~ Little problems adding up to big problems

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Mrs. Dani
Veteran Member

Date Joined Jun 2009
Total Posts : 2787
   Posted 3/10/2011 10:42 AM (GMT -6)   
Bleh, I have been avoiding an update mostly because I do not know what to make of it all..
   First I am going to back up a bit. Kinda highlight. I have progressive spinal deformities that began when I was 27. I am 30 now. There is no cause to be found, yet. AKA Idiopathic. I have been though a battery of testing and re testing.  Even an astronomically expensive series of genetic testing. I have a primary progressive Levoscoliosis that spans T10-SI. Lower thoracic through all of my lumbar. It is moderate classification of cobb angle. As a result my right hip is rotated towards the rear of my body and up into my ribs on the right hand side. My left hip is being crushed. I have a Dextroscoliosis T2-T9 (contained within the thoracic only). It pushes out my shoulder blade, pushes my ribs out on the side and makes my collar bone "seem" uneven. A compensatory "tilt" that forms as a "defense mechanism" to the spine trying to realign itself.
   Okay so.. so the explanation is out of the way. I have to get x-rays done on a regular basis. Keep track of my progression. I am often asked why I am not give MRIs more regularly. First, having an MRI done every few months is far too costly, but second we already know what is being damaged and where just from looking at x rays. The MRIs are saved annually. I had to get my annual MRI done at the beginning of the year. I have to get all sections of my spine done. Each "section" takes 45mins to do. Because of minor mishaps I had to get sections done on different days and it dragged out the process a bit....
    In between that time I had to see my Endocrinologist. A very kind and caring man who is obsessed with my blood due to something call Inherited Hypoparathyroidism (Not not a typo. It is just very rare.). It took all of my teeth (they crumbled out like chalk in 4 months time), my eyes (cataracts - lens implant), tetanic contractions (ones in my throat are difficult)... really the complications are quite scary and difficult at best. So, he takes my blood often and wont let me go very long without seeing him. When I went to visit him, amidst the MRI fiasco, he was very concerned over a series of tests he does routinely. Something about my "kidney function" and "creatine levels". He said he had been watching it carefully and that the numbers were looking worse and worse over the last 7 months. He would speak with my other doctors and get back with me. So, I don't give it another thought. He is always "concerned" over something and he always manages to "fix" whatever it is.
    Then I get back to the last of my images with MRI. I am relieved to have it all done until I get a call... telling me to come into my spine specialist. I go in and she tells me that areas that were not damaged over the summer or damaged now. A long list of "classifications" and explanations of the damage. Narrowing of canal and space, bone on bone, sclerosis (just hardening), increase in curvature degrees (increased rotation on axis as well), protrusions / herniations. Remember for me that my disc are inflaming and "herniating / protruding" are different than most other people. The difference is mine are getting used to their new positions as my deformities progress. Other peoples are going out and in to vertebra and damaging the discs. My discs are not damaged. For me to have 2-3 spots hurting more so than usual is normal. They are just inflaming the area while they become accustomed to their new "positions". The concern is over the increase in curvature degree and that the "new" areas that have damage, have progressed quickly in only 6 months time. We talk about medications, mobility, the damage. Then she says that the radiologist put something odd in his report. He stated that they saw a "mass" that seemed to be in the area of the pancreas or liver. He suggests an CT to further investigate. She says she is going to talk with my other doctors about these findings and get back with me...
     ...so I come here and update all of you. Wondering what will come of these various meetings. I found out a few days later. More blood work for my kidney and creatine levels. Apparently it has to be checked anyway before a CT, so it is two birds with one stone. I get all the labs, drink their deceptive "fruit flavored caster oil" and get the little CT scan done without and with contrast dye. I know my doctor is on vacation for a week, so I am glad to be left the heck alone for a week at least.
    I guess not. He went over my labs from the last 7 months and had teleconference meeting with my other doctors while on vacation. My kidney and creatine levels have worsened. I have to get them retested today. Though how they could have possibly worsened from just 4 weeks ago, I have no clue. Then she goes on to tell me that the cystic mass are on the inside and outside of my left kidney. I really think she misspoke because I was unaware that CT without, and again with, contrast dye could even see that sort of thing. Besides, cysts occur within everyone bodies, all the time. They burst and the body absorbs the fluid. I wont go into the long story about cysts while I was pregnant. I just knew about cysts from previous fiasco.  I don't see what the big deal is. In any case, I have to go see them again to talk about what will happen next and get through a battery of blood work again today. So, now you all know what I know. I am angry for him doing this while he was supposed to be on vacation. I really thought I would be left alone for a week. 
    ..then I get off the phone and see my husband sitting there. Pale. Worried. I was going to tell him, just thought maybe I would do it later (make it sound better). He walked in while I was on the phone.  He is angry. He has long wanted someone too look into my kidneys. I kept having a series of labs and urine tests over the summer. With blood present in urine and white cell count slightly elevated we thought it was just UTIs. I just stopped bugging my doctor because the pain never went away and the antibiotics didn't seem to work. Besides, if it was a big deal I would have been more than just pain in my side. Not like everything else in my side, back, hips and legs hurt anyway... rolleyes   I tried hard to get him to lighten up and it didn't work. Now he wants to take me away on vacation to my favorite getaway spot in a sleepy little town called Jemez Springs for a week. 
    I still need to talk to someone about the veins in my legs going black (they are so ugly!!) it started a few months ago but is getting worse kinda fast. I still!!! Need get my teeth re-fitted and my eyes checked by the surgeon due to worsening problems. They have turned my schedule up side down. I am very flustered. I have really important things I need to tend to and they just cannot keep doing this to me. Also, it would be nice if they could give me a straight answer and tell me why the rush on the tests and what all these "meetings" are about. Don't get me wrong I am glad they are able to get me in for the tests so quickly... but all this fuss is starting to worry me a bit and I wont get to have any explanations until our big meeting in a week.
    So now you know, what I know.
*warm hugg*

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator

Veteran Member

Date Joined Oct 2010
Total Posts : 921
   Posted 3/10/2011 11:01 AM (GMT -6)   

Wow! That's a lot going on! I'm not sure if this would help, but could there be a common underlying factor? For example, there's something called Marfan syndrome which has an array of symptoms, including scoliosis, cataracts, etc.. That may not be it in your case, but perhaps something akin to it? Mass syndrome, is another example with some overlapping symptoms, though that is probably not it either. But in both cases, all the effects are due to a specific gene mutation. Maybe there is a similar root cause in your case.

Anyhow, one bright spot is that it looks like you have some genuinely committed doctors in your corner!

It sounds like the next step is more imaging and/or a biopsy of the mass... remember that they are usually benign.
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, Supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg daily, breakthrough - hydrocodone 10-15mg, or oxycodone 5-7.5mg. .25-.5mg ativan as needed for sleep, Verapamil 240mg SR (for tachycardia).

Veteran Member

Date Joined Feb 2010
Total Posts : 914
   Posted 3/10/2011 12:35 PM (GMT -6)   
  Sweet Dani , Oh the complexities of life , huh ? No one I know could desrve all this less , and I know we talked about this too but I want to support you whenever and wherever I can , you are such a wonderful person and the greatest friend , I love you dearly . I know how busy you keep yourself and how these appts and conferences can be so exhausting , its obvious your doctor cares for you sincerely as we all do . So I pray for you my friend with all my heart , I know you'll do your best cause thats just you , but don't stress too much Dani Girl , you need this time for you , our health is our boss and we must follow the bosses directions . Always know your in my thoughts , Blessings to the family and lots of love , Mikel

Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 3/10/2011 2:31 PM (GMT -6)   
I briefly looked over your post but I'm so tired I'm delirious.  I'll come back later and read.  But thinking of you and praying for you.... --Tina
Main Health Issues: Dysautonomia/POTS; CFS/Fibro; Chronic Pain (back issues, migraines, carpal tunnel, among other things); Chronic Hypertension; Hypothyroidism and Hypoadrenalism; Mixed Sleep Apnea (on BiPap); Depression/Anxiety; Vitamin D Deficiency.

Regular Member

Date Joined Jul 2010
Total Posts : 416
   Posted 3/10/2011 3:06 PM (GMT -6)   
Oh Dani I'm so sorry for everything that you are going through. You are such a special, warm and caring person who has always helped me with everything. It is because of a message I posted last year about the treatment or lack there of from my Rhuematologist that i switched Rhuemies. It is because of that I was finally dx with OA, and RA, and my torn rotator cuff(of 2 years).This is also why i am finally on meds that are stopping the RA progression. I don't bring this up to talk about me, but to commend you. I wouldn't wish what you are going through on anyone but especially you. I wish I could help you like you have me so many times in the past but all I can do is say I am here for you.
I hope the mass turns out to just be a cyst. I hope that whatever is going on with your kidney's is something minor(I pray for that).
I hope you can get away with your husband and get your break that you were looking forward to with the dr. on vacation. Take time for the two of you.It is so nice of him to want to do something and go somewhere that is special to you!! I am sure your husband is worried. I am worried, but I know you will be ok. you are such a strong person, and a fighter..just from what I have learned about you in the last 8 months.
Hang in there and take care of you. idea Heather
Big Hugs, Mama6

DX. with Fibromyalgia, Narcolepsy, Rhuematoid arthritis and Osteoarthritis, Herniated disc 3x in last 7 months
Meds: , Cymbalta, , Hydrocodone 5/350,Hydrocodone 7.5/Nabumetone,thyroid med, vitamin D, Iron,methocarbamol,muscle relaxer,

Mother to 5 wonderfull kids.
Allow me to be strong just another day.

Veteran Member

Date Joined Dec 2007
Total Posts : 1230
   Posted 3/10/2011 5:15 PM (GMT -6)   
My problems are so small in comparison to yours. I'm sorry that you have so much going on, and no truly clear direction to go but more tests. Once they are done, I hope that the doctors have some clear direction for you to go.
I understand the feeling of being overwhelmed and wishing that the tests and doctors would just disappear for a short time to give you time to refocus and get some breathing room.
But, their concern for you, is a good thing. You have a good team on your side in this, so the doctors concern over your condition is a good thing. Even if it doesn't feel that way at the moment. Not many doctors would follow up on their vacation. Heck, some don't follow up even when they aren't on vacation.
I found out about the osteonecrosis from the radiologist who told my husband that I needed to see an orthopedic surgeon. The stupid doctor who ordered the xrays in the first place didn't even bother to read the darn report or call me to tell me the results. To this day, he is not aware of what happened.
Anyway, I just want you to know that there are many of us who do understand the need for a break from things for a bit, and also are grateful that your doctors care so much about you. Just as we do.

Veteran Member

Date Joined Apr 2009
Total Posts : 856
   Posted 3/10/2011 5:24 PM (GMT -6)   
Dani, Thank you so much for updating us. I am so sorry that you didn't get the break that you needed. Your doctors are really on top of things, and that is great, but I can't imagine the frustration. Can you take that trip with your husband? I Googled it, and it looks beautiful!

I will keep you in my prayers.

Veteran Member

Date Joined Apr 2010
Total Posts : 2261
   Posted 3/10/2011 5:39 PM (GMT -6)   
Oh sweet Dani. My thoughts and prayers are with you my sweet friend. I hope you can get some rest from all these doctors and tests if just for a while. It is great that they're on top of most everything that's going on with you. I'm sorry that you can't seem to take a deep breath. You take care. We all love you Dani.

love and gentle hugs
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees

Regular Member

Date Joined Jan 2011
Total Posts : 230
   Posted 3/11/2011 12:57 AM (GMT -6)   
Dearest Dani,
I have no words... I feel helpless, and wish there was something I could do for you. A magic wand, something! Someone as sweet and wonderful as you certainly does not deserve the hand you were dealt. You are such an incredibly strong and wonderful woman, so compassionate and caring. My own woes feel so insignifigant suddenly.
If ever there is anything I can do for you... do NOT hesitate to request something, anything of me. If it's within my power I will do/give it to you. I wish I could take your pain away.
I will always keep you in my thoughts and prayers.  *hugs*

Retired Mom
Veteran Member

Date Joined Feb 2010
Total Posts : 1753
   Posted 3/11/2011 5:33 AM (GMT -6)   
The things you much endure are unreal even to me. I cannot imagine having to face what is going on with you and still keeping such an upbeat personality. You are always in my prayers. Words are not enough to express how sorry I am that you are faving to deal with this.

All my best.
Failed fusion L5-S1, Pituatary damage, HGH Def, Fibro, Bladder surgery failure, Nissen Failure, GERD, OCPD, GAD, MDD, CTS (Bilateral Surgery completed), CFS, TMJ, Migraines, Vit D, A, Magnesium deficiency, Pre-glaucomic (sp?), HBP, Idiopatic Reactive Hypoglycemia, Edema, too many Drug/Food allergies, sensitivites, and current meds to list.

Veteran Member

Date Joined Oct 2009
Total Posts : 4970
   Posted 3/11/2011 7:36 AM (GMT -6)   
Dearest Dani -
I know what you're talking about, wish I didn't understand the medical stuff, but I do. My problems would fit on your toenail.

Best wishes.

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3686
   Posted 3/11/2011 9:41 AM (GMT -6)   
Hi Dani
Thank-YOU for the update! It sounds like your Doctor is very, very concerned about kidney failure, with everything else going on, you certainly do not need that to happen. It is so important to keep you body in balance, chemically and every other way, and not have anything else add to your problems. You are really fortunate to have such a concerned, and dedicated and  devoted team of Doctors caring for you! I can only imagine how difficult and frustrating all this must be for you, as well as your husband!  I keep you in my prayers, and do wish you all the best Dani.
Stay strong and keep the faith!
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

Mrs. Dani
Veteran Member

Date Joined Jun 2009
Total Posts : 2787
   Posted 3/12/2011 9:57 AM (GMT -6)   
Dear HW Family,
     It made me feel really good to read all of your replies.
     I kept waiting to post an update because, frankly, I just thought it was nothing. My endocrinologist is always concerned over something. He will change something around or change dosage and the problem is usually fixed. When it came to the whole "mass" business.. Well, everyone has "mass" of some sort in their body all the time. I just thought "Well, get the blood tests and images done so they can calm down". When I got called yet again! Then I got a bit worried. Not because of the cysts though. I know they "sound" bad but really everyone has cysts all the time in their body. LIterally, all of us have them. I really do not think it is connected to this kidney business. Of course, I keep getting proven wrong a lot this last 3 weeks....  I guess we will see what is going on in a week.
     The blood work on my kidneys and creatine do have me worried... now. I was not concerned before. Like I said it is normal for my endocrinologist to be concerned over every little thing. Of course, I was a bit shocked when he said they were worsening over 7 months. When it came back even worse, I got worried because it had been only a few weeks between testing. This last time, yet again, even worse! This time there was barley a week between testing periods. Then when the we thought about the problems I had over the summer that were never resolved, with what we know now....   Now I am a bit worried.
     As selfish as it sounds.. I just do not want to have my Nabumetone and steroids yanked out from under me. I NEED the nabumetone for my hips (analgesics, relaxers, tricyclic's, stimulator for the other "pain"). One is being pulled up and the other being crushed. They are becoming "arthritic" (no, not arthritis) because of the deformities of my spine and uneven wear and tear from my trunk. I need my steroids, I need my nabumetone, otherwise it is just too painful to sit and stand. As it is I can barley sit for 20min stretches. I have this dread that they will take it out from under me.
     I did take a bit of time to sit and learn about the kidney function tests and creatine levels. I didn’t make it too far because I became a bit frightened by what I learned. I got a bit shaky. I will try to really sit down and learn more tonight.

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator

Post Edited (Mrs. Dani) : 3/12/2011 9:38:12 AM (GMT-7)

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