I had decompression surgery August 2011 and started to feel better, but a few months after started feeling sick again. I'm dizzy, nauseous, have blurred vision, headaches and my head feels like it is too heavy for my neck to hold. I've seen a hand full of surgeons and no one has any answers. I just came back from Wisconsin to see Dr. Heffez and was left with so many questions. He said the left part of my brain is beginning to slump but the right isn't. He thinks it could be that the original surgeon just didn't cut the bone evenly. He said he could do surgery, but just doesn't feel confident that it will even help me. I am fine with that, I don't want to have a surgery that isn't needed. He thinks my symptoms are caused by my POTS. He said he will call my doctor who I see in Baltimore for my POTS and decide what to do. I just don't understand why Dr. Heffez wanted me to come to Wisconsin if there was nothing he could do. I had to send all of my films and records to him to get the appointment. Has anyone else experienced this or been in this type of situation?
I am experiencing all of your symptoms. I am 4 years post op and they all came back after an MRI. I have been to 2 different NS and both tell me everything looks good. I am trying cranial sacral therapy. I had first season today. I was thinking of flying to NY for an opinion.
I am almost 6 months post op and having the same problems with memory loss, an everything else. My doctor hasn’t done anything for me keeps saying to give it time. I’ve started having problems when I talk and still have swelling I the brain.
I had the same question as you as far as why did Dr. Heffez have us go all the way up to Milwaukee after he had seen the films. We were told that he wanted to see my daughter AFTER seeing the films, and yet we get there and he tells us he doesn’t think surgery will help! Total waste of time and money. He was even interupted THREE times during the appointment, left the room three times and every time he came back distracted. DON’T GIVE UP. Keep looking, you will find someone to help you. We did. My daughter had her surgery in May and is doing great. Oh and she has POTS too.
Thank you everyone!! I wish we weren't feeling this way, but I'm glad I am not alone. Hopefully we can all find a doctor to help us.
Shell, I have tried cranial sacral therapy. It was very relaxing, and took everything out of me. I enjoyed that, but the physical therapist also tried me doing simple exercises and it made me feel worse. I wanted to try to keep up with the cranial sacral therapy, but it was getting pricey.
Just me, who did you see after Dr. Heffez and what did they do?
I had my decompression in May of 2012 and have actually never had a significant decrease in symptoms, apart from the fact that I would have been dead by now without surgery. But I was told that after the decompression the brain would go through a period of transition adjusting for the increased room, adapting to renewed abilities, and compensating for the years of damage that had been done because of rhe cerebral herniation… In plain english: it would get better for a while and then go back to “normal”, i.e. what you’ve been used to for years and years with chiari. Now, thats just what one specialist told me. I’ve done a total of probably hundreds of hours of research on our condition on my own and to be honest there is still relatively very little known about the short and long term effects of chiari. The majority of GPs I’ve seen are taken aback by my visits because they’ve NEVER treated anyone with chiari, they only briefly hear about it in med-school.
After a few CT scans and another MRI all my scans show no progression of herniation, a flawless decompression, and the dura patch holding exactly where and what it should be - so for my part I’m inclined to believe what I was told, that it just is what it is and I have to live with it.
Jlutrzyk, Dr. David Frim at The University of Chicago Hospital. He was very upfront with us and told us that he didn’t know if decompression surgery would help all of her symptoms, which were MANY! He could see that her symptoms were getting progressively worse and told us that we needed to go home and discuss the option of surgery. She had surgery on May 31st. He told us that as soon as he opened up the space, her spinal fluid began to flow properly. He also told us that her skull and dura were both extremely thick. Most likely contributing to the flow problems.
It was great to have a surgeon see that my daughter was sick and was willing to try to help. I think that there are many surgeons out there who fear a lawsuit if the patient is not completely symptom free post surgery. We were not EXPECTING miracles, we were praying for relief of some symptoms.
Like I said earlier, you just have to keep looking for a doctor who will try to help. I was not going to stop until someone could help improve the quality of life for my daughter. Keep looking and never give up!
DizzyE, thank you! I never really looked at it that way. It does make sense.
Just me, thank you for your inspiration! You sound like my Mom. She has been my rock and will do anything to help me. I am so glad your daughter is doing better!!! She is lucky to have you!!
DianalnAlaska, we also went to Mayo Clinic but the one ine Rochester MN. It was also a complete waste of time and money. The neurosurgeon told us that there was NOTHING wrong with my daughter. When asked why several other doctors told as that she has a chiari and syrnix and that her spinal fluid was not properly flowing, he told us they were all LYING! He never even examined my daughter.When questioning him, he got up and said there is nothing wrong with her and walked out of the room!!!! I want to know how to get my money back from the 4 days we were there and were told there was nothing wrong although she now has had surgery and is fine. Who did you contact at Mayo? Also, just my opinion, I feel that Mayo does not want to take on difficult cases. If they try to help a patient and don't succeed it makes them look bad, so just tell everyone with a complicated condition that there is nothing wrong with them. Very Sad.
these drs. are.awful. Why.dont they just admit.they.dont know. The.neirologists.are.useless. I.had 3.neurosurgeons tell us .there was.nothing.wromg.with my daughter one.of.which.chiari center.im.wiscomsin. Lol. meanwhile,.she.has chiari, scoliosis, retroflexed.odontoid,.basilar impression, tc, syringomelia, etc, with.tje.latest.diagnosis EDS. oh, and.craniocervical.instability.in which shes.awaitimg.surgery. Its hard to.find.a.good.chiari.dr. but.they.are out.there. Just.few.and.far between. Always habe.to.get couple.opinions.with.this. Good.luck.to.everyone
srry.diana,.i.only.saw.this now. im.new.on here.
its.dr. henderson in chevy.chase,.m.d. did.s.lot.of.research on him and.others. he.seemed.kmowlegeable. we.are.meeting.with.him…again on Monday. probably.will.be.ha img.suegery. giood.luck to u
donna