I am new to this sit. I was looking for a support group to find people that have gone through and are going through a Chiari Malformation. I had a posterior fossa decompression surgery on May 15th of this year, just 2.5 weeks ago. My surgeon at The Chiari Institute performed a more aggressive and invasive decompression procedure where he actually went into the spinal column and brain and cut the Cerebellar tonsils out to make the room instead of the traditional surgery. The incision is smaller (about 2-3 inches), the recovery time is supposed to be much shorter, and there are supposed to be less risk of complications. He has also had a higher percentage of patients with close to 100% of symptom relief (depending on the severity of symptoms and how long they had the symptoms). My questions are this: have any of you had the surgery and been extremely depressed and tearful after? I have read that tearfulness and depression are “normal” after major brain surgery but I am concerned this isn’t going to get better. I have been having the pressure pain still but just on the left side of my neck and head and worse. My surgeon had me go have a MRI of my brain and one of my c-spine to check it out. They received my scans on Friday but he had already gone for the weekend. He emailed me Sunday night and said he had received them and would look at them on Monday. I have not heard from him and I even emailed to see if he had looked yet, but no response. This of course is adding to my tearfulness. I’m worried something is wrong and then feel like nobody cares to even let me know. How do those of you that have had the surgery deal with the depression and crying spells? Or am I just weird? This has been a lot more difficult of recovery than I anticipated. I don’t want to be alone because I’m scared something might happen and I’ll be by myself. Any suggestions? Sorry this thread ended up longer than I intended.
I have heard about this tearfulness from many other members. I personally didn't experience it so sadly I don't have any advice on how to get past it. I can however tell you it's perfectly normal! Brain surgery is quite traumatic and there are lingering effects from the pills and the anesthesia!
I’m sorry I haven’t updated before now…lots going on today. Well, I first woke up and felt better than I have in a while, took my shower, got dressed, and had my 5 yr old to get ready too. I had a annual Dr. appt @11. My friend picked me up and drove us up to my appt. As soon as I got out of the car, I immediately felt disoriented and light headed. Then as I walked down the hall I felt like I was in the twilight zone tunnel. Very strange feeling! I have been extremely short of breath today too. I was texting my husband that I think I just did too much too fast this morning. After the appt I asked my friend to drive me by the hospital, which was right across the street. I went in and got my MRI reports for myself and read them. What it said is that I have a small amount of extracranial fluid in the region of the prior surgery extending down to the spinous process of c2 which it says may represent a small pseudomeningocele. It also says I have slight encephalomalacia involving the medial aspect of the cerebellar tonsils bilaterally. The rest sounds normal. My PCP emailed me to see if I had heard from Dr. B yet. She had received the reports on Friday but said that what the report says is above her scope of practice and I needed to get in touch with Dr. B. I called and had to leave a message with his nurse practitioner. She finally called me back and I explained everything that I’ve been experiencing and I told her that I had gone and gotten my reports and read them. I told her what they said because she said she just had the scans and not the reports. Then she asked me to email them to her, so I did. I also threw in there to please get back with me with an answer today. She sent my email to Dr. B and said that she worked til 5 and if she heard from him before then she would get back with me. That is where we are at now. I’m extremely anxious! I also had that deafening pressure in my head today while walking into a restaurant that lasted longer than it ever has even before my surgery. Hoping to hear SOMETHING today!
I think I have felt like I should be feeling closer to “normal” by now. I’m not sure why. But I’m realizing that I do need to slow down. I finally heard from Dr. B this evening. He said that he had reviewed the MRI’s and all the postoperative anatomy looked “pristine”, there is NO sign of complications, there is no pseudomeningocele(he said the radiologist confused what he saw with old blood that was reabsorbing), there is nothing to be concerned about, and that it is still very early in my recovery. So I take that as him telling me to slow down and let my body heal. I’m very relieved but just want to stop feeling like this. It’s just been a lot harder than I imagined. I am so happy I found a group of people that I can relate to! Thank you for your responses and encouragement!
Exactly! That’s all I wanted from him!
I have definitely had a change in sleep. My husband and I have always gone to bed at the same time but since we’ve been home I have had several nights that I had to just get up and come downstairs because I couldn’t sleep. So you just have to wait for all the anesthesia to get out of my system? I’ve pretty much weaned myself totally off the pain meds and just have to take the muscle spasm meds. This is so nice to have people that have gone through the Chiari journey to chat with! I wish I hadn’t waited so long!!
Hi...
Hoping that you slept half way decent last night...How do you feel today??
I was so happy to read that Dr.B got in touch with you yesterday...I have only read good things about him...
I ,personally, LOVE his accent!! My NS has a British accent...it was one of my criteria in a NS..(kidding!!) It was a bonus, though...not to mention he is easy on the eyes as well!
Let us know how you are feeling.
Unfortunately, I didn’t go to sleep until around 2:30am. I’m very down again and very tearful. I just told my husband, maybe I shouldn’t have had the surgery. I just feel like I am more depressed than before and much more tearful. I’m not as irritable as before my surgery though.
I was happy that he got back to me as well. When my husband and I went to NY for my consultation, we left really liking him. He seemed very personable, knowledgable, and actually had a good personality which is something you don’t see too often in these guys. Yes, I love his accent too!
Yesterday when I hadn’t heard back from him yet, I called the ER in Charlotte where I worked for 4 years and spoke with one of my doctor friends and had her look up my scans and report and tell me if she thought there was anything to worry about. Of course what she was going by was what the radiologist in Charlotte said in his report and that turned out to not be correct. Shortly after I spoke with her is when Dr. B emailed me back. I was kinda starting to feel like the Dr I knew before and immediately after my surgery was not actually all I had thought. But he put my mind to rest and for that I am grateful.