Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Hi Terri, thanks for your time to respond. i am from shelby twp. i had my surgery at royal oak beaumont through a dr. junn. he is also out of henry ford. i had another surgery in april for a different problem. i had stomach surgery. i hope that didnt do anything tilting my head back. would certainly explain things though. my surgery was november 9 for the chiari. the symptoms that are returning is the pressure in the back of my head when i do anything that take my oxygen, ex: yell sneeze, cough hard, sing, etc, and my hands are trembling (basicaly my right) and twitching, my eyes are twitching and my vision is getting spotty. i just feel very weak on my right side and the tingling is back, only intermitently though. these are all symptoms that had alleviated after surgery and returned with a few new ones never experienced before. i dont know how to not drive myself crazy when for yrs noone believed me and now im afraid of something being missed again, i know my body and something is not right, or is it for a chiarian? thanks for your advice, ill check out my dr on wacma like you said, from Michigan --- Tllynn10@... wrote: > Hi , > > I am also from Michgan and live near Flint. Where > did you go for your > surgery, and how far was your herniation? I had > decompression done eight > years ago in 1994 by Dr. Malick at Henry Ford in > Detroit. I had a 1.5 cm > herniation. I also had symptoms from the age of 21 > to 27 before my > diagnosis and was also termed hyperchondriac. I > wrote a letter to every > doctor I ever saw 40+ while searching for a > diagnosis and let them know what > I really had. > > Reguarding return of symptoms. Since my surgery > eight years ago, I continue > to have problems swallowing, back pain, and neck > pain, and muscle spasms. > These symptoms are all tolerable and I have lived a > normal life. I was > working full-time, going to college part-time, and > raising a family. About > four years ago, my neurosurgeon stated that I had > fibromyalgia and that is > why I have these symtpoms. He also stated that I > was decompressed very well. > > In June, I had a return of severe symptoms for the > first time in eight years. > I am currently on sick leave and still going > through all the tests to figure > out why. I started with severe headaches, spine > pain, numbness and > tingling, dizziness, nausea, and muscle weakness and > fatigue. My > neurosurgeon states that the surgery still looks > good according to the MRI > and there is no compression. He has ordered an MRI > of the entire spine and > brain w contrast to look for scar tissue from the > prior surgery and cysts in > the spine. My neurologist thinks that I may have > had a stroke as all of my > symptoms returned when I had a scope done on my > stomach and they tilted my > head backwards. He stated that in my case because > I have such a significant > hernation, when hyperflexing the head, it can cut > off the blood flow to the > brain because of the hernation. The good new is > that my symptoms are > starting to get better day by day. > > How big is your herniation and what symptoms are you > having? My advice to > you is stay calm and don't panic. I just about > drove myself crazy this past > month thinking that my symptoms are back after eight > years and here to stay. > Wait until all the tests are done and listen to the > surgeon's opinion and if > your not satisfied, I would seek the opinion of a > specialist. On the WACMA > website, they have listed some doctors who are > familiar with Arnold-Chiari > malformations. There are only a couple in > Michigan. > > Take Care, > > Terri in Michigan > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 thank you so much sarah, ill ask about that. my next question is how do you find a chiari specialist? --- WYVERNNC@... wrote: > > > Is your neurosurgeon among those who uses CINE MRI > to access csf flow ? Given > the return problems your discribing I'd say your > right that something is up > ..and its possible that CINE MRI would better help > determine what it is ( > regular MRI isn't able to fully demonstrate some > sorts of problems such as > internal scaring well where CINE can show just how > well the flow is moving > along ) . > > If your neurosurgeon does a new MRI and feels that > things look fine ..I > wouldn't wait and watch ...I'd consider another > opinion from a full blown > chiari specialist . There are several scattered > around the us ...and often a > delay to getting an appt . so you may want to > consider making an appt with > one now ..you can always cancel if you feel it isn't > needed . > > in Paradise > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 thanks for the list. has anyone out there heard of dr. frederick junn from michigan. he is out of henry ford from detroit and royal oak beaumont in the rose cancer center. if not is there any recommendations for michigan? thanks, - -- WYVERNNC@... wrote: > > > there are about 8 widly regarded as true chiari > specialists in the US > > Dr Milhorat in NY mostly adults ..some peds > Dr Oro in Missouri > Dr Menezes Iowa City > Dr Frim - Chicago - Mostly peds ..sometimes adults > Dr Ellenboggen -Seatle ( does peds mostly .not > available due to > addministrative stuff right now ) > Dr Batzdorf UCLA > Dr Barth Green - Miami > > Addresses /phone numbers are on the wacma recomended > doctors page found under > onsite resources . > > * gosh..wondering if I've forgotten someone ..I've > been known to do so > ..tehehe . > > Dr's Heffez , Dr Rosner and Dr Weingart are all > three caught in major > contravery by many folks thinking ..but do have a > loyal following of > believers too ..they approach surgery both > physically and theoretically in > ways that differ from the main research physicians > ways ..each taking a > differnt slant on things from the others . > Personally I felt like staying > within the more conservative approach to start . IF > that had failed I might > have considered what Rosner advocates ..but not the > other two for me at all > from attending lectures /the asap confrences and my > former nursing background > . __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2007 Report Share Posted February 7, 2007 Hello, Just found this group browsing around today. I'm a 25 yr old male who was diagnosed with PSC in 2000 shortly after being diagnosed with Ulcerative Colitis. For the past 7 years I've been essentially symptom free until this last week. Everything seems to have crashed down at once. Had my first ERCP earlier in the week during which the doctor implanted a stint. I don't know how common this is, but I've continued to have abdominal " soreness " for 2 days now after the procedure. It seems different than other abdominal pain I've had in the past. At this point I'm waiting on a referral to a liver specialist to begin the process of getting on a transplant list. I just got married this summer and feel to young to be dealing with these types of health issues but I guess I already got 7 years for free so now is my time : ) Any advice or words of encouragement would be greatly appreciated : ) Thanks in advance. Quote Link to comment Share on other sites More sharing options...
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