Hi Everyone - I’m new to the group and I’m hoping to get some input here. I had my decompression surgery on May 3rd of this year - I’ve had chronic aseptic meningitis that nearly took my life 2 weeks after the surgery (found myself on the receiving end of an ambulance and helicopter ride to Philly and spent most of May in the hospital). Since then, lots of PT, memory loss, cranial nerve pressure, tons of pain meds and steroids, now I’m on Topamax. My Chiari headaches are gone as are my other pre-operative symptoms, however, now I have migraines (maybe I always did??), fatigue and neck pain. I just don’t have the fortitude that I used to. I was wondering how the post-op recovery course was for other adults out there and if anyone else was having as much trouble as me…
hi jessiRN
im sorry to hear of the post op problem that you have had,
have you had any more MRIs since surgery?
my surgery was on the 22nd of june 17wks ago, i still have some problems, each person is very different in there recovery, alot of times it takes time, so allow yourself time, i know its not what you want to hear, but sometimes we have to except it,
i was luckly i never had miagraines, i got headaches, i also suffered mini strokes and incracanial pressure (my head was going to explode), i also ended up with walking stick,
i also have a intracanial lesion compressing my spinal cord that still needs to be removed, so it unsure if some of my problems are still caused by that,
most of my head issues have eased, i still get memory loss, the odd headache and the pressure every so often,
my concern with you is wether the surgery was a success, Have you had you spine checked?
im sorry for so many questions,
so just remember that it takes 2yrs for nerves to repair themselves also, anaseptic takes 2yrs to exit the body completly, so it can leave some problems, so recovery can be long,
joelene
Hi Joelene - thanks for answering. I've had one MRI and my surgeon said it looked good and that the meningitis was clear but I haven't had one of my cervical spine. I think I may ask the neurologist to do that the next time I see him. My husband says I'm still healing and just "overdoing it" and that's why I'm having spasms and headaches still - he's probably right (I'm not the type of person to take it easy!). The surgeon did say it would be a year before I really felt back to normal but I really thought I'd feel better after the surgery but some days I just feel worse...I'm a nurse and I know that spending nearly a month in the hospital/ICU does a number on you but I guess I thought I was stronger than I am - it's very frustrating...
joelene hossack said:
hi jessiRN
im sorry to hear of the post op problem that you have had,
have you had any more MRIs since surgery?
my surgery was on the 22nd of june 17wks ago, i still have some problems, each person is very different in there recovery, alot of times it takes time, so allow yourself time, i know its not what you want to hear, but sometimes we have to except it,
i was luckly i never had miagraines, i got headaches, i also suffered mini strokes and incracanial pressure (my head was going to explode), i also ended up with walking stick,
i also have a intracanial lesion compressing my spinal cord that still needs to be removed, so it unsure if some of my problems are still caused by that,
most of my head issues have eased, i still get memory loss, the odd headache and the pressure every so often,
my concern with you is wether the surgery was a success, Have you had you spine checked?
im sorry for so many questions,
so just remember that it takes 2yrs for nerves to repair themselves also, anaseptic takes 2yrs to exit the body completly, so it can leave some problems, so recovery can be long,
joelene
Dear Jessi:
Hope today you are taking it easy and feeling some better...For me , it took quite a while to feel the positive results that came along with the surgery...It does take at least a yr. to feel well, more like your ole self....that was my own experience anyway ..as well as my NS's..he told me it would take a long time for my brain to re-adjust to the new CSF flow...he went on to tell me he felt I had this problem my entire adult life, if not my whole life..thus, nature has to take its course, the brain bascially re-calibrating to the new flow...made sense to me...and after a while..I made baby steps in progress.
Let me tell you that by pushing yourself and being over-active...will kick you in the butt..in the long run....I know this from personal experience...
I had mine done 3 yrs ago..got out of the hospital around Sept 7th or so....about 2 weeks later we were on a freakin' road trip!!! Well, it was b/c were were about to lose our home, hubby had be laid off for 2 yrs..anyway...We went back and forth from RI to Upstate,NY just about every week..6 hr drive...I was cleaning out my desk a while back and saw the offer letter I signed on this house in NY..dated Oct.10th...1 mth after major surgery...we moved Nov 15th....
I tell you this b/c..Did it hinder my recovery..both body and mind...Looking back, I am shocked that no one in my family thought it was a big deal for me to pack up an entire house and move...never mind all those road trips!!!
But ya know, through adversity comes strength and a better appreciation for the small stuff...
You all must be so mad at me for this LONG reply!!! Jessi, I wrote a bit about my experiences so you don't hinder your recovery...it seems like you are a 'do-er not a sitter!" Being an RN, you are not use to being the one needing a hand...Please don't be a hero..ask for help, rest..you know the drill.
Please keep us updated on how you are feeling....We all care!!!
Peace,
Lori
Thanks for the supportive words Christine. I'm trying so hard to take it one day at a time and be patient but some days I just feel terrible. I am happy that I made it through the surgery in one piece, but I am fearful of never being able to do what I used to. The Chiari symptoms were bad, but I seemed to have a routine and was able to live with it - now I feel like I have a whole new set of issues that I'm trying to get my arms around because the postoperative course has been so difficult and long - what an uphill battle this has been. I don't regret having the surgery - I know it was necessary but yeesh! I'm a mess lol! Luckily my husband and others look at me and say wow, they can't believe I had brain and c-spine surgery just a few months ago and I look pretty darn good considering all I've been through :). All I have to say is thank God for hair extensions or my wedding this past August would have been a disaster with the really bad haircut my surgeon gave me lol...
Jessi
Christine H. said:
Hi Jesse,
I'm glad you're here and well enough to tell us your story. I'm also sorry for your trying times after the surgery. I know you were very scared and confused. On the bright side, it sounds as if you are coming around and are starting to see some progress. I haven't had the surgery, but still suffer a great deal of the symptoms on a regular basis. Your neck and head will probably hurt for some time after a major surgery like that, so give it some time. Surgery can be invasive and traumatic and your husband is right, you need to take it easy to prevent relapse. I suffer memory loss as well and have just chalked it up to having chiari.
I wish you well and keep us informed of your progress. We're rooting for you!!
Hey Lori - Yup, I'm not one to sit on my butt, that's for sure. Long drives are definitely an issue for me. My job is about 55 miles away and I had to come to the conclusion that I can't do it - I ended up taking a job 3 miles from our house instead. This will be much better for me and our family. I start the new job tomorrow so wish me luck! You're right, my flow has been obstructed for 41 years so it makes sense that re-routing the CSF takes adjusting - it's like opening the dams in Spring; lots of life as a result, but also lots of turbulent rapids along the way. My NS said at least 1 year before I would start feeling normal. It just stinks that my career had to take a completely different path as a result because the NS restricted my activities for awhile. I'm a flight and transport nurse but I'm not allowed to be in an ambulance or helicopter anymore (not that I could tolerate wearing a helmet right now anyway). Can't do 12 hour shifts or lift 50lb jump bags and 200lb patients either. So, I will be a boring administrator wearing a suit and working for the Health Department now - lol! Actually, it will be an interesting job and I'm really looking forward to the change. The universe has a plan for me so I'm going with the flow... :)
Jessi
lori said:
Dear Jessi:
Hope today you are taking it easy and feeling some better...For me , it took quite a while to feel the positive results that came along with the surgery...It does take at least a yr. to feel well, more like your ole self....that was my own experience anyway ..as well as my NS's..he told me it would take a long time for my brain to re-adjust to the new CSF flow...he went on to tell me he felt I had this problem my entire adult life, if not my whole life..thus, nature has to take its course, the brain bascially re-calibrating to the new flow...made sense to me...and after a while..I made baby steps in progress.
Let me tell you that by pushing yourself and being over-active...will kick you in the butt..in the long run....I know this from personal experience...
I had mine done 3 yrs ago..got out of the hospital around Sept 7th or so....about 2 weeks later we were on a freakin' road trip!!! Well, it was b/c were were about to lose our home, hubby had be laid off for 2 yrs..anyway...We went back and forth from RI to Upstate,NY just about every week..6 hr drive...I was cleaning out my desk a while back and saw the offer letter I signed on this house in NY..dated Oct.10th...1 mth after major surgery...we moved Nov 15th....
I tell you this b/c..Did it hinder my recovery..both body and mind...Looking back, I am shocked that no one in my family thought it was a big deal for me to pack up an entire house and move...never mind all those road trips!!!
But ya know, through adversity comes strength and a better appreciation for the small stuff...
You all must be so mad at me for this LONG reply!!! Jessi, I wrote a bit about my experiences so you don't hinder your recovery...it seems like you are a 'do-er not a sitter!" Being an RN, you are not use to being the one needing a hand...Please don't be a hero..ask for help, rest..you know the drill.
Please keep us updated on how you are feeling....We all care!!!
Peace,
Lori
Hi Jessi...
100% agree...there is a plan for all of us....you have a great outlook!!!
Just think...no more SCRUBS!!!! Though, I personally loved wearing scrubs everyday when I was working..didn't have to think about what to wear..LOL..But now you will have a new position, learning a different things....good for you!!!!
Be sure to take it easy.
keep us posted.
Lori
Hi Jessi,
Sorry to hear you are struggling, but I am glad you are making it through especially with what you had to go through after surgery. I had my decompression on St. Patrick's Day this year and found that the first 6 months are the toughest. I am just now starting to feel really good, but I can say even the first 6 months were way better than I evere felt when I was at my worst before decompression. I can walk now and that was a challange for me before. I was scared that I was going to be wheelchair bound.
I wondering what your daily routine is like? Do you feel like you are over doing it? Do you go to PT?
Sorry to bombard you with questions, but I am wondering if your like me and are having a hard time with fascial tightening. I have EDS (Ehlers_danlos Syndrome) and when they did my surgery and the position they put me in my right shoulder got damaged. My C4 was impinged and wasted my trapiesus muscle and other muscles in my right dhoulder and in mad in painful and unuseable. It still doesn't have full ROM, but with PT and streatching exercises and massage I am able to get the pain to a controlled state.
Another question is are you having issues with the "Brain Fog" and did you ask your Dr. about the Topamax?
I am on the Topamax for some head pain, but have found the fascial streatching to help with headaches too. Topamax does cause "Brain Fog" though and if that is one of the things that is really getting you down, then I would ask your Dr. about it.
My biggest suggestion is to keep moving. Like the old saying goes "If you don't use it ...you lose it." You know your body best, but keep those neck muscles moving, because if you don't they will tighten up and it will be painful. I hope things get easier for you. You can do it. You are obviously a survivor, because you made it through the toughest part. Now is justadjustment period for your brain o settle into its new home and get comfy. I'm sure you have move once in your life and you know it takes a little timeto get settled, but once you get into your new place and everything is where you want it life gets along much easier after all your boxes are unpacked. It just takes a little work and some time. We are here for you and only wish for the very best for you.
Much Love and Many Blessings,
Crystal
sorry to not get back for a while - the new job is keeping me busy! I've decided that scrubs, while not attractive, are A LOT easier and cheaper than my dry cleaning bill! ugh! lol...
jessi
lori said:
Hi Jessi...
100% agree...there is a plan for all of us....you have a great outlook!!!
Just think...no more SCRUBS!!!! Though, I personally loved wearing scrubs everyday when I was working..didn't have to think about what to wear..LOL..But now you will have a new position, learning a different things....good for you!!!!
Be sure to take it easy.
keep us posted.
Lori
Hi Crystal - sorry not to reply sooner - I've been so tied up with the new job that I haven't had time to breathe! I'm settling in with the Topamax and the brain fog is getting better but the parasthesias in my hands and feet are worse. But, the headaches are better so I guess its all relative. Had a crying jag at 5 this morning (lamenting my old life I think) but I fell back asleep and woke up feeling more positive. Going to meet my girlfriend (fellow nurse, and one of my biggest supporters during the bad times right after the surgery - she helped get me flown back out to Philly when the meningitis hit) for lunch today since it's my day off. Only working 4 days a week and I seem to be handling it ok so far. My days are pretty busy and wear me out very easily but I'm keeping a stiff upper lip... :) thanks for listening (reading!)
Jessi
Crystal said:
Hi Jessi,
Sorry to hear you are struggling, but I am glad you are making it through especially with what you had to go through after surgery. I had my decompression on St. Patrick's Day this year and found that the first 6 months are the toughest. I am just now starting to feel really good, but I can say even the first 6 months were way better than I evere felt when I was at my worst before decompression. I can walk now and that was a challange for me before. I was scared that I was going to be wheelchair bound.
I wondering what your daily routine is like? Do you feel like you are over doing it? Do you go to PT?
Sorry to bombard you with questions, but I am wondering if your like me and are having a hard time with fascial tightening. I have EDS (Ehlers_danlos Syndrome) and when they did my surgery and the position they put me in my right shoulder got damaged. My C4 was impinged and wasted my trapiesus muscle and other muscles in my right dhoulder and in mad in painful and unuseable. It still doesn't have full ROM, but with PT and streatching exercises and massage I am able to get the pain to a controlled state.
Another question is are you having issues with the "Brain Fog" and did you ask your Dr. about the Topamax?
I am on the Topamax for some head pain, but have found the fascial streatching to help with headaches too. Topamax does cause "Brain Fog" though and if that is one of the things that is really getting you down, then I would ask your Dr. about it.
My biggest suggestion is to keep moving. Like the old saying goes "If you don't use it ...you lose it." You know your body best, but keep those neck muscles moving, because if you don't they will tighten up and it will be painful. I hope things get easier for you. You can do it. You are obviously a survivor, because you made it through the toughest part. Now is justadjustment period for your brain o settle into its new home and get comfy. I'm sure you have move once in your life and you know it takes a little timeto get settled, but once you get into your new place and everything is where you want it life gets along much easier after all your boxes are unpacked. It just takes a little work and some time. We are here for you and only wish for the very best for you.
Much Love and Many Blessings,
Crystal
Hi Jessi,
Do you have bulging discs and stenosis of the cerivical spine. I have that and the CM1. My NS says that my hand and feet numbness, neck pain, and occipital headaches are probably mostly arising from the cervical issues as well as the CM. I'm also a nurse. I'm glad you are back on your feet and working. I haven't had surgery yet, trying the conservative approach. I am going to work, but having great amounts of fatigue. I have lost over 20 pounds with the nausea and dizziness. I was just diagnosed in the spring. It's been a lifesaver having the support that this group has given. I feel not so alone. Anyway, take care. Mary
Hi Mary - yes, I have mild cervical stenosis which was never too much of a problem before. The numbness only started when I started taking the topamax - I get tingling in my lips too. The benefit is outweighing the side effects so I'm trying to be patient. I also take Cambia when a headache kicks in which is GREAT. Gets rid of the nausea too. I was crashing and burning before the surgery so postponing the surgery was not an option for me (I was spontaneously collapsing and falling a lot, I couldn't drive and was pretty debilitated). Meds were not helping and I spent a lot of time on the floor. I can't do 12 hour shifts (I totally understand your fatigue, I feel exhausted all the time). I don't know if the tiredness ever goes away. I used to blame the fatigue on working too much but I just can't work like I did pre-op. I used to be an emergency transport nurse but I can't fly or be in an ambulance anymore. Lifting heavy equipment is an issue - so are loud sirens, flashing lights and whirling helicopter blades so life as I know it kind of ended for me. Awe hell, sometime just getting out of bed is a big deal some days. My new job is easy, comparitively speaking but not nearly as fun. I'm a disaster response consultant for my county health department - still emergency stuff but now I wear a business suit instead of BDU's and a nomex flight suit (not nearly as glamourous, lol). this group is definitely a lifesaver, I wish I knew about it before the surgery - everyone has been great and always has kind, uplifting words...
Jessi
marybs said:
Hi Jessi,
Do you have bulging discs and stenosis of the cerivical spine. I have that and the CM1. My NS says that my hand and feet numbness, neck pain, and occipital headaches are probably mostly arising from the cervical issues as well as the CM. I'm also a nurse. I'm glad you are back on your feet and working. I haven't had surgery yet, trying the conservative approach. I am going to work, but having great amounts of fatigue. I have lost over 20 pounds with the nausea and dizziness. I was just diagnosed in the spring. It's been a lifesaver having the support that this group has given. I feel not so alone. Anyway, take care. Mary