Wednesday, August 1, 2007

thoughts about tiantan puhua

alright, now that i have a good internet connection outside the hospital, i can give you all my thoughts on my stay at the hospital.

first of all, it was difficult communicating with the nurses because many of them do not speak english. it was difficult talking with them at first. some of the nurses in the south ward speak a bit of english (like ally who’s no longer working there and jingjing who replaced her) but MOST of them do not. unfortunately my chinese isn’t good enough to really talk with them, so oftentimes, no communication went on…but i do miss seeing the nurses. many of them were very attentive and i can tell you that there were a few gifted in searching out my small, non-existent veins for my IVs. irene and shirley were very good! i miss them dropping off my 9am, 12, 4, and 8pm medicines, telling me, “9-clock…12-clock, 4-clock, 8-clock.” i miss them. hahah
second, i was lucky considering that many other patients had all sorts of problems. for example, some people had diarrhea and others had bacteria infection in their brains due to their brain surgeries. it’s funny that as soon as i check out of tiantan puhua, i get sick. i had a fever of 37.8 C and it lasted for 3 days. i got home on saturday and i started feeling sick the next wednesday. luckily by friday, my fever had lowered and by saturday, i was fine! whew!
third, let me tell you, don’t have high expectations for therapy at this hospital. for me, the most important therapies were speech and physiotherapy. i did NOT have a real speech therapist until basically a month after i checked in! i had lily for a little while who was such a great speech therapist! but turns out that her boss zhou comes into my room during our therapy session, starts yelling at her in chinese for a while, and then leaves. poor lily was crying and i asked her what was wrong. it basically was about how she spent too much time on this one patient during february and march because they did not have a lot of patients then. i’ve heard different stories since, but nonetheless, zhou is a poor manager which is why she is no longer the therapy manager. mark became the manager a few days before i checked out of the hospital.
granted, they understand they do need to work hard at improving the therapies, but i was disappointed because the most important part of getting stem cells is also working them so they know what their new role’s/job’s supposed to be! dr. wang and dr. wu, the” directors” of my case constantly stated this: stem cells plus therapy produces the best results!! well, obviously i got 4 stem cell injections as i’ve said on this blog, but therapy? quite lacking. so you know what? i was in the hospital for a total of 66 days and i had 19 days of speech therapy sessions. yes, that’s right. ONLY 19. that’s all. so yes, the hospital knows their therapy is lacking and they told hubby and me that they are working hard to improve them.

also i wrote many patients who had been treated at tiantan puhua and nanshan stem cells therapy hospitals to get an overall view of the treatments/therapies. i found that at nanshan, they have the vocastim collar which actually would’ve been EXCELLENT in my healing process, especially because it helps people with ataxia, dysphasia, and dysarthia problems. i have all 3 of those!!! it’s basically Electric Current Therapy of larynx paresis, aphasia, dysphasia, dysarthria and dysphagia.
i put a picture of christine with the vocastim collar on in a previous blog so you can check it if you want to see it.

you can read about vocastim here:

you can see more here:


not sure you could read that so i copied it here:

Electric Current Therapy of larynx paresis, aphasia, dysphasia, dysarthria and dysphagia
(as published by Johannes Pahn, Martin Ptok, Hans-Joachim Radü, Gabriele Witt in: “Interdisziplinär Jg. 11, August 3, 2003, p. 176 – 178)
electrotherapy, larynx pareses, aphasia, dysphasia, dysarthria, dysphagia
In Germany, about 100.000 goiter surgeries are carried out annually. It is assumed that 1,000 - 3,000 patients are suffering from larynx paresis as a consequence, with unreported numbers probably ranging much higher. As registration is not compulsory, an additional number of larynx pareses caused by surgeries of head, cervical spine and throat with different indication can be assumed. Additionally, it is estimated that cerebral damage triggers another 10,000 – 20,000 cases of vocal and speech deficiency or loss. This is caused by cerebral insults or infarcts, aneurysms, tumors, meningitis, encephalitis, neuritis and generalized affections of the nervous system. In Germany, it is estimated that about 100 people suffer severe skull-brain-trauma caused by accidents in a day. Reporting such cases is also not obligatory. The total number of patients suffering from respiratory and phonatory damage triggered by pareses of cerebral nerves is thus an estimated 20,000, at the least, with a large portion suffering from dysphagy as well. This figure, however, comprises only the newly affected patients per year.
The medical and neurological acute care and subsequent attendance of a rehabilitation clinic is followed by so-called practicing exercises. This is what ambulant therapy of vocal, phonatory and swallowing dysfunctions concentrates on. A sensible selection of exercises is promoted by diverse tests as well as diagnostic measures.
The combination of practicing exercises and electric current, however, is used to a very small degree, although electrotherapy is extensively applied in the fields of orthopaedy and physiotherapy in the context of motoric damages with identical etiology (Edel, 1983). Such treatment has proven to be extremely successful in these fields.
What are the reasons for neglecting electrotherapeutical treatment of vocal and phonatory irritations including swallowing dysfunctions triggered by pareses of cerebral nerves?
First, we may assume that patients without proper experience are somewhat reluctant to handle a stimulation current unit. This obstacle however, could be eliminated by special education in the course of the training. This is hardly advisable for physiotherapists, as training for vocal and phonatory treatment would be much more of an effort than for the vocal and speech therapist to read the user instructions of the stimulation current unit.
Other reasons for reluctance have to be considered:
Several expert fields cover the diagnosis and therapy of diseases of the cerebral nerves V, VII, IX, X and XI. Both interdisciplinary contact and knowledge are presumably not sufficient to cross the border to close cooperation. Due to this, problems in competence, terminology, the interpretation of diagnostic procedures and different therapy conceptions are likely to occur.
Obviously, distinctions of the pareses of the cerebral nerves have to become more sophisticated. In most cases, the knowledge on nervus vagus impairments is very much restricted on the recurrent nerve paresis. The diagnosis for any damage to all nerves connected with swallowing and articulation is most frequently sensoric and motoric aphasia and dysarthria. The subtle motoric movements are full of antagonisms however, which can
only be avoided by synchronizing the electric current impulse with one single and separate performance intended by the patient in each case. Simultaneous stimulation of both agonist and antagonist will block any form of regeneration. This principle also applies for the skeleton muscles. The size of the individual muscles, however, already facilitates the isolated stimulation of the agonist. When dealing with phonatory, articulatory, resonance forming and swallowing subfunctions of a muscular system commonly used, you fall into the trap of antagonism quite easily. The success of muscle training depends on the small border between too much and too little demand. Crossing this border is dangerous in both directions. Sports trainers create fine-tuned individual training schedules to avoid making mistakes. This principle has an even higher significance for pareses and the effects on muscles as well as possibly the impaired regulation of the function.
This concerns:
1. The frequency of the stimulation. It must be applied several times a day.
2. Pauses for the affected system to recover between each phonation or articulation as well as between the daily applications.
3. Adaptation of the requirements to the performance to the state of regeneration
4. Adaptation of the stimulation current properties to the reacting capabilities of the neuromuscular units. They continually change in the course of the regeneration. The actual state can be determined by electrical measurement of the accommodation and a subtle vocal status. In case of pareses with difficulties in breathing, spirometry with differentiation of the expiratory and inspiratory dyspnea must also be included.
Conditional reflexes only function in case of undamaged reflex arcs. This includes sensor afference, center, efference and motor. Speech requires a multitude of conditional reflexes, which form automatisms, combined to dynamic stereotypes. No damage to a peripheral neuron only concerns efferent nerve fibers. It always also affects the afferent fibers morphologically positioned in the same nerve with the efferent fibers. The lack of a sensorial information of the center in the medulla oblongata and in the cerebrum blocks any motorial reaction. This means that the motors are not regenerated without regeneration of the sensors, which gives the stimulation of the sensors the same significance as that of the motors. A normal regulation depends on deep and superficial sensitivity. The sensors of the surface are positioned in the mucous membrane. Every acute or chronic inflammation of the mucous membrane not only damages its power of resistance, but also its embedded sensors. However, it is required that the sensors function to make electrostimulation successful. An acute inflammation is found to be painful. A slowly developing chronic inflammation, in contrast, is hardly recognized, or only as globus sensation. The causes for chronic inflammations are nicotine, alcohol, allergies and, above all, reflux. In most cases of chronic pharyngo-laryngo-tracheo-bronchitis caused by reflux, symptoms such as heartburn or pain are missing. Consequently the reason for starting a therapy is missing.
Every patient with dysphagia, bilateral laryngeal paresis and frequently only unilateral paresis suffers from chronic inflammation of the mucous membrane through reflux. The inflammation is significantly more serious as the one frequently found among all people. The reason, for central etyology via the cerebral nerves IX and X, is believed to be damage of the plexus pharyngicus, which innervates the sphincter pharyngis inferior in the esophagus entrance in addition to its function for articulation, resonance formation and swallowing. In case of central and peripheral lesions, impairments of ventilation, arytenoid movement to open the lower hypopharynx and sensor failure must also be taken into account. The success of an electrostimulation therefore strongly depends on a successful reflux therapy, among other things.
Very frequently, any therapy is postponed in expectation of a spontaneous remission. However, it cannot be predicted. At least, it is frequently expected after goiter surgery.
This problem lies in the interval between damage and remission. If it takes commences too late, fibrosis of the joint capsule of the arytenoid has already started. This means ankylosis, which in case of a bilateral paresis can lead to tracheotomy and lateral fixation of a vocal chord.
But even a unilateral paresis with a milder dyspnea frequently impairs physical stress and the vocal functions. Exercises don’t help much in these cases. Electrostimulation is not taken into consideration, because it is known not to be very helpful with the modalities of the application used until now. Prerequisite to an effective stimulation of the stiffened arytenoids is a manipulative relaxation of the capsular fibrosis in combination with several applications of stimulation a day. A suitable manipulator is manufactured by Storz. The goal of every therapeutical measure is facilitated by exact knowledge of the pattern of paresis. Neither central nor peripheral pareses affect the nerves in question in the same way with respect to distribution and seriousness of the damage. Even a recurrent paresis may have a quite diverse pattern. Precise information connects electromyography with speech and vocal status. The muscles used for articulation can be easily measured electromyographically using superficial electrodes. The muscles of the larynx, however, can only be measured adequately using puncturing electrodes and exercise. The procedure depends on the availability of equipment and required expertise. The problem is situated within the competence of three fields, phoniatry, neurology and logopedics. But it could be solved by special training for interested specialists.
Therapy results
The diagnosis and therapy for pareses of the voice and the articulation performed at the university clinic for otorhinolaryngology currently has experience with more than 1,000 patients. In most cases, these are referred patients with long intervals with damage of up to six years. Even in cases of bilateral recurrent pareses that have existed for several years, decannulation can be achieved in approx. 50% of all cases. Between 1992 and 1998, the tracheal cannula could be removed in six out of eleven cases. This number is limited by neurological and medical diseases, threat of relapses and old age. In cases of a short interval after the damage has taken place, we estimate that regeneration is reached in 80% of all cases. Remission takes places sooner and faster than we would expect without stimulation current. In total, partial or complete regeneration in cases of delayed treatment can be achieved in 62% of all cases.
Dysphagia existing for several years respond astonishingly well to stimulation current. The remission of every aphasia, dysphasia and dysarthria is accelerated considerably in combination with standard therapeutic measures, which do not lose their significance at all. The results are confirmed in Bochum (Radü), Hannover (Ptok) and Brügge (van Gompel).
Based on the results and practical experience, the stimulation current device VOCASTIM was developed by Physiomed. In combination with 4 CDs, it features an extremely safe standardized procedure of electrophonatory and articulatory stimulation (NMEPS/NMEAS Pahn, 2002).
The device is manufactured in two versions. The master version for therapists features excitability measurement, programming a chipcard with the respective stimulation current properties and control of the therapy time already used. The more basic version was developed for the execises carried out by the patient at home. The chipcard prevents from any wrong operation.
Still, it is required that the patients see their phoniatrist/speech therapist regularly to check the progress and adapt the stimulation current properties as well as the vocal/speech performances to the state of the regeneration. Exercises besides electrostimulation are also necessary.
Even if the number of laryngeal pareses after goiter surgery slowly decreases through neuromonitoring recently applied (Neumann, 200), the total number of all pareses with a
vocal/speech background is not likely to change in the near future. Traffic accidents alone cause a large number. It should be rewarding to do away with prejudices against electrotherapy and again start using this therapeutic method almost forgotten since Gutzmann in phoniatry and speech therapy. (Kruse, 1989). The results when expertly applied speak for themselves.

ok i could go on and on about how much that vocastim collar could’ve helped me improve. unfortunately i didn’t push them enough to get it. i bugged them about 3 weeks before i checked out of the hospital which was plenty of time to get it but the higher-ups didn’t want to spend the money to get it since it is very expensive. sigh, so that’s very disappointing for me.

luckily hubby told kotan before i checked out of the hospital that they should’ve charged the first few people who need to use it a bit more for their therapy so then actually, the collar would’ve been paid for in absolutely no time! i think he said why not charge the first 5 people an extra $500 so after 5 people use it, it’s all paid for!!! sigh. it’s just disappointing that the one thing that would’ve added so much benefit to my therapy sessions wasn’t bought when i was there.
but the good news for me is that my tongue has fattened out and it actually can move a bit to the right, the first time that has happened since i was misdiagnosed in tokyo, japan in june 2003!!! that was 4 years ago and from the stem cells and therapy i’m doing on my own, my tongue now is looking more normal and actually moving to the right!! YEA!!!