CIDP and Severe Obstructive Sleep Apnea Surgery

Hi all I am a 40 year old CIDP Patient that was diagnosed in May of 2015, after about 4 months of deterioration. As I read through many of your stories I realize I was very lucky on the diagnosis part but at the time it sure did not feel like it. I went from being able to do normal daily functions to being unable to walk, feed or bathe myself etc. The doctors would not even share what they thought was wrong so my muscles atrophied as I sat and waited for direction. So through all these struggles I learned that I need to be my own advocate, that no one else will do that for me.

About the same time I started with the CIDP symptoms my OSA "Obstructive Sleep Apnea" began to worsen to where I could not tolerate my CPAP. I was sent for a BIPAP Titration which took the Sleep assistants all night to come up with optimal settings but the recommended settings were so high and I was still having more than half the Apneas that I have without assistance (In case your wondering none of this is good). So with all of this said I was recommended to an ENT. He puts me on a bleed in of O2 to CPAP until we can figure things out. So while waiting for the appointment I continue to fall asleep whenever and wherever my body wanted to. At work, literally training a group of people I doze off while continue to read and everything, fall asleep while working at the computer and continue to click away and type while snoring. What the heck is happening to me? I cant sleep all night in bed, my hubby will wake up and I am sitting at the edge of the bed asleep. I fell off the bed numerous times hurting myself and trying to take out the TV in the process.

The ENT appointment was not very encouraging, my husband and I sat there while doctor tells me he cant even see my tonsils and Uvula because everything is so enlarged back there. He says he has two recommendations, Corrective surgery, removing my tonsils, Uvela and revising (Shaving down) the Palate which may or may not help me improve by 50%. He proceeds to tell me that the best option that he recommends is a tracheotomy, he would put a flap over so it can be closed during the day and it can just be opened at night so the fresh air can just skip everything that is blocked. I just stared at Dr. This cannot be right I am 40 years old, yes I am overweight but come on here a tracheotomy???

Needless to say I opted for the Corrective surgery which was scheduled for Dec 3rd. Dr said patients with Severe OSA spend one night in the ICU because there is a slight chance that their lungs may fill with fluid once the obstructions are removed. So surgery is scheduled for 7:30 AM my parents fly in to be with me Thursday and return home Sunday (Short visit to help me), my hubby also takes off Thursday and Friday so off we go Thursday AM. We do the standard surgery check ins get in to the loose gown that leaves nothing to the imagination. No Cath or anything its supposed to be a quick surgery. They wheel me away from my family and tell them the doctor will come get them and take them to ICU as soon as I am done, My parents wait 3 hours in the waiting room before my panicked mom finally finds a nurse to ask about my status. Apparently I had been in ICU alone for 2 hours and Dr did not get my family.

Well next thing I know it is Saturday morning and I am dreaming that my Chelsea 9 year old boxer is lying in the hospital bed with me, I open my eyes to my dad holding my hand and Josh and my mom off to either side of him. I have a huge intubation tube in my mouth and I can feel that my tongue is swollen and sticking out underneath the tube. I have a feeding tube down my nose and I cant talk. What the hell happened!! I quickly began writing and asking questions in my notebook that I thought I would only need to use due to throat soreness. Apparently on Thursday they had to heavily sedate me because I did not rest. Little did they know the morphine they were giving me was what was making me not rest. So Dr. told my family my lungs were just to weak from the CIDP and he did not see me coming through this without a tracheotomy, No one in all of the surgery discussions mentioned CIDP affecting my lungs what the heck is this now??? My parents and husband were devastated but I started fighting. Even though they were sedating me to keep me at rest I was fighting though it so If I could continue to fight no Trach will be needed.I believe I lost all of Thursday and Friday I dont remember any part of it.

Saturday they removed the Intubation tube first and placed me on O2. Sunday they had to remove the Cath so I had to start ambulating to go to the restroom, Umm they are filling me with IV fluids and making me drink water WTH, So nurse says my goal is to eat Popsicle and drink water. So my poor mom who has been with me in ICU for three nights already Is kept up all night unhooking all the machines and taking me to the bathroom. God forbid I have to cough because there I go off the the bathroom again (Its a woman thing guys!). I was hoping to be released the next day but nope not the case, Doctor said if I behave I can be released from ICU not the hospital :(. So I ambulate more, I am eating regular meals, drinking what I can and they even let me shower on Tuesday! Finally Dr says if I can keep my O2 up while resting I can go home so at 4 PM they let me go home.

Now I have to figure all of this out, I am at home resting trying to heal, the tonsillectomy surgery pain is horrible I feel terrible for little ones that cant tell you how bad they feel. I still struggle with deep breathes so out of no where I gasp for breathe. My Lung doctor sent me home this weekend with a pulse oximeter to measure my Oxygen levels in my blood while I sleep, I did however spend a lot of time awake last night on the first night and I saw that even going to the restroom or sometimes even sitting an resting my Oxygen level drops below standard saturations.

I had no idea that the CIDP would affect my lungs, Ive told me doctor many times that when I put the slightest pressure on my diaphragm I gasp for breathe and he thought that was strange. I just dont know what to do next or if I am headed in the right direction.

I am so sorry to hear about your missing days. I hope you are feeling better.

I had diaphragm weakness and cannot tolerate bpaps or vpaps. After the study I slept 36 hours straight. I think it had to do with my heart. I have autonomic involvement, high bp and heart rate on occasion and bad ekg's confirmed a problem.

I had trouble swallowing and my tonsils felt sloppy when I would breath. A swallowing test confirmed the weakness.

My feet would swell with some medications, including Lyrica.

I went through all my records. I was low in b12, folate and iron. All of which are bad for the heart and nerves, not to mention the oxygen needed to breathe. I had been taking b12 but not the right kind or the right way. I switched to methyfolate and methyl b12 and took them on an empty stomach an hour before I ate. I corrected the iron deficiency.

I took nutrition panels Genova Nutreval and Specracell and made corrections to vitamins, minerals and antioxidants.

I strengthened my lungs by doing breathing exercises, Maya Fiennes yoga on youtube or pinterest and I sang. I started slowly with 1 min increments and felt sick but kept it up.

I am thankfully, very well now and don't worry about breathing or my heart stopping anymore.

If you have any questions, let me know.

This is a list of medications that deplete both folate and B12.

https://umm.edu/health/medical/altmed/supplement-depletion-links/drugs-that-deplete-vitamin-b12-cobalamin

Late 2015, my OSA took a turn for the worse. My jaw drops, defeating purpose of CPAP, and dropping me out of REM. Saw ENT who ordered sleep stupy. Insurance now requires 2 hour documented sleep without CPAP. 5 hours later, they have their fragmented 2 hours during which I don’t recall deep sleep.

Next night is for evaluation. They had me use face mask, the seal of which popped in and out all night. Again, no sleep. They announced I was ready to use a BIPAP, so went from 11# to 19# in/15# out.

My jaw or chin still drops even against resistance. Sleep is fragmented and bothers my wise (open mouth very noisy). ENT just shrugged his shoulders.

Other upper chest issues are: weakened cough/sneeze reflex, dehydrated saliva, difficulty clearing throat, swallow slightly weakened, voice wavers a bit.

My Neuro’s office includes OSA therapy so will try out his office. The collaborative approach might help. And I will not let an insurance company push their anti-fraud policies into my clinical profile again–even if it takes legal intervention. I use OSA therapy 100% of the time. I am not their problem.

Please keep us posted on future developments.

*wise = wife

Wow, you have been through so much. I feel for you, I am 72 and after all the mri's and scans and nerve tests, nerve biopsy and spinal tap, and xrays, I have nodules on my lungs and enlarged right thyroid and nodules on it. Diagnosed with AISP at Cleveland clinic, a form of CIDP, these disease are only from the 80's so doctors don't know a lot about it. Mine came 2 yrs ago digging dirt and laying 6 patio stones, I was in so much pain and couldn't sleep, doctor to doctor then cleveland. I did sit mri in pittsburgh wasn't very clear, but showed I had a veretbrea broke, but couldn't tell when, it had to be then. I have no reflexes anywhere, luckily I have the throat one and can swallow, it can effect that and that scares me, tired of not being able to hardly do anything even wiping myself in the bathroom. I am so stiff and hurt around the middle and get cramps and spasms. I just keep on moving and do what I can, just wish I was normal. How we take everyday things for granted. I had d5 days of ivig months ago and now 1 a month for 3 months, it seems to help me walk normal almost and 4 days before treatment got stiffer and couldn't walk well. i hate this stiffness.

Sorry its been so long since I have updated here, its surely been a whirlwind that I am still going through. I guess I have to get used to riding this whirlwind. Since surgery I have had a chest XRay, Lung Function Test, EKG, and CT Scan of my heart and lungs and another BiPAP Titration since the surgery. Right after surgery they started with a Overnight Oximetry that showed my CPAP and Oxygen were still not helping. The Lung function test showed that my lungs are not expressing the Oxygen through my blood correctly. So they ordered the EKG and CT Scan which I got a call that just said the results were fine.(Whatever that means) so okay what now? Doctor will see you back in May, like everything is fine!!! So I have had my Sleep Titration they ordered a BiPAP without back up with settings of 18/14. I work for a DME Company I train people to read sleep studies. This is high and I probably will have a hard time tolerating the pressure and will struggle to be compliant. Last night was the first night, I slept less than 4 hours my mask kept leaking and my AHI was still 9, much better than 79 like it was but still not as good as I would like!!

I also changed PCPs and the new Doctor ordered lots of tests increased my BP meds and since I have now become diabetic she increased those meds too. being on Prednisone makes it very hard to lose this weight and to keep my blood sugar down but I am trying. I have a appt next week with a nutritionist. I am tracking my BP and Sugars daily and I am going to be seeing a nurse monthly to discuss the results. If doctor needs to play with the meds the nurse can help. The new doc also did blood and urine tests so first I get a call that I am extremely B12 deficient and doctor wants me to start having B12 shots bi-weekly. Next day another call that says my urine test shows abnormal proteins in my urine and doctor wants to test me again in 3 months. I ask, well what does that mean? Nurse says could be nothing doc will just test you again in 3 months. Well what the heck I am supposed to worry for three months?? Or google and search and freak myself out for 3 months?? Its no wonder my B12 is non-existent almost all of the meds I take are on the list shared below!

I also struggle with my IVIG treatments, I have almost never felt any change after receiving them but I sure do feel when I need them if that makes any sense. I am still receiving 70g of Gamunex C in 700 ml every 3 weeks now. I also am taking 200 mg of Azathioprine and they have taken me down to 15 mg of Prednisone (trying to taper me off completely). I have been swollen for a year now (feet, legs, hands, arms I believe even my belly and face are swollen but not like my extremities. My Neurologist only changes the Azathioprine and Prednisone never the Gamunex C and he always tries to blame what is happening on my weight or the fact that I had 5 months of non activity and muscle atrophy while the other Neurologist was testing and trying to diagnose. I am going to reach out and see if I can find another Neurologist that has knowledge of CIDP but it seems rare here in my area. After each infusion I feel like I seem worse. I swell and it seems harder to walk and breath etc. I just dont know. I am working and I want to be working but boy is it hard. I put on this happy face like I am sure all of you do as well. I pray for relied at the same time as I smile and train new hires or create our work protocols etc. Thank god my office/training room is all in one so I dont have to go back and forth and the bathroom is right across the hall! I use a rollator (walker with seat attachment) which my doctor wishes I wouldnt use but I exhaust so easily and my back hurts so bad I have to have a place to sit. My scooter that my auntie has some kind of issue with the battery or electrical system and my hubby is not very technical or handy. and I cant find any place to fix it because I didn't buy it and I dont have the info so no one will touch it.

Sorry I dont mean to be negative and bring anyone down, its just so hard, No one can understand this but all of you. I think my hubby at times thinks I am faking, my parents live in California and I wish I could be close to them but telling them how I am truly feeling just makes them panic and worry about me. Life with CIDP this past year has been a challenge for sure. I hoped 2016 would be better but it didn't start off that way! I can only pray it gets better. On April 30th there is a GBS/CIDP symposium here where they will be discussing IVIG. I am hoping my hubby will wake up and take me because I cannot drive that far on my own. The last one here in December he told me he would take me then make up excuses because he was tired and it was two weeks after my surgery. Excuses :( but I cannot pick on him he has been extremely supportive having to care for me in ways you shouldn't have to at our age :( Okay well I am done for now, thank you for listening and I hope all of you Doll, Georgia Guy, Mabes and everyone else who has read my blog is doing well. Thank you and God bless

Oh and by the way I haven't slept in the same bed as my hubby and dogs in almost 1 year. I sleep in my recliner that is a power chair and can stand me up if I dont have the strength. My hubby took his mom and step dads old sleep number bed and its awful. My mom even tried to buy the inserts for it but its the mattress itself that the inserts go in to. Its so uncomfortable. Who takes a used bed anyways :( I cant afford to buy new mattresses so we deal.

It sounds like your getting to the bottom of things. I think it's good news to find out about the b12. Hopefully, once corrected it will improve many symptoms. I would try and figure out the cause of the b12 deficiency. The medications can deplete but consider that you may have been low before. If that is the case, it may be an indicator of the cause of your cidp.

I know that the bipap was too much pressure, even though it was on a very low setting. I would often feel unrested after a nights sleep without it. But nothing compared to the exhaustion from the vpap. It was my diaphragm too. Two telltale signs were hard to breathe after eating from the weight of the food sitting on my diphragm, and hard to breathe while laying flat. Fortunately, I am better now. I wish the same for you.

I had many other deficiencies as well, so it's good your meeting with a nutritionist. I went to an integrated md. They are covered by insurance but the tests are not. For me, a nutritionist would not be covered either. I think it's crazy how insurance will pay for weekly ivig but not for a proper nutrition test. The nutreval ran around $200. Worth a million though. I would not supplement for at least 2 weeks before testing to get accurate results.

Please let us know how things turn out. I am interested to see what the differences are between a nutritionist and an integrated md. I wonder how many of us are effected by insufficiencies and deficiencies and am pretty sure there must be others here needlessly suffering.

Take care