HealingWell
Search Close Search
☰

~You were right. I should have listened

Support Forums
>
Chronic Pain
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/12/2010 11:17 PM (GMT 0)
 

   Dear Family,

 

     I got the 14 page report. Some of the things that stand out...

 

      Jag and Stray you were right. I have osteoperosis. You both brought it up before christmas, I don't know why I didnt listen.

 

      Chutz, White Beard, Screaming and everyone else that told me to get my rear into the doctor for new x rays last summer... I am sorry I didnt listen. You are right. I have progressed from just "Mild Levoscoliosis" ~~> Severe clinical presentation of Dextroscoliosis & Levoscoliosis. Marked deformity.

 

Moderate degenerative changes of the thoratic spine with tilt to the upper aspect of the thoratic spine. Secondary to the moderate levoscoliosis with apex at the mid lumbar level.

Moderate degenerative changes in the lumbar spine with moderate levoscoliosis. Disc space narrowing, and facet arthropy. There is moderate levoscoliosis.

Note : There may be sclerosis present in the sacro-iliac joints.

 

     I cant really understand the blood work, its just a long list of numbers and talks about spondyloarthropathies and HLA alot..so way over my head.

 

       I get to meet a new spine specialist who has other specialities. Apparently he is already up to date with everything. He will take over my care from here on. smhair  I guess I will meet him just before I leave on my trip or when I get back.

 

.....No wonder it hurts to walk.... sheesh.

 

*warm huggs*

    dani

    EDIT: I guess I have S curve now will find out more in a few weeks 

Posted 4/12/2010 11:26 PM (GMT 0)
Dani, this must be what your were referring to the other day in your post. It never stops for you, does it! Of course you always know your in our prayers. I will stop short there, as I don't have any knowledge about what all this means for you. I'm sure, however one of the veteran members will lend a hand in understanding it though. You have a ton of friends here, and of course we will be following your progress closely. Hang in there!

SE
Posted 4/12/2010 11:49 PM (GMT 0)
We're here for you. Will you find out the next treatment steps when you see the new doc?

Huggs back,

Flower
Posted 4/13/2010 4:36 AM (GMT 0)
Dear Dani

 

I'm sorry to hear that so much is going on with you.  My prayers are with you.  Bless your heart.  I'm sure the new doc with set you up with a treatment plan that will help you to feel better.  I wish you didn't have to go thru so much.

 

hugs

Loretta

Posted 4/13/2010 4:41 AM (GMT 0)

(((((((((((((((DANI)))))))))))))))

XXOO
Patti

Posted 4/13/2010 6:30 AM (GMT 0)
Oh Dani!! "No wonder".....you poor thing!

That 14-page report on your medical issues sounds so overwhelming! It amazes me that you "sound" so calm and collected in your post about it...and you still have your sense of humor too! What a strong person you are!!

I really don't know much about all those medical terms that you mentioned (wow!), except that spondyloarthropathies are a particular set of chronic joint diseases that include stuff like psoriatic arthritis and ankylosing spondylitis. I only know about psoriatic arthritis because my husband has severe psoriasis and we've been wondering if he's developing PA, and once upon a time the doctors thought my son-in-law had AS but apparently not.

AS is associated with a particular gene marker: HLA B27, and maybe some of the others are associated with other markers (?).....so that might be what that part of the paperwork is about, they were looking at your DNA.

No doubt there are veteran members who know a lot more about these things......

Of course, I'm not fooled at all by your protestations of ignorance ("it's all over my head")! I have a feeling that you're such a smart cookie you probably know all of these things inside and out and don't need any lame explanations from me! :-)

I am so glad that you'll be seeing a new spine doctor who has multiple specialties.....I'll be praying that he will be able to come up the right treatment plan (and also praying for pain relief for you too!).

Take care of yourself as you prepare for your trip!!
(((((((hugs))))))))
JoAnn
Posted 4/13/2010 10:31 AM (GMT 0)
Dearest Dani , It seems life is determined to challenge you , but I'm just as determined to support you any way I can , so please don't miss an opportunity to check on yourself and care for yourself .Please eat healthy and explore every possible avenue that can possibly assist in your treatment and your day to day living .I'm so concerned for you my friend , a trip now seems a lot , but I know your determined so please , please , please , watch yourself and be careful .Your a very special spirit in this world and in many lives , the bio you took the time to write me I think of all the time , it affected me deeply that you took the time to write , I know you have difficulty with your hands so it was and is deeply appreciated .I'll be thinking of you every day and praying you are doing well .Ask your doctor to go through the blood work step by step , I hope you find great news there .Heres hoping you have a safe , easy and fullfilling trip .luv ya much Mikel
Posted 4/13/2010 10:50 AM (GMT 0)
Oh my Dani, poor you, you are right, it just never ends for you. But you are a strong woman, you will make it, and remember one day a time!!!!!!! Do all these reports mean you need a spinal fusion, top to bottom??

Tell me about this trip??

Hugs my sweets!!
Posted 4/13/2010 3:47 PM (GMT 0)

Thank you all very much for your replies. Your support means the world to me!

 

 

   Dear Michael,

 

      I began reading the novel this morning in detail. It is very odd reading about yourself from someone elses point of view. The first two pages are about me, physically and mentally. Descriptions like "Well groomed." "Articulate" "Active despite marked deformity." "Adjusted" "Ambidexterious"

... I never really thought doctors cared how you look or how you adjusted to new physical limitations.

 

    I am having a hard time understanding that at the dropp of a dime I will no longer be seeing my spine specialist. We are friends... I was very comfortable with him. I hope this new spine specialist is nice.

 

   Dear Flower,

 

 

      Yes. Apparently if I cannot wait til my new appointment, my primary care can go into more detail. But, I don't feel like I should waste an extra co-pay. I think I shall wait till I meet the new spine doctor. Then if I still have questions, I will go to my primary and tlak to him about it all.

 

   Dear Loretta,

 

     Thank you so much for your kind words of encouragment. It means a great deal to me.

 

   Dear Patti,

 

      *warm huggs*

 

   Dear JoAnne,

 

      Thank you for your support. I cannot express enough how much it means to me! Im no sure how calm I sounded. Was shocked and dismayed more than anything. I guess I will know more next month. I know I should be greatful for another new doctor.... But I liked my spine specialist. I don’t know why I need a new one...

 

   Dear Mike,

 

      Last night I felt very overwhelmed. And frankly..betrayed. A lot of this collective report talks about diagnosises that I was given last fall/winter 09. I cannot help but wonder why noone told me. I know I had a lot going on and multiple surgeries..But im not fragile you know. They could have said something. Instead they all sounded like each one was echoing the others words. "Don't worry about that now, focus on healing." "You are doing great, keep positive." "It's nothing you need to concern yourself with right now. Lets us worry about it." "No cause for alarm, but I will need you to see a few new doctors." ... I must have heard "don’t worry" about a thousand times.

 

     Apparently the appointment I made (thinking back now..no wonder it was so weird when I was trying to set up appointmentlast week!!!) is with one of the two new doctors who will be treating my spine. I am going to miss my old spine specialist.. we were friends. I was very comfortable with him. What if I don’t like the new spine guy? And do I really need some lady just to keep track of my medicines and check my physical health every month? gosh...

 

       Argh. WHy so many new doctors all at once? I still havnt met this ENT fellow or this Neurology doctor. I don't like all these "new" people. It makes me feel nervous and self conscious.

 

      I hope this doctor helps me to be able to walk. I hope he/she is supportive about my trip next month. Now I am wondering if I shouldn’t have told my doctors sooner. Argh, that what I get for procrastinating.

 

 

   Dear Suzanne,

 

      Thank you for your support. It means a great deal to me. *hugg*

     You asked~~> Do all these reports mean you need a spinal fusion, top to bottom??

     Gosh, I wouldn’t think so.. I only read about "mild degenerative" in cervical. The majority of the radiology reports was about thoratic and lumbar and sacral. Those areas took up 6 pages. So, your guess is as good as mine. I guess we will find out soon enough?

 

*warm huggs*

     dani


  

Posted 4/13/2010 5:04 PM (GMT 0)
Dani-
I wasn't here when they were all "telling you so" but am here now and am sending you healing wishes and love.
Catahoula
Posted 4/13/2010 5:23 PM (GMT 0)
 

   Dear Cata,

 

    Oh! Nothing bad. I had just voiced that I was hav ing new and more intense pain. I was being stubborn at the time and didnt want to meet new doctors and most certianly didnt want to open up another bag of worms over the holidays. Nothing bad :-)  Even my husband urged me to mention the problems.. but im a stubborn one rolleyes

 

*hugg*

   dani

Posted 4/13/2010 5:38 PM (GMT 0)
((((((((((((Dani)))))))))))))))))

I'm sorry I misunderstood your situation Dani....I didn't realize that you weren't the one who went looking for a new doctor. It must be very hard to let go of the old familiar physicians, like your former spine specialist, particularly because you were good friends.

Also, I didn't realize that they dumped all of this on you at once and hadn't been keeping you informed all along! This really gets into the "trust" issue that fatherjohn brought up, doesn't it? I mean, we trust our doctors to tell us what's going on with our bodies and what our prognosis is, and so on and so forth and when we find out that they were holding back important information it really damages the level of trust!!

I'm continuing to keep you in my thoughts and prayers.....will be praying for many aspects of your situation, including that you form new (good) relationships with these new doctors and that they are better at keeping you in the loop!!

(((((((((((((hugs))))))))))))))
JoAnn
Posted 4/13/2010 5:54 PM (GMT 0)
Your welcome Dani.  You're such a sweet person.   ((((((((((((((((hugs)))))))))))))

 

Loretta

Posted 4/13/2010 7:43 PM (GMT 0)
Hi Dani,

I am so sorry to hear about all the pain issues you are having..You certainly offer so much care and support to those on this board..so let us help you through this time of new tests and new Drs...I will say some prayers that you hit the jackpot with a wonderful new spine specialist...

If I could make a suggestion to make sure that if they start doing any procedures/surgeries down the road..that this Dr. is a Board Certified Neurosurgeon or BC Orthopedic Surgeon...and always get second/third opinions...

But lets hope that it doesn't have to come to that and they can find treatments that will help lower the pain..Their are many modalities at their disposal so make sure they use them!

Sending you big hugs (( ))
Posted 4/13/2010 9:54 PM (GMT 0)
 Wow I am so sorry you have so many issues. I found this forum that you may be interested  in  reading to add info to your understanding of  what is happening.

 http://www.medhelp.org/forums/Back--Neck/show/63

Posted 4/14/2010 4:33 PM (GMT 0)
 

 

Dear Joann,

 

      I am trying very hard to not be frustraited with my doctors. It is getting rather diffacult. Im exhausted from having to relay time after time, what I have been through. I am tired of shocked nurses and sympathetic new doctors who I wont see again anyway. Its really frustraiting to go through 2 solid months of meeting new people and explaining the same thing over and over. Espically now that I know there is a log in the data base about everything that has happened. All of these "New" doctors are part of the same hospital chain. Why do I have to explain last year all over again, each time?

 

     Now the one doctor I liked, and had finally become comfortable with, will no longer be seeing me. Did I do something wrong? Does he not want to see me?

    

     ..And I can't help but have the same question over and over in my head... WHY didnt anyone tell me? Would I have even been told, about any of it,  if the results of my x rays wernt so startling?

 

      What is next now that the x ray results are in?  What exactly do they do when spinal deformities progress so fast? Am I going to just keep getting shorter and shorter while my spinal deformity gets worse and worse?

 

      ..Im sorry it is alot of rethorical questions. ..gosh. Im so frustraited. *hugg*

 

Dear Loretta,

 

      Gosh you sure are wonderful. We are so blessed that you came to join us! *hugg*

 

Dear Snow,

 

     I am unsure if there is anything I havnt done are already doing for pain. Meds are a plenty. Injection series have reached their maximum in amount and time restrictions. Tens is regular. Modified streatches help ease the numbness. Bio breath keep my heart healthy and my toes warm. I am not allowed to see a chiropractor. ...No sure if there is anything left for me to try?

 

       I don't know if I am going to be sent to any kind of sureon..can you even straighten a progressive curve? So much controvery over adult progression.

 

      thank you for all your support. *hugg*

       ..gosh I am so frustraited.

 

 Dear Faith,

 

     I couldnt make the link work. Thank you so much for your encouragment, it means a great deal to me.

 

 

.... Im gonna go have a soda pop cry

 

*warm huggs*

     dani

Posted 4/14/2010 5:35 PM (GMT 0)
Dear Dani,

Two thoughts occurred to me while reading your last post......

1) You are legally entitled to have copies of your medical records, even the doctors notes and scribbles in your chart. You might want to periodically request photocopies of all records in your chart from each doctor, including notes, etc., just in case they have neglected to tell you something again.

2) I have suffered the same exhaustion at telling new doctors and new nurses the same lengthy saga of my medical issues.....in fact, I first became tired of telling people the same thing over and over again because of my adopted daughter, Emma, who has multiple rare medical problems and is VERY complicated. I decided to type up a medical summary sheet for Emma, including her current diagnoses and symptoms, plus pending diagnoses, doctors names and phone numbers, list of surgeries and hospitalizations and dates, etc. etc. just so I didn't have to remember all that stuff everytime we ended up in the ER with Emma! I have now done the same thing for myself, and it's a good thing, because my memory is now very poor and I simply CAN'T remember all of my medical issues, medications, doctors, etc! You might try typing up such a summary and making copies to hand out whenever you end up with a new doctor or nurse.....it makes life much easier! :-)

Praying that things get better for you very soon.....
((((((((((hugs))))))))))))
JoAnn
✚ New Topic ✚ Reply