Hi everyone....this is my first time starting a thread, so I hope I'm doing it right.
Teensy background: I had my first decompression 18 months ago. My surgeon didn't go through the dura. I got worse after surgery, my post-op CINE flow looked worse. I began on a steady neuro decline. Despite that, my surgeon insisted I was "fine" and that the decompression was successful. Basically, he felt his work was done, even though the flow study was worse and the herniation (estimated 15mm) was the same, and I was getting worse. I had my radiology reports, so I knew my CINE flow post-op was bad. Finally, I found out that surgeon never bothered to read my post-op studies. The whole darn time he was telling me I was fine, and I was basically curled up in a ball crying all summer, twitching and spasming and with terrible pressure fluctuations...and the dude never even read the reports. I decided (obviously) that I needed a new doctor.
I found a new doctor, and just had another decompression, a duraplasty, and a titanium plate put in 3 weeks ago, at OSU. My surgeon told me after surgery that my cerebellar tonsils looked like they had been so compressed, they had evidence of stroke activity on both sides. My tonsils looked "dead" and whiteish-gray, and had patches of necrosis on them, and were mangled looking. On top of that, my brainstem was so compressed it was turning white from lack of blood flow and oxygen.
My question for you guys is...have you ever heard of this before, of ischemic activity/strokes in the herniated tonsils? I did a little Googling but most of what I saw was about people who had died of that, or who had suffered massive strokes....not what surgeons find in the O.R. during Chiari surgeries. Is this a common finding, that the tonsils have become ischemic, or the cellular tissue has died?
Any experiences or information (or links, I'm big on reading case studies!) would be awesome.
You did great! Wow what a story. You have been through so much. It sounds like your second doctor is great. Yes I have heard of both. My new surgeon thought that I maybe had a stroke from the Chiari at my first appointment with her and checked it out on my imaging. When the tests came back it showed I didn't. My tonsils were really bad when I had my first decompression and they removed the parts that were so damaged. My herniation was 14mm and it took me a long time and a lifetime of symptoms to be diagnosed. One of the reasons that we have so many symptoms is because of the pressure and damage to the brain stem that some of us suffer. It's a huge important nerve bundle and many doctors give more importance to carpel tunnel (also a nerve bundle) problems than they do the issues of Chiari. I had adhesions on my brain stem and my surgeon removed them when I was decompressed 11 years ago.
I hope that your recovery is going well and that you are seeing some improvement. I'm sure others will chime in with their experiences.
There is a great book called Contents Under Pressure that really cahnged the way I understood and felt about Chiari.
Boy, you have been through so much....I hope your recovery is going well.
I am sorry ..I have no 1st hand knowlwdge of the stroke or TIA (mini stroke) question...but it does make sense that it could happen and that is where the necrotic tissue comes into play.
This new NS sounds like he knows his stuff..thank God.
Yes, for severely impacted tonsils, seeing necrosis occurs but is uncommon(I see it in about 1% of my surgical patients). I've never seen anyone write about that as it specifically relates to Chiaris. Necrosis due to lack of bllod flow is commonly documented in elevated intracranial pressure(and this is a local version of that). Seeing necrosis is a clear indication to the surgeon that something needed to be done(and we probably waited too long to do it).
Thank you all for your comments, I appreciate the support and information!
Dr. Trumble, I appreciate your comment that something needed to be done, and that we probably waited too long to do it. That's how I felt physically during the months leading up to this second decompression (where the necrosis was seen). I really felt as though I needed surgical intervention ASAP. I knew my brain was in bad shape and getting worse, and it was terrifying to have my first surgeon keep telling me I was fine, as I began to decline further and very rapidly. I'm not exaggerating when I say that I seriously felt I might have a stroke and die. I'm not someone prone to hyperbole, I just really was feeling that awful, and I knew it was all stemming from the compression in my brain. Apparently there was evidence of stroke activity, so maybe I wasn't too off about that!
I am grateful that I found a new doctor and he was able to get me into the OR within a few weeks for a more extensive decompression that I clearly needed.
And I'm trying to let go of my anger at my first surgeon, for neglecting to read my films, for neglecting to care for me after he operated on me, and for not listening when I told him/his nurses all summer that I was in a very bad way. I'm struggling with what to do re: him. I may file a formal complaint...because I was very sick, he had the physical evidence telling him that (my post-op flow studies), as well as me telling him that, and he did nothing but blow me off.
As for my current recovery, so far so good! I am 5 weeks out. My incision healed very well, and I am not in too much post-op pain anymore. A marked improvement over my first decompression, where I struggled with infections and dishisence for 7 months post-op! I am still noticing pressure fluctuations (most noticeably when I change positions, bend over, or with any straining). But it's not as bad as before surgery, knock on wood. I am still getting some headaches, but I can tentatively say that they are improving. I will have an MRI and CINE in January to look at post-op changes. Hopefully this surgery will help my symptoms, but I'd just be happy with knowing that my brainstem and tonsils are not impacted, ischemic, and in danger anymore.
Oh, and also.....I have never been diagnosed with high ICP. In fact, I've been struggling to understand whether I had high or low ICP, or fluctuations between the two. It felt to me like I was having huge fluctuations.
My last MRI said I had an effaced fourth ventricle (but normal sized), and no CSF flow detected in the fourth ventricle, and minimal flow to the optic tracts. But it also said I didn't have evidence of hydrocephalus or raised ICP....I'm assuming because my meninges were not enhanced? I don't really understand how I'd have an effaced normal sized ventricle with minimal flow to those areas. Is that indicative of high or low pressure? It sounds like Dr. Trumble is saying I possibly had high ICP, causing the necrotic tissue. I wonder why the high ICP was never diagnosed or identified on my MRIs....despite other CSF flow irregularities being noted.