Need encouragement. I’m going to see Dr. Tew the week of June 8th. My appt with him it’s the 12th, as well as the CINE MRI. They said that he didn’t think the cause is my Chiari just by looking at my old MRI’S. So he wants to see the CINE. I am a Nurse and have been analyzing myself during the more than 5 years of having these symptoms and I KNOW I have intracranial hypertension because I have a sign of pulsitile tinnitus, in addition to hearing loss, vertigo attacks, and bad headaches in the back of my head and behind eyes, neck and upper back stiffness and pain. I am putting all my faith in getting help with Dr. Tew and just want him to look at everything. Has anyone had experience with Dr. Tew and Chiari 0 or ICH? THANKS…
Hi There, Trell...
I am so sorry you are dealing with all of this! I really can only tell you that I have read only wonderful things about Dr. Tew. have you read "Contents Under Pressure" By Ray D'Alonzo??/ A must read...his NS was Dr. Tew.
Please keep us updated on how you are feeling. Here for you..We are all in this Chiari thing together. I am sure there are times when you feel all alone..But know you are not..we 'get it'.....
thank you Lori…
here are three of them… I have had lumbar stenosis surgery and have not had a complete lumbar mri since 2005 post surgery. I’ve had a thoracic one and I have ossification of the ligamentum flavum and osteosclerosis/ spondylosis.
395-1.doc (80.5 KB)
396-8.doc (86 KB)
397-7.doc (85.5 KB)
you have to be on the main web page to see the mri’s.
Hi Trell,
Please know we are thinking about you. I am sorry you are having such a hard time. Dr. Tew is an incredible NS. I know you are a nurse and medically experienced. The best way to get a physician to help you is to make them see you as an individual that needs help not just another case. You have to reach them on a personal level. CM0 is tough. We have many Members with CM0. Have you had a LP yet? I also have IH that was majorly worse presurgical. If you take Diamox please keep current Kidney functions.
Good Luck Sweetie!!! We will be thinking about you !!
Tracy Z.
well…I have a major complication in that I have x-linked hypophosphatemic Osteomalacia…(Best known as Vitamin D Resistant Rickets,so any type of diuretic is contraindicated. The main defect is in the kidney and complications include kidney calcification, sui I have to be careful with not getting dehydrated and have follow up kidney function tests, abd metabolic monitoring. I was diagnosed when I was 2, so I’ve had chronic pain all my life.
Mandy, I haven’t had surgery yet. what is TNXB? I have always been as active as possible. My ankles are messed up now, so I was using the elliptical and some weights, but when my dizzy spells and vertigo attacks got so frequent, I haven’t been able to workout at all. When I don’t exercise I can tell quick, as far as pain and weakness. I’ve had the left sided weakness for as long as I can remember, by its just progressively gotten worst. I have learned to be very adaptive but I can only adapt so much. I’m just exhausted.
Sorry to sound stupid, but what is pulsitile tinnitus? Sounds like symptoms I have as well. Is it related to Chairi?
Pulsitile Tinnitus-when you hear your heart beat and can literally count your pulse in your ear.
I get like ticking sound my ears, and I have a ear pain, also dizziness and vertigo... feels like I'm under water sometimes. I'm sure I have CM not dx yet.
TrellC said:
Pulsitile Tinnitus-when you hear your heart beat and can literally count your pulse in your ear.
I have Chiari I, and Dr. Tew did my surgery a little over 2 years ago. He is a very good surgeon, although he is quite odd.
yes, Pulsitile tinnitus is a symptom of ICH and the vertigo and hearing loss also, as well as to Chiari.
Scott, how do you mean quite odd… as in quirky?
lol… true… 
It is sometimes difficult to tell when he has finished talking and wants you to respond. Sometimes I would interrupt him, and sometimes I would be waiting for him to finish, but he was already done talking.
I am a Mayfield patient. I see Dr. Ringer instead of Dr. Tew however. I know they do acknowledge Chiari 0 and they usually base their opinion on your CINE regardless of your degree of herniation! I hope you get the help you need. I think a lot of doctor's have weird personalities but remember to be assertive and don't leave until you get all your questions answered! :)
Dr. Tew performed my surgery in January 2012. I live 4 hours away from Cincinnati. He sent me home after my first appointment to keep a diary of symptoms for a few weeks and made me come back for another appointment before he agreed to do the surgery. I didn't see the point in that as nothing changed from my questionnaire on symptoms at my first appointment and the symptom diary, but I guess he wanted to be sure about things. Also, my chief complaint was pre-syncope and he didn't think it was being caused by Chiari. (He was right, apparently it was caused by low levels of norepinephrine) His bedside manner isn't the greatest, but he's world renowned and that's more important to me than bedside manner. I'm also the sensitive type that probably expects more out of a Dr.'s bedside manner than is normal :) You mentioned "pulsitile tinnitus." I used to have that when I laid on my back but turned my head to the left. It was SO loud! I don't have that anymore since the surgery. I guess it never occured to me that it went away until today when you mentioned that. Strange! I do still have a lot of pressure in my ears all the time though. I am consistently yawning to get them to pop, etc.
If Dr. Tew is willing to see you, I think that's a positive sign. You should type up a summary of all of your symptoms and tests you've had done (with dates) and try to condense it to 1 page. I did that so he was able to look at everything in one place, on one page without having to thumb through pages and pages of medical records. I did include all medical records with the summary though incase he needed to get more details about something. Keep us posted on how your appointment goes!
Scott, I agree with your statement. I felt the same way!
Scott said:
It is sometimes difficult to tell when he has finished talking and wants you to respond. Sometimes I would interrupt him, and sometimes I would be waiting for him to finish, but he was already done talking.
I think that is one I haven’t seen…I had seen one but the results were inconclusive. Thank you so much.