2nd surgery

[StillHappy]

Hello everyone, had my post op visit today and needless to say I was not prepared for the information I received during my visit. I have been having major problems with not being able to walk electric like shock pain in the back of my head to the point I would be in a seizure like state unable to move talk body just trembling and jerking. I was in pain day in and day out with no relief from da pain meds and they were very very strong nothing worked. I had to be rushed to the ER twice one was by ambulance the pain was so intense unbearable I could not even have an MRI done and no one could figure out what was wrong until today at my post op my NS tells me I have a collection of fluid sitting in the back of my head where the first surgery was done so......back to the operating room u go. How come it took so long to figure this out, why did I have to suffer feeling like I was not going to make it for 2.5 weeks until my post op for someone to tell me what was actually wrong?

[selmaS]

  Hi....ur Chiari NS should be able to tell u if u have EDS indicators and should be able to refer u to a Dr that specializes in it.

Please post on the surgery Date thread for a prayer thread to be posted.....

I will be keeping u in my prayers <3

[zygy2]

The left side of my head feels pretty funny from where they harvested tissue and I am a year past my last surgery so I am guessing it is going to be this way forever!  It is just weird though, not really painful.  I have also been cut open four times so maybe it is from that, feels really crazy when I sneeze :)  They use harvested tissue less because it takes more "skill" to harvest the tissue and then if it gets damaged they can't just open another package :)  I really wish I had forced the issue with my first surgery!  The EDS thing is interesting to know.  I always knew things were different but did not have answers. I was very flexible as a kid, not so much now as I am 41!  My daughter is just like I was so I took her to pediatric genetics and that is who diagnosed her.  Once she had the diagnosis, my PCP just added it to my chart.  First thing pediatric genetics told us was that avoid all unnecessary surgeries!  It is a very good thing to know that you have!  It also explained why my shunt surgery went so bad!  They could not get the spinal fluid to stop leaking out my incision... the tissues did not close the way that normal tissue should!  Very important to know if you have a connective tissue disorder!  Good luck finding answers, it can be a slow and frustrating process.  The best thing about your situation is that you say you have an awesome NS!  My first one was not but my second was fantastic and he helped me get all the answers that I needed to get things healed!  It has been years for me and I still feel like I keep learning about things!  -zygy

[StillHappy]

Thank you so much, he didnt mention where he was getting the tissue from but from the sound of it, it will be from the same place just above where he did the decompression surgery. Alot of people have suggested that I get checked for EDS I just need to know which one of my doctors have to refer me out for that testing. I am so new to this and I have learned alot but there is still much more that I need to know, look for and learn. So many people keep filling me in on what to do and how to do so I am very thankful because I don't have a clue. I have an awesome NS and he really stay on top of things for me but I always have the feeling that there is so much more I need to know.

[zygy2]

Where are they taking your tissue from?  Mine was taken from my scalp above where they did the decompression.  I know muscle from somewhere else can also be used but I am not familiar with that!  Mine was from my head :)    Good luck Sept 6th! It really stinks to do this surgery once so it really really stinks to have to do it over and over!  Glad you don't have to wait long for surgery! It took me a long time to find someone that would listen, I knew things were not right!  I do think that "most" people don't have problems with their patches but the EDS it seems causes issues!  I am learning lots all of the time and so much of the time it seems people are just guessing! I do know when I feel good and when I don't and at least I found answers and it appears you have too!  You will have to keep me posted on how it all goes for you! I will be thinking of you on the 6th!

[StillHappy]

Thank you so much Zygy for that information. I found out Tuesday my surgery is scheduled for Sept. 6 and I asked what type of patch my NS planned on using and the nurse called me today to let me know that he is going to use my own muscle. My pseudo is horrendous and I have days when I am doing just fine, days when I have just minor headaches along with minor aches and pains and then there are days where I can't do anything at all, can't walk can't move can't do anything at all for myself eat bath move my head NOTHING! I say Wednesdays are my terrible torturous days I can't get over the hump because that's the day when I seem to be the WORST.  The pain is horrifyingly deafening and it makes you question what have you done to yourself but you have to keep on pressing forward because in the end it will get better. Everyone has been so helpful and informative so I have learned alot and I am so grateful. I had no idea that there was different types of patches and the trouble they caused so that information was very very helpful. I pray that this time I start to feel some type of relief and receive some type of normal free of pain.

[zygy2]

HELLO :)  I just found my note from Selma and wanted to introduce myself!  I had my first surgery just over three years ago and spent the first year after knowing something was wrong but could not get them to listen to me.  Luckily I was not having pain attacks like you but it was worse than before surgery and the headaches and neck pain were crazy.  In my case they used a synthetic patch when they opened the dura and my head did not like it at all.  It has been a long three years!  After my "repair" surgery things still went bonkers because they tried to patch the holes where my patch did not close and that did not work.  I ended up having my spinal fluid drill a hole in my cerebellum and I got to go by ambulance and have a third head surgery (emergency).  It still did not heal and I did have a forth surgery after trying a shunt to drain fluid for a while.  The shunt did not work for me, my body hated it and it just caused more surgeries!  I finally had the shunt removed and they eventually got out all the synthetic patch and replaced it with my own tissue and after three years with a pseudo it is finally gone and MRI's look normal again!  I have some pics in my profile and you can see the pseudo!  It has been a very long haul but I am feeling pretty good now.  My ultimate goal is to be able to say that I am happy I started this whole process.  I went through so much that it is still not the answer that I have but I hope with time that I will feel that way.  I wish they had listened to me and that I had never had to deal with that synthetic patch!  Now I know that I have EDS type 3 (hypermobility) and P.O.T.S and things start to make more sense!  All this medical stuff can get very confusing!  I hope they can help you and make  life better!  Sounds like things are pretty rough for you right now!  I fully get that, it is so frustrating to keep getting  worse when all you wanted was the one surgery to go well and you would feel better.  I had a very difficult three years and life had some pretty depressing moments!  Hugs to you and good luck with your pseudo, I hope it is gone very soon!  -Zygy

[frankie_rush]

I hope everything goes fine and will be saying prayers for you.  You are doing things right findout what is wrong and that way you know the reason and look for answers.

[StillHappy]

Hi selmaS, what I have is called a pseudomeningocele I've read a little bit about it but I don't know to much. What I've read so far is that it can cause all the horrendous pain and agony that I have been going through. Many have mentioned that I need to check and see what type of patch my NS is going to use. I just really pray nothing goes wrong this time around

[selmaS]

  Hmmm so the dura was not open, that could be y u r having issues too, sometimes there is not enuff room unless they open the dura and create more room.....

Another possibility is cerebral ptosis,....and that is when they chip away too much bone trying to make room....

  it is a fine balancing act to get the right amount removed and making sure they seal things back up.

Sending prayers u do not have to deal with that again.

[StillHappy]

Thank you, I didn't have a dura patch at the first surgery my dura wasn't open but he plans on doing that this time around which terrifies me that this may happen again. It is absolutely the worst pain I can ever imagine, I could not walk, move or lift my head. All I could do is literally scream because the pain was so deafening. I pray that I never have to experience that agony again ever

[selmaS]

Hi yes it is a CSF leak, these can occur for several reasons, the patch may have failed, or they may need to add stitches or u may be having a allergic reaction to the patch, do u know what type u have??

  Some may resolve on their own while others just continue to have more pain and the pseudo gets larger.....

A CSF leak will cause a lot of pain, nausea...etc....I know how u feel as I had a leak after an epidoral...the worst pain ever.

Here is zygy2's profile page link....u can send her a message or a note from there - http://www.medhelp.org/personal_pages/user/1667208

No worries...keep me posted.

[StillHappy]

Thank you so much selmaS I will, so you know of the pseudo because that's exactly what my paperwork says. Does anyone know the cause, do they resolve on their own and why they cause you so much pain and horrible agony. I am learning so much as I progress in this illness and there is so much to learn. Paying attention to all the things that has happened I hope will help me to help others and prevent the suffering I have had to go through for someone else. How do I get in contact with zygy2? Thank you so much.  

[selmaS]

  Hi.,..I am glad u found out what is going on and it may be bcuz u did not see a Chiari specialist...u may have been better calling ur NS instead of going to the ER.....

So u have a CSF leak that is puddling and filling up into a pseudo...u may want to talk to zygy2 as she had this as well....and her Drs knew what she had but I think they made her wait to see if it would resolve on its own....

Do keep us posted as to when ur next surgery will be.