Main GuestBook (year 2000 archive)
Neurosurgical Service at MGH

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Please Note: This is an unmonitored guestbook. We can not endorse or be responsible for its content. For medical advise consult your physician.

I am trying to find out more about the IDET procedure and if it is beneficial. I have been getting info from the internet to see if the procedure has done any good. Also I talked to 2 people about it and they both said it wasnt benefical to them. The one person had their ventral nerve burned and made their back worse. I am only 19 years old and I have 3 bulgings discs and a herniated disc and right radicopathy. I have had 3 treatments of the triggor block injections and it helped my right leg for awhile but now I am getting the pain and the numbness back. I really don't want the procedure done but if I has done any good what so ever to anyone or if it has done worst I would really appreciate to hear from you. Thank you.
Tina <pokie198@hotmail_DOT_com>
- Sunday, December 3, 2000 at 01:40:39

HELP ( My e-mail:zqm_2000@sina_DOT_com) IĄŻm 56 years old, male. My name is xming from Shenyang City, China. I suffered the nose and throat cancer (tumour) in 1989. Through radiotherapy, I fully recovered from the cancer. But from the early days of 1999, I found (1). ItĄŻs difficult to swallow; (2). Cough and irritate the throat when drink water; (3). If stretch the tongue, it looks turn right; (4). Do not speak clearly. After the MRI check-up, the tumour doesnĄŻt have a relapse, neither does it transfers. And now the state of the above illness is more serious day by day. If you master anything helpful to my illness, please tell me which kind of illness it is and how to cure the illness. Your kindly help is greatly appreciated. A painful patient
xming <zqm_2000@sina_DOT_com>
shenyang, - Sunday, October 15, 2000 at 22:55:38

Is it true that it's impossible to do a surgical operation of an aneurysm in the brain because there was too much damage (in the brain)? Since 5 days the french surgeon said me that I must await a natural deaph for my wife (5 days today). Is it true that it's impossible to try something ? Why it's impossible to try something . Can you help me ? I'm in France. Thank's.
Richard Dorobisz <pkdz2@aol_DOT_com>
Lille, - Sunday, August 6, 2000 at 20:44:19

Trying to make contact with a Patient recently admitted to Boston General with head injuries as a result of a golfing accident at Nantucket. Pateint's name Jim Geraghty
Thomas Anderson <tandson@iol.ie>
Waterford, IR - Sunday, August 6, 2000 at 10:58:18

Whatever you want to do, do it now. There are only so many tomorrows. --Michael Landon
NESS <clinic@ness.co.il>
- Thursday, August 3, 2000 at 12:12:50

My father is 51 years old and he has been diagnostic the gliomatosi cerebrii. He hasn`t any symptoms. Please we need help because we don't know anything of this tumour. We have search in internet and have not found anything. We want to know the terapies, survival, and talk to other persons who have the same problem to explain us his experience. Please help me !!! ORIOL v
Oriol <urihal@teleline.es>
Reus, - Sunday, July 30, 2000 at 18:22:40

I would like any information on Oglidendriglioma Brain Tumors. Those who have it, those who live with someone who has it, medical prognosis' and/or how to live with it? Thanks
Susan Henderson <hender@lemoorenet_DOT_com>
Lemoore, CA - Friday, July 21, 2000 at 15:07:32

information on meningoma
pjjones <pjjones@peganet_DOT_com>
ft.myers, fl - Sunday, July 16, 2000 at 13:44:01

I just had the IDET proceedure.and it was HORRIBLE.I thought they would at least control my pain some..NEVER AGAIN,,I SCREAMED AND CRIED THRU THE WHOLE THING.i GUESS THE l% WAS THE WORST.THE DR SAID i HAD no DISK THERE..AND HE KNEW THAT BY THE DISCGRAM..iT WAS horrible!!!!
Lynne <rsdsux@aol_DOT_com>
gilmer, tx - Thursday, July 13, 2000 at 16:30:04

I am looking for the best eye center in the United States. My brother's daughter, was born and can't see from her left eye. I would like some help in referal to a very good hospital. Please if anyone can help me, I would really appreciate it. We are willing to bring her to the United States to help her so she can see from her left eye. Thank you very much!
Muneer Bakhsh <muneerbakhsh@hotmail_DOT_com>
Medina, - Tuesday, July 11, 2000 at 11:25:07

-
Kaya Wilson <kaya_wilson@hotmail_DOT_com>
Auckland, - - Tuesday, July 11, 2000 at 04:46:03

The site is really mind blowing and leaves me with mixed emotions. My sister has just been diagnosed with a 1cm in diameter prolactinoma and the endocronologist is sending her for a neuro surgical opinion on Wednesday the 12th. Should she go the surgical route?. She has ben unwell for a year but ceased menstruating in Dec 1999. She is 35 and we are very shocked and frightened by the whole thing. Any replies would be gratefully received. Particularly from people who may know information on what is available here. Thanks to you all.
karen barde <j.mcmahon@ukonline.co.uk>
edinburgh, - Sunday, July 9, 2000 at 13:01:01

thank you for the oppertinuity to browse your web pages I have NF1 and I do not know much about NF , I was pased down the gene threw my father and his father and so forth, I would like more information on how I can recive monthly e-mail on NF and the research so that I may not pass the gene on to my next child. thank u justin smith
Justin Smith <Odinsdream2@aol_DOT_com>
hollister, mo - Friday, July 7, 2000 at 01:42:52

I have a burning sensation and a numbness in my left leg between my thigh and knee. The doctors I`ve seen are "stumped" as to the cause. Do you know the best reference for finding a doctor or information for the cause of this condition? Thanks!
Billie <boop237@webtv_DOT_net>
fort worth, tx - Tuesday, July 4, 2000 at 13:19:31

In late august of 96', I was hospitalized with a bleeding pituitary adenoma. My right eye was not able to move because of the tumor up against the optic nerve. Very painful memories. I continued to work in my field of engineering for the next two years, until, all the untold effects of "pan-hypo" set in; fatique, weight gain, diabeytes insipidus, etc. I was asked right after the surgery to become part of a "growth hormone" study, but, for whatever reason, I never was contacted. I now have been disabled for 2 years, and I would like feedback from others in similar situations. I am also finding out how "cognitively," my thinking has been affected. My memory is not that of a 47 year old male, but sometimes of someone 20 years older!! Lower back pains, I could go on and on, but, please, if I could exchange some support, or some ideas with anyone who has the same or similar esxperiences, that would be greatly appreciated. Feel free to e-mail me at any time, and if there are any other chat rooms or links that someone could pass along, that would be great!! Looking forward to any feedback; regards, Overton (manny)
Overton H. Manuel <fluidmotion@mediaone_DOT_net>
Ma - Tuesday, June 27, 2000 at 19:58:39

I have been diagnosed with Bilateral Tinnitus and just scheduled to take an MRI to see if I have Acoustic Neuroma. ENT said since it is in only one ear it could be. I am scared as hell that it may be positive and need surgery. I do not have any other effects accept the air leaking sound. I do have a little hearing loss but incidental. Anyone have any words of wisdom... Like I said scared in my case is an understatement. Thank you Ron
Ron Simmer <ourintrepid@msn_DOT_com>
Lakewood, ca - Saturday, June 17, 2000 at 23:07:34

I just found out my nephew who is 6yrs old has a brain tumor on the pituitary gland. Would like any type of information or feedback from others. lcd
Laurie Desabrais <honeybunneybear@yahoo_DOT_com>
Burlington, VT - Thursday, June 15, 2000 at 06:55:56

I'd like to chat to someone who has pelvic cancer
Bernice Duffenais <duffenais@home_DOT_com>
Calgary, Alberta - Monday, June 12, 2000 at 11:31:34

My fourteen year old son was diagnosed with an AVM on October 8, 1999. On October 20th, he underwent an angiogram to learn more about his particular AVM. We learned that it was over 4 centimeters in diameter and was located on the surface of his brain. A partial complex seizure on September 28, 1999 was our first indication that something was wrong with him. On November 12, 1999, my son underwent an open brain surgery to remove the AVM. He also had an embolization performed prior to the open cranial surgery. Based on the angiogram, the embolization was scheduled to take four hours. However, once the interventional radiologist began the procedure, he found two additional arteries feeding blood to the AVM which needed to be glued shut. The additional arteries were hidden in the angiofilms. The embolization ended after seven hours. The open brain surgery lasted an additional eight hours (2 hours over the scheduled time). During the surgery, my son hemorrhaged. This complicated the surgery. After 15 hours of surgery, I could barely recognize my son. He was so swollen. Over the next few days, his eyes swelled shut. It was pretty scary because he was unresponsive for awhile due to the medication to prevent his brain from swelling. Once the medication was reduced, he came around and we were home in a week. A week after we got home, he lost patches of hair. We learned later that it was temporary hair loss due to the radiation involved in the embolization procedure. It grew back within four months. He's still taking anti-seizure medication until July. In July, he will have an EEG performed and if all goes well, he'll be taken off the medication. Physically, you'd never know he ever had the surgery. Mentally, it's been tough. To complicate the stress of a major brain surgery, he's a teenager. He missed three months of school. Three months of his freshman year of high school. When he went back, he wore a baseball cap to hide his hairloss. Since baseball caps are banned from his school, he stood out like a sore thumb. It was apparent that he just didn't feel like he could fit in after the time away from school. Prior to his surgery, he had been an honor student. He was still as smart as ever but he was three months behind. He had a tutor for five hours a week while he was home but that only kept him caught up in one class. Most of the teachers were understanding and assigned him research papers to catch up with the missed quarter. I guess, it didn't matter to him. He felt that if he couldn't be an honor student, he may as well give up. Our goal for him to finish out his freshman year as best he could. We didn't expect honors. We're hoping for a fresh start in his sophomore year. I guess the reason I'm telling you about the mental stress is that even though it's been a challenge, we can deal with it. We could never deal with a time bomb in his brain. Can you imagine? He hemorrhaged in surgery. It was our greatest fear and the timing was perfect. He hemorrhaged while the surgeons were right there. We know we made the right decision to do the surgery. The AVM is gone. He turned fifteen in February and got his driver's permit last month. Once he off the anti-seizure medication, he'll be allowed to get his license. God has blessed us. God Bless all of you who have had to deal with this rare brain disorder. AVM's rarely prevents themselves in children and we were fortunate that he had the partial complex seizure (a change in his level on consiousness) and that we found a doctor willing to give us a cat scan. His symptoms were diagnosed twice as "stress and fatigue." The cat scan was performed to give me peace of mind that the neurologist would be treating stress. I wished I was proved wrong but feel fortunate that we caught it early. Thanks for hearing our story. God bless you all.
Julie Meier <juliemeier@msn_DOT_com>
Honolulu, HI - Thursday, June 1, 2000 at 04:15:45

Oklahoma University GreetingI love the design and colors.
University <r@r_DOT_com.vn>
- Sunday, May 28, 2000 at 10:20:01

I had a Thoracic Spinal tumor that was removed in Feb. 2000. The pathology report came back as a Malignant peripheral nerve sheath tumor, Grade 1/111. I am interested in finding other persons that have had the same kind of tumor and websites to research more on this tumor. Please email me if you have any information. Thanks.
Tony Nichols <aug31@bellsouth_DOT_net>
Lexington, NC - Monday, May 15, 2000 at 21:41:47

I would like any info on panhypopituitarism in adults. Thanks
Cheryl Henke <daniel_is_a@hotmail_DOT_com>
jackson, Wi - Sunday, May 14, 2000 at 12:45:30

I am a patient with bilateral cervical and lumbar radiculopathy(sp) and I wonder if one of the DRs could explain what it means in Layman's terms. Thank you
Bobbi Zermane <bzermane@microconnect_DOT_com>
Tarentum, PA - Tuesday, May 9, 2000 at 11:40:11

My neices' son has Spinal Muscular Artophy Type II, he just turned one in March. We have been going to the University Hosp. in Ia City, Iowa for evaluations, but think there is more that can be done. We are looking for anything or anyone that can help. My neice is will for her son to try about any expermintal therapy that may help toward remission and/or cure for this horrible disorder. Looking forward to hearing from you. Ellen
Ellen Frey <elfrey@adams_DOT_net>
Augusta, ILL. - Tuesday, May 2, 2000 at 15:10:19

I have just been diagnosed with trigeminal neuralgia. Can you help me out?
Vanessa D. Holloway <vanessa@lhsfna.org>
Washington, DC - Monday, May 1, 2000 at 12:59:34

I am considering having SpineCATH IDET Therapy. I have herniations at L4 L5 and Bulging at S1. I had considerable pain, cramping,and numbness in my right leg for months. Have missed nearly 5 months of work due to this until I had 3 epidural injections. This relieved about %80 of the leg symptoms, however did nothing for the back pain. I now have chronic low back pain and still some cramping and numbness in my right leg. I did have some pressure on 2 nerves to my right leg which was relieved some by the injections. I do have some nerve damage. I would liek to speak to otheres who have had this procedure and get to know whether they benefited from this procedure or not. What I really want to know, is if I do not benefit from this procedure, can it make the situation worse? If there is a good bulletin board for those who have had this procedure, please guide me to it, Thanks Rod:)
Rod Hedrick <rodhedrick1@cs_DOT_com>
Ft.Lauderdale, Fl - Wednesday, April 26, 2000 at 23:51:14

Hello! I wrote a letter on April 11,2ooo. I made a mistake on my e-mail address! It is corrected a shown. No wonder I didn't receive any responses, other than someone in Candad who knew Sympatico was ".ca", not "_DOT_com" ! & she graciously informed me by e-mail! A re-cap, on my concern that I had wrote about was, that I am waiting for neck surgery. I have C5-6 & C6-7 prolapsed(out of place) & I've been told the other crvical discs are herniated. I am on Compenstaion; a work injury for about 8 mos. now. I tried phsio for 2 mos. to no effect...only worse! Finally got a CT Scan then an MRI to find the Dx as as stated above. I have been seen by a Neurosurgeon & am going for a second opinion May 9th, in Toronto, Ont.( I figured, it would be unbiased to have this opinion out of my hometown)The Neurosurgeon is conservative & is hopeful that "possibly" my symptoms will subside on their own thus no surgery. He put me on a waiting list , to wait it out & see if this happens , as well as get the T.O. Specialist's opinion .Massage was rerejected from Compensaation..they insisted that Physio would be not only covered by them, but be more beneficial.My G.P. disagreed & cancelled it. I have numbness & tingling to the 4th & 5th fingers of my left hand & periodically get general weakness to arms & sometimes numbness to the left then to right..back & forth. I have dif. leaning forward; can't lift or walk too much; have given up trying to do A.D.L. around the house; try to walk short distances every day.I am so bored & frustrated with not being able to do the things I used to do, without experiencing pain. Any recommendations about surgery; your stories; share of symptoms, like mine would be greatly appreciated. Sometimes I don't know if what I feel is related to the displaced discs..almost think I am going crazy!hah more like very depressing handling all this on own. When I hear a Pop fizz sound at the back of my neck..do you hear this too? Sometimes a disconnected feeling, like my neck is not part of the rest of my body..like a dzzy feeling.Headaches ++.Mostly the Burning feeling, as the neck is on fire, then a goose-egg show at the base of the neck, mostly to the left base.I have used ice then heat & Motrin to control the swelling & of course, lots of rest!! No choice!hahaWhen it is uncontrollable I'll resort to the Demerol.Some days, not too often, I feel as if..hmm! Maybe i don't qualify for surgery..maybe I should forego surgery & put up with the fact I can't do as much & try to retrain for a less strenuos job? Do I need to be in excruciating pain, with numbness every day, before I should consider surgery? It scares me to think of surgery from the front of my neck, with a scar at the hip area, where the bone is moved up to the neck area.Would I feel like I am chokingafter surgery? What is the success rate of those who have had surgery? I'd love to hear from any one!! Thankyou for your consideration! Hope all are comfortable today..as I know those days when I am not! :-)
Kimberly <kimberly.andrew@sympatico.ca>
Kigston, Ont - Monday, April 17, 2000 at 22:24:09

Ive recently had a microdiscectomy procedure, my back feels somewhat better but I have a lot of burnig pain in my left foot and calf,does anyone know if this will go away Please help if you can thank you
HTurboman <HTurboman@aol>
Boston, Ma - Wednesday, April 12, 2000 at 10:48:24

I have compiled all my medical reports on my lumbar and sciatica pain. I am looking for a medical consult. If this possible, please give me a name and address to send to. patricia Mott
Patricia Mott <lnno59@rr_DOT_com>
hastings, ny - Saturday, April 8, 2000 at 05:35:54

On Jan. 11,1999 I was working for a paratransit driver,I was delievering a pass. to her home I got out of the bus and slipped and fall, I was knot out cold ended up at the hostipal they did a catscan it showed nothing 1 1/2 days later I was rushed back to the hostipal had a second catscan done and their it was #7 cerebral aneursym on brain stem. My question is can a aneursym be cause by tramu to a head injury.........
Jerry W Amis <Stalknkrazybear@aol_DOT_com>
Louisville, KY - Tuesday, April 4, 2000 at 13:05:11

I am a 23 year old female who is very frightened. About 4 months ago I got a tingling sensation on right side of body and burning feeling in my head it has since crossed over to my left side and the burning is gone. But it will not go away. I do not have insuranse and my doctor bills are piling up with no answers. I have had a CT and MRI and some blood work all neg. I go to a chiropracter now but doesnt seem to help me. The neurologist I was seeing prescribed me Zoloft I am not depresses!!! I am sick!!! I have searched and searched with no answers and am a single mother who has to work and care for child. WOndering what this could be and what the next steps to take are. Please someone out here answer me.
Tammy <tammy@i-star_DOT_com>
East Tawas, MI - Monday, April 3, 2000 at 16:19:47

I am a 23 year old female who is very frightened. About 4 months ago I got a tingling sensation on right side of body and burning feeling in my head it has since crossed over to my left side and the burning is gone. But it will not go away. I do not have insuranse and my doctor bills are piling up with no answers. I have had a CT and MRI and some blood work all neg. I go to a chiropracter now but doesnt seem to help me. The neurologist I was seeing prescribed me Zoloft I am not depresses!!! I am sick!!! I have searched and searched with no answers and am a single mother who has to work and care for child. WOndering what this could be and what the next steps to take are. Please someone out here answer me.
Tammy <tammy@i-star_DOT_com>
East Tawas, MI - Monday, April 3, 2000 at 16:18:59

afterfall down stairway several months ago, left side of face is still numb
John Pettit <smp@shentel_DOT_net>
Luray, Va - Sunday, March 26, 2000 at 15:31:22

I recently had a discogram of 5 levels and was found to have tears in 3 discs. it was suggested that I have the IDET procedure. But do not have limit activity other than wear a brace and do no twisting or lifting. Does this sound familiar to anyone?
Linda <boblin777@aol_DOT_com>
- Wednesday, March 15, 2000 at 21:09:02

My 7th grade class has to do a report on a profession and I picked brain surgery. I was wandering if anyone knows a brain surgeon who would be willing to let me interview them, over the internet. That is one of my objectives to the report. If anyone has anyone please email me as quickly as possable. Thanks!
jon <blasty007@fuse_DOT_net>
- Monday, March 13, 2000 at 20:00:08

Does anyone know of a Web Site or Medical Journal article that has information on the IDET procedure?
Eddie Jackson <e4899147@aol_DOT_com>
Lubbock, Texas - Monday, March 6, 2000 at 19:41:56

It's me again. Has anyone from South Carolina had or know of anyone that has had the IDET procedure done AND South Carolina BCBS paid for the IDET procedure? If so, please let me know. Thank you
Eddie Jackson <e4899147@aol_DOT_com>
Lubbock, TX - Monday, March 6, 2000 at 19:23:11

I am a candidate for the IDET procedure and my insurance company keeps denying the procedure because they deem the procedure experimental. I have Blue Cross Blue Shield of Texas, Health Select. Has anyone with this same type of insurance been able to get them to pay for the IDET procedure? If so, I would greatly appreciate some H-E-L-P!! Thanks alot,
Eddie Jackson <e4899147@aol_DOT_com>
Lubbock, Tx - Monday, March 6, 2000 at 19:13:06

Morphine Nerve Paste may not be for every one. This paste is compounded by the Doctor(s) during surgery. It is not manufactured by an FDA approved facility, therefore there are no GMP's(Good Manufacturing Practices) to follow. It has been reported by the CDC (Center for Disease Control) that caution should be taken when the paste is used, and more research needs to be done before the paste is used as an accepted means of pain control. There is some evidence that the paste, the way it is prepared, or how it is applied, may cause some severe problems. Most of the cases where problems occur is the thinning of the Dural Tissue and a resulting CSF Leak (Cerebal Spinal Fluid Leak)which requires additional sugery(s) to repair the leak. There is some suggestion that the Dura may be torn or cut by the Doctor during surgery, which complicates the used of the paste. But in fact no one knows for sure. I am a patient who has researched this problem as I developed a CSF leak 14 days after my first back surgery. I had two additional operations to try and repair the damage to the Dura. The Doctor did not succeed in curing the CSF leak and the result of three operations; a damaged dura, continued CSF leaks, chemical meningitis, serve back pain, and constant low pressure headaches. You need to check out information that the CDC has prior to consenting for a Doctor to use this paste to find out for yourself whether you want to take the chance on having problems later. The paste does a good job reducing the pain, but I do not think it is worth the risk of the complications that it may play a part in causing a CSF leak. Some research Doctors have not had any problems with this paste while CDC reports at one Hospital there was a high incident of problems with the paste that resulted in the patients requiring additional surgery to repair problems. The bottom line is you need to know that there are no standards for the mixing and use of this paste, and you might well be a guinea pig and are exposed to needless risks if the product is not prepared correctly and applied in the correct manner. Write me if you have comments and if you want more information I would be glad to share my story with you.
Catrafter@aol_DOT_com <Catrafter@aol_DOT_com>
- Sunday, March 5, 2000 at 21:18:41

40 yr old female with L4-5 disc tear and bulge.Discogram shows tear at L4-5. L5-S1 mild diffuse annular dis bulge collapsed at 50%. Suffering from low back and sciatica pain since 10/97. Under went surgery for themographic spine cath. Unable to work since 8/98. Unable to take care of my 3,5 and 7 yr old without assistance. Recently had a hysterectomy to stop severe sciatica and low back pain brought on just before and during my periods. The past 2 yrs I have numerous series of Steriod blocks. I am told that my L4-5 disc is floating. My syptoms are low back and sciatica pain that alternates at any given time with no apparant cause of injury. Severe side affects to all anti inflammatory drugs. Rely on hot baths applied heat and tylenol codiene 3.(for 2 yrs) to manaage pain.( I believe that I am addicted to the codiene. Chiropractic adjustments help allievate pain syptoms. Recently coughing or sneezing produces pain in low right side of back/buttocks. First Orthodpedic surgeon dismissed me because his recommendation was a 3 level disc fusion that he would not perform due to my age. I havae degenerative disk disease. My current surgeon since July of 99 solution for my pain is to lose weight. (215 lbs at 5ft 5in.) Looking for a second opinion. thankyou
patricia Mott <patricia.mott@mciworldnet_DOT_com>
syracuse, NY - Tuesday, February 22, 2000 at 03:15:26

40 yr old female with L4-5 disc tear and bulge. L5-S1 mild siffuse annular dis bulge collapsed at 50%. Suffering from low back and sciatica pain since 10/97. Under went surgery for themographic spine cath. Unable to work since 8/98. Unable to take care of my 3,5 and 7 yr old without assistance. Recently had a hysterectomy to stop severe sciatica and low back pain brought on just before and during my periods. The past 2 yrs I have numerous series of Steriod blocks. I am told that my L4-5 disc is floating. My syptoms are low back and sciatica pain that alternates at any given time with no apparant cause of injury. Severe side affects to all anti inflammatory drugs. Am unable to take. Rely on hot baths applied heat and tylenol codiene 3 (for 2 yrs) to manaage pain. Chiropractic adjustments help allievate pain sytoms.
patricia Mott <patricia.mott@mciworldnet_DOT_com>
syracuse, NY - Tuesday, February 22, 2000 at 03:04:36

I am 19yrs old with NF1, I have had it since birth. But because of other complications I was not diagnosed till 5. I am doing reaserch from 02/17 till 02/21. I am doing a speech in class to inform the other students about NF. I would like to talk with others who have NF for my reaserch and to be able to have someone to talk after words. When I was younger I got teased and harased about my cafe au lait spots. I hated to wear shorts during P.E. classes. I was called a freak among other things. No one wanted to be friends with me because they wear not informed about the disorder, thet therefore thought they would catch something from me. I am now doing fine. I thank God I have no serious problems. I do have tumors on my back and my sides. They are not noticable because they are under the skin. NF was suppose to be kept from me but my brother in a fit of childish rage told me, they had found out about a week ago and just did not have the heart to tell me at the time. I am afraid to have children but I decided to give it to God and let him decided the destiny. I have used my faith in God to deal with the pains, I have severe back pains and headaches. Most nights I cry my self to sleep or just lye awake all night. But compared to others I call this minor problems. My heart goes out to al of those with , families and friends having to deal with this disorder. Remember that you can always give it to god and he lead you. Take care and please write me back sometime so we can chat. Love-Jennifer
Jennifer Highsmith <jenny_bugs_3@yahoo_DOT_com>
surfside, SC - Friday, February 18, 2000 at 21:58:14

I am seeking info on adult onset non-communicating hydrocephalus, which my mother has been diagnosed with. She is 85 and I would like to know what to expect in the futrue for her. Thank you.
Carol Nielsen <cnielsen@d20.co.edu>
Colorado Springs, CO - Wednesday, February 16, 2000 at 12:54:44

I am so happy that I found this. I have have to sugeries and will problably go in for another one. I had a lamectomy and a fusion a L5S1. Now I am gjoing in for a discogram and a nerve test. I am afraid to have another sugery. I have 2 young girls and my oldest at 8 has gone through both and not taking it to well. My youngest at 31/2 thinks that she is the little mother. I am not sure what to do. Some days I can't get out of bed and on my good days I over do it. I am 29 and don't want to be using a cane or a walker for the rest of my life. Have any of you been able to return to work. I would love to but I am very afraid. I haven't been able to pick up my Aly since my injury. And that is all she wants me to do. As you can probably tell I am very confused on what to do.I would also like to know what IDET is. I haven't heard of it. Maybe it would help me. So if someone give me some insite on it I would love to hear it. Thanks.
Pamela Pano <PPano@aol_DOT_com>
Oceano, CA - Wednesday, February 16, 2000 at 03:10:04

I had the IDET procedure on two levels (L4-L5 & L5-S1) 8 weeks ago. I had nerve damage and now have a lot of pain in my right hip and down my leg. I have a wonderful doctor who has been very helpful and candid with me about my recovery. I'm just wondering if anyone else has had a similar experience and what their time frame was for relief of the pain (without medication). I would appreciate any information. Thanks!
Carmen <equinelink@hotmail_DOT_com>
WA - Saturday, February 12, 2000 at 00:59:28

Hi, I have been using the Huntingtons Disease Chat Line which has been most beneficial. I now find I cannot access it unless I have a user ID and password - how do I get these? Await your reply. Regards Julie
Julie Boyle <bba@bigpond_DOT_net.au>
- Tuesday, February 8, 2000 at 16:18:53

Researching IDET at work--Nurse Case Manager--to make a determination to approve procedure for patient/insured..
Lu Linn <Skygoil@aol_DOT_com>
Canton, IL - Monday, February 7, 2000 at 17:17:29

Does anyone in this area living with a Tarlov's cyst and has anyone found any help. I am going from one doctor to another and often they do not seem to know much. Mine is located in my lower back so I am very reluctant to have surgery, altho I am seeing a surgeon this week at MGH.
Krys <campoet@yahoo_DOT_com>
Cambridge, MA - Thursday, February 3, 2000 at 21:36:12

WHERE IS DR. CURTIS PAUL PAGE???? HARVARD MEDICAL SCHOOL 1994 MD IN GENERAL SURGERY!! PLEASE EMAIL ME WITH INFORMATION. HE WAS FROM ARIZONA.
Dr. George Conley, JD <AvvGConley@aol_DOT_com>
London, - Thursday, February 3, 2000 at 00:40:14

My mother in law has an undiagnosed neurological disorder. She has tremors, trouble swallowing, cannot feed herself, cannot walk, but does not have Parkinsons or MS. We're looking for a diagnosis or a radical way to relieve her disabilities, as she is only 57 years old.
Alison Brown <Alison_brown@hyperion_DOT_com>
CT - Tuesday, February 1, 2000 at 20:32:57

I am 25 years old. I was just diagnosed with a L5 S1 herniated disc which results in pain in my left buttock that radiates down my leg. I can't connect it to any injury although my job does require a lot of lifting and carrying. I've been suffering for @ 5 months during which I saw a chiropracter for 3 weeks, visited the emergency room twice and was mis-diagnosed several times. I was on Percocet for over a month and now I'm on Ultram and Ibuprofen. I've been in physical therapy for almost 5 weeks and I still can't sit for more than ten minutes, sleep on my back or tie my own shoes. My orthapaedic doctor gave me two options - continue with physical therapy for 3 more weeks and stay on the Ultram and add Celebrex and if I'm still in pain, do an MRI and prepare for surgery. I guess I'd like to know about other people's experiences with surgery (good and bad) and whether or not there is a substantial difference between having the surgery done by and orthopaedic surgeon versus a neurosurgeon. (A recomendation would be helpful in my search, too.) I'm very nervous about my future prospects and would really like some advice. Thanks.
Eileen <intune001@aol_DOT_com>
Westboro, MA - Monday, January 31, 2000 at 20:46:23

I have been diagnosed with an AVM in the right side of my head. I had an MRI and will have an angiogram on Monday 1/31. My doctor, Dr. Roth of Hackensack Medical Center recommends a second opinion concerning surgery options with Dr. Ogilvy.How is his schedule and are you accepting U.S. Healthcare?
Thomas J. Scialo <tom_scialo@homedepot_DOT_com>
Blauvelt, ny - Thursday, January 27, 2000 at 18:48:35

i am a 45 year old male, and with the exception of the following problem am in good health. eighteen months ago i woke up with a severe burning sensation on the front of my right leg, from just above the knee to the top of the thigh. it felt very much like an extremely bad sunburn would feel, painful to touch and movement. however there was no sunburn. about a month after this started, i was diagnosed with a herniated cervical disk at c6/7 and had surgery to correct that problem 3 months after the leg pain started. the surgery corrected the neck, shoulder arm pain, however the burning in my leg continued. the surgeon felt there was no connection between the cervical disk problem and the leg pain. as time passed the burning in my leg became worse, and spread into my abdomen on the right side and into my groin area. 6 months after this began the burning pain appeared in my right arm. now, 18 months after the onset of this, the burning is also on the backside of my right leg, from the buttock to the kneee. it is now also in my left leg from the knee to the top of the thigh, all through my rib cage, and is now above the elbow on my right arm. i have seen several doctors and still have no diagnosis. the following has been done: epidural injection into right hip - no effect, mri of hips, abdomen, lumbar, thoracic, and brain - all negative. emg tests on legs and arms - results inconclusive. ssep test - results inconclusive. numerous blood tests, and i mean numerous. only one test required a second look, something to do with porphryn levels, and that was done again checking for porphyia, which came back negative. i have seen a chirapractor - no effect. the following medications have all had no effect - relafin, effexor, celexa, neurontin, amitriptyline, mexiletine, wellbutrin. the pain medication given to me after the neck surgery had no effect on the burning pain. i am currently a patient at a pain management clinic. i have had several nerve blocks using marcane, to the lateral femoral nerve, which is the only relief i've gotten in all this time. however the relief ends when the blocks wear off. as this pain has spread to a larger percentage of my body, my ability to perform everyday funtions has decreased dramatically, as has the quality of my life. and i still have no diagnosis.
matt blaine <mab101754@aol_DOT_com>
cincinnati, oh - Saturday, January 22, 2000 at 11:09:16

I was diagnosed with an arachnoid tumor in 1997. I was given several types of medication to take during the on slaught of a headache. Recently, I have been having severe bouts of depression, which have never occurred in my life and is not in my character. My family and friends are becoming very concerned with my behavior of recent. Can someone enlighten me? Can these bouts of depression be due to my tumor?
Danna <Danna60Lee@aol_DOT_com>
Redlands , CA - Thursday, January 20, 2000 at 11:59:23