Okay, so I don't know where to begin... So this whole experience has been horrible!! I get to WI and that's great but I get to the hospital ON TIME at 10:30am and didnt actually have my survery until 5:30pm. My surgery was scheduled for 12:30, so that FIVE hours late. But I thought " hey I would want him to take all the time he needs with me, so I got over that... So I have surgery and literally /
ALL he says is " everything went fine" to my family.... So YAY, that's great, but he failed to mention so issues that made it almost impossible for him for do my surgery! Apparently I have some uncommon pool of blood on my dura that made it IMPOSSIBLE to do the patch as he would with the "Y" incision on normal folks..... And then he also told me that he's not surprised that I have a CSF leak, infact he thought it was going too.... So WTF? that's not important info to share with someone and there family? I feel like I'm being brushed aside and I feel worse now than I did before!!! I can't even move my eyes without pain, every move I make I feel it in my head.... I didn't have swallowing issues before but I do now, I choke pretty much on everything I eat. Instead of intermittent tinnitus now I have in continuously with no break. I thought this would be the answerto all my problems and it has only caused more and made the ones I already had worse!!!
Hi,
I wanted to tell you that you are not alone! I know that does not take away the pain, symptoms or anger, but it helps sometimes to know that others go thru the same thing. I had surgery in 2008 and have more symptoms and problems than I had before the surgery, too. When was your surgery? Was the doctor able to decompress you? What is he doing about the CSF leak? I had leaks and pressure after surgery too and ended up with a VP shunt that is inserted into my brain on top of my head and then runs down my right side and drains into my abdomen. I haven't had any problems with it and do feel better after the shunt was placed. The road is long and the recovery slow when we go thru this trauma of surgery. It is a major brain surgery and we need to listen to instructions and our bodies in order to get some sort of normalcy back into our lives. I'm sorry that you are not feeling well and that you are still dealing with major Chiari symptoms. It really does suck!! I hope that as you heal and time goes on some of those symptoms get better or disappear altogether. It sounds like you your doctor is the type that if you don't ask questions, he doesn't offer any information. Be sure to write down all your (and your family's) questions and demand an answer!
Take care and keep in touch!
Carla
Hi..
I am so sorry you are going through all this....When is your next appt. with him??? The choking is very concerning....can you call his office in the morning??
The 1st few weeks ..mths were rough for me...It took a long while for me to feel somewhat ok.
Carla gave great suggustions....be sure to write everything down...so you can tell the NS .
Peace,
Lori
Big hugs Jen!!!
I hope things are looking up today. I can believe he didn’t tell you or your family about all the trouble he had. It blows my mind what some doctors do.
You are very string and this too shall pass. Take it easy and pray for the best.
Love ya!!!
Mindy
I'm so sorry to hear this!
Surely the doctor will want to know about the increased symptoms.
That sounds like a horrible experience.
I will be praying for you, and hoping that rest, relaxation, and painlessness comes soon.
Hey..
How are you doing today?? Did you call the doc?? Please know you are being thought of and prayed for.
Pls keep us posted.
Peace and Love,
Lori
I am so very sorry for this- Who did your surgeryin WIsconsin, Was it Doctor Heffez?
I would most defidently voice my frustrations and pain level....I also would not leave that hospital in pain!!
Hugs to you I hope you find some relief soon! And you and your family are given the answers you need
~Lisa
Lisa,
I’m not sure how much Jen is able to post right now but yes her surgery was done by Dr. Heffez.
Lisa W said:
I am so very sorry for this- Who did your surgeryin WIsconsin, Was it Doctor Heffez?
I would most defidently voice my frustrations and pain level…I also would not leave that hospital in pain!!
Hugs to you I hope you find some relief soon! And you and your family are given the answers you need
~Lisa
Thank you Mindy-- After seeing the dates I figured she was still in the hospital- which is the right place for her to be.
I really hope that he was able to help her somehow but by the sounds of it he was unable to do so,and I can more then understand her frustrations with that, I am more curious as to what his ideas are for how to treat her issues now that he was inside and see how things really are? Is there really something that can be done or is she once again holding the bag of magical pills with no direction(so-to-speak(thats how myNS's had made me feel))?
I am so sorry things turned out the way they did..was absolutely awful HUGS
I am very surprised he is treating her and her family with such dis-satisfaction, when i had my surgery there with him he was really a great surgeon but you have to remember he is a surgeon and his bedside manner does leave quite the bitter taste in your mouth- although i will say even after i came home and 19 days after my surgery suffered a devistating blow or as it would be called complication of hydrocephalus (and needed to have a shunt installed to save my life --yes it was that bad by the time it was caught) he was very willing and really concerned for me and talking with my husband and the neurosurgeon here who installed the shunt, maybe in part because all testing showed NO Hydorcephalus prior. Both of the doctors stayed in contact for sometime after the shunt was installed and until i was "stable".
She’s not in the hospital. She is back home in Nebraska. I’ll let her tell you all about it.
Lisa W said:
Thank you Mindy-- After seeing the dates I figured she was still in the hospital- which is the right place for her to be.
I really hope that he was able to help her somehow but by the sounds of it he was unable to do so,and I can more then understand her frustrations with that, I am more curious as to what his ideas are for how to treat her issues now that he was inside and see how things really are? Is there really something that can be done or is she once again holding the bag of magical pills with no direction(so-to-speak(thats how myNS’s had made me feel))?
I am so sorry things turned out the way they did…was absolutely awful HUGS
I am very surprised he is treating her and her family with such dis-satisfaction, when i had my surgery there with him he was really a great surgeon but you have to remember he is a surgeon and his bedside manner does leave quite the bitter taste in your mouth- although i will say even after i came home and 19 days after my surgery suffered a devistating blow or as it would be called complication of hydrocephalus (and needed to have a shunt installed to save my life --yes it was that bad by the time it was caught) he was very willing and really concerned for me and talking with my husband and the neurosurgeon here who installed the shunt, maybe in part because all testing showed NO Hydorcephalus prior. Both of the doctors stayed in contact for sometime after the shunt was installed and until i was “stable”.
OMG, I feel terrible for you. WTF>>> was he able to fix the Chiari at all? How many hours was your surgery? So, you don’t feel better at all? Getting freaked out my daughter goes in 3 more weeks. Is there any questions that you feel I should ask my doctor??? Please try to stay strong. Feel well keep in touch.
Hey everyone, I’m gonna make this short but I’m gonna give u a bit of an update… First of all I am in the hospital in Nebraska for pain control and nausea and vomiting control and steroids for chemical meningitis. I wish i could say the neurosurgeons here have been great, but they really haven’t. They first told me to go back to WI and then I told them Dr H said I could have a leak, nanyways 4 Docs here thinks it sounds like chemical meningitis which I guess isnt all that uncommon if the dura has been opened. Anyways, I have been in he hospital here pretty much since I got home from WI… I feeling better but I am very flush and been running a low grade fever since ive been here… I think I may be going home tomorrow, I’m not sure that I am ready though… But I guess they will be the judge of that. Thank u all for your thoughts and prayers , I appreciate them from the bottom of my heart. When I get a little better I will respond to EVERYONES QUESTIONS. Thank u
Saying prayers for you that you will have some relief soon. My experience was so different and I always hope everyone else's is too. Different surgeons have different approaches to the surgery. My neurosurgeon did not open the dura and I assune that might be part of what made my experience different. He also has an excellent bedside manner; he actually bowed his head and said a prayer for me before surgery. I wish your neurosurgeon had the same sensitivity. You would think they would realize that, while this stuff may be routine for them, it definitely is not for us. My prayer and hope for you is that things will improve each day and you will get some relief from all the problems you are having.
Hugs
Shirley