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Avatar universal

Post Surgery Balance Issues

Hello to all!  I am new to your group and feel grateful to have found you on the web.  I had decompression surgery 11/26/08 and had two subsequent surgeries to clear up infections that I got while at the hospital.  The last surgery it was determined I had bactirial meningitis.  When I was first allowed to stand up after the third surgery I was unable to maintain my balance.  I would start walking and could not walk a straight line.  I went home with a walker and could not maintain my balance without it.  After a few weeks my surgeon didnt want me to use the walker but to walk and learn to walk without it so I stopped using it.  The walls are the only things that stopped me from falling down.  It has been almost a year after surgery and I am now using a cane to maintain my balance.  I am a teacher and find it difficult to walk with my students without the cane.  I have been to two neurologists who say they do not know if the damage is permanent or if it can get better.  They also cannot tell me what caused this situation since I did not have this pre-surgery.  Everyone is guessing as to what happened and why it doesnt resolve itself.  I have been to therapy after therapy with no relief.  If anyone has any suggestions or experience I would be greatful to hear about it.
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620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome back!!!...so good to hear the update and that u found a dr that u trust, works well for u....that is so hard to find..

Please add his info to our drs thread.....and I will see to it gets added to the Health Pages thread : )

I pray ur shunt issues balance off after a while so u do not have the HA's and other issues......but sooooo glad u r doing better than b4 .

Looking forward to getting caught up with u.

"selma"
Helpful - 0
Avatar universal
I know it has been almost a year since I last posted but the doctor that did my last surgery was Dr. Roberto Heros at Jackson Hospital in Miami, FL.  I would highly recommend him and wish I would have done my first surgery with him.  Always look for answers!  

With regard to my shunt, in this last year i have had many ups and downs.  Living with a shunt is a very different way of living but its a way of living.  I have follow up appointments every 3 months and I am never able to make it 3 months without having severe headaches that take me to the doctors before.  After a CT scan, it is determined that my shunt is draining too much liquid and causes the same symptoms as before with the in-balance, dizzyness, and severe headaches.  It is about that time and I am now feeling the pain again and have dizzy bouts.  I will be calling my doctor tomorrow for an emergency appointment.

I will be sure to update sooner!  Hope you are all having pain free days!
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
I am so glad to hear this surgery has been successful for u.... hydrocephalus after decompression and meningitis is not uncommon.I am glad u pushed thru and were able to find a dr  that not only listened, but was able to help u as well.

May we ask who this NS was in case someone else needs a NS for the same reasons?

I also hope u keep in touch with us here as u continue to recover.

Praying this is the last surgery u will need : )

"selma"
Helpful - 0
1041839 tn?1278681846
Hi magster! SO glad you are feeling better! I cant imagine Not feeling dizzy or running into things lol That has to be a GREAT feeling! Hopefully i will be able to say that in the near future! And you are SO right about keep pushing til a dr listens to you! Blessings to you and your continued recovery :) Shannon
Helpful - 0
Avatar universal
Hello to all!  Sorry it has been a while since I have poseted.  I had shunt surgery on December 8, 2009.  Wow I have to say what a difference the moment I opened my eyes after surgery.  I felt like there was a huge shroud removed from my head.  I could think clearly and best of all I had no more dizzyness and have been able to walk and move my head and not run into walls or other people.  I dont feel dizzy or nauseous which is something I havent felt for almost 2 years.  I honestly did not realize how bad I felt before this surgery.  With so many drs telling me that I was normal and could resume my life normally I guess I had started to think that my problems were mental.  I am glad I did not give up on trying to find a resolution.  My new dr now does believe that I got the hydrocephalus as a result of the bacterial meningitus that I got after so many infections during my decompression surgeries.  Thank you for all your advice.  Anyone out there who's dr keeps saying you're ok and you don't feel it - find a different dr that will listen!!!!
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Yes, I too have heard alot of negatives on shunts, and I do hear that the issues u r having after an infection seems to be normal/expected.

Did ur NS say it was possible to drain the excess off without a shunt?

Do u have a Chiari specialist doing this for u?

And were u dx'd with intercranial hypertension/pusedotumor cerebri?Both r the same condition...just 2 names for it.

"selma"

Helpful - 0
Avatar universal
Thanks for your comments.. I went to the neurologist because I continue to have in-balance issues post surgery. It has been a year and I have been to every Dr imaginable including ENT's been through vestibular therapy thinking it was my inner ear.  In October my neurologist ordered mri's and they were recently reviewed by my neurosurgeon because I had a one year post op appointment.  Never did I imagine his face when he came back to the room.  He was concerned at the size of the enlargement occuring in the fourth ventricle.  He said I needed to see a different neurosurgeon that specialized in this type of shunting.  The only issues I have had since my last surgery is the in-balance where i will walk and if I start looking in different direction I lose my balance.  I do not have any issues with nausea or vomitting or incontinence as I have read about in posts.  I did have bacterial meningitis during the time of my third surgery because of infection.  I have read so many shunt surgeries not being successful that I am very apprehensive going forward.  My Dr doesn't want me to wait long before having the shunt placed because he says the increase in liquid was substantial between my April MRI and the one I recently did in November.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi ...from what we have been hearing from other members is it is possible to have excess fluid build up after surgery.
Some have/can develop intercranial hypertension.

Infections can also cause this.....depending on where the fluid pocket is and how much is there it can be removed via surgery...not sure if it will keep from happening again.

May I ask, have u only developed the issues recently?

"selma"
Helpful - 0
Avatar universal
I finally got the results back from my most recent MRI's done at the beginning of November and the results show an enlargement of the 4th Ventricle cavity which they say "may" be causing the inbalance in my walking.  They say the enlargement is significant since my April MRI and that I need to have a shunt placed in order to reduce the amount of liquid that is there.  Has anyone had this happen before?  They say this may be due to the infection I got after the surgery last year.  
Helpful - 0
999891 tn?1407276076
Hi and welcome....

I have a problem with my ballance, my NS last week said it is part due to vertigo and part due to loss of mussell strenght in my limbs. I agree with selma that you should see a ENT neurologist to check this out.....
I have not had surgery yet but it was ballance and dizzyness that caused me to see a doctor witch was to lead to my eventual DX of CM and Syrinx....

ray
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi ...glad u found us to, sorry the reason u had to seek us out.

Ask ur dr if u may have vertigo issues.....an ENT dr may be a good place to start.

Do u know were a syrinx and tethered cord ruled out?

We all know that decompression is to help slow progression of symptoms and we can have the same symptoms and possibly new ones after surgery....plus the risk of perm nerve damage is there as well.

Ur NS should be able to tell u if this issue of balance is due to nerve damage as there r tests....were they done?

"selma"
Helpful - 0
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