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Surgery Scheduled
HI all. My surgery is scheduled for June 5th 2012.
Now for the bad news..... Today was a whole new side to this DR. I am going to seek a second opinion, hopefully from DR.Walsh, while I await surgery. While I feel comfortable that he is capable of doing my surgery successfully and that he can easily overcome any obstacle, he is skeptical that any of my symptoms other than the HA and head pain while straning will go away. He said that if it was his daughter he would reccomend surgery but that ultimately it would have to be her choice. Last time I saw him he said that surgery was necessary. I guess because there is no synrix he doesnt feel it is urgent. And, that's ok with me, but please dont make it sound like I am just wanting someone to cut my head open. From everything that I have read, surgery is never meant as a treatment but more as a preventive in hopes that if there is not a synrix it could help prevent it, as well as paralysis and such and that may sometimes relieve symptoms. Anyway...just really bummed. I ran out of the DR's office crying and left my dad hubby, and best friend behind, until my husband came to get me and calm me down. Him and I had already agreed that surgery was our best option, and he said that we should stick to our plan and stay strong and get a second opinion in the mean time. Does anyone know how to contact TCI and if they will review my MRI's and for how much? I was hoping to have to avoid this alternate, but at this point I really need to hear their opinion. Or Dr. ORO's office? Which one do you guys recommend?
Now for the bad news..... Today was a whole new side to this DR. I am going to seek a second opinion, hopefully from DR.Walsh, while I await surgery. While I feel comfortable that he is capable of doing my surgery successfully and that he can easily overcome any obstacle, he is skeptical that any of my symptoms other than the HA and head pain while straning will go away. He said that if it was his daughter he would reccomend surgery but that ultimately it would have to be her choice. Last time I saw him he said that surgery was necessary. I guess because there is no synrix he doesnt feel it is urgent. And, that's ok with me, but please dont make it sound like I am just wanting someone to cut my head open. From everything that I have read, surgery is never meant as a treatment but more as a preventive in hopes that if there is not a synrix it could help prevent it, as well as paralysis and such and that may sometimes relieve symptoms. Anyway...just really bummed. I ran out of the DR's office crying and left my dad hubby, and best friend behind, until my husband came to get me and calm me down. Him and I had already agreed that surgery was our best option, and he said that we should stick to our plan and stay strong and get a second opinion in the mean time. Does anyone know how to contact TCI and if they will review my MRI's and for how much? I was hoping to have to avoid this alternate, but at this point I really need to hear their opinion. Or Dr. ORO's office? Which one do you guys recommend?
Yes working full time and improving daily:) I am so much better than before also....even on a tough day. I also felt that I had no choice but to try. I was no longer myself and I hated who I have become. I find myself laughing ... out loud .... I had not busted out in laughter in years! I only take ibuprophin and vitamins now...crazy. I don't know what the future holds but for now I get to be me:) yes the me is different but I like her much better than the shell of me I had become. The pain I have is livable and it was not before. Get the second opinion:) Too often you see people with post op issues and arming yourself with someone who treats chiari often improves your chances.
No...he ( Dr. Tender ) is not a specialist. He was however at the time the only NS that medicaid would cover, and that even knew how to say the word CHIARI....lol. Dr. Walsh however is considered a specialist, and medicaidin La. recently changed and I now have united healthcare as well, so I was able to self refer to him. I knew going in that it was a long shot, and at first he seemed to really know his stuff.... :(
I have looked at your symptoms many times before and yes, alot of them are the same. I look at it as though, either I give the surgery a chance, and maybe get a little bit of independence back, and be able to care for my family...or I stay like this and stay miserable and allow it to conquer me. To me .... that is not an option. I have to try, at the very least, I have to try. I am so glad to hear that you are doing so well post op. That is sooo amazing!! What a blessing. Are you doing well working still?
I have looked at your symptoms many times before and yes, alot of them are the same. I look at it as though, either I give the surgery a chance, and maybe get a little bit of independence back, and be able to care for my family...or I stay like this and stay miserable and allow it to conquer me. To me .... that is not an option. I have to try, at the very least, I have to try. I am so glad to hear that you are doing so well post op. That is sooo amazing!! What a blessing. Are you doing well working still?
Rehe it all needs checked that makes me think he is not a true specialist IMHO. And just so you know I had no syrinx and diminished flow. I know we are all different but for me it is night and day. I cannot believe the improvement I have made in 10 weeks. I truly believe it is due to the knowledge and thoroughness of mt NS take a look at my symptoms I know you have a lot of the same. Hugs and prayers!
I guess he didn't really refuse, just said that he saw no need for it. I am sure that if I really talked to him about it,he would. I was just so flustered and my ears were ringing so LOUD !! I am going to see DR. Walsh before my follow up with him, and Dr Walsh is listed on lots of the Chiari websites and has a Chiari knowledable staff, even his receptionist..lol. I look forward to seeing what he has to say. I do however feel bettter hearing that lots of you have had that indecivenesss and that it is normal not to get a yes you should or no you shouldn't. I talked to the NS about the collar and he says that he believes it is because if where the tonsils lye when I have it on that helps increase a very SMALL amount of flow...lol. VERY SMALL is better than NONE though, right...lol? I do think that all of those things should be checked as well considering that he said he may have to remove not on the arch of C1 but maybe also C2 because of the size :(
No he agreed flow needed restored but would not promise improvement due to my other issues. Rehe if I remember ight you wear a collar sometimes to relieve pressure. His would be a sign of EDS and cranial instability...I would not let a Dr operate that won't listen about harvesting the patch. Ify ou have EDS you run a higher risk of rejection. My thought is why not my own parts?
Dr Oro only uses harvested patches. He harvests the pericranium which is found under the scalp.
Dr Oro only uses harvested patches. He harvests the pericranium which is found under the scalp.
I think you would benefit greatly from a second opinion at TCI or some other places I'm sure people have recommended. They know what to look for and what will make a surgery successful, rather than a simple "pf-decompression-will-fix-it-all" approach.
Also, my psychiatrist recently spoke directly with Dr. Bolognese from TCI last week and it was great. Basically, in the case of CM, a neurosurgeon cannot and will not guarantee that most of the symptoms you suffer from will go away after surgery. There are many reasons for this but I'm sure that right now it boils down to the fact that they don't have Official statistics of surgery outcomes, or even a complete understanding of CM's affect on the body. However, there is a very short list somewhere of symptoms that can be directly linked to Chiari and brain-stem compression. I'm currently in the process of getting a sleep apnea test and I just got the results from my barium swallow test (dysphagia). When tests like these come back positive for whatever, then you have a better case for why surgery would be necessary.
From all the things I've read, with the right neurosurgeon and treatment, most of your symptom list will be wiped clean... but they can't say it for certain to you at this point in time. It's all very complicated but I know that Chiari specialists around the world are working very hard to clear all this up.
I think the other reason that this is so complicated for us is that we are grown adults. Our bodies have adapted to our conditions, but eventually it all just hits this meltdown point that results in everything you're going through, everything we're all going through... all this pain, it's unbelievable... but at least there are a lot of people out there that understand this. Thank God<3
I hope this helps and much love to you<3
Also, my psychiatrist recently spoke directly with Dr. Bolognese from TCI last week and it was great. Basically, in the case of CM, a neurosurgeon cannot and will not guarantee that most of the symptoms you suffer from will go away after surgery. There are many reasons for this but I'm sure that right now it boils down to the fact that they don't have Official statistics of surgery outcomes, or even a complete understanding of CM's affect on the body. However, there is a very short list somewhere of symptoms that can be directly linked to Chiari and brain-stem compression. I'm currently in the process of getting a sleep apnea test and I just got the results from my barium swallow test (dysphagia). When tests like these come back positive for whatever, then you have a better case for why surgery would be necessary.
From all the things I've read, with the right neurosurgeon and treatment, most of your symptom list will be wiped clean... but they can't say it for certain to you at this point in time. It's all very complicated but I know that Chiari specialists around the world are working very hard to clear all this up.
I think the other reason that this is so complicated for us is that we are grown adults. Our bodies have adapted to our conditions, but eventually it all just hits this meltdown point that results in everything you're going through, everything we're all going through... all this pain, it's unbelievable... but at least there are a lot of people out there that understand this. Thank God<3
I hope this helps and much love to you<3
Hi. The problem is more so that my Chiari is progressive. Meaning that in the last three years not only has the length increased by at least double, but that the width has caused a severe blockage, alongside the plethera of symptoms including black outs and a spell that left me without two years of memory. Trust...If I hadnt tried every med and I it was not continually getting worse and progressing, surgery would be the farthest thing from my mind. I however REFUSE to not be able to take care of my family and children, and have to have someone bathe me, instead of bathing my children. I am not sure what you mean by patches?? I also have more than just a herniation, as it really does not matter the length of your herniation more if you have a CSF blockage.Also, most people who choose the surgery are trying to prevent other conditions from forming, like a synrix, or they are preventing the progression of the chiari before it paralyzes or does any more nerve damage that can not be reversed. Is your Dr. a chiari specialist? From what I understand, my herniation lies at 24.6 on the right and 28.2 on the left.
I'm just reading your posts and don't know much about the history. If you haven't had your csf pressure checked, do that before you have surgery. I was amazed when talking to Dr. Gray at Duke how many people have unnecessary surgery when spinal leaks can be the real cause of headaches and dizziness, etc. I just had four patches done and I have a 15 mm herniation -- I feel great. I will have a follow up MRI in 6 months or so to see if the Chiari has ascended. Low spinal pressure from spinal leaks can actually cause or at the least exacerbate chiari.
My neurosurgeon said that in general, physicians that believe in chiari only believe that it causes ha that gets worse with valsalva manuevers. He said that's the only thing they'll tell you could get better. But he believes that it causes a lot of issues. He said that he can't tell from one patient to the next what symptoms will improve and how they will react to the surgery because so much is still unknown. In my case, he strongly felt that the surgery would help me. And even though it has been a difficult recovery, it HAS. My headaches are more muscle and surgery pain. I have NO burning, stinging, pins and needles on my left side. My left leg does not randomly give out. And the horrible rushing sound in my head is a dull roar. Many times this recovery just gets me down, but looking at so many things that are better reminds me of why I chose this route. My ears also don't constantly ring and I don't hear my heart beat super loud in my head. Good luck and follow your instinct! Also, my NS used the lining of my skull as a patch. He said he has had very good success with this method and disagrees with synthetic patch use for most patients. Good luck!!
When it comes to the patch... make them listen!!!! I tried with my first NS that wanted to use the synthetic bovine... I gave in even though I wanted to have my own tissue harvested. Not only did I leak but the synthetic patch stuck to my cerebellum causing some horrible problems, an ambulance ride and emergency surgery! I really wish I had had waited and found an NS that also believed you should use your own tissue. I have that NS now, he is wonderful and he has removed the old patch and harvested my tissue for my new patch! You really need to find someone you trust and that you feel trusts you. I never feel like he is not listening to me no matter how strange my questions might be. It is not an easy process no matter what but having the right NS is so important! I hope you find the right person to help you.
Yep. I have calmed down a bit. My biggest problem was the fact that he said none of the symptoms other than headaches were chiari symptoms. Well, it was one of the biggest problems. My dad, my DH, and my aunt were all with me....my aunt was also at the previous visit. We ALL got the wrong vibe from this guy. I knew this would be my decision, but this DR was down right rude, and honestly didnt not as much about Chiari as he had originally portrayed himself too. He could not answer one of any of our questions. When I asked him if it would be possible to have a patch made of my own skin...he refused and said it was un necessary. I called Dr Walsh's office this morning and explained everything ....I have an appoitnment with him on May 3rd. His primary focus and study is Chiari/TC/and SM. Dr. Tender was not even planning on testing for any of the related conditions. Not to say that I believe I have them...but don't the best Dr's do the tests to rule them out??? It was like as soon as he said that I did not have a synrix....he lost all respect and interest in me and basically acted like a complete jerk. So, I am happy to see Dr. Walsh, and follow up with Dr. Tender, in two weeks so that I can make sure that I am making the right decision for me and my family.
Melody, did you ever get the opinion of the Dr?
Melody, did you ever get the opinion of the Dr?
* flow was restored. They did also leave it up to me. I said but I was old in the beginning he would not agree to surgery unless he felt it was necessary. His assistant agreed and yet told me I still may not improve and left it to me to decide. I was so upset because I wanted a clear yes you should do this....I chose surgery because I could not live like that anymore. I actually spoke to Dr Oro himself after has assistant called and cancelled and we discussed I still may have problems post op. I said but I have a csf blockage it has to help to fix that...and it will get worse. He said as long as I understood I may later need fusion or shunt we would go forward and I chose to go forward.
Rehe I have heard great thing about both. I was told Oro doesn't review until seeing you. I did have to fax my report to show over 5 herniage before they would schedule. Do you have related conditions? I was also warned that surgery may not impove my symptoms doe to PTC and EDS yet every symptom has greatly improved. There are times they simply don't know what condition is causing the greatest problems and my Dr told me he wanted me to be prepared that I may not be better post op and that would not mean my surgery failed as low was restored. They even called less than 2 weeks before surgery to cancel depending on seeing more specialists....I was a mess freaking out emailing Selma because I knew I couldnt live that way anymore. I am not supporting our Dr I am not familiar with him just wanted you to know that I know how you feel and the lack of promises of outcome is not uncommon. Ultimately I jumped through more hoops and was thankful he was thourough in the end....but stressed and sad in he process. Hugs and prayers
It just shows you how much they really don't know! So many on here have an NS that think the surgery will "fix" everything and then want nothing to do with the patient after but at the same time there are so many like this that don't think it will "fix" too many things but will do the surgery anyway. It seems that in the case of chiari there are just too many factors and to know what symptoms will be helped appears near impossible at this time. Hopefully in the future they will have a better idea for each person and all of this will get easier. Then we will not have such a difficult choice when we have to figure out if we really want to go through this surgery! I am very happy to have rid myself of the straining pain (cough headaches) and I do have fewer headaches but even after surgery I think it can be hard some days to know what has changed! Multiple opinions seems to be the best we can do and keep as educated as possible about the things that go along with chiari and things that can change the outcome of surgery such as patch material and if they open the dura! If only the process was a bit easier!
Oh....i really expected a different story...but a lot of things happen for a reason.i totally get u and ur frustration.leave ur operation scheduled and get another opinion.the problem with an ns who doesnt really specialize in chiari is that after surgery u cannot expect a lot...u will most probably end up like me...thinking u r crazy and lost as ur ns thinks he fixed u and all the other stuff is not chiari related....if u can live with that part ok....but be aware.i honestly,but thats my opinion would if possible for you await the second opinion...i am.talking out of my own.experience....good luck and dont give up...
Thats the plan Selma. I went ahead a scheduled it, because I can always cancel it, but we all know that getting in is a whole nother story.
I did not expect him to say it was an emergent situation. What upset all of us the most, was the way he said that my other symptoms were probably not Chiari related..i.e. numbness in extremities, blurry doubled vision, balance issues...etc. All that he would attribute the chiari to was the HA's and head pain, he even said that pressure in the head wasn't and that there would be no way to know if it was the chiari without doing the surgery. I dont know, it was like I saw two different doctors. I knew the final decision would be up to me since it wasnt emergent, I guess I just expected a little more input from the doctor. I really needed all of your opinions as alot of you have been through this. The way he spoke today made my dad dislike him very much, and that is not helping. My dad is very supportive and just wants to know whats wrong. It jsut ticked me off that he played down the severity of Chiari. I KNOW the symptoms it can cause, and even the NL said that she believes Chiari is mostly the issue. I just dont know if he is trying to cover his butt by saying that there may be no symptom relief other than the valsalva man. and ha's or if he honestly just doesn't know enough to realize it. :( Thank you all for all of your support. I thought of you all this morning when I was sitting in that office. Now I know why we ALL feel crazy half of the time. Last time we saw him he was sooooo different!!!
I did not expect him to say it was an emergent situation. What upset all of us the most, was the way he said that my other symptoms were probably not Chiari related..i.e. numbness in extremities, blurry doubled vision, balance issues...etc. All that he would attribute the chiari to was the HA's and head pain, he even said that pressure in the head wasn't and that there would be no way to know if it was the chiari without doing the surgery. I dont know, it was like I saw two different doctors. I knew the final decision would be up to me since it wasnt emergent, I guess I just expected a little more input from the doctor. I really needed all of your opinions as alot of you have been through this. The way he spoke today made my dad dislike him very much, and that is not helping. My dad is very supportive and just wants to know whats wrong. It jsut ticked me off that he played down the severity of Chiari. I KNOW the symptoms it can cause, and even the NL said that she believes Chiari is mostly the issue. I just dont know if he is trying to cover his butt by saying that there may be no symptom relief other than the valsalva man. and ha's or if he honestly just doesn't know enough to realize it. :( Thank you all for all of your support. I thought of you all this morning when I was sitting in that office. Now I know why we ALL feel crazy half of the time. Last time we saw him he was sooooo different!!!
COMMUNITY LEADER
Hi...I know u r upset, as u expected ur Dr to say something and did not, and what was said u did not expect...
Most chiari specialists will unless it is medically considered an emergency leave the choice of surgery to u...even at TCI, where I had mine, they did say it was suggested that they felt it could be of benefit to me...but , it was my decision....most of them do this...
And I also knew surgery was my only choice at the time......
Take a deep breathe and review with ur DH what was said, and revisit what and with whom u want to move forward with.,...do not rush this part,
You can contact TCI via email, fax or mail. They are great and easy to work with.
They did not charge me anything to review my case. They only charged me when I came to visit. They will review your records, mris, etc... first before they make an appointment. And they will only make the appointment if they think they can help you.
I am sorry that this Dr is making it more confusing for you in a situation of which we are already beyond confused. Stay strong. Do what you feel is best for YOU. Stay strong..
They did not charge me anything to review my case. They only charged me when I came to visit. They will review your records, mris, etc... first before they make an appointment. And they will only make the appointment if they think they can help you.
I am sorry that this Dr is making it more confusing for you in a situation of which we are already beyond confused. Stay strong. Do what you feel is best for YOU. Stay strong..
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