Good luck, Gramps

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Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 5/21/2008 8:15 PM (GMT -7)   
As u get ready to go to the Cleveland Clinic. I will lift u up in prayer for good treatment and care and that u find the relief that u deserve. Blessings and Godspeed!

If pain could have cured us
we should long ago have been saved.


Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 5/22/2008 3:44 AM (GMT -7)   
Yes Gramps, you will be in my thoughts as you go to Cleveland for your appointment.
Hope you walk out feeling listened to and validated.

Many Hugs and Prayers

Frya
  In suffering, we are given the key to a door which most rarely 
      get to open.  Behind it lies the ultimate gift which is only visible
                             in our darkest hour.
                                True strength.


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 5/22/2008 3:54 AM (GMT -7)   
Best of Luck, Gramps. Hope you get the treatment and care you deserve and that they figure out what's causing your blood flow issues.

Ry

mala407
Regular Member


Date Joined Mar 2007
Total Posts : 103
   Posted 5/22/2008 7:41 AM (GMT -7)   
Best of luck gramps....my thoughts will be with you! I am originally from Cleveland...they will treat you right :) Please keep us posted when you can, hugs!!!

Mala
26 years old, living in Chicago, Chronic abdominal wall pain due to nerve entrapment. I have IBS-D and neuropathy. Gall bladder removed, 2 failed exploratory nerve surgery, pancreatitis, several hospitalizations for IBS flareups. Medications: Welchol, Align, Lunesta, Oxycodone, Thiamine, Zyrtec-D
 
I am a dance teacher and choreographer who loves children and cats! I am to be married on June 27, 2009 to my wonderful fiance Jon!!


Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 5/22/2008 3:19 PM (GMT -7)   
So glad you are there safe and sound. Hope you are able to knock down the pain and relax. I always like staying in Hotels, no added stress of having to clean up!
Take it easy and good luck for tommorow.
Prayers and thoughts are with you!

Hugs

Freya
  In suffering, we are given the key to a door which most rarely 
      get to open.  Behind it lies the ultimate gift which is only visible
                             in our darkest hour.
                                True strength.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/22/2008 5:21 PM (GMT -7)   
Gramps,
So glad you made it safe and sound. I'm guessing you're at the hotel attached to the clinic. You're only a couple of hours away - right along the shores of Lake Erie. Be glad it's not winter!!

I hope you get wonderful care, and some needed answers.

PaLady

Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 5/22/2008 6:48 PM (GMT -7)   
G, so glad that u made it safely! Best of luck tomm, will be anxious to hear how u make out :-) Sleep well and God bless!

If pain could have cured us
we should long ago have been saved.


painKILLER
Regular Member


Date Joined Aug 2007
Total Posts : 69
   Posted 5/22/2008 8:07 PM (GMT -7)   
Gramps, you've always been helpful and kind to me, to I hope that this trip nets you what you are looking for. Best of Luck! PainKIller

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 5/23/2008 7:52 AM (GMT -7)   
Gramps
So sorry I am late in giving you a good send off but you know my heart thoughts and prayers are with you always..PG is worse then ever and I cannot get an IV tried 14 times yesterday cannot have picc line due to th worry of sores starting in the insides on organs ....

Praying for you my friend
Huggles and luv

LYN
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
                               FIGHT the FIGHT with all YOU HAVE
 
   
 
                   
 


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 5/23/2008 3:19 PM (GMT -7)   
Gramps,
I'm sorry that I hadn't logged in to read about your visit to the Cleveland Clinic, but hope that you find the answers you are seeking and the help that you need there.
I've read good things about them, so I hope that your visit with them provides the answers you seek.
Take good care and I will watch for your posts.
Bless you,
Sandi M
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/23/2008 3:44 PM (GMT -7)   
Gramps,
Too bad that the Cleveland Clinic (it's actually clinics, although there's one many center) is located in a pretty "boring" area. I wonder if they have vans or something that would take patients such as yourself "visiting" from out of town for a ride down to the Lake. You can at least see places like the Rock 'n Roll Hall of Fame, although to be honest, Cleveland isn't what I consider the most picturesque of cities. I spent my first year of college there - in the dinosaur age!

I hope you're getting great doctors, and eventually answers and help.

PaLady

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/23/2008 4:04 PM (GMT -7)   
Gramps,
I wish I had something I could say other we are all here to listen and support you with this. Your frustration and disappointment must be overwhelming, but it sounds like they're still doing tests and so the process isn't over? So I'm going to be hopeful that you at least get some answers, or direction, before you leave.

Is there any way they can get the MRI via computer? I know mine are all on CD's now. Maybe if them having the actual MRI would make a difference it could be overnighted to them?

Hugs,

PaLady

Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 5/23/2008 4:32 PM (GMT -7)   
Oh well, shoot! I am so disappointed for you Gramps! I really had high hopes that u would get to the bottom of what is causing the prob with blood flow to your brain. Getting the actual MRI via pc might be something to look into, altho I think  that they dropped the ball on not having it...geesh! Will keep u in prayer.

If pain could have cured us
we should long ago have been saved.


Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 5/24/2008 2:38 AM (GMT -7)   
Gramps, I'm sorry this trip has turned out to be another hospital disapointment. I feel your frustration.
Wish they had the answeres or at the very least a bit more of a lead on what path to follow.
Perhaos one of these other tests will give some bit of indication.

Still in my thoughts and prayers
Please dont wait too long to let us know how you are making out with the rest of it.

Many Hugs

Freya
  In suffering, we are given the key to a door which most rarely 
      get to open.  Behind it lies the ultimate gift which is only visible
                             in our darkest hour.
                                True strength.


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 5/24/2008 11:43 AM (GMT -7)   
Gramps,
I'm truly sorry to read what frustrations you are having to deal with. Is it at all possible for you to call the MRI location and have them overnight those films to you ? If I were you, I would certainly be trying and then I would hand them to him , explaining that you are really concerned about them, otherwise you would not have flown all that distance to see them.
When a patient takes all of that time and expense on to see specialists, they should take the time and their expertise and use it to truly try to help the patient.
I had a recent MRI of my brain to rule out MS, and while it did that, it showed two lesions in my brain of "unknown significance".....when I saw the neuro, he didn't even mention them.
Best wishes to you,
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 5/24/2008 6:37 PM (GMT -7)   
Again, I am just so very sorry that u went all of that way with no satisfaction. Please don't give up hope. What if u refuse to leave til someone pays attention and does what he/she is supposed to do? I guess then they would label u a difficult patient? You would surely think that the flippin Cleveland Clinic would give u some answers. Keep up hope, Buddy, and keep praying.

If pain could have cured us
we should long ago have been saved.


crps
Regular Member


Date Joined Oct 2006
Total Posts : 174
   Posted 5/24/2008 11:46 PM (GMT -7)   
Hello Gramps,
 
Wish I could be there for you. I was wondering if there is someone you could talk to in the hospital, you know the lady who walks around to all the beds and asks the patients if everything is going allright?
 
Probably a lame suggestion, but I know how it is to have Hospital Rage. 
Gramps do you have anyone going to bat for you over there?
 
                     Should there be someone else that will take your authorization?
            
                               Keep battling over there Gramps
                                            
                                            mike

Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 5/25/2008 12:12 AM (GMT -7)   
Yea, like an Ombudsmin(sp)? They used to come around the nursing home where I worked, they are quite pro-active for pts.

If pain could have cured us
we should long ago have been saved.


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 5/25/2008 1:10 AM (GMT -7)   
Hey, don't you all just wish we could ALL hop on a plane and show up w/Gramps to his next appointment. Maybe with dozens of us standing there demanding that they help him, something would get done! yeah

Seriously, though, Gramps. I know we can't be there in person, but you have to know that many, many prayers are being said on your behalf. I hope this new week brings you unexpectedly wonderful treatment and care from the doctors at the clinic. Maybe finding a patient care rep would help? Not sure if they have those everywhere, but at the hospital here they're available. Or maybe a nursing supervisor? Sometimes they will advocate for you.

We're thinking of you!
Ry

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/25/2008 9:11 AM (GMT -7)   
Good point, Ry and others. Gramps, I know you're not an inpatient, but there should be someway for you to call the social work dept. Try to find someone to help you - who can act as an intermediary. I know it's a holiday weekend, which may make it a bit more problematic, but if you can check around today and tomorrow for some phone numbers at the clinic (heck, just go over to the help desk), by Tues. AM you may have some direction about who to contact so you have someone intervening - who can communicate to the docs just what you've been through and why you traveled all that way!! I also think there's some spiritual advisors over there and while that might not be what you're looking for, again, they might be able to help intervene with the medical staff.

Our thoughts are with you.

PaLady

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 5/26/2008 9:32 AM (GMT -7)   
AWE Gramps, so sorry they did that to you. You have my thoughts and prayers with you gramps and I hope you can find someone to help you.
Soft HUGz
************************
* Asthma
* Allergies
* Osteoarthritis
* Spinal Stenosis
* Mild DDD
* Enlarged
Pituitary Gland
* Fibromyalgia
*************************

Patient: "I always see spots with my eyes"
Doctor: "Didn't the new glasses help?"
Patient "Yes, now I see the spots clearer"


quahog
Veteran Member


Date Joined Sep 2005
Total Posts : 535
   Posted 5/26/2008 8:11 PM (GMT -7)   
I'm sorry to hear that you're going through all this.

I wish I could help in some way and provide answers

I myself am going through similar issues with PN and other pain issues. I am now starting to think that I may indeed have Lyme although a few years back I under went a glucose tolerance test and I didn't do very well with it. (Most people actually fail this test) So one of my NP that I was seeing said I had DM.

Of course that was quickly ruled out but my other doctors but the symptoms that lead to the GTT disappeared after I lost weight and started to exercise. Now however these same symptoms are back and it would not surprise me if I was after Diabetic. Now if I only could convince my PCP of this.

At any rate I don't blame you for being off of big hospitals. I made my mind up after my Lahey Clinc fiasco that I was done with hospitals and will not see anymore specialists other than the ones I have been seeing currently.


Whatever you decide to do I wish you well and hopefully you can find someone out there that's capable of finding what's wrong.

Post Edited (quahog) : 5/26/2008 9:17:34 PM (GMT-6)


Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 5/27/2008 3:04 PM (GMT -7)   
Bless your heart, buddy, u r surely being put thru the wringer! I don't know what to say except that I keep u in prayer and thought. Hang tough!


If pain could have cured us
we should long ago have been saved.


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 5/28/2008 6:00 AM (GMT -7)   
Gramps
My love thoughts and prayers are always with you
I am so sorry my friend for all this you are being put thru
I wish I could help you more........

Love and huggs

LYN
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
                               FIGHT the FIGHT with all YOU HAVE
 
   
 
                   
 


Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 5/28/2008 8:37 PM (GMT -7)   
G, you'll have to let me know how the EMG's go and what they entail. I'm due for one next week on the 4th. Really anxious to find out what's causing my leg probs. On an uplifting note: my pain level is almost nil, even with Baby Girl here today and then doing alot of weeding. Hooray for Fentanyl patches!!! LOL
Some I knew that u were a stump-jumper, Gramps...u have that twang to ya...yeeee hawww!! LOL WV here.

If pain could have cured us
we should long ago have been saved.

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