It has been 5 wks. since my decompression. Overall I think that I am doing pretty well, but recovery has been a little slower than I expected. The "chiari" headache is pretty much gone, but I still have all of the other symptoms (dizziness, vertigo, tinnitus, neck pain, visual issues). The NS was very happy with the CSF flow after he cauterized the tonsils and basically calls it a success (typical surgeon). Believe me I am grateful for the relief of the headaches, but am hopeful that some of my other symptoms will resolve as well. The PA says he tells everyone to give it a full year until deciding what has been helped and what has not. He said it really takes that long to recover.
I do have a couple of questions for others who have had surgery:
1. How long I should expect to feel the pain and numbness in the back of my head? I am not taking pain meds, but instead using advil as needed (which is starting to upset my stomach). It is very hard to sleep, because I can only lay on my back (get dizzy on my side), and my head gets really sore. I am still sleeping in a recliner and have tried every pillow and blanket possible to relieve the pressure (I do take a muscle relaxer at night - but it is so sore when I get up). Also, when I went out today (It was 30 degrees in Pittsburgh) the cold really was painful. I think that all of the healing muscles tightened up.
2. Is having a small amount of CSF accumulation considered normal? I had a cat scan and the NS said it is very normal to have a small amount which should be reabsorbed. He is not at all concerned but will do another cat scan in 2 months. I came right out and asked if it was a pseudomeningocele and he said "any accumulation of CSF is considered a pseudo - but do not worry about this" I still feel "puffy" in the back of my head (right around the area where the craniotomy took place), so I do worry about it.
3. Has anybody gone to acupuncture to aid in their recovery? I went last week and felt pretty good following the treatment. I am going to go twice a month for awhile. I feel like my whole body is "out of wack" and weak from just having surgery.
Debbie, your whole body IS out of whack. That’s a hard feeling to explain but you know when it’s happened to you. You are doing the right thing by being concerned about the CFS pooling- if you start to get a headache that is worsening than I would get your NSs attention. If anything feels “not right” get your NSs attention. It really is normal to feel out of sorts and have the odd numbness and aches. I’m sorry you are feeling this way. Some people wake up from surgery a new person and some take a slow and gradual progression to their new self. I was slow…and it’s very frustrating and discouraging. But know you are going to go through this- just rest as much as possible. I didn’t start feel like my old self until about month 5. I felt like I was missing my essence.
Are you having anxiety? Extra fast heart rate? I had NO symptoms of this before surgery, but the minute I got home it was on! I would lay in bed at night and just feel my heart racing for hours on end. It took me a couple of months to realize it, but I was in the throws of dysautonomia. There is medication for this and helps! I support you in being very “lazy” right now. You are not ready to do all the things you were doing before. Go slow and realize that’s the way it’s supposed to be. 5 weeks seems like a long time, and if your family is anything like mine (husband in particular) they are expecting too much right now. Let them know its normal to not be full on.
I think I was one of those people who thought she was going to wake up cured, so still having a lot of the symptoms has been hard.
I am not have any anxiety symptoms as you described. The small CSF pool does concern me and I have had 2 cat scans since the surgery and it has not gotten any worse. I am very attuned to my body and will be sure to raise any "odd" symptom to my NS.
Even though I have been dealing with all of this for 13 yrs., and have had many other unrelated surgeries, at age 51 I consider myself to be in relatively good shape. I will say though, this surgery has "kicked my butt". I am the hardest on myself and don't like to rely on people or ask for help. My husband has been great. I have made sure that he is educated on Chiari and the surgery, which has really helped.
Hopefully the acupuncture will help me to feel more centered and grounded.
Thanks so much.
jcdemar said:
Debbie, your whole body IS out of whack. That's a hard feeling to explain but you know when it's happened to you. You are doing the right thing by being concerned about the CFS pooling- if you start to get a headache that is worsening than I would get your NSs attention. If anything feels "not right" get your NSs attention. It really is normal to feel out of sorts and have the odd numbness and aches. I'm sorry you are feeling this way. Some people wake up from surgery a new person and some take a slow and gradual progression to their new self. I was slow....and it's very frustrating and discouraging. But know you are going to go through this- just rest as much as possible. I didn't start feel like my old self until about month 5. I felt like I was missing my essence.
Are you having anxiety? Extra fast heart rate? I had NO symptoms of this before surgery, but the minute I got home it was on! I would lay in bed at night and just feel my heart racing for hours on end. It took me a couple of months to realize it, but I was in the throws of dysautonomia. There is medication for this and helps! I support you in being very "lazy" right now. You are not ready to do all the things you were doing before. Go slow and realize that's the way it's supposed to be. 5 weeks seems like a long time, and if your family is anything like mine (husband in particular) they are expecting too much right now. Let them know its normal to not be full on.
Thanks Emmaline. The way that you describe it makes so much sense and makes me really hopeful. I am 51 and feel "old" to have had this surgery, so hearing from people in the same age range really helps.
Emmaline said:
Debbie, my recovery took a while as well. I was just about to turn 56 when I had it. I healed well after surgery but still had much of the same as you even at 3 mos. The NS didn't realize what was going on, but when I went to my new NL...he explained it quite well. Besides healing from the surgery, your brain has to heal from the herniation. The cerebellum is the like the conductor to the orchestra, the orchestra is the rest of the brain. If the conductor is off, the orchestra won't be right or in tune with each other. Your brain is still healing, and that takes time. Mine continued to improve, and had less and less of what you are experiencing.
It was a good 3 mos before I could lay on the back of my head. It wasn't a real problem because I was a side sleeper. I'm sorry you feel dizzy, but that should continue to improve. Your body is out of whack for sure, it's been through a trauma.
I didn't have any csf issues, but plenty do. The csf has to find it new home in the new surroundings. That too should improve, or you may need medication to lower the pressure. My thought is that we continue to improve even after a year. I'm a year and a half and still changing. Hang in there you're doing great!