Hi everyone.
Am a bit lost in all this. As you can read things have been less than simple.
And I'm really confused about what to do.
Since coming out of hospital my symptoms have been all over the place. Ive developed an strange flickering in my left eye which had lesseons. Awful fatigue and weakness everywhere am unable to get up as headaches are so bad in mornin i sleep till well into middle of the day. Lymphnodes in my neck that have been present for 9 weeks now and in last 4 weeks I have developed a electric shock every time i eat yawn or move my neck at all
My surgeon is worried about my lymph nodes being up so much along with night sweets and fatigue. Although he feels this probably connected to op I have returned to the gp for blooded test to rule out infection or inflammation. Blooded were ok and antibiotics made no different. Doc wasn't sure whether to try and scan the nodes to confirm what they were etc so contacted my surgeon. They have been missing each other for 2 week. I went back to the surgeon Monday for next checkup along with the other weird symptom of neck movement and pain in leg explained earlier. This is another symptom not heard of before and willow probably just take time to settle. Give them their due they are trying to help and support me and they don't have all the answers but I feel they think like I'm making things up having symptoms they havent seen assosiated with this surgery before or in this way.
They did decide to put me back on steroids reducing dose over Xmas and come in for a circulation scan in Jan to make sure there are no blokages or syhinx ( SOS don't rknow if that's right). The headache were more controlled on steroids in hospital so made sender to me.
The gp and surgeon have again now made proper contact. She has given me sleeeping tablets to try and help the fatiuge she thinks is because I'm not sleeping.
And tramadol for the pain in my leg which keeps me awake.
What to do. I think I want to try and sort one thing at a time but feel taking all these new tablets along with painkillers are going to knock me for six and won't know what's working. And think the scan and blooded are going to be affected 2.
So confusing, sleeping tablets worked last night but still woke up at 6 with the head and leg thing as before but at least I sleept. Was still exhausted for the day.
I know were not doctors but and simmiler situations or thought to keep in mind over Xmas.
Much appresiated
sorry for such a long barrbled message. X destress over now x
Hi...
I know 1st hand that all these meds can drive you crazy...wondering if they are even worth taking. My experience with steroids have been both good and bad..they worked great for the swelling...but made me very edgy..nervous..ect...
I, myself, have never heard of the lymph node issue you are dealing with...your bloodwork came back ok??? It very well may be the way your body is adjusting to all the changes..My NS explain it something like this.."your brain/body must adjust to the new CSF flow..which has been obstructed for yrs, if not your entire life...so, it will take time for the brain to re-calibrate to the new CSF flow"
Keep us posted.
Merry Christmas and WELCOME!!!!
Lori
Hi Cheryl
My god Iam exactly the same as u! had surgery on the 8th Nov,I too have developed the flickering in my left eye and wake up with an horredous headache in the morning with electric shocks! I have had chemical meningitis since the op and had another lumbar yeasterday that confirmed I still have it 6 weeks on.Have put me on a 4 day steroids course to try and reduce the inflamation,back again next weds.Just a nightmare,feel so disheartened because i feel like the op has failed,if anything I feel worse.I so sympathsis with you,totally understand what your going through,keep in touch xx
lori said:
Hi...
I know 1st hand that all these meds can drive you crazy...wondering if they are even worth taking. My experience with steroids have been both good and bad..they worked great for the swelling...but made me very edgy..nervous..ect...
I, myself, have never heard of the lymph node issue you are dealing with...your bloodwork came back ok??? It very well may be the way your body is adjusting to all the changes..My NS explain it something like this.."your brain/body must adjust to the new CSF flow..which has been obstructed for yrs, if not your entire life...so, it will take time for the brain to re-calibrate to the new CSF flow"
Keep us posted.
Merry Christmas and WELCOME!!!!
Lori
hi everyone, thankyou for you words of encouragement.
lori, lucky for me my steroids have just been re introduced, i had them in hospital along with many painkillers and things so felt pretty druged all the time anyway so not sure if they made me funny or was everything put together. they are tryin to see before my scan in january and over xmas if anything helps with the headaches. i guess if they do make a difference its something to work with if the scans are clear. i'm a bit confused about the lymph node thing too, i understand that lymph nodes react to things in the strangest of ways but i think the fact theyve been there 10 weeks ish hes keeping close eyes on them, they hae reduced now so i think they are just reactive. my 1st set of bloods were fine im just waiting for the 2nd lot, if no changes are there we will go from the scn i think is the plan. :-)
the surgeon is sure like urs that it will all settle and if mine has been like it for every it will take a while, the only thing they havent done, now to be done in january is the csf flow scan, make sure fluid is flowing properly, they are really happy with the decompression so hopefully if all is flowing properly we can try and control the headaches, rest and wait. :-) although easier said than done it will be nice to know it is just time and not a complictions or something :-)
i will continue to update, thanks and pain free wishes for the festive season x
denise, hi sorry i'm new this forum, so takes me a while and reply to differnt things. :-) you poor thing i completely sympathise, i was so upset on monday because since the electric shock thing started about 2 months ago its really put me down, it not the easiest things to not move to much to avoid getting and electric shock when you have been told to keep you neck muscles moving and ive though many times why did i do it and have the op, ive got more going on now than before. :-(. its strange because i guess you prepare after brain surgery for headaches and the surgeon cant tell you how good or bad they will be, but some of these symptoms i read us chiari sufferers seem to get or have are very unpleasent.
i was told about possible chemical menigitus being a post op problem but my surgeon hasnt as yet said thats what he thinks i have, i am susspision thought and reading you matching symptoms who knows. maybe thats why he put me back on steriods and suggested a scan. we shall see. :-) The docs given me sleeping tablets too try and help.
best of luck weds, and thanks for explaining your symptoms. hope you have as comfortable christmas as possible.
cheryl xx
Hi.....
Thinking and Praying for you!!!!!!!!
Keep us posted, ok?????
Merry Christmas,
Lori
geesh iam sorry you are going through all t hat- i was having awful headaches and that eye thing going on-but i also couldnt eat nor drink and all i wanted to do was sleep...i did have high CSF well when they decided to finally check it=which was almost too late thankfully i have a persistant husband and there was a doctor in the ER who read my ER file and said wait a minute something isnt right here and ordered a CT or an MRI iam not sure which I have NO memory of that time at all...................
Anyway to my point...I also had the node thing it seemed to hurt a lot and took forever to go down they were not concerned about it at all- and since it seems to swell and drop on its own from time to time. WHY havent they checked the CSF i'd think thats one of the first things they would do with the list of issues you are having?
I do hope you start feeling better soon. HUGS
hi lisa.
sounds like another rough ride for you too. my node thing as gone virtualy now, only commin up a bit since i re started steriods on tues/weds. may vanish again soon, no where near as big as before luckly so all likely reactive to surgery. the blood test should confirm they are ok next week.
i've only had 2 scans since my op, one post op- as has tingling in face and things and second one after id been out of hospiital week, so 16 days after the post op.(october). there was a bit of fluide retention on that scan but apparently minimul and causing no pressure. i had thought they would of done one at each of my 4 week checks but havent really said they needed to up to now as the de compressed scan looks good. i did think and my husband did sort of comment in a 'i dont know what im talking about but what if way but "by saying 'it s all good and well having a big hole but if theres a blockage or 2 much fluid some where it makes no different how good it looks on the scan! :-) the docs did then have a chat and decide to check the csf fluid flow so we waiting now for that appt. im not sure what they do i think a die or infection of some sort.
hopefully we shall have me sorted soon. christmas was a nice crazy few days at the parents and brothers, so as for resting and monitoring symptoms, i just crashed and didn't do anything, dont think ive looked at half my pressies poor little head was so confused and worn out. :-)
i hope you are feeling better now too, il keep everyone posted. hugs x
Lisa W said:
geesh iam sorry you are going through all t hat- i was having awful headaches and that eye thing going on-but i also couldnt eat nor drink and all i wanted to do was sleep...i did have high CSF well when they decided to finally check it=which was almost too late thankfully i have a persistant husband and there was a doctor in the ER who read my ER file and said wait a minute something isnt right here and ordered a CT or an MRI iam not sure which I have NO memory of that time at all...................
Anyway to my point...I also had the node thing it seemed to hurt a lot and took forever to go down they were not concerned about it at all- and since it seems to swell and drop on its own from time to time. WHY havent they checked the CSF i'd think thats one of the first things they would do with the list of issues you are having?
I do hope you start feeling better soon. HUGS
Cheryl all this happened with me in 09 and i am still recovering can you believe that? to this day i still have problems much of them come from the shunt, but some also come from my cervical stenosis and from my neck and shoulder pain that well NO ONE knows why- i have one neurologist tell me i have tendonitis and i need to go to PT- PT is where I started out and that caused me MORE problems and pain not to mention now this perminant facial numbness that i get this look of bewilderment when i describe it. & explain what happend right before the numbness took place-at the time i was seeing another neurologist who thought i had a stroke and sent me through a battery of tests only to say no stroke-gee i dont understand. Now I have learned to have fun with the good days and work through the bad-not to let them get me down or overly frustrated,I admit some days are harder then others but ya know its the only life i got i might as well make the best of it!
Hopefully when your brain catches up to your body(thats how i always explained things to people who didnt understand) you can appreciate the presents you got for christmas ;)
Cheryl be persistant- you have to be your own advocate if you wont be no one else will be-get the answers you need and deserve! Razzle is right about the meds if you are seeing multiple doctors for the same issues.
Hang in there Kiddo
Hi again thanks for the added advice. I’ve had an ok few days. Getting through the day more and feeling a bit stronger but trying to do to much with my hands like using the laptop mouse or being on my feet for too long is making them shake like gone weak. My husband thinks is the sleeping tablets and the docs did say its a possible effect. They have helped, I’m glad I’m feeling a little more with it during the day now. Bit of a shame that I’m more uneasy and shaky than before but I will muddle on for now. Have another chat with the doc in Jan. Both surgeon and doc know what I’m taking and are happy so that’s good and why I’ve carried on but i keep them update about how I’m feeling about things all the time i think they think I’m a pain keep updating them each week or so but has to be done can’t risk any of these odd things that are happening being ignored. 
will write another update spoon x