I had decompression surgery November 25 2013 for chiari malformation with pretty large syrinx. Was just wondering how long it takes for symptoms to subside?
Lisaree, I’m so sorry you are still having symptoms. Have you had any changes since surgery? Ups and downs? How are you feeling?
Jenn
I feel worse now than before the surgery. My whole body aches & is stiff, I can hardley squat down. my hands are waking me up at night. They are falling asleep and burning. Maybe from the syrinx I have.
I was told that it takes a long time for the syrinx to shrink after decompression. Getting depressed cause I think I should be feeling better than I am after this long after surgery.
Headaches are better though. Hoping someone else has had these symptoms and has gotten better. Am hoping I didn’t go through all this for nothing.
Thanks for caring.
Lisa
What kind of symptoms do you have and what kind of medication do you take?
razzle51 said:
sometimes the syrinx doesn't shrink , it may get smaller or it may disappear ... I had surgery in 2000 and my syrinx is still there... you may have some symtoms from time to time ... I don't think anybody is symptom free.... you just have to medicate..,.I know you didn't want to hear that . sorry ....
I know it takes time for a syrinx to heal- I think this a slower process than would be if there was no syrinx involved. Another question- have you had a post op MRI done? Post op cine MRI? What does your NS say about your remaining and new symptoms?
I have not seen my NS since Jan. 2014 and at that time I was 6 weeks post op and still healing. He said I could see him again in 6 mos. or a year if I wanted but I didn’t need to go back unless I was having problems. He said he would leave it up to me. I will probably go back at a year because I would like an MRI to see if the syrinx has shrunk any. I know I am still healing…it has only been 3 1/2 mos. my chiari was found because I had gotten a shingles vac last March and 24 hrs. later I developed horrible nerve pain in my arm and hand. Had a nerve conduction study done and they found ulnar nerve damage.
Months later I asked my doc to do neck MRI cause pain was not going away, and that’s when the chiari and syrinx were found. I still have nerve pain in that hand and arm but my other hand is now waking me at night cause it falls asleep. I have had this before and was told it was carpal tunnel. My NS said that the ulnar nerve damage is not caused from the
chiari and the surgery would not help my nerve damage. I cannot help but wonder cause of my other hand now. I think I am a bit fat mess! I am so glad we can all discuss all of this as I need as much info as I can find. I did not research any of this before my
surgery as I was terrified of it and had horrible anxiety. I could not even talk about it to anyone without losing it. I probably should have gotten a 2nd opinion but too late now.Thank you all for helping me with my questions.
jcdemar said:
I know it takes time for a syrinx to heal- I think this a slower process than would be if there was no syrinx involved. Another question- have you had a post op MRI done? Post op cine MRI? What does your NS say about your remaining and new symptoms?
Lisaree, my daughter had surgery because of an extensive syrinx caused by her chiari malformation. An MRI was done 8 months after surgery to check on the syrinx which had decreased in size by over 1/2. She had another MRI a year later which showed the syrinx was pretty much decompressed. However, she still has weakness and pain intermittently down her right arm (the symptom that led to her very first MRI that found the chiari). And her neck feels stiff sometimes. Honestly, she said she feels 95% better because the pain was constant before surgery and, as you know, a syrinx can be very serious and must be treated. So your syrinx could very well be resolving, yet you can still have residual symptoms. It is still very early after your surgery and you are still healing. At least the headaches have improved :) Give it time, you will feel better!
Lisaree, I’m so sorry you are feeling like this- there is so much anxiety with this whole process. You can always ask for an MRI to make sure your decompression looks normal- I realize your syrinx may look the same so soon to the surgery, but I would be anxious to know nothings up since you are feeling worse. Have you tried a muscle relaxer? Many of us take a chelated magnesium supplement with noticeable improvement in stiffness and pain. Arnica gel and magnesium oil also help with musculoskeletal pain. Have you had your vit d level checked… So many of us are low in this- it can also make a big difference in the way you feel.
Have you put a call into your NS about the new symptoms? I think you should.
Hang in there Lisa.
Hugs, jenn
Emmaline, it is fascinating that you brought up the possible side effects of vaccines. Alexa was doing well, then got the Gardisil vaccine twice, once in October, then again in December, and all hell brooke loose. Her headaches returned with a vengeance, her neck and arm pain returned, she was sick on and off. I was so worried I asked for an MRI as it seemed like the Chiari symptoms returned. The MRI turned out fine, thank goodness, but there was no explanation for her symptoms. She got worse and started running fevers and was finally diagnosed with Infectious Mononucleosis (I know, poor kid!) that put her out of commission for 5 weeks. She slowly recovered and guess what? All the prior symptoms pretty much resolved. So....did the Gardisil do a number on her immune system? You can bet she won't be getting the 3rd and final shot of that vaccine!
I don’t think I have Guillain Barre syndrome as I had problems with hands falling asleep during night before I got the shingles vac. But after I got the vac I got horrible unbearable nerve pain in that arm and hand within 24 hrs. so I think the vac did stir something up. It still bothers me and I take gabapentin.
I think I will try magnesium supplement for pain and stiffness.
Lisaree,
I just read this thread after responding to your questions on a different one but I want to add a bit more here. I also had a large syrinx and my symptoms were also WORSE after surgery than they were before. My NS explained that this was often the case with a large syrinx because the nerves were compressed for many years as the syrinx grew and then, when they are suddenly released from that constriction, they are highly sensitized and you find out just how much damage there really is to those nerves. He said it is common to actually experience more nerve pain in the weeks after the surgery. However, I am here to tell you that, at least in my case, that pain slowly went away as those nerves healed and I am really good 3 years out. I have a little bit of nerve twinges every now and then, especially when there are fluctuations in the atmospheric pressure but I haven’t taken any meds except ibuprofen or Tylenol since a couple weeks after surgery.
I hope this is the case for you too. Try to get some light exercise if you feel up to it. My NS insisted I get outside walking ASAP and said it would promote healing. I did a lot of exercise beforehand anyway so I was eager to get moving but I do think it really helps. I do have some concern about your NS not automatically discussing a post op CINE MRI for you at some point in the first 9 months. When I researched all this on the front end, I seem to recall that it is pretty standard to do that follow up MRI for anyone with a syrinx to make sure that it is showing signs of collapse. I would certainly ask to have one done if you are not feeling significantly better by 6 months and make sure you have one at some point down the road because it is important to make sure that the syrinx has been adequately treated.
Try not to get too discouraged. I know it is hard when you are hurting but you may be better that you feel! I had some very blue days and I am middle aged which makes the healing harder too but I really consider my surgery to have been very successful. It just took a long time to get to this point. At 18 months I still had nerve pain in my feet and hands but now I can go a week without feeling any at all. I hope this is the case for you too.
Kate
Kate,
There is hope for me......I feel better after reading your thread. I too am middle aged, will be 57 this summer. I really don't feel horribly bad it is just this nerve pain in my hands and arm and also my body aches like in my joints and I am so stiff. I work full time as a receptionist and I am used to being very active and exercising a lot. I have gone back to the gym and am doing the elyptical, walking and strength exercises for my neck that my physical therapist had me doing. My NS told me that I really didn't need to go back unless I was having problems. I think because I live so far away. 5 hours. Dr. Peter Nakaji at Barrows neurological Institute in Phoenix AZ did my surgery. Have you heard of anyone else going there? I see my PC doc april 1, so I will see what she says and I do plan on getting a follow up MRI to check on the syrinx after a year post op if not before if my aches and stiffness do not improve. I am sure hoping this all goes away for me.
Thank you so much for getting back to me as I sure needed some encouragement and is so encouraging to know that there are people that have great success with this.
Stay well.....hugs...Lisa
Joalexa said:
Lisaree, my daughter had surgery because of an extensive syrinx caused by her chiari malformation. An MRI was done 8 months after surgery to check on the syrinx which had decreased in size by over 1/2. She had another MRI a year later which showed the syrinx was pretty much decompressed. However, she still has weakness and pain intermittently down her right arm (the symptom that led to her very first MRI that found the chiari). And her neck feels stiff sometimes. Honestly, she said she feels 95% better because the pain was constant before surgery and, as you know, a syrinx can be very serious and must be treated. So your syrinx could very well be resolving, yet you can still have residual symptoms. It is still very early after your surgery and you are still healing. At least the headaches have improved :) Give it time, you will feel better!
Joalexa,
Good to hear that your daughter is doing so well. Am hoping I get good results too. Things just take time. Did your daughter have trouble with her body & joints aching and body stiffness after her surgery? That seems to be my biggest complaint along with the nerve pain in arm and hands.
Other than that I feel pretty good and am back to work full time.
Thanks for the encouraging info.