Hi: Happy Mothers Day to all the ladies out there today!
Is anyone from the Charlotte, NC area? I was wondering what Neurosurgeon you have seen?
Has anyone had a Neuropsychological Evaluation? I guess I am starting to get a little anxious as my testing is starting to confirm my Chiari.. I had my initial consult and am now waiting for my Lumbar Infusion Study on the 29th of May. I was told I might have to have a Cine MRI after that. I wish while I was waiting I could have had the MRI so all the results could be discussed after the LIF. Any info anyone can provide will be appreciated.
Also, I am per my Neurologist having a Neuropsychological study on June 11th. I looked up a sample test and was shocked to see the tests. The flat paper trying to figure out which would be the correct one if it was folded and put into a 3D object floored me. I am not a stupid person but this is not and easy test plus when you are having concentration problems it is that much harder. I asked the neurologist if he still wanted me to have the test being that I am having the LIF from the Neurosurgeon and he said yes. I know I have recall problems, that is what made me go back to my neurologist and I also had difficulty where I couldn't balance the checkbook and finally figured that I had posted a deposit 2 times. Grant it, it was a big mistake that never happens but I also found the mistake (before my husband did thank God). I would think that if my tests confirm the diagnosis then treatment would be next and hopefully everything else would improve. I know though that if some of the deficits (symptoms) that we have had have been for a while they might not totally improve. I am not looking forward to the Neuropsych test at all...Actually I am more eager to have the LIF and get some results.
Anyone, please let me know your story or if you know of Charlotte Drs. I am in the Carolina Hydrocephalous clinic that includes Chiari!
I went to carolina neurosurgery and spine. They have several offices in Charlotte. My surgeon was dr. Mark van popel. He was very good. He explains everything and does the surgery in one shot. His staff is great.
I went to carolina neurosurgery and spine. They have several offices in Charlotte. My surgeon was dr. Mark van popel. He was very good. He explains everything and does the surgery in one shot. His staff is great.
Thank you Hope, I actually must have had a "brain burp" as I noticed I put Carolina hydrocephalous clinic. It actually is the Clinic that is in Carolina Neurosurgery and Spine. I had one visit with Dr. McLanahan who my neurologist referred me to. I liked him, he seems to think that I will have more than the Chiari as a diagnosis. He definitely feels that my spinal fluid is not circulating. I just wish the MRI could have been done while I am waiting for the Lumbar Infusion Test on the 29th. It all could have been tied in on that day. I also have had multiple spine surgeries and see Dr. Paul Kim who is excellent. No one picked up on this at all. I had to see a cardiologist and he reviewed all my records and asked if I have ever had an LP, I said no but they said I didn't have MS from the MRI I last had. He said he wasn't thinking MS, he was thinking normal pressure hydrocephalous and told me to call my neurologist ASAP and he would send his notes. Dr. Mclanahan does not think it is the NPH but still once I know what is going on I have to send this cardiologist a note of thanks because if it wasn't for him I would have never gotten this far with a Dr.
How long ago did you have your decompression? Which hospital did you have it in? I hope you are doing well at this time.
Thank you so much for your reply, much appreciated!
Hi. I had my surgery on 3/27/14. It was done cmc-main. I was in the hospital 3 nights. I had 5 mri’s from initial visit with an orthopedic doctor until surgery. I am doing very good. I do have some bad days but I slow down and rest when possible.
Congratulations, it sounds like you have had good results with your surgery. That is so nice to hear. Sorry that you have bad days but just 1 1/2 months post op it sounds like you are ahead of yourself! Glad to hear that you can slow down and rest, I know from my other surgeries that is so important. I had one of my spine surgeries at CMC main they were very nice there. I used to work for Novant so am partial to Presby Main but have to go where the surgeon goes if you want the best taking care of you. Keep up the good work and best wishes for continued and good healing.
Hi, good afternoon. I am in the Charlotte area and I too went to the Carolina Neurosurgery and Spine. My surgeon was Dr. Mark Redding and he is AWESOME. I was referred to him by my neurologist Dr. Kim Jung (male) at Northlake Neurology in Huntersville. I had been having issues basically all of my life but was never DX until May of last year because things had become really bad for me neurologically. I had my first surgery on July 12, 2013 at Presbyterian Main but then begin having some major issues about 2 weeks after the initial surgery, I developed a Pseudomingocele but Dr. Redding was on top of it and took me back in for a second on September 6, 2013 again at Presbyterian Main. The first surgery I only had a Laminectomy of the C1 and a Craniotomy. The second surgery was to correct the Pseudo and to add a Dura Patch. I was only home for a couple hours after the 2nd surgery when I had to be readmitted this time to CMC Main for a CSF leak and was in the hospital for 7 days. During this entire process Dr. Redding was there and was amazing. I know my story may sound terrible but it really turned out really well and I would recommend Dr. Redding and any of the other doctors at Carolina Neurosurgery and Spine to anyone that suffers from our condition. I think my issues after surgery came from how long that it took me to be diagnosed which was 36 years and the condition that I was in before I had surgery so it took me through some things but I am happy to say now that I am doing extremely well now. After all of that I was back at work by November because of the care I received by Dr. Redding at Carolina Neurosurgery and Spine.
Hi, good afternoon. I am in the Charlotte area and I too went to the Carolina Neurosurgery and Spine. My surgeon was Dr. Mark Redding and he is AWESOME. I was referred to him by my neurologist Dr. Kim Jung (male) at Northlake Neurology in Huntersville. I had been having issues basically all of my life but was never DX until May of last year because things had become really bad for me neurologically. I had my first surgery on July 12, 2013 at Presbyterian Main but then begin having some major issues about 2 weeks after the initial surgery, I developed a Pseudomingocele but Dr. Redding was on top of it and took me back in for a second on September 6, 2013 again at Presbyterian Main. The first surgery I only had a Laminectomy of the C1 and a Craniotomy. The second surgery was to correct the Pseudo and to add a Dura Patch. I was only home for a couple hours after the 2nd surgery when I had to be readmitted this time to CMC Main for a CSF leak and was in the hospital for 7 days. During this entire process Dr. Redding was there and was amazing. I know my story may sound terrible but it really turned out really well and I would recommend Dr. Redding and any of the other doctors at Carolina Neurosurgery and Spine to anyone that suffers from our condition. I think my issues after surgery came from how long that it took me to be diagnosed which was 36 years and the condition that I was in before I had surgery so it took me through some things but I am happy to say now that I am doing extremely well now. After all of that I was back at work by November because of the care I received by Dr. Redding at Carolina Neurosurgery and Spine.
Hi; Thank you so much for your reply; I truly appreciate it! I will tell you from the start, it is a very small world as I too, go to Dr. Jung. I have been going to him for 3 years and love him. He has helped me with migraines has me on Gabapentin but the severe pressure in the head has been said to be tension headaches. I have other issues going on and my regular cardiologist sent me to see a cardiologist that specializes in electro physics of the heart. When he was going over my history he asked me if I ever had a Lumbar Puncture. I told him no, my MRI showed I didn't have MS, He looked at me and said that he can't put the diagnosis in his letter but will put that I need further neurological workup. He did tell me that he thought I had "normal pressure hydrocephalous." Dr. Jung is wonderful, corresponds freely by email plus I used to work for Novant so we have a good Rapport. I sent him an email and told him what the Dr. had said and also that I was having trouble recalling things and made a very big error on our check book. He had me in the next day, I saw him and Jason the PA....had an EEG and then they discussed the NPH and said that they didn't think I had it but if I wanted they would send me to a neurosurgeon. I said yes, yes! Saw Dr. McLanahan and things have been moving from there. I got moved up for my Lumbar Infusion Study to next week. I am sorry for the problems you had, I also have a psuedomengiocele from a lumbar surgery I had 2 years ago from one of the spine surgeons at Carolina Neuro. Funny thing is 2 years ago I had an MRI of the brain done and it mentioned a mild Chiari Malformation....Saw my neurosurgeon, a brain neurosurgeon at Carolina Neuro and also saw Dr. Kim. Told them all about my nephew and they all said that it was too mild to be causing the problems I was having. If I look back, I have probably had symptoms of this for more than 15years but always put them of as something else as they were mild. It has been the last 3 years that they have been so severe, I have had many falls, head pressure like my head is going to explode and electric shocks going up the back of my neck into my head. They don't occur often but when they do they make me jerk forward. It is amazing that this can go on and no one recognizes it. Dr. McLanahan said that he believes after he does the LIP and probably a CINE MRI that I will have multiple diagnoses! Oh JOY! At least I will know what I have and pray that they can all be treated. How were you finally diagnosed. Did Dr. Jung find the Chiari on you? Did he want to send you for a Neuropsychological testing? I am scheduled for one of those on the 11th of June. He wants me to have it no matter what Dr. McLanahan comes up with. What kind of testing did Dr. Redding do on you. Did it take a long time from the time you first saw him until you went for your surgery? I am sorry for asking so many questions but feel that with our Drs. we have a bit of a bond going on here! Thank you so very much! I am very happy that you have had a good outcome even though you had a rough time at the start! Lily :)
I have had episodes where I can't recall names of things and people. I can picture them but can't think of what I want to say. I also had a problem with our check book where I had added a deposit twice and also forgot to deduct some things. Fortunately, we had enough money in the bank so it didn't cause me any problems. Sometimes I also have difficulty with concentration. My neurologist thought it would be a good idea to have an evaluation. After I saw the neurosurgeon, I wrote him an email told him what the neurosurgeon told me and asked if he still wanted me to have the consult and he replied yes. I go next week for my LIP...will see what that shows and where we go from there. I haven't spoken to the neurosurgeon about the evaluation but he does know of those problems. I read while surfing about Chiari that it isn't uncommon for people to have these evaluations but that is also why I asked here to see if anyone has had one. I just wish that when the MRI that I had 2 years ago showed by the radiologist report that I had a mild Chiari malformation someone acted on it with my symptoms and not being mild and ignoring. I told them that my nephew had just had surgery for his but they said mine was mild. It is also a Dr. in the same practice that I am seeing now and he says that he believes that besides the Chiari I will have other diagnosis as well. I like this neurosurgeon, wish I had gone to him 2 years ago instead of one of the partners. My spine neurosurgeon who did a fusion on me from C2-C6 and L4-L5 even said it was mild and he is from the same group as well. I am grateful to now have the brain neurosurgeon that I have, he is wonderful and I believe we will get answers and the help that I need. Thanks Beeba.
Good morning Lily, no problem with the questions I am just so happy that I am not alone in Charlotte. This illness is so rare that I would have never thought that someone so close to where I live would have it. It was really a short amount of time from the time I was diagnosed until I had the surgery because I was not doing so great neurologically. I had been having issues basically all of my life but they really got bad back in 2012. I begin having issues with walking, terrible dizziness my balance and coordination was terribly off and the headaches became unbearble. The doctor that I was seeing at the time sent me out for a MRI but never gave me the results and only treated me for vertigo with Antivert. This went on for another year but within this year September of 2012 I changed doctors because I was not happy with the doctor that I was seeing. Late May of 2013 while at work my face took on a mind of it's own. It started contracting and having muscle spasms, the right side would contract and spasm while the left side was droopy and big looking with my entire right side from my shoulder down into my right leg going numb so my co-worker rushed me down the street to my PCP (lucky for me my doctor office was 2 minutes away from my job) Dr. Goodman is an AMAZING person and called Dr. Jung who is a partner to the my doctors office which is Lakeside Family Physicians because she could not figure it out, she initially thought I had a stroke then she thought Bells Palsy and was on the phone with Dr. Jung trying to describe to him what was happening. He told her to send me back for another MRI and that is how I was diagnosed, she called me the next day with the results and was like you still have Chiari. I was floored because I never knew I had it, never heard of it and I told her this and she said to me your previous doctor never told you because it is showing on your last MRI he sent you out for 18 months ago. She told me how to spell it and said to go on the web and research it, I bought fainted when I saw what it was but most of all that there was no CURE. From there I went to see Dr. Jung, he initially didnt think my Chiari was the cause of my problems because it was only 7mm until about a week later when I emailed him because I was nearly fainting if I would bend over. He emailed me back and said that was serious and referred me to Carolina Neurosugery and Spine where I saw Dr. Redding. He looked over my medical records and said that the best fit for me was surgery because of fear that I would have permanant neurological damage that may not be reveresed but that he could treat me with steroid treatment if I did not want to do the surgery right away. I opted to do the surgery immediately because I was already neurologically doing terrible. Dr. Jung never recommended the neuropsychological test for me I'm guessing because everything went so fast for me. It was literally the end of May 2013 Dr. Goodman thought that I already knew about the Chiari when she diagnosed me, I saw Dr. Jung 2 weeks after that, didnt make it to my 2nd appointment with him because 2 weeks after that I was handed over to Dr. Redding where my surgery was scheduled 2 1/2 weeks after that. After the first surgery I was in the hospital for 3 days and I did really well for the first 2 weeks but then a pain like I have never felt before begin. I had a very bad headache, as if an electric lightening storm was going on in my head, then it got to the point I could not walk so I was in a wheelchair which I feel could have all been avoided had the ER just told my Neurologist what was going on from the scans they did, long story short I got to my follow up appointment mid August after emergency room visit to find out I had the Pseudomingocele then I was scheduled to have the 2nd surgery but I must say I improved in between waiting on the 2nd surgery which wasn't for another 2 1/2 weeks out on September 6th, by the time I had the 2nd surgery I had went from the wheelchair to a walker to crutches. I was only home a few hours from the 2nd surgery when I had to be readmitted for a CSF leak due to one side of the dura patch had not completely sealed by the time I left the hospital. I was in for 7 days one day away from having to have a shunt inserted so on the 7th day instead having a shunt inserted I was packing up to go home, I was so excited because that was the longest 7 days, I could not sit up so I had to learn to eat, and bath myself basically do everything laying flat. I came home on the 17th of September and celebrated my 37th birthday on the 22nd of September. I have slowly but surely been improving because the nurses even my neurologist was shocked and excited that I was even walking out of the hospital without a shunt. I went back to work on November 4th and have been doing extremely well every since. I do at times have some minor issues but my PCP Dr. Goodman is excellent and I feel that she really saved my life because had she not been so deligent and observant when I went in last year I don't think my outcome would have been the same. Whenever I have a complaint about anything wither how big or small she listen and she understands and she never fail to tell me I need to be real attentive to you and your illness because with Chiari you never know from one day to the next and with all that you (me) have been through I will listen and take everything you say to me seriously because Chiari is so unpredictable. I always tell myself that no matter how bad my days get or how bad I may feel I will always smile and push forward because I am determined to have Chiari and not let Chiari have me. I started out in the beginning with 4 bottles of meds and now I am down to 2 which is the Gabapentin that Dr. Jung's PA Jason Diehl prescribed me and I have to take Vitamin D that Dr. Goodman prescribed for a Vitamin D deficiency other than that I am doing great. If you have any other questions please feel free to ask, I find alot of great answers on this site because everyone on here is AWESOME especially Tracy, Abby, Mandy and BeBe just to name a few. I was lost when I first found this site having been just diagnosed and they were great, went above and beyond to answer my question and provided excellent information that was a great help to me. Hope this all was helpful, if you want to talk further maybe we could exchange email addressess because as you can see I love to talk and we do share the same doctor. Have a wonderful day.
It sounds like you have a good PCP as well. I have been in that Lakeside office for lab work that Dr. Jung has ordered. One of which was the Vitamin D as well, but mine was normal...I know its bad but I am a sun worshiper. When my head hurts real bad, there is nothing more that I like than going and sitting in a chair that will support my neck and let the sunshine beat down on me. I love it, makes me feel good all over.....until I go to get up and WHAM....there starts the head again. Besides the natural Vit D, my primary has had me on D3 for years. Dr. Jung put me on the Gabapentin several years ago and about a year ago put me on Elavil to help me sleep. It works but now with this exacerbation of the Chiari I had to stop taking it. My husband works 3rd shift and I am afraid to take it at night because it makes me very relaxed and I am afraid of falling. That is one of my symptoms, my balance is so bad that I have had many falls so to take the Elavil would just make it worse. Dr. Jung approved of my stopping it when I told him that I did. He agreed that my balance was bad enough. I like Jason, he is new to neurology but seems to be doing good. He is very detailed and when I was in the last time that I had my appointment moved up he was very concerned. I got a call the other day that my Lumbar infusion test has been moved up to the 23rd of May so am hoping to get some answers next week. I pray that soon we will know what no one was able to tell us all these years. Be Well.