Page 2 of 2 FirstFirst 12
Results 16 to 28 of 28

Thread: Unresolved problem since May

  1. #16
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    That's one that I have not heard of! Hope that you are feeling better progressively! Do you eat a lot of protein? That might be helpful in gaining weight and feeling better as well as the usual lots of fresh fruit and vegetables. Protein milkshakes? Just some thoughts.

    Thinking of you and hoping that you feel better in the future,
    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  2. #17
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    So sorry to hear about your problems and hope that the road to recovery from this post-surgical problem is short. Grastroenteritis is not much fun Gardenia. Being a former Med Tech, I have heard of your problem, unfortunately not the solution. I am battling C. Diff right now which has inflamed my bowel so I kinda know how you feel. Get well soon and keep us informed.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  3. #18
    Join Date
    May 2012
    Location
    El Centro, CA & Baja California, Mexico
    Posts
    193

    Gi problems

    I feel that going to UCSD and all the other gastro doctors is futile so far. All the do are expensive tests to try to match one up to a specific box. Once they have an idea - the they fix but no one has the cure or the cause.

    I gone up back to 35MG and felt good for 2 days but not as leveled as 40mg. Taste buds gone again which kills the eating thus the weakness.

    I wondered if any of this would have surfaced if I had not elected the spine surgery. Once you undergo major trauma or inflict it then the body acts up.

    gardenia
    Gardenia
    Baja California, Mexico & El Centro, Ca
    pre-surgery 75° and 89° - post ?
    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

  4. #19
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Susan's mention of protein shakes reminded me of older posts from Ed about his shakes he made because he knew he needed to have a healthy diet (or something like that, wasn't it, Ed?) and he made up these concoctions... Maybe if you tried to convince yourself of the need, even though you don't want them, you could start gaining something back. Just a thought.
    66 and still heartbroken...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  5. #20
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,556
    Gardinia

    You will find these sites of interest. There have only been 300 EG cases ever reported....this is a rare one.

    http://apfed.org/drupal/drupal/what_is_eosinophil

    http://www.fabed.co.uk/what-is-it.html

    http://www.fabed.co.uk/treatment.html

    http://en.wikipedia.org/wiki/Eosinop...astroenteritis
    Approximately 80% have symptoms for several years;[6] a high degree of clinical suspicion is often required to establish the diagnosis, as the disease is extremely rare. It doesn't come all of a sudden but takes about 3-4 years to develop depending upon the age of the patient.

    Food allergy is mentioned.....and it seems food selection is critical.....

    Do you have any diet recommendation’s from your Doctors?

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  6. #21
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Very sorry about this.

    Maybe you can apply to the Mayo Clinic. Since it is rare, they may have the most experience with it in the country.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #22
    Join Date
    May 2012
    Location
    El Centro, CA & Baja California, Mexico
    Posts
    193

    It is not rare

    Problem is that it has been known for many decades and Prednisone has been the solution. Usually people gets diagnosed with one of several names IBS, gastritist, ulcers etc and into Celiac or Chronn's disease. No one knows due to lack of research or lack of ability to pinpoint what is the cause - allergies, stress, anxiety all very vague causes that are real but not proven.

    They have not even found a replacement for Prednisone that has been in the market for decades and causes many many side effects hopefully some are under control and many others are not.

    Oh well, I am just trying to feel better and be able to eat. At least the other problems are under control. Let's hope that nothing new gets added. thanks, gardenia
    Gardenia
    Baja California, Mexico & El Centro, Ca
    pre-surgery 75° and 89° - post ?
    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

  8. #23
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Gardenia,
    Hopefully this will be an end to the problem. The meds do help calm a wide range of things down. Use this time to try to eat more and get stronger--so if there is another issue,you will be stronger. It is hard to eat when things aren't right{taste,smell,texture} Years ago I was in a major car accident and broke a lot of facial bones{among many others}, I have lost my sense of smell and it hasn't came back. The doctor said it is from a brain injury.And I guess if you have to loose one of the senses that" smell" would be the choice. Nothing tastes right or good,but I just eat what I know that I like. Since sweets and salts are tasted by the tongue--they are more attractive to me.So I salt things or use sugar to give food meaning. Maybe something like this will work for you. We do derive pleasure from food--so keep trying. We need to feed our pleasure part of the brain too!

  9. #24
    Join Date
    May 2012
    Location
    El Centro, CA & Baja California, Mexico
    Posts
    193

    Nails and hair

    All the diff types of doctors were wowed but not one had experience nor come close to experiencing something like this. My nails are perfectly healthy not fungi looking nothing gross. 8 of the nails in the fingers just receded and lifted from the bed. Had to cut them down to avoid accidents. For months until now nothing has grown however the white part is migrating back towards the tips leaving the pinkish arch at the cuticle.

    The 2 thumbs with the arch and black lines shooting out are also improving however not smoothly, it has wave.

    My palms that turned gray/brown to spots is going back to normal. Spots going and the color is slowly receding. The tips of the fingers remained pinkish normal.

    My scalp has stop producing oil fields thus overflowing to my face and inside the ears. I no longer have to sleep with a hankerchief to blot oil off.

    Had lots of bouts of being cold in the middle of the spine that would not warm up for hours. Living in the dessert middle of summer when it was over 100 degrees, I was fully dressed for winter and drinking hot tea. Including wool hats. After a couple of hours, then I started desperately undressing because my neck area was super wet with sweat while I was going thru hours of shivering.

    I HOPE THAT THIS ARE ALL ONE TIMER.... CAN'T GO THRU ANOTHER EPISODE AGAIN.

    Husband who is not in tune with medical and never had a pain or complaint in his life - could not emphatize and I think he likely thought I was hypochondriac (I did too) but thank God that I know and trust the signals my body sends.

    Again, thanks my friends wherever you are
    Gardenia
    Baja California, Mexico & El Centro, Ca
    pre-surgery 75° and 89° - post ?
    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

  10. #25
    Join Date
    May 2009
    Posts
    3,745
    Gardenia, what a horrendous sounding nitemare!
    i hope you get better every day, and never experience such an
    awful illness again!
    doesn't make you sound one tiny bit of a hypochondriac to me!

    jess...and Sparky

  11. #26
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Hopefully all of this will get better now. Sometine the steroids work wonders and no one know why. Wishing you the best!

  12. #27
    Join Date
    May 2012
    Location
    El Centro, CA & Baja California, Mexico
    Posts
    193

    doing better

    Eating maybe a little more. Drove out to a restaurant to get some take out and it was a energy zap, fell asleep sitting in a chair waiting. Had a visitor at home and am tired this morning. Energy has never been a problem, hopefully it is the body recovering from the downhill trip it took for the past 3-4 months. A lot to repair and I have to believe it is uphill.

    I used to be very vocal in community stuff and now words coming out of my mouth is too much effort. So, I am just going to sit and listen or sit and rest.

    AT least there is no pain !!!! I get to go shopping nothing fits and it is about time in a couple of months to come out a new person. Jan 2014.
    Gardenia
    Baja California, Mexico & El Centro, Ca
    pre-surgery 75° and 89° - post ?
    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

  13. #28
    Join Date
    May 2009
    Posts
    3,745
    Gardenia..
    there are many illnesses and conditions that can cause severe exhaustion...
    please listen to you body and don't push too hard...

    i experienced severe exhaustion twice...once from Lyme, and
    once from a complete drop in my cortisol level, brought about by too
    much steroids...
    each time nothing but COMPLETE rest, along with required meds, fixed the problem...
    and it couldn't be hurried...it took as long as it took...
    if you are falling asleep when going out to pick up food, and talking
    is too much effort, may i humbly suggest even those activities are too
    strenuous right now...

    i do believe you will start to feel better...but first you will have
    to come to a halt with all activities, even the ones that sound like
    that should be easy...your body has taken a hit...for whatever reason...
    and needs the time to stop and rest, before your energy level can
    return.

    hope you feel better soon....
    jess...and Sparky

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •