Chiari Online Support Group

Dr. John McGregor


#1

This is the neurosurgeon I have been referred to. He is at OSU Wexler Medical Center in Columbus Ohio. I have looked into him and I see nothing he has done with Chiari… although the receptionist I spoke to said he is very well known and that is why he is booking out till March and April… she said he has had many patients with Chiari and they have all stayed with him for years! So, I am not sure what to think… Do all the Chiari doctors book out this far? She said once I am established my appointments won’t be booking out that far out. It’s hard to manage these headaches on my own now, and I just want to cry, how am I going to make it like this till then?! I just want answers and help with the symptoms, I want to avoid surgery at all costs! Thanks and sorry for the rant in this thread… just looking for some insight.

Rachel :purple_heart:


#2

Took me a couple months to get into my Neurosurgeon for my first visit and then it was easy to see her. I am in Washington State. She is considered a Chiari expert. It is one of her primary focuses. He has great reviews related to Chiari online. https://www.vitals.com/doctors/Dr_John_Mcgregor/reviews


#3

Oh my gosh thank you so much! You just lifted a weight off my chest!


#4

In order to save yourself some wasted time, you may want to confirm with Dr. McGregor’s office that he provides non-surgical management.

Specifically, you are going to see a neurosurgeon in order to “avoid surgery at all costs?”

I know many patients feel that they are getting the run around but understand that MDs are focused on what they are trained in. A neurosurgeon focuses on surgery. A neurologist focuses on medical management for head-aches.

You may want to check with your PCP and see if there is a neurologist who could help begin medical management prior to your visit with Dr. McGregor.

I have no personal knowledge of Dr. McGregor but, in my practice, we don’t see Chiari patients without review of images, symptoms, and ideally neurological treatment, to confirm they have achieved maximal medical management prior to consideration of surgery(which, again, is what the neurosurgeon typically focuses on).

I hope these thoughts are of some guidance.


#5

Hi Rachel:

My only comment is to ask Dr. Mc Gregor how many Chairi surgeries he has performed. I know Dr. Greenwho saw my son performs between 3 to 5 per week


#6

@Dr_Trumble, Thank you for your response! Before Dr. McGregor would see me I had to send him all reports and images. He has agreed that I do have a need to see him and he also knows my wishes to treat as conservative as possible. Again, thank you! :blush:


#7

@PeterK thank you for your input! I did just as you said and he was actually in surgery with a Chiari patient when I called! His receptionist said he does at least one surgery a week on a Chiari patient. I am anxious to finally meet with a doctor that actually knows what he is talking about!


#8

I am glad he can see you and understands your desires. My Neurosurgeon was fabulous and she understood that surgery was the last thing I wanted to happen and she supported that and worked with me in discussing all my options and initially I was not going to have the surgery. However, I developed 2 syrinx. One became alarmingly large in addition to have total blockage of my cerebral fluid. She was thorough and thoughtful at that point in explaining very carefully and clearly all my options. I also was able to speak with current and former patients of hers. Not all Neurosurgeons require or expect surgery. A good Dr. will listen and support you in your journey and decision making.


#9

Dear MrsStevens,

Yeah - a good “Chiari Decompressor” neurosurgeon is well worth the wait. I had to wait 6 months to get in line for decompression surgery with my neurosurgeon (Dr. Michael Rosner - takes Chiari patients from around the world.). I was actually supposed to wait 8 months - but Rosner’s office asked me, “if there is a cancellation at any time, are you willing to take their place?” I said, “You bet!!” That’s the only reason I had to wait only 6 months instead of 8 months. It was the longest 6 months of my life! :disappointed_relieved:

I must be in a different camp when it comes to surgery… I was rejoicing so much when I found out (after 10 years of being misdiagnosed) that I had Chiari’s and “It could be fixed with surgery.” When I heard the word “Fixed with Surgery,” I burst into tears with joy! I was in such extreme agony - I was willing to take surgery at the drop of a hat if it meant any chance at all for relief!!! Of course, I was very much at death’s door anyway. Seriously. The compression of my CNS was stopping my heart and my breathing on a regular basis. Living was pure terror. :persevere:

Maybe some Chairians are not that severe with their symptoms. I don’t know. But to me, it seems like Chiaris Malformation is like the cork in a wine bottle. The cork blocks the CSF, squishes your brain stem, squishes your spinal column, smashes your cerebellum - and can only get better if that plug is 'de-corked." That is… surgically removed. I went 10 years trying to see dozens of docs who tried dozens of medicines. None of the meds worked - 'cuz my CSF was blocked up. Meds either didn’t get through or built up in my brain resulting in massive panic attacks. Prior to Chiari symptoms, I never even took an aspirin. Now, I am surprised I have any brain left after all the chemicals I stuffed into it during those 10 years. And actually, my Chiaris was found by total accident. I was seeing a Chronic Fatigue Specialist, trying to get medicine for treating a retrovirus - one of the many conditions for which I was misdiagnosed with.

For me, decompression surgery has been the only thing that finally offered relief. Because I’m older - and went 10 years after symptoms manifested themselves - I recovered 75% post surgery. But, I thank God SO MUCH for even that 75% 'normal" which I never head before surgery! :heart_eyes:
Bethr


#10

Hello there!

I am so glad you finally got the help you needed! Up until yesterday my headaches were everyday but tolerable. I get a lot of numbness and tingling in my hands, arms, legs and feet… something I can deal with. Neck pain, has been the one thing that has impacted the most. Now, yesterday and today my headache has truly been excruciatingly painful and hard to manage. I was in bed all day and most of the night last night (yay for New Years) and today I haven’t been able to move much from my recliner. If it continues to be like this and surgery promises relief then I will be more open to it. I truly feel for everyone in this group, especially the ones who endure this pain for years upon years! I am again so happy you are feeling that much better! What a relief!


#11

I am so glad you are feeling better. I too was mis diagnosed initially and was treated for Lupus for over 7 years. By the time I got in to see a top Chiari Specialist in the US, I was in a bad way. I had severe Afib, and could hardly move. My surgery, now over a year ago, was such a relief. I would say I am pretty much symptom free. Every once in a while I get a mild pressure headache with a severe weather change, but my life is back to what it was prior to the Lupus Diagnosis. I too liken it to a Champagne Cork~ . I am back to running marathons, Crossfit and Yoga.


#12

Dear runnergirl,

Yeah, I concluded that - due to your screen-name - you were an athletic sort. Before I started to manifest severe Chiari symptoms (in 2002), I was a very competitive runner. I never entered a “fun-run” for fun. I entered to come home with a prize. In High school, I was a state champion in Track and Cross-Country (mainly because in "74, it was the first year Idaho offered girl’s CC events statewide - and no one else was running, yet. :smirk:
In college, I qualified for Nationals in the 5K - but by the next competition year, I got a foot injury 'cuz I couldn’t afford new shoes. Then, in the 15 years before Chiari’s, I managed PRs in 5K: 18:30.0, 10K: 39:42.0, 13-miles: 1:32.0, and the marathon: 3:10.0. And then, Chiari’s took it all away. From 2002-2012, I went gradually paralyzed and brain dead. Extreme pain and agony every day! I can hardly believe I endured those years! :persevere:

Right after my surgery in 2012, I started making myself go out for walks. It was so hard to get my legs to “listen” to my brain at first. But, I kept at it. I think the competitive spirit helps give ourselves the “kick in the behind” even when we don’t feel like doing it.
Needless to say, I kept pushing the walks. In 2016, I entered my first race walk at the Senior Olympics (I’m old enough for that, now.:yum: In the 5K, I got disqualified, because I didn’t do the technique right. Thanks to coaching myself! I sure THOUGHT I was doing the race-walk technique correctly! I’d consulted the internet and all. But - I was so wrong! After the 5K race was all done, consulting with the head race-walk judge right there on what exactly I had done wrong, Michael Roth gave me a “3-minute clinic” on exactly what I did to get disqualified. I had no idea! After that little lesson, I went and got 3rd place in the 1,500 meters that afternoon. And, DIDN’T get DQ-ed!!! Yay! The judge even congratulated me afterwards for learning fast. All I know is that I wasn’t too motivated in embarrassing myself again.

I do rather miss the running sometimes. It was a lot faster than race walking. And, the chances of getting DQed are there with race walking - but not with running. The stress of maintaining proper technique AND trying to go fast at the same time are rather hard for me. My legs and brain still have occasional issues talking to each other. Especially on my right side. Sometimes my right leg just won’t do what I want it to. But, I am so ever thankful to God for allowing me enough healing that I am 1) back on my feet again, and 2) able to do competition in track!

I still have Chiari issues getting in the way of 100% fun, though. Because my Chiari “brain-squish” wasn’t diagnosed for 10+ years, I do have permanent brain stem-spinal cord damage. That means for me, every 4th day, all my old Chiari symptoms - paralysis, brain-deadness, pain, etc… returns for 24 hours. It’s so freaky weird. For those 24 hours, I am a virtual zombie. Can’t do anything but lie on the couch and be a vegetable. Then… voila… once those 24 hours passes, I return to ‘normal.’ It’s during the following 3 days that I can race- walk as fast as I want.

That means, I have to make sure I find a race that will fall on any one of the 3 normal days. And, that’s why in 2017, I missed NC’s State Senior Games track meet - because they moved the track meet up a week, and the meet fell directly on one of my 'Crash" days. Even though I had qualified for the state meet (In NC, there are apparently so many senior folks, we have to qualify for the Fall state meet at the county level in the Spring.) I couldn’t compete at state because I was a vegetable on that day. Grrrrrr. Chiari’s got one up on me that day.

So, instead I entered the State level Senior Games in another state! I found out I could do that! Senior Games are not that strict. You can jump states if you want (except for Tennessee and NC. Those are two ‘closed’ states. Hmmm.) So, in October, I jumped over to Utah . The Huntsman World Sr. Games track meet covered 3-days - so no matter what, I would be normal for 2 of those days! It was so fun! I entered the 1,500 meters and got a silver medal! (10:42.45) There were some world class - former US Olympians in the race who smoked me by minutes… but it was a learning experience. I have to constantly chastise myself for comparing myself with such world class athletes. They have not had to deal with constant Chiaris - and, they are just wonderfully talented athletes! I have to remind myself that I am so blessed just to be able to WALK again! And, if I can walk fast - that’s extra kudos! (The competitive spirit wants to always rev up and demand prizes :roll_eyes:

I’d love to hear where your running exploits have taken you. Any road races? Are you in a part of the country where they even offer a plethora of road races? (I’m in the South - which is not an athletic culture. The entire road infrastructure does NOT cater to runner/walker/ bicycle training. Downright dangerous, even! Can’t believe how many times I’ve nearly been run-over. And, it’s hard to find race walk events except via the Senior Games venue)

Sorry I got verbose. It’s the morning - and my brain is spunky in the morning. 'specially after a mug of coffee! (I hated coffee before decompression surgery. Then, after surgery, I LOVED coffee. What’s with that?!?!)

-Bethr


#13

I was never a competitive runner. I didn’t start running until I was in my 40’s. I joined Team In Training and got the marathon bug and have been a marathoner since. I had to stop when the Chiari symptoms got too bad and during recovery. I live in the Pacific Northwest where running is prevalent. we have trails galore. I do both trail running and road running. The half and 25K are my favorite distances. This summer will be my 9th Ragnar Relay. I am far slower than used to be, and I was never a fast runner. I ran because I could and for what it does for my mental well being. I also kept running to keep my “lupus” at bay. It seemed to help alleviate symptoms until I developed 2 syrinx. That is when I had to stop and when surgery for the Chiari became non optional for me. I have 2 half marathons in May, a 25K Trail race in June, Ragnar in July, a 25K in August, a half in September, half in October and then some random winter 10k’s. I find if I register, I have a goal each month and keep on going. It helps too that I have a group of amazing friends I met through Team. We have been running together since that first event. I love where I live. It is an incredible community with so many outdoor options. I have biking, swimming, hiking, running, snow shoeing, skiing, kayaking, etc all right out my front door.


#14

did you have pulsations in your head? due to the blocked csf fluid


#15

runnergerl,

You are definitely blessed to be in the Pacific NW when it comes to athletic opportunities! I do miss that. I grew up in S. Idaho - and loved moving to Boise where there were road races all over the place. I also miss the roads with very wide shoulders you can run/walk on and not get run over. I miss the foothills where you could get scenery and no traffic whatsoever if you wanted to. Here in the South, the roads were originally designed for horse & buggy width - and within the last decades, they never bothered to widen ANY roads for modern day vehicles. Your average SUV, truck, service vehicle, doesn’t even fit on their side of the road. And, there are no shoulders whatsoever. Maybe 1-2 inches of ‘shoulder.’ When I go out for a walk on the ‘country-road-turned-state-highway’ just outside my house, it is sheer terror until I can get to the closest REAL country road a quarter mile away. The ditches on the side of every road are very steep and designed only to catch downpours of rain. I’m afraid I’ll twist my ankle stepping off the road. Another lady my age actually did break her ankle recently - simply stepping off the road into these ditches to dodge traffic. No. The roads are not conducive to exercise around here! That’s probably why when I entered the 5K and 1,500m race walk at the Senior Games county level in Charlotte, I was THE ONLY COMPETITOR! That’s one way to win, I’ll tell you that!

But, I’ll never forget how Chiaris messed with my running. Back in 2002, I started getting dizzy when going for my morning run. Ever since 1973, I’d always gone out every morning for 4-10 mile run. That was my ‘cup of coffee.’ The run would wake me up and, like you said, for ‘mental well being.’ I think I was (maybe still am) addicted to running. If I was unable to get a that oxygen overload from a bit of anaerobic running, I got fidgety. Muscles would cramp. Couldn’t focus on anything. The longer I waited in the day to go for a run, the more restless and irritable I got. I think that’s signs of addiction. (?!?!?)

Thing is, all that changed when Chiari’s started to manifest symptoms in 2002. The daily runs no longer made me feel any better. In fact, they started to make me feel worse - like getting dizzy after a mile or so. This disturbed me something awful. So, I tried to run even harder - thinking that exercise cured all ills. Still, I kept feeling worse and worse. I did try slowing down to do some power walking stuff instead - mainly because I was starting to lose muscle function all over. Wow. Chiaris is so scary. Especially because it went undiagnosed for 10 years. (I was 42 when I started getting symptoms.) I had no idea what was happening. I recall that between 2008-2012, I never took a running step. By then, I was nearly a total vegetable. I was just a shell of what I used to be - totally trapped inside a dying body! Freaky stuff!!!

That’s why it’s so much glorious fun to be able to’hoof it’ again! You are so lucky to have found a group to run with. I always had the most fun when I was competing on a team (I was on BSU’s first women’s CC team in 1978.) That’s why this year, I’m seriously thinking of joining the Raleigh Walker’s race club. They are actually based 3-hour drive from me. But, I’d get some real coaching (it’s run by the same race-walk official who gave me the ‘3-minute clinic’ at the track meet I got disqualified at!) And, I’d love to belong to a team. However, it’s not cheep. I’d have to pay - and a LOT (for me). That’s the only thing holding me back. The $$$$ :hushed:

So - you are so lucky to have the Northwestern athletic bunch.

-Bethr

P.S. Do you ever get any pain in the back of your skull if you push too hard? That’s the only issue I still have with Chiaris on my good, functional days. If I really bust out a hard 11:30-13:00 mile walking pace, the strain of the effort starts to ‘tug’ on the back of my head. Sometimes, the pain lasts for a couple hours afterwards. Folks are telling me I’m doing myself damage - and shouldn’t stress myself like that. I don’t know. Eventually, the pain goes away, so I go out and do it again another day. :roll_eyes:


#16

I do not get any pain on the back of my skull. I do have some long term nerve damage in my spine due to the syrinx. It has gotten so much better over this last year since the surgery. My surgeon reminds me I am still recovering and to be kind to myself. I can once in a while experience tingling sensations at the surgery site. I am told it is just nerves repairing. My MRI’s have been clean with normal flow and still showing the syrinx flattened and everything tucked into place as it should be. I feel lucky in that I don’t have anything else besides my Chiari. I didn’t have a cyst in my arachnid membrane or any other issues aside from the Chiari and Syrinx, so no shunt and nothing extra ordinary found during surgery.