Chiari Online Support Group

Surgery and Successful Recovery with Pseudomeningocele

It’s taken awhile longer than I imagined to be able to write this update! I also had two surgeries, so this is going to be on the longer side.
I had my CM1 Decompression Surgery on August 25, 2017. Prior to the surgery, I talked to my surgeon, and pointed out an area on the back right side of my head where all my headaches began, and asked him to take a look in that area specifically. From my films, he’d discussed with me that I looked tighter on the right, so I wanted him to specifically check the area out. Most of what everyone here describes is true about the pre-op and post-op experience. I was nervous but tried to keep keep calm. I asked for an anti-nausea patch, which I’m glad I did, because I never threw up after surgery.
The medication they gave me heading into the OR really did take away all my worry and fear. I remember hearing it was time to go to sleep and then little else. Post-op is hazy, especially now. My husband was allowed in, and fed me ice chips, and we transferred to the ICU without any real incident. My head did hurt, and I was afraid to move, but the medication was strong, and my pain was controlled. On the first night I did have trouble with my heart rate and blood pressure dropping too low with the pain medication, and I had some supplemental oxygen, but I was taken off the next morning. They explained to me that where I’d pointed on my head, my right Occipital nerve, was highly, highly inflamed. They removed two sections of it. The entire right rear of my scalp was completely numb. I had my surgery on a Friday, and by Saturday I was up and using the bathroom. By Sunday I was really walking, and by Monday I even walked two flights of stairs in preparation of being released, as I live in a two-story home. My pain was really well-controlled and things were going well. We left late afternoon for home, and I made it to my bedroom. That’s the last the I remember.
And then everything went downhill. I don’t even remember being at home really. My pain spiked out of control, I’m not sure when. By Tuesday morning we were back at the ER. They couldn’t get my pain back under control easily, at with a CT scan saw evidence of “a few drops of fluid” so they admitted me. I was in the hospital for five more days. They treated me with pain medication, steroids, and then did another MRI. We were prepared to have a second surgery a week after the first, but after reading the MRI, they thought it looked stable and decided to take a more conservative approach. I was weaned off IV pain meds, and sent home that Friday, after 4 days in the hospital.
This time, I did a little better at home. I had steroids, which initially helped, as well as much stronger pain medication. My parents had also come to visit and help out, and it was really nice to spend time with them. I had 3 or 4 good days with what I’d call “normal” post-op pain. I thought. I was even able to get up and walk down the stairs and join everyone in the family room a few times. Unfortunately, we live in FL and this was the week that Hurricane Irma was threatening the state. We didn’t know what to do. Hurricanes are awful at any time, but I wasn’t sure how I’d manage if we lost power so soon after brain surgery. And then suddenly, as the hurricane was getting closer, that Thursday, I took another really bad turn. I stopped being able to move my neck (which had been moving ok before now), to lay down in nearly any position, to stand upright, or basically move. And then I got a low grade fever that night. The next morning, three weeks after my surgery, the fever went higher. I couldn’t get out of bed to go to the bathroom, and I was in unbearable pain that we couldn’t control at home anymore. I didn’t want to go back to the ER at all, but we did.
They took my right back in the ER, and started all kinds of tests. The IV pain medication that had been working before couldn’t control the pain, and when they finally found a combination of something that worked, I was never more relieved in my life. I’m sure many of you get terrible weather headaches. Imagine having a CSF leak during a hurricane after Chiari surgery. It was terrible. I had to go on very strong antibiotics, and do another CT, and then another MRI. Considering the leak, and the fact that I physically couldn’t be flat because of it, I’m not sure how I managed to do the MRI at all.
We spent the hurricane in the hospital, which was kind of a wild experience. It also meant I couldn’t really talk to my surgeon and the communication wasn’t normal. The next day, I had another MRI at 2AM before anyone had ever even gone over the results of the first one. Then, the nurse on shift told me I had to have a Decompression. I got annoyed and said I’d already had one. But no, it was actually true. I didn’t realize that’s how they had to repair the stitches leaking from the first surgery.
The second surgery was harder for me mentally that the first. It was shorter in length, I think less than an hour. I had a much harder time with the recovery though. Part of it was that because I had a pseudomeningocele I had to have a lumbar drain for 5 days with bedrest, meaning I was in ICU flat on my back. When I tried to finally go upright again, I had a horrific reaction to the change in pressure and had to go flat again. I had pressure headaches so severe I had to stay in ICU several more days, and then in the hospital for more than another full week. It was very, very difficult. I had every kind of different head pain imaginable. I think it was partly from the nerves from the first surgery - it was like everything went crazy. I started to become afraid I wouldn’t be able to get upright again. It was so frightening. But the doctors and nurses were great, and slowly I was able to start to sit and stand. Between the 2 surgeries and 3 hospitalizations, I was in the hospital for 23 days. I never expected anything like that!
I was so lucky in my recovery that I had home PT and OT. That was critical – to getting moving again.
After a week at home I was able start getting out of bed and resting around the house, and another week after that I was able to start walking a little outdoors. It’s only been six weeks since my second surgery and I’m up to 8000+ steps a day, having added a little here and there. I can walk two miles at a time. I still have some fatigue and need to rest throughout the day, but it’s getting better and better. I’m down to medication only at night, and hope to be off of it completely soon. I graduated from home PT and OT, and start out patient PT next week. But I do exercises that my therapist gave me with resistance bands every day. The best news is that I haven’t had anything at all like a Chiari headache since the first surgery. I haven’t had a headache since my tissue finally settled after the second surgery. How the removal of my terrible nerve factors in, I have no idea, although I’m positive that it was involved in my headaches. My doctors have cleared me to drive, and told me that I’m ahead of schedule now on recovery. It makes me so happy to hear, because my recovery started about as slow as you can imagine.
The surgery was difficult, and I had complications that made it more difficult, but I’d absolutely do it again! I think it’s only after the surgery that I even allowed myself to understand how bad things really were before the surgery. Now, looking ahead, I’m so optimistic about the future. I hope anyone who takes the time to read this is able to find something useful in preparing for their own surgery or recovery. :slight_smile:

Thank you so much for posting this! I am so happy to hear that you are doing well and that you are happy that you had the surgery - even after having had a complication. I really appreciate hearing a success story!

My 16 year old son had decompression surgery on August 2. He developed an extremely painful throbbing headache about four weeks after his surgery which prompted an MRI. Interestingly the headaches were much improved by the time they ordered the MRI (a week later) which ultimately showed that he had developed a pseudomeningocele. Because he wasn’t really having symptoms by the time they discovered it no further intervention was ordered. They’ve said that as long as he’s not have debilitating headaches he is not considered symptomatic and there is not reason to call in. He does seem to be generally doing well, but he is getting pretty severe headaches that cause nausea every time he strains at all (and sometimes when he is not doing anything) but that resolve within 15 minutes with a couple of Advil - he’s had two today. I know that the neurosurgery department will not be concerned about headaches that are resolved by two Advil but it’s been almost three months since his surgery and these headaches seem to be becoming a regular occurrence.

He went into surgery with a Chiari > 20 mm and a spinal syrinx so it was not at all optional. His pre-surgery symptoms have resolved - if we could just get these headaches under control it would be a complete success!

Good luck with your continued recovery! Thanks again for posting.

He has his post-op MRI two weeks from this Friday.

Good luck with your son’s MRI. It very well could be that his headaches are just a post-surgical symptom that will heal in time. The very intense changes in pressure with the CSF flow take a long time to adjust to, and would be felt when straining. It’s only been a few months since his surgery, and with the complication of the syrinx that definitely takes times to resolve. He’s still healing, and his body might reabsorb the pseudo. If mine hadn’t become symptomatic, I wouldn’t have wanted to undergo the surgery a second time. I hope his MRI shows a big improvement, and that his headaches and nausea improve soon!

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I am so happy you are feeling well and moving! I hit my one year zipperversary on October 24th. I am doing wonderful. I am back to running marathons and doing Crossfit. My recovery was really rough. I ended up with asceptic meningitis and bacterial meningitis. I can say one year later my surgery was a huge success. I am pain free. I have a headache now and then, but I would consider them a typical headache and they are easily resolved and minor compared to the severe pressure head I once had. My numbness in my arms and feet are gone too. It was life changing for the good. I hope you continue to recover well!

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