severe back pain

[katiamarie]

Had a rough 5 days with severe waist hip low back pain. Had to go to er given pain meds. Had shaking vomiting hiccups no appetite. Is this a coincidence or can this be related to chiari?

[selmaS]

  So glad  to get an update from you.....and to hear you are doing well.....those odd  symptoms are normal for where you are in your recovery....Hang in there..

[H55]

job going ok . had few issues with my leg of all things, kept going into spasm . they think i have bursitis . the joys of getting old haha. see my consultant in september .it is a year in few weeks time since had operation . get few niggly pressure head aches and odd dizzyness but on the whole not too bad . only working 3hrs in the evening for 6 days and have 8 days off then start again on 6 . just enough for me . take care everyone xx

[selmaS]

  Happy Belated Birthday !!!

Well as long as they give you a job that you can keep up with....keep your Dr in the loop if new symptoms start once you go back to work....

I wish you all the best....so happy for you....do keep us posted on the job and how you are doing.

[H55]

Hi been while since been on here thought wud give an update. I turned 60 last week and im having to look for a job now . They took me off sick benefit as they say i can fasten my coat and handle paper work so i can do some sort of job . Well i will be over the moon if they find me something. I still get the sickness and dizzyness a bit and get tired a lot quicker. And apart from the back keep going im rather good haha. Having physio and accupuncture at themoment . But over all im looking more forward and postive for the future xx

[selmaS]

  It  can  take  nerves  up  to  2 yrs  to heal  completely  so, if they continue to  heal  we will  continue to see  improvements....those of us  with  EDS  tend  to heal slower so  I am sure that is why I continued  to see  improvements longer  then  the  avg....lol....

[H55]

yes your right even specialist nurse said it could be 6mnths or 1yr or 2yr and your still seeing improvments .

[selmaS]

  That is when  we can  see how  far we have  come  is to    look back....from day to day  it is hard  to see the improvements.
Each year  since  my surgery   I     have  looked  back  and                                                                   really been able to see..just   how far  I...have    come ...and continue    to...go.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              

[H55]

Been week since had filling in tooth at dentist and still gave an ache !
Dentist did xray and doesnt think was tooth causing ache.
Specialist nurse said coulf be off damaged nerves.
Been out and about lot more but still need odd sickness tablet wen travelling.
Head still feels like a brick attached to it lol
But looking back im loads better . X

[selmaS]

   Hope  it  was  just  the tooth  and  that fixing  it  will help with the  facial  pain.....I  too  do not like  Dentists  until I  found  the  one  I see  now,  he  is  great and knows  my  fears and works  with me with it,..lol... I am comfortable  as  long  as he is  the  Dentist....

[H55]

Yes i get a bit dizzy if bending. My back has played up this week and heat helps with that. Been getting uncomfotable pain on right side of face , wasnt sure if tooth or nerves so visited dentist to make sure ,Had xray and turns out i need filling in back molar , i have morbid fear of dentists so not good news lol.But on the whole still getting out couple times a week . Twelve weeks today since operation.x

[selmaS]

   My  Dr told me no bending or lifting even to  pick up lint...lol...so  that  told me  no  matter  how  much  it  bugged  me  or  how I  thought  I  should  be  able to  do  it...I  shouldn't....

Keep  up  the  neck  exercises....they  will help  in  the  long run...help prevent  scar tissue  from  forming  and the  muscles  from  getting tight.,

I  used  heat  for 15  mins  b4  and  after  my exercises...that  helped  big  time....and I worked up  to doing them several  times  a day....I  really  feel  it  helped  strengthen my  neck so well....I  was able  to  put  off  a fusion....  

[H55]

Yes totally agree . Im fine upright but if I start doing things which requires  bending obviously my head isnt ready for that yet as dizziness or pressure pain comes on , so im careful not to over do it . Im stronger and lasting longer as far as walking about goes  I try to keep my neck from getting stiff as physio gave me couple neck excercises. X

[selmaS]

   No  worries....most tend  to try  and do more  then  they  should and  pay for it.....I  do warn  people  not to....but since they  feel better  then  they  had  they  just want  to "get  back to normal" what  ever  that is, was  and will  end up being...we  still  need  to take it  slow....

[H55]

thank you for that.Its hard when your feeling better to do things you shouldnt , but when i havedone too much , i always feel that bit worse next day , lesson learnt lol .x

[selmaS]

Fabulous  !!

So  glad....just remember....slow   and   steady....do not   try  to  do  too much  ...as it  can cause  set  backs....it  is  funny   to  look  back  as  that  is  the only  way  to really see  just how far  you have come....I   *****  myself every  yr   and with  each  yr   have  continued   to  see  improvements,.....

   As the  nerves   heal  they  will  tingle and cause odd sensations....

[H55]

hi its now ten weeks after operation and im improving all the time . Been out to shops for little while in car . Was tired in the afternoon but itching to get out again .lol
not needing antisickness tablets most days now except when i go out in car.
Tiny thumb nail size pale  pinkness on wound  . really hoping to get hair done soon !  When i look back a few weeks i realise how far i have come . Head feels itchy and odd little stabbing thing going on round wound area but considering what was done ist nothing much. lol

[selmaS]

  Hi and welcome to the Chiari forum.

Has your DD had any other DX's?.....what other symptoms does she have?

Ehlers-Danlos can cause joint pains....there are many conditions that can have similar symptoms so it is best to have them ALL ruled out.

Is there any family medical history similar to what your DD is dealing with?

[selmaS]

  Hmm just be careful as there are flu's and cold going around right now...tell people that are sick to let you know so you can avoid them until they are better....you do not need getting sick on top of trying to recover from surgery...

How often do you wash your hair?.....Washing it can dry it even with the baby shampoo....so once a week only as the dry skin will not only flake but pull on the incision...

[tioimo]

Wow, I'm being told my 16 yo daughter has POTS disease. But in addition to the POTS symptoms shes had the same knee, leg, hip and back pain you've mentioned. Its been years and from one dr to another to a chiropractor. The Dr. at RWJUH thinks its POTS and now we have to wait until february to See Dr. Boris at CHOP.

[H55]

little set back with sickness this morning but as day goes on its disapeared.
Head very numb still and scalp gone flaky ! Using baby shampoo now as nurse said gentler .But feel better in myself most days. xx

[selmaS]

   Yay...so glad you are able to get thru 2 days without the meds...that is fabulous.....

  Knowing you have other issues help us know it is not ALL Chiari.....and  that  it may be able to be relieved at some point....

Praying you continue to see improvements.

[H55]

yes as you say, i know what is causing my back pain too so not worried too much. its lower back pain too . had mri scan on it when i had scan for head and he pointed out there was wear and tear there. comes and goes depending on what sets it off. I suppose being laid up hasnt helped it . Day 2 and no sickness tablets needed .xxx

[selmaS]

  What part of your back is the problem?

I have always had lower back issues but I do have tethered cord and I know that is where my pain is from.....

Glad to hear you got out to walk about....I remember how great that felt.

Praying things keep going so well  <3

[H55]

Yay went out in car with hubby and had walk round shop feel like im getting somewhere now. Only thing bothering me is my back it was a problem before operation and I thought had gone since not had any bother last six weeks.  Wonder if med I was on kept it away. Soon as feel ok will have yo visit gp again ss an on going thing . Physio hasn't helped . Consultant said I had bit wear and tear on scan. Just age I guess ! Lol