Health Update

I should start out with the info about my Neck.  I did have the surgery on Sept. 13 where all the hardware was removed - I have a completely fused 7 vertebrae fusion with an add'l laminectomy done on T2.  I am pain free in the cervical area with the exception of the muscles and nerves.  I am in PT for that.

While having the chest X-rays for the pre-surgery it was discovered that I have scoliosis of the thoracic area.  Which prompt more testing and I have an S-shape throughout my entire thoracic spine.  That surgeon said I am looking at a 12 to 15 vertebrae fusion.  Not at this time since I have other issues to deal with.

They also found on that complete spine X-ray a large portion of my intestines up in my chest area under my diaphragm and liver as well as a severely enlarge heart.  I was told to see my Cardiologist asap.  Which I did.  That info is following.

It has been confirmed I have secondary PH (Pulmonary Hypertension).

I have been through almost every test under the sun, my RHC with medicines will be taking place as soon as I get through my Pulmonary stress test. I will getting the date for this on Monday. Recent Stress Test was stopped after only 4 mins. I could not breathe. Heart rate 155, pb dropped.

I had 2 different PFT's at 2 different locations with the same failed findings. They are trying to get me in for the pulm. stress test asap as I have an extremely large heart at the moment. They need to find out why.

I am seeing a PH Cardiologist so he is on top of this.

Recent tests since July have been echo - approx. PA pressures were 35. Up 15 points since March.

Chest X-ray - Sept. Severe cardiomegaly with twisted aorta. Pulmonary Fibrous and scoliosis.

EKG - abnormal

PFT - failed - Neuromuscular weakness (no asthma) He wants to order a muscle biopsy to see what kind of Neuromuscular condition I'm dealing with. 1st things 1st he said.

Ct-Scans with/wo contrast showed same as chest X-ray.

Blood gases - just normal at 83.

As with everything there is more tests that have to be done - some of my current meds have either been discontinued or changed out of help aide in my healing.  

More Pressing Needs Than Myself

Hello all, I know this blog is mainly about me - but right now there's a greater need.   

A dear friend of mine really could use our prayers - her name is Michelle. you can read about her at one of the blogs I follow "Michelle's Road to Recovery".  It is on the right side of my blog down a few posts from here.

She's not doing well her cancer is back and has spread to her brain, please read her blog and pray, she really could use a miracle.  Thank you.  

More on my update soon.

What's Been Happening Since Mayo

I am not even sure where to start but here goes:

Neurologist:  Appt. is set for Nov. to go over the findings of the Brain MRI and the EEG.  

Neurosurgeon was seen last week - Aug. 28th.  He did not like to looks of my neck.  I have to have another laminectomy done on T2 and possibly T3.  I have to have all hardware removed as I am rejecting it.  The Surgery was scheduled for asap - so the date is Sept. 13th.

 https://www.memorialhealth.com/healthinfo/content.aspx?pageid=P07681

 Orthopedic:  New X-rays were taken of my Thoracic findings were:  Severe DDD changes throughout the thoracic area.  Detroxscoliosis of the thoracic spine centered at the thoracolumbar junction.  This is at the same junction where the tortuous aorta attached itself.  Needs to be watched.  

Pulmonary Specialist  Met with my new Pulmonary Dr. today.  He has confirmed Pulmonary Fibrosis, Bronchiectasis wall thickening of the lungs and blocked bronchial tubes.  I will be needing more tests as time goes on - they are on hold at the moment because of my scheduled neck surgery.  I will stopping the saline chloride treatment that Mayo started me on because it is not clearing my lungs.  My new treatment plan will begin on Sunday when I can pick up my meds. My appts. to start out with are in 1 month intervals then every 6 weeks.  Chest X-rays and CT scans need to be done on a regular basis to watch the progression of the Pulmonary Fibrosis and Bronchiectasis.

Vascular saw my vascular surgeon the first week I came home - but we put the laser ablation plan on hold for the time because there are other health issues that require more immediate attention.  I am to go back when I am in better shape (health wise).

Endoscopy and colonoscopy  were both done within the first 2 weeks of getting back from Mayo - no bleeds were found.  My Dr. is thinking I do not absorb my iron.  I was sent to my Hematologist for further testing on the extremely low Ferritin Levels.

Hematologist tests were repeated, my Ferritin levels were still low so I begun my Iron IV treatments.  I go back every 5 weeks for blood work and on the 6th week find out where I am at.  Good news I have be given the clearance to stop the blood thinners until they can find the source of my extremely high d-dimer test.  I supposedly do not have a clotting problem yet my d-dimer is high.  Being watched and tested on a regular basis.

I believe that is it for now - still more tests to be done - but not until after my neck surgery and I have had at least 6 weeks of healing behind me.  Thanks for reading. 

Mayo's Findings

Here is somewhat of Mayo's Findings according to the Internal Medicine Dr. who was my go to Dr.  to get everything done.

The clinics I went to were: Neurology, Cardiology, Cough clinic, Vascular, Autonomic, Blood clinic, Urology, I had Xrays, Ct scan, blood work on 4 different days and a host of different tests.  Because I was on blood thinners no procedures were done there that required my being off them.  If I needed a particular procedure it would be scheduled when I got home with my Hematologist directing things.

I will start with my head my work my way down.

• MRI and EEG shows excessive fast activity in the posterior aspect of right globuss pallidus.  (Needs following with Neurologist).
• Xrays of the spine: facet disease at the C2-C3 area as well T2,3,4,5.  Bulging disks and DDD at the T4, T5 area of the thoracic.  T2 prominent spinous process is eroding needs intervention. Loosening and/or protruding hardware found throughout the fusion. Cervical Spondylois. (Surgery is indicated at this time, see Neurosurgeon at earliest appt.). 
• Chest Xrays:  Mildly tortuous aorta.  Thoracolumbar curve.  Colon or small intestines are interposition between the right hemidiaphragm and liver.  
• Lung Xray and Ct Scan:  Scattered linear opacities in both lung bases with architectural distortion and bronchiectasis related to pulmonary fibrosis.  Also found to have bronchial wall thickening. EMG confirms Neuromuscular weakness.  Bilateral timy calcified granulomas.  2 - 2mm nodules seen in left lower lobe definitely not calcified. (to be watched.)  (Further tests need to be done, can be made with specialist who works with Pulmonary Fibrosis). 
•  Cough Clinic:  Findings:  Chronic cough due to idiopathic fluid retention, Bronchiectasis, Pulmonary Fibrosis and idiopathic Neuromuscular weakness, (follow - up with Pulmonary Dr in 6 weeks, can be done at home or here).
•  Hematologist: Findings:  Von Willebrand disease, iron deficiency anemia, Protein S, Protein C deficiencies.  (Follow-up with Hematologist at home).(Further recommendations is to have an EMG and Colonoscopy to find the source of bleed - iron defienct anemia has been present since 2007, can be done here or at home).
• Vascular: Findings:  Bilateral lower extremity swelling.  More notable on the right than left.  RSDS on the right foot.  Has clubbing of fingers and toes.  Lower extremities cool to the touch.  Has some venulectatic and telangietatic varicosities in both calves.  Ultrasound confirms 3 bilateral small saphenous vein insufficiency.  Also confirmed including RSD, autonomic dysfunction and  lymphatic dysfunction caused by knee operations.  (She is to see her Vascular Surgeon at home to have what I would recommend a procedure of small saphenous vein laser ablation). 
• Neurology: Findings: Autonomic dysfunction of intestines, bladder and right leg.  Periodic Limb Movement Disorder, Urological issues. (Continue treatments with home Neurologist).                         

 I will re-read the notes from the Dr to make sure nothing is missing.  Next blog in a couple of days will be what I have been doing since Mayo.

Mayo's Appointments

I realize it has been over a month since I have been back but I have had  appointments left and right since I have been back.  

I ended up being at Mayo for 2 1/2 weeks even had time to go to their emergency dept.  

For the first week I had 7 to 8 appts. a day.   One after another totally exhausting.   They sent me to clinics I never heard of and do tests that I thought I'd never get through.  They had me going from one dept. to another giving me a total work-up from head to toe leaving no stone unturned. 

The second week was more appts.  I only 4 and 5 a day, not as exhausting.  Weather was hot and humid, there wasn't a day that the heat index wasn't below 100 degrees.  Was suppose to rain like 4 times but never did.  I stayed at a hotel 3 blocks away but to get home I had to walk via the subway to avoid the heat what took 6 mins in the morning took at least 1/2 hr back.  It was like a maze getting home.  

Anyway I got there via my friend Marilyn and her husband Tom, due to my crazy appt. schedule they left on Friday, we arrived on Wednesday, June 27 they planned to come get me when I was done.   

The last Wednesday I was there I think it was the 11th of July Marilyn planned on coming up on Sat. the 14th to avoid the traffic to get me.   But on Thursday while I was at the Mayo ER her son phoned me to tell me Marilyn was at the ER at home.  Something with her heart and that she couldn't come get me.  

My ER was minor - swollen, red, itchy lips and surrounding area.  Turns out I am allergic to beeswax.  I didn't know that until I switched chap sticks.  Marilyn was admitted and they did a heart carth.  but didn't find anything wrong so they gave her a 30 day heart monitor and sent her on her way Friday evening.  I did get home Friday night as well via another transportation company.

I hope to never go to Mayo again that was extremely taxing on my body. 

The Day Has Finally Arrived

It is so hard to believe it was 3 months ago when I started to make plans to go to Mayo Clinic in Rochester, MN.  That day has finally arrived.

Tomorrow we are leaving at about 10am and hope to arrive at our hotel about 5pm. 

My first appt. is scheduled for Thursday at 7:30am.  I have no clue what they will be doing or how this all will play out.  We are all praying to get answers to my Medical Mystery as well as hopefully addressing my new neck problems. 

I will up date as soon as I can.  Deb.

So Much Going On

I have shared many times about my Cervical Fusion and all the hardware in there - recently someone questioned me saying that is impossible to have that all done so I thought I'd share with you what I look like from the inside. It is not gross just a lot of titanium.

If you enlarge your screen the picture gets bigger and you can see it better. The back screws and rods were the C3-T1 fusion - the front plate and screws were from the discectomy on my C5-C6 and C6-C7 with cadaver bones.  Did I mention I am held together by rods, plates and screws?

MAYO CLINIC INFO - My date is scheduled for Thursday, June 28th - length of stay anywhere between 4 to 7 days not including weekends or holidays. With the possibility of being admitted. That would be okay for me it would save me on food cost, room costs etc....

I called the transportation to set this up they said no problem.

I booked a discounted room at the Inn for 10 days to be on the safe side.

Then my friend who does my local rides for me informed me that her and her husband will be driving me up there leaving me then come back and get me. No problem I told her I would pay for their 1 night stay so they could go back the next day right? Wrong. She had plans of her own. 

Marilyn called me to informed me she is paying for her and Tom's stay for 2 nights and I owe nothing for them.  She is calling it her vacation.   Since she is my emergency contact person and she goes to all my medical appts. she will also stay with me the first day to see if we learn nothing new.

Once she has info as to what they will be doing with me then she and Tom will go home and come back to get me. I was shocked she would do that - I didn't even ask her - she said she just couldn't see me go by myself and wanted to be there for me. Now that is a true friend.

The ride alone is about 5 hrs one way.  I am awed by her generosity and friendship.

PASSING OUT SPELLS AGAIN - It had been months since I had one, now I am getting them once a month.  Well the one I had in April prompt my PCP to do a 48 hr heart monitor.  Of course you get it, have them put it on and wear it for 48 hrs and nothing happened.  Isn't that how it goes.

Well the report came in with some strange readings of very slow beats at 50 to the highest of 159.   No big deal.  But the heart Doctor wanted me to come in anyway.

My heart Dr.  spent an hour with us going over everything. He said that I do not have CHF just that the doctors didn't know what to blame my fluid retention on, so they said CHF.

My kidneys and bladder are okay as long as I regularly take my water pills. My lungs are weakened by a NeuroMuscular problem.  My entire Central Nervous System is shutting down including my esophagus, small intestines and/or all the involuntary muscles.

He suggested I go to Mayo Clinic to put all the pieces together.  He believes that all I have is getting worse due to the Autonomic Dysfunction for which we do not have a name.  I told him I had an appt. and said to keep it.

ON TO MY NECK PROBLEMS - On top of all that the injection I had for my neck pain did not work, so my Dr ordered a new MRI - and it showed 2 new bulging discs just below the surgery at T5 and T6. My Dr who gave me the injection said at this point there is nothing more they can do it is a result of my spondylitis. I will have to wait until I return from Mayo.

Mayo is looking more promising as the days go by. I can not wait for the 27th to come so I can finally get this Mystery put behind me.

Some REALLY GREAT News

I just received the confirmation I was looking for about Mayo Clinic in MN. My transportation company who drives me around when my friend can not said that they have a contract with WI and neighboring states that if we do not have a ride to Medical Appts. they have to take us. I do not need a prior authorization or anything just a date and I call them up 3 days before and I am guaranteed a ride. I am so excited.

If that wasn't enough good news - I found out both my insurances are excepted - and since I do not have extra money or should I say with my financial situation I qualify to live near by at no cost to me. I also qualify for food vouchers. God is good All the Time. Oh and I do not need a referral I just make the appt. and away I go.

I have requested the Appts., forwarded the pertinent info to them via the Internet now I have to wait 2 business days for the review, then they call me go over some more medical stuff and then I get the Appt. dates.

I my PCP approved this, well she personally called me yesterday and was doing the happy dance on the phone I could almost see it. She said she will do ALL the gathering of all the necessary documents and test results we need and make an Appt. to see me and hand deliver them to me.

Dr K. is the best Dr. I have ever had and goes the second mile to help her patients when she knows she can't. She can't wait for the process to go forward. Truthfully I think she was more ecstatic then I was.         

Thanks again I will keep you posted as I know more. Deb.

Thanks for your Reply!

Three Different Appointment Results

Hello and welcome to my Mystery Medical Story.

It has been a battle for a long time and right now I am not any closer to getting answers than I was in 2007 when this all began.

The first appt. was on April 12th with the Pulmonary Doctor who specializes in PH. He took a look at me, my test results, my blood pressure and said "well I see your blood pressure is starting to climb but it is not bad."

His visit was somewhat frustrating because he has no clue what to do with me and said so, he told me to just go home and live with what I have and not get frustrated because that will not help. I am to keep taking my water pills because at least that is working and keeping me from more serious problems. I said that is fine but what is it I have that I need to just live with?

He begins to name them one after another and then said I would benefit from seeing another doctor who and what kind shocked me and my friend. He looked at my fingers and nails and wanted to know if I noticed a difference in them, which I replied yes. He wants me to go see a dermatologist for "clubbed fingers and nails". The thing is, clubbed fingers are most likely caused by a heart problem, a lung problem and or low oxygen in the blood. All of which I have. And the Pulmonary Doctor who deals with the lungs wants me to see a Dermatologist. Now isn't that a good one.

~ ~ ~ ~ ~ ~
The Endo appt. on the 16th went horribly wrong. This Dr believing he knows it all, cursed me out and told me when, where and how to take my Thyroid medicine. I have been taking thyroid meds since I was 15 yrs old. I do not believe they changed the way one is to take them. Since I refused and told him why, I couldn't take the thyroid medicine his way, he told me in a rage he has been treating people for 25 yrs and he knows better than the pharmacy and my PCP. And that I do not need to be tested again for a year. Which no one is agreeing too because I do not have a thyroid it flip flops from hyper to hypo on a regular basis, that is why I was sent to see this yahoo in the first place. I will not be going back to him in the near future or ever.

~ ~ ~ ~ ~ ~

I saw my foot doctor today for my edema and Tenosynovitis of flexor hallucis longus. His recommendation is to rest and ice my ankle and stay off it while I am on Prednisone for a week. He does not want me to even go to the Pulm. Rehab as exercise can cause more damage. He thinks that is what is still causing the Tendon flare ups in my knees "the exercise". The Ortho Dr never told me to rest and ice and certainly never said to stop exercising.

I will go back to the foot doctor on the 30th if I am not better or the pain has not gone away I will need to be put in a air boot again for 6 weeks. He thinks the flare ups are due to an arch problem in that foot because of the Tarsal Tunnel Surgeries in 1993. My foot is not stable. He wants to talk about getting arch supports but my insurance doesn't cover it and I can not afford it. I am not worried about this for I know the Lord will provide as He Has always done before.

Ortho Appointment

My ortho appointment didn't go as planned. My Dr. said he doesn't work with feet or ankles I need to see another Dr.

He did address my right knee pain and found out that the Patellar Tendon was severely inflamed. Then he looked at my left knee and found that to be severely inflamed but with a bursa within the area below the knee along the Patella Tendon.

Course of action was a Cortisone injection in both knees. I am to watch and wait to see if the Tendons calm down. I did ask him why are all my Tendons going haywire and he had no response. He said it wasn't his job to figure that out but to calm the pain down. Another mystery I guess.

I went to Pulmonary Rehab today but had to cautiously use the NuStep and not bend my knees too far. Walking today has been some what painful. I see my Podiatrist on the 18th to address my foot have no clue what is in store.

My Medical Mystery

Awhile ago I said I'd post as soon as I know something so here goes.

My current medical diagnosis (confirmed):

CHF - Congestive Heart Failure, unspecified

LVDD- Left Ventricle Diastolic Dysfunction

Essential hypertension, benign

Tricuspid Regurgitation - mild

Edema - severe

Autonomic dysfunction

Neurogenic Bladder -NOS

Lupus anticoagulant w/hemorrhagic disorder

Nonalcoholic steatohepatitis - NASH

Iron deficient Anemia

Vit D deficiency

Abnormal EKG's - prominent R(V1) and left axis - nonspecific - as seen in patients with pulmonary disease

-nonspecific T-abnormality.

Dry cough on a daily basis, still 8/10 lb weight gain daily - makes Shortness Of Breath worse until I take the water pills.

Been though the wringer again with blood tests and other tests - Right leg will not stop swelling even with water pills will be having MRI on ankle and knee next week.

No improvement at all in Pulmonary Rehab They are sending me to my new PH Dr on April 12th, 3 Drs have told me another RHC needs to be ordered. My blood pressure has been climbing from my normal of 90/50 to now 118/78 to 120/85.

~~~~~~~~~~~~~~~~~~

Just received my MRI results from my foot - I have what they called a raging tendonitis have to take Celebrex for only 14 days to see if it works if not then go to see the Ortho doc.

Due to the fact that my thyroid is hyper again I will be seeing my Endocrine Dr on the 16th of April. My Dr. is concerned because when someone doesn't have a thyroid and on synthyroid my levels should not be changing.

3rd Neck Surgery

I am a little behind. On January 9th I did have my 3rd surgery. The Dr. removed some hardware and cut down the 7th vertebrae. I was sent home the next day on pain meds.

Went back 2 weeks later to have 30 staples removed. I sent back to physical therapy were they do deep muscle massage.

Not much has changed on my neck - I still get pain by the end of the day so I need to put on my brace to take the pressure off of the muscles. I will be getting a home traction device to try to straighten up my neck it is protruding too far forward which is causing my pain. Sorry it has taken me so long to post I have been coming and going to other Drs it has been a whirl wind around here.

What's Been Happening

On Dec. 9th I saw my Neurosurgeon because something didn't feel or look right in the back of my neck. The last neck of Nov. I bent down to turn on my heater (baseboard type) and I felt a pop and a pull in the neck. Since then I get a lot of crunching going on. The Dr. thought it could be a hardware problem, so he sent me for more Xrays.

I went back on Dec. 23rd only to find out I need more surgery, it is scheduled for Jan. 9th. Not sure at this point what he will be doing as my 7th vertebrae decided to come loose.

Been having trouble with my diuretics many cramps in my feet, legs and hands, so my PCP ran extra blood work along with the regular stuff for pre-op. I thought maybe my water pills weren't working and I needed it switched but it was that my potassium is still low again. Now I get to take 3 horse pills instead of 2. Thank God I can take them with hot water to help dissolve them enough to swallow them.

Both Pulmonary Rehab and Physical Therapy are on hold until the Dr. thinks I can go back. I am still trying to get in 2,000 steps a day. Some day I am close to my goal other days I clock in at 3,000. My goal Pulm. Rehab and I have is to be able to get in 5,000 steps a day and still breathe.

That is it for now, have a Blessed day. Deb