Chiari Surgery?!?

Question

Hi I was wondering if anyone who has had the surgery could tell me about the recovery. My Chiari is 11mm and I also have a syrinx. I have known about the Chiari since about 2002. My last MRI showed the syrinx, which has signifigantly increased in size since 2007... My first thought was , why didnt anyone tell me I had the syrinx until now? The first neurosurgeon I saw told me that My brain would shrink and it would correct itself over time. (this was when I had no idea about the condition) nso I listened to him. Now my symptoms are worse. I am having short term memory loss, constant urination, trouble swallowing ( I also have GERD) headache neck and back pain, dizziness, and tremors. I have been to a few neurosurgeons, the last one was 2 weeks ago and he told me I would be out of the hospital in 2 days and be fine in 2 weeks. I know this is not the case and recovery is a long process. I am just scared of the surgery and complications that come along with it. (especially menengitis, csf leak and the risk of getting worse not better). I have 5 children at home 7, 6, 5 and 1 year old twins. I see a doctor at Johns Hopkins tomorrow to see what he thinks. Any good surgery stories, as I can only find bad ones, and any input on any Dr's at Hopkins?

Sheila00 · Answer

I underwent decompression surgery for chiari malformation 1 in June 2013 i also have a synrix, syrigomyiela which was drained during surgery,it is almost a year later, now the syrinx is virtually gone, though it took almost a year to resolve, i am so happy most happy that it is but yes i still have to be followed by my neurosurgeon periodically. And happy to say, i still experience something's still,I must say my balance thought process, difficulties swallowing, and so many of those awful symptoms are literally gone, gone, gone I'm so happy. Yes i still experience minor things, after the decompression surgery, and i still have syrigomyiela, but for now I'm just going to wait and see, because i know it's not a cure, but my quality of life is much,much better. I am a sixty plus female raised a family and had a career unit

selmaS · Answer

Hi and welcome to the Chiari forum.

 Many with Chiari, even with dizzy spells and HA's may not need surgery.....do u know if u also have a CSF obstruction?

 DO u have ne related conditions too?

 If the surgery u r referring to is the posterior fossa decompression, many of us have had it, I have, 3 yrs ago already.....

 I understand be scared...that is normal, make sure ur Dr is well experienced with chiari and has ruled out all related issues.

kekkwong · Answer

hi all im also waiting to go in hospital to have a operation on the base of my scull to remove a piece of bone to releieve some of the pressure to stop me having headaches and dizzy spells can anyone put my mind at rest as im really frightened thanks kerrie

thieb9 · Answer

very true, thanks again for the support!!

selmaS · Answer

If u weren't nervous ...I would be scared for u...it is normal to be nervous.....as long as u have confidence in ur dr...that is what is most important.

: )
"selma"

thieb9 · Answer

Thanks.it still doesn't make me any less nervous!

selmaS · Answer

Hi...soooooo glad u were able to find a dr in a big place like that , that is familiar with chiari.We have had members go there in the past, but I am sure they were not as lucky as u to get to meet with an actual chiari dr!

Please keep us posted : )

"selma"

thieb9 · Answer

I had my appt with the head of neurosurgery today. It actually went A LOT better than I thought. He did recommend surgery based on my symptoms and the size of my syrinx.. I was with him for over an hour as he took his time to thoroughly explain everything (even though I knew most of it).. I told him that that last neurosurgeon I went to said he did a handful of these surgies, and he said at Hopkins the do a handful a week. I also met the surgeon that would be doing the actual surgery with him as well. She seemed not much older than me, but very confident...I like that! He took the time to explain all of the risks of the surgery, and what they do for each risk if it happens.. I also asked him about my children (2 of them were born with a saccral dimple). And he took the time to explain a lot of things abut my children with me... I did not get that LET ME DO THE SURGERY SO I CAN GET PAID feel from him... I do think when its time that Hopkins will be the place I will be going.... Having lived in Baltimore all my life, I have never been there. I wish someone would have told me how BIG that hospital is!! It took about 30 minutes to get to his office once we got inside the hospital..lol

selmaS · Answer

I am with u there too...hopefully he is well educated on chiari : )

"selma"

thieb9 · Answer

I have hopes that since I have read the bad stories, when and if I have the surgery I can look back and say, it wasnt that bad. (that is just a hope). I will let you know what the Neurosurgeon says. Hopefully I wont go in there tomorrow with more knowledge than him!

selmaS · Answer

Well u r very lucky to have a Dr do that for u!! I am impressed by that I must say.

I pray all goes well tomorrow and this dr is able to help u as well as give u a free appointment.

My story of my surgical experience is on my profile page if u want to read it....it is not a horror story....lol...just click on my name : )

Please post an update after the visit tomorrow : )
"selma"

redkim · Answer

I am pleased with my surgery.  While I still have bad day's they aren't as often as before the surgery.  Of course everyone is different, and it's good to read the "bad" stories.

I saw an NS before getting refered to the one who did my surgery, who is also a pediatric NS.  The first NS said he would do the surgery, but wouldn't say my symtoms were related or tell me how many surguries he performed.  Thanks to this site and one other I was able to get a list of specialists and that is who I saw and who did my surgery.  It was a very hard descision to make, which I took a few weeks to think about.  I also have the same symptoms as you, plus the headaches.  I don't have a syrinx - which is what I wanted to avoid and a big factor to me having the surgery.  My doctor is about 100 miles away, so I was lucky to find one close to me.

I think it's important to be realistic and have the right expectations going into surgery.  All the best at your appointment tomorrow.

thieb9 · Answer

Thanks! Hopkins apparently performs a few of these a week.  (most cases are pediatric though) Actually, how I found his is a little odd.  Living in th Baltimore area I have a few friends that work at the Johns Hopkins hospital itself. I put my situation out there and the next dy was getting a call from a doctor at the Head and Spine Center. I do not have insurance, it just ended and I will not have my new insurance until atleast October. So the Dr agreed to waive the $750 consultation fee because after sending him the measurements and MRI report he felt this needed to be looked at asap.. So I go tomorrow and see him (for free). I figured it cant hurt to talk to him. As far as specializing in it, I wont know more about that until tomorrow.. I am just really nervous because I am finding more "bad" stories than good. I am limited to what I can do now because of the symptoms, but on the other hand the syrinx is growing and from what I understand it is growing up towards by brain. (it is pretty high in my cervical spine).. And I do know that this can cause some major stuff if not treated :(

selmaS · Answer

Hi and welcome to the Chiari forum.

I am so sorry u were not given the correct info or all the info from the start.Unfortunately, not all NS are well informed on chiari and what they were taught in med school is out dated views and not current with the research being done.

U really need to be seen by a true chiari specialist.We do have a thread of drs  of the members here ...so u do have to research them to see which is the right one for u...and u may have to travel as there r not that many out there.

Once u see a chiari specialist u will have a better idea as to what all u r dealing with....and 
have a better idea what the surgery process is or can be like...2 days and 2 weeks recovery is very rare....I was in ICU 2.5 days...and then in a reg room for another 3 days....

It can take up to 2 yrs to fully heal from this surgery and just from experience talking with members those that go back to work or activities as normal in a short time tend to have other issues crop up...I (MOPO) would suggest going slowly and listen to ur body....plus, it all depends on how ur body responds to the surgery and the meds....how ur body heals...slow  or quickly?

No Drs at Hopkins that we/I am aware of for chiari...I would suggest u look at out list of drs here and use it to research.

It is possible for u to get worse  or to even feel worse after surgery, but a good chiari dr only operates if the benefits out weight the risks,

Surgery of ne kind has it's risks and this one is no different....u could develop IIH...or need other surgeries bcuz of related conditions like tethered cord, ur syrinx, Ehlers-Danlos....

Do be sure u r given all the testing to see what all is going on...CSF blockage, TC, ur syrinx, overcrowding ect.... and know how many surgeries the dr does daily, weekly ect on chiari....one that deals with chiari daily is a better experienced dr for ne surprises.....or issues that can only be seen until they r inside.


Wow u do have ur hands full...goodness...and u will need help if/once u decide to have surgery....

Look at ur quality of life and ur symptoms now and does ur herniation pose a direct threat now...

We r happy to have u join our little family here, but not happy for the reasons u had to seek us out.

"selma"