADER

  Emme....the closest Dr I am aware of is supposed to retire and I do not think he is taking on new patients....so, that is not an option....

I know there are a few in TX but I do not have any first hand knowledge of them....but a few members have been to a few and were happy with their results.

Outside of a plane ride across country, I do not know what to suggest. But it may be what you need to do at this point...just to feel better.

I know from my own experience it took time for me to heal...and I had ups and downs and a visit to the ER....but I did get better and with each yr that passed I noticed more benefits from the surgery....I am getting stronger all the time....I am better now then I was last yr at this time....so it is possible .

16744917 tn?1451270439
My ns is in Dallas TX and he has people fly in from all over the United States. I can not wrap my head around the fact you may be living with a spinal fluid leak. I can say from experience it's debilitating and mine wasn't noticeable like your brick. I would think whoever ordered the mri that showed possible leak didn't follow up is seriously crazy. You would think they could be held reliable for having a patient that they didn't follow up for with additional testing and fixing the problem. I am just so shocked by your situation. I did message you the other day, hope you got it. I am beyond happy you have an awesome pm doctor. I myself have not been to pain management since my dx or surgeries. I do hope your situation gets better. Once the brick is fixed I feel your life will greatly improve!! I am hopeful for you
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