Sleep Apnea/Phrenic nerve damage, Bipap CPAP
Thank you for considering my question.
-1972 - 1983 - (age 12-23, I'm now 53) Misdiagnosed for 11 years with mental health related issues (depression symptoms - extreme exhaustion, great problems with memory and concentration, "laziness" - falling asleep in class, sadness, morning anger, ect., etc,),
- Starting around the age 16), unexplained physical symptoms began - irregular heart beat, high blood pressure, and episodes of morning dizziness - because doctors could find no reason for these syptoms, they were also included in my mental health diagnosis.
- At the age of 20, physical symptoms became worse, and I also began dramatically gaining weight for no apparent reason.
-At the age of 22, always knowing inside that most, if not all my symptoms were totally unrelated to a mental health diagnois (nothing ever worked to ease, my symprtoms, psychiatric medications and medicine given to help me sleep made things much worse), I set out to research the answers on my own.
- At the age of 23 after taking a medication prescribed for sleep by my psychiatrist, I dramatically awoke from sleep sitting up in bed gasping for air, had bursted blood vessels in my face, my eyeballs were bulging and bloodshot, and my lips wer purple - my wife thought I was having a heart attack, my physichiatrist thought I was being overly dramatic.
-Two months later during my research, I found a newly published article in some minimally published health magazine at my public library - it described the effects of severe sleep apnea.
-I knew I had found the answer but it took mme months to "sell" it to my doctors and health insurance company, finally my psychiatrist, after researching the article I provided him with got my referral pushed through to the only sleep center near me which was 3 hours away (back then I think there were only about 6 sleep centers in the entire stare of Illinos).
-The Pulminologist who saw me, Dr. Dwayne Morgan, was one of the pioneers in sleep medicine at Peoria Methodist Medical Center.
-He examined me, and then stood back at proceeded to describe my symptoms to me, all of my symptoms, and he said he did this because he knew that, based on the medical history sent by my doctors and their opinions, there was no way I could even begin to describe "what was what" anymore than my doctors had been able to for the past 11 years.
-He put me in the hospital and I had sleep studies done on 3 seep seperate nights, the second night was to confirm the findings of the first night, (he thought the measuring devices had malfunctioned somehow because my results were so poor - they hadn't malfunctioned, I was the most severe case he had seen, the third night was with a CPAP.
-Because of the extree narrowness of my airway he also wanted to have the UPPP surgery performed and to utilize the CPAP in conjunction.
- He told me that after I healed from surgery, most if not all my symptoms would gradually diminish - and they did, all except my difficulty with memory and concentration of which he and other doctors hypothesized (after reviewing brain scans) this was due to chronic hypoxic episodes that had permanently affected small portions of focal gray matter within my brain.
-They put me on Ritalin (also used for narcoleptic patients) and it really helped - 3 time college failure to deans list.
I submitted so much laborious history because I need answers or at lease suggestions on how to proceed getting proper care in light of my current health problems.
I had 5 strokes to the cerebellum after a stenting procedure to repair a 95% blocked left subclavian artery went wrong and partially blocked the origin to my left vertebral artery.
-Too risky to try and repair the stent, and before attempting bypass surgery (also risky in my case) they attempted thoracic outlet surgery to improve flow, it didn't help much and the surgery resulted in damaging my left phrenic nerve, resulting in my left diaphragm being stuck in an upward position.
-I could no longer use my CPAP because I couldn't expel the air properly, they changed to a BiPAP it helped some, but even with adjustments, I still feel like I'm suffocating when I wear it. I do use the oxygen line hooked to the mask (levels dropped to 68% at times during sleep), but the flow of the oxygen of course isn't strong enough to keep my airway open.
Do you have any suggestions?
-At my initial suggestion due to doctors concern over Ritalin increasing blood pressure and heart rate, as a trial why don't they try me on modafinil to help with concentration. It did nothing and the doctors I have now (rather than 20+ years ago) are not fully aware (and unwilling to consider without those medical records) the reasons why I was first placed on Ritalin, and remained on it for 27 years with no problems, and are afraid to put me back on even a small dose, with no alternatives offered.
Do you have any ideas?
And respectfully, if you don't have any professional suggestions or ideas, please offer what steps you might take yourself to find answers if this were you.
Outside extensive use of Positive expiratory pressure(PEP) Valves to increase expiratory strength, weight loss, rigorous breathing exercises and possible repeat of the UPPP surgery (it often needs to be redone) I don't know what can be done. Being in top physical shape would allow your body to use minimal oxygen while at rest. I have found the article below concerning a diaphragm pacemaker, but honestly I have no experience with these.
The next step would be extreme. A tracheostomy along with mechanical ventilation at night, and frankly with SaO2 readings hitting 68% I'm surprised you're not there already. My expertise lies more in the physical and mechanical aspect of breathing, as far as medicines that would help, I'm at a loss. I wish you the best of luck!
Breathing pacemakers are indicated for patients with diaphragm paralysis who would otherwise be completely or partially dependent on mechanical ventilation so long as the phrenic nerve(s) and diaphragm(s) are intact. Patients with diseases in which the phrenic nerves have completely demyelinated, such as advanced ALS, or the diaphragm muscle is irreversibly atrophied,such as muscular dystrophy, are not candidates for diaphragm pacing.
Careful preoperative evaluation (phrenic nerve conduction studies, pulmonary function tests, etc.) would be indicated in all cases. Benefits of diaphragm pacing for either unilateral or bilateral diaphragm paralysis include:
• Improved respiratory function since the inhaled air is drawn into the lungs by the diaphragm under negative pressure, rather than being forced into the chest under positive pressure.
• Lower infection rates due to the reduction in suctioning, elimination of external humidifier and ventilator circuits, and the potential removal of the tracheostomy tube.
• Improved mobility, normalized breathing and speech patterns, ease of eating and drinking.
For patients with unilateral diaphragm paralysis and non-functioning phrenic nerves, a diaphragm plication is often considered. Following a plication procedure, the paralyzed diaphragm resists upward movement and generates negative pleural pressure which improves ventilation and gas exchange on the functioning side. If the phrenic nerve damage is relatively recent (within approximately one year) there is the possibility that the nerve(s) could be re-innervated through the use of accessory nerve grafts.
Neurosurgeon Dr. Abbott Krieger has been working on a technique to repair the phrenic nerve by way of grafting. He uses a living intercostal nerve and grafts it to the phrenic nerve. Approximately six months later, nerve regeneration occurs and the phrenic nerve comes to life, so to speak. This regeneration helps the phrenic nerve regain electrical function.
A pacemaker, similar to the kind used for cardiac patients, is then inserted to help the fused nerve send correct "breathing" signals to the diaphragm, which is called "pacing the phrenic nerve." This fairly new innovation has showed promising results, says Dr. Krieger, and is a viable alternative to living on a ventilator, which can shorten your life due to possible complications.
At this time, surgery for phrenic-nerve damage is the only treatment known to repair it.
Read more: Cures for Phrenic Nerve Damage | eHow.com http://www.ehow.com/way_5525288_cures-phrenic-nerve-damage.html#ixzz2J09aLukN