Story of my headache
- The first distinct symptoms and search for treatment in your city
- Search for specialized specialists in other (large) cities
- Chiari anomaly 1.
5.1 What is this disease?
- Hernia and narrow vertebral canal
- Epilogue about the problems in our medicine
Attention! All schemes of treatment and prescription of medicines are strictly individual for each person. Self-diagnosis and self-treatment can lead to dangerous consequences. The article is not advisory, but narrative. In case of similar or other unpleasant symptoms, consult a doctor!
Hey. I am a little over 30 years old, man, I live in Russia. I work in the IT field. This information is important as age and profession play a role. For example, if I was 90 years old, then it would not make sense to complain about health, since at this age a person consists of diseases).
In this article, I would like to talk about the headaches and related problems that I have been struggling with for more than 10 years. The purpose of this article is to tell the personal experience of trips to doctors, the treatment process, the results. If someone is interested, I still have contacts of doctors, I can share. I also very much look forward to feedback - maybe someone had (have) similar problems and you can give useful advice - recommend the doctor, tell about your experience of treatment, etc.
At the moment, the headache either subsided or I got used to it — I can’t say for sure, because I haven’t experienced a state without absolute pain for a long time. I can only say that now she’s less worried, so I’ll talk about her in the past tense, as she did bother her much earlier. If to describe this pain, it was concentrated in the back of the head and had a aching character. There was a feeling that the head was squeezed. The constant companion of this pain was and is nowconstant noise in the head - a feeling of high-frequency tinnitus. This noise bothers me quite a lot. The combination of pain, noise, and possibly other factors interferes with sleep - the quality of sleep is poor. In addition, in recent times, sometimes the neck is wedged, where, according to MRI results, 3 C2-C5 hernias and a narrow vertebral canal were found. The narrow canal and the presence of hernias have led to a relative central stenosis of the spinal canal. Now I think maybe all the problems are due to this? But first things first.
The first distinct symptoms and search for treatment in your city
I do not know whether this role can play, but I will describe it anyway. In the early 2000s, I moved from my native city to another to prepare for university entrance. Separation from home, changing the environment and lifestyle, intensive study - all this created a lot of stress, which I could not tolerate - exhausted, tired, often wanted to sleep. Even then, the head of what is called a “pain”, but I did not attach any importance to this, writing off on overwork and stress.
One winter, on New Year's Eve, I was driving home on the bus, and it so happened that our bus knocked a woman to death and flew into a ditch, turning over on its side on a snow pillow. Fortunately, no one was injured on the bus, but we barely got home. The next day, in the evening, I fainted - it was the first syncope, which then repeated several times. I remember now — I went to my brother’s room, said something, and realized that everything was swimming before my eyes — the next second I was already lying. Then I also did not attach any importance to this - I thought that because of the excitement about the recent events with the bus.
The culmination of stress was the admission process itself, which did not go very smoothly through my fault. But nevertheless - everything managed and I entered the IT faculty. Another city, an unusual environment, a different way of life and hard study - all that remained.
At that time, I think, the study was tougher than it is now (and in terms of deductions) and they immediately made it clear to us that no one will mess around with you. I had to delve into many things that you see for the first time. In general, I personally experienced stress, I think permanent.
Somewhere in the second year, I began to notice that my "head aches a bit" turned into a "head aches constantly." This was especially felt in the morning. It was just a aching stone on his shoulders. Besides, I noticed that I almost always have red eyes, although I do not nerdy and do not sit out at the computer. Several times I went to an oculist - she noted that her eyes are red and even expressed the opinion that I was mistaken by a profession - they say because of the computer. Whether she prescribed any treatment, I will not remember.
I want to say that the state of constant headache was quite a hindrance to learning - it is difficult for a long time to focus on the task. Long - I mean 4-5 hours. I clearly remember that after 4-5 hour test papers, I was just squeezed out like a lemon and like a zombie I went home to uni to rest. In general, I noticed a correlation in myself that the more I did mental work, the more I got tired, the more headaches and noise (ringing) in my ears became. My constant headaches were accompanied by constant noise (ringing) , felt in my ears, which has survived to this day .
At some point, I realized that "it is not white," and I have to go to the doctor for an examination. At first I got to the doctor on an EEG. There, in the process of carrying out this procedure, I fainted - I do not know what I played, I did the procedure for the first time - maybe I was just worried. The doctor wrote a referral for a more complete examination to the headache center (we have one).
After a while I went to this center to a neurologist. He explained his problems to the doctor (headache, poor sleep). Her diagnosis was - "Neurosis-like episindrom (?)". Recommendations: EEG dynamics, pills: Kavinton, Diakarb, Mezapam, Clonazepam, Milgamma, Cortexin. I took the drugs, but did not feel much improvement. From some pills, in my opinion, Mezapama, I chopped off, but in the morning I felt like a vegetable. After a couple of receptions I decided to stop drinking them. Soon, I did the direction of the repeated EEG to exclude or confirm epilepsy. As I understand it, there was no epilepsy. As such, no further treatment was prescribed, the doctor wrote me a referral to a psychotherapist.
The psychotherapist first gave me a test for schizophrenia (as I remember now - some kind of written test + pictures). The test passed - not a schizophrenic. The treatment she prescribed is glycine under the tongue, chocolate. That's all. For the time being, I decided to score on the search for a cure, since nobody canceled the current affairs - studies, etc., I thought, I will do later when I press. It was 2005.
Two years later I decided to take up treatment again and made an appointment with a neurologist at the regional hospital. I do not know how in other cities, but our regional was considered a good place along with private or some incomprehensible offices. The doctor listened to me and was extremely surprised that I did not do an MRI. She directed me to an x-ray of the neck and prescribed an MRI. The X-ray revealed: signs of osteochondrosis of the cervical spine at the level of C5-C6, no signs of instability. But on MRI it was revealed lowering of the cerebellar tonsils into the large occipital fossa by 0.6 cm. The diagnosis of MR is a picture of arachnoidal changes in liquorocistosis. Chiari's anomaly 1. Do not worry, I already understand that some (perhaps many) doctors do not know what to write when they do, anyway, at least some kind of diagnosis is written. Quite often, such diagnoses turn out to be utter nonsense, it’s just very uncomfortable for a doctor to say directly - I don’t see anything here, so I won’t write anything and I can’t prescribe treatment. With the MRI results, I went back to the neurologist, who did not attach importance to Chiari Abnormality. Now I don’t remember whether any treatment was prescribed, possibly medicamentous. I decided to score again for a couple of years ...
During these two years, I once again did an MRI, turned to another neurologist (on very good advice), who took me coldly until I showed a bottle of brandy, which he was glad for. He also did not attach importance to Chiari Abnormality, saying that it could easily be an artifact of a snapshot, which in fact may be true. I will explain. The fact is that the result of MRI is a set of images - slices (slices). In one study, an organ slice may be at one angle, in another - slightly under another. Imagine a melon torpedo, put it on its side and make a cut strictly vertically - there will be one cut diameter. Now make a cut a little at an angle - there will be a larger diameter. So here, as far as I understood, in one study it can show the dropping of the tonsils by 6 mm, in the other - 4 mm. In general, the number of mm may or may not play a role.
He prescribed medication treatment - all the same drugs: Mexidol, Kavinton, Cortexin, Diakarb, Glitsyn, Novopassit. I did not feel much improvement.
Search for specialized specialists in other (large) cities
A year later, I began to think about how to search for doctors somewhere in more specialized institutions. I found a specialized state institute on the Internet (I do not indicate the names yet, if I need someone, I’ll inform you in a personal) and wrote an email to a neurosurgeon, in which he also described what worries me, and also his diagnosis - Chiari Abnormality 1. that if this is really Chiari Anomaly, then the treatment is only operative and nothing else. To put it mildly, I was scared then. But what to do, you must go to the reception. At the reception, the doctor looked at the pictures and said that the doctor in my city, that I have no Chiari, is just an artifact of the picture. He prescribed wearing a neck collar, drugs: Spasmalgon, Tempalgin, Persen, Nootropil. I bought a collar, some of the drugs are just relieving pain and cramps. I already knew that the problem would remain. As for the collar, it cannot be worn for a long time, since it is possible to weaken the neck muscles only to aggravate the problem. In general, on arrival home I scored again for a year.
Do not rush to see what this disease is - Arnold Chiari's Anomaly 1. I will tell you later.
A year later, I decided to resume the search for the problem again. I already wanted to at least understand and make a diagnosis (probably this is one of the most difficult parts - to make a more or less correct diagnosis). Again I found a specialized state center on the Internet, but already in Moscow I signed up with a neurologist. The doctor examined me, looked at the old documents and sent me to the EEG. I put sensors on my head + sensors on my hands for a cardiogram. During the procedure, I felt bad - I tell the doctors that I’ll disconnect now. And disconnected. When I opened my eyes, I looked at me, frightened, by the entire cabinet staff. For the first 10 seconds I did not understand where I was at all. An electrocardiogram recorded asystole - essentially a cardiac arrest for 15 seconds. Perhaps this was the cause of their fright. In conclusion, also, as before, epilepsy has not been confirmed, but they described asystole and wrote a referral to a cardiologist at a specialized cardiology center here in Moscow. According to the results of the conclusion, the neurologist ruled out the connection of my problems with neurology and said that I had heart problems and would most likely have to put on a pacemaker. I got nervous again ...
I arrived without an appointment (there was only a referral) to the doctor at the cardiology center and generally, according to the rules, I should not have been accepted. But the doctor entered the position, considering that I was from another city, and arranged for me to undergo tests. These included: a cardiogram, a holter, a treadmill test (this is testing in a load on a treadmill), an echo of the heart, an artery of the arteries, etc. In general, a complete set. All but halter research I went through in one day. An interesting story happened to the halter. This is a study - cardiogram removal during the day. You wear a wearable device, attach sensors to the body. You keep a record of your state in a notebook with an indication of time and work — you ate so much, then you walked, then you experienced excitement. All this is necessary in order to correctly interpret the testimony. When I returned to the hospital with a halter, I was wearing a white translucent shirt and I could see the wires on my body. I rode the subway. The danger was that the day before in Moscow there were terrorist attacks on the subway). I could well be knocked out or twisted for every fireman.
The doctor did not reveal significant violations that can provoke fainting or headaches. The diagnosis was as follows: mitral valve prolapse 1st., Mitral insufficiency of 1st, vasovagal syncope. Regarding prolapse, she said that this is typical for people involved in sports. I actually actively went in for sports - especially jogging. Heart problems have never been. She did not prescribe any specific treatment for the heart. Recommendations were made on lifestyle. In fact, I am grateful to her - one of the few doctors who did not prescribe treatment, just to write out. Since there are no obvious deviations, then the drug treatment does not need to be prescribed.
I returned home and temporarily hammered on the problem again - there were a lot of current affairs.
Chiari anomaly 1
Frankly, after the cardiology center, I somehow got tired of looking for doctors and wanted for a while to leave everything as it is and live with what it is. So five years have passed.
One day, flipping through the tape in VKontakte, I saw a post asking for one woman to collect funds for an operation about the anomaly of Arnold Chiari 1. After following the link, I got into the group of the center itself that does this operation. The point was that this center did not offer a standard operation for this pathology. I was interested in this information, because after all they put me, then they canceled Chiari Anomaly.
Now is the time to make a retreat and tell in brief about this disease and approaches to its treatment.
What is this disease?
Chiari anomaly is the dropping of the tonsils of the cerebellum into the large occipital foramen below the normal level (Chamberlain line). Such lowering of the tonsils can squeeze the spinal cord and disrupt the current of the cerebrospinal fluid in the spinal canal. These disorders can lead to all sorts of complications. Link with a more formal and detailed description of the disease:
Picture for clarity:
In the first picture you can see the lowering of the tonsils in the occipital foramen.
My picture for comparison:
I marked approximately with a yellow line the fact that the tonsils are lowered a little lower than necessary - by 2 mm. A green - that they do not interfere with the flow of liquor. I checked the liquor current separately, having made liquorodynamics (MRI such) - everything was normal there.
If the Chiari anomaly is confirmed and manifests itself explicitly , that is, a person has neurological problems such as: problems with walking, progressive weakness in the hands, syringomyelia (the first picture with a cyst), etc., then the doctor makes a decision about the operation with the patient . The classic operation in this case is decompressive trepanation of the posterior cranial fossa and removal of the arch of the first cervical vertebra ( http://syringomyelia.ru/chiary-surgery/). The purpose of the operation is to restore the circulation of the cerebrospinal fluid and relieve the compression of the spinal cord. I repeat once again - the operation is usually performed if the symptoms increase. Still, it is not to remove appendicitis. In short, a small part of the occipital bone, the bow of the first cervical vertebra is removed and a patch is put (usually from a special material).
On the Internet, you can find a bunch of horror stories like "yes, they will cut the skull there," "you will be disabled," "there will be a scar in half heads," and so on. I personally saw people after this operation - the scar was 3-4 cm in length and was not very noticeable. Not noticeable at all if it is covered with hair. Everything looked very neat.
Of course, here it should be noted that the operation as a whole is complicated. As with any surgery, there may be complications. Much depends on the doctor and the team and the clinic where the operation is performed. The fact is, as far as I understand, the records of this operation are not standardized (although it has been carried out for many years). Some doctors put a patch of material taken from the patient, others use artificial materials (based on animal origin). Some do resection (cut off part) tonsils, others do not, and so on and so forth. Much depends on the experience of the doctor in the conduct of this particular operation.
Do not consider it as an advertisement, but it seemed to me that good results were achieved in the N.I. Medico-Surgical Center. Pirogov . Why do I think so? I personally saw the operated people - operations were carefully performed, some people had regressed symptoms, some managed to slow down the disease. Extensive experience of this operation, modern equipment, positive feedback from patients (on the site you can find).
Although I eventually canceled this diagnosis, I still follow the doctor (he leads the group on the social network) and his successes. I can say that there is a young team there and they constantly speak at international conferences and successfully. I understand that in Russia we have achieved significant success in the treatment of this and related pathologies. Even more than in some European countries (I also read reviews of patients who did such operations in Germany, USA. I can say that everything is not so smooth there - they can do badly. I repeat, much depends on the doctor’s experience in this particular operation) .
This is with regard to the classical approach to the operation. Let's return to the place where I mentioned a woman from VKontakte. She raised money for an operation on Chiari Anomaly, but the operation is completely different. It consists of cutting the terminal thread (ligament) in the tailbone to relieve the tension of the spinal cord. Practicing such an operation is mainly the center in Barcelona . Their group in VK -. They give a general definition for a number of diseases - End Thread Disease. These include: Chiari Anomaly, Syringomyelia, Scoliosis, Platibasia, etc. From their website: “According to our research, the disease of the terminal thread is a consequence of the tension of the nervous system (brain, cerebellum, brainstem, spinal cord) shorter than normal, terminal cable.” To eliminate the disease, they perform an operation - dissection the end thread in the coccyx area, which as a result relieves tension.
Here I want to note the following.
- Basically, this operation is carried out at this Institute. If someone else declares that he also does such an operation, then usually the Institute responds that they did not pass their certification and the Institute cannot guarantee success.
- Opinion of other doctors about this operation. I asked for an opinion from some neurosurgeons who specialize in Chiari abnormalities. In general, they were all skeptical about its effectiveness. One doctor said that it can be performed while the person is growing (up to 14.15 years), thus not allowing the brain to stretch. Another doctor said that it can be performed in strictly defined cases, and not for everyone. In my opinion, he meant an operation for a fixed spinal cord (this is when the spinal cord attaches to the spine and really pulls it up). However, in Barcelona they say that their operation is not related to a fixed spinal cord.
- Opinion of foreign doctors. I asked on the Internet the opinion of neurosurgeons from the United States about this operation. They were also skeptical of her.
- As far as I understand, doctors from the Institute in Barcelona do not participate in international conferences of neurosurgeons dedicated to Chiari and Syringomyelia anomalies. At least at the conference this year (summer 2018) they were not announced in the past either.
- However, with all of this, I want to note that they have a lot of patients who have noted significant improvements after this operation. They themselves celebrate. It is important. Since in order to speak objectively, you need to see the positive dynamics in the pictures, and not only from the words of the patient. I personally met with one patient from my city who performed the operation there. According to him, he was "better." The diagnosis according to Barcelona was Chiari Abnormality. According to the classic version - no. Before the operation, there were problems with walking because of the symptoms - I could walk no more than a kilometer and then my legs would “get tired”. After the operation, it can go a long distance, but still fatigue remains. As he says, at least the progress of the disease is stopped.
Also spoke in absentia with another patient who had surgery there. Before surgery - constant pain in the neck and back. After the operation - nothing has changed. However, they have a bunch of positive reviews on the site and in the group. I want to believe that their operation still helps the majority. Also here I want to mention an interesting case: one of our doctors, who is generally skeptical about their operation, once noted that he had a patient who underwent surgery in Barcelona and his syringomyelic cyst decreased after (in the first picture above) . So apparently the operation still helps in some cases.
In general, when I saw the message of that girl in VK, I decided to resume treatment and try to figure out whether I have Chiari or not. I sent my pictures to the Institute in Barcelona. They expected me to say that I am a candidate for their operation. The operation is paid and then cost 18k euros. I did not have that kind of money and I decided to start digging up information about their method and patients. Actually, briefly my experience is described in the list above. As a result, I did not go there, but decided to try again to undergo examinations here and finally understand if there is this disease. I took high-quality MRI pictures for 3 Tesla and went through 3 neurosurgeons - once again I went to the very first one, which I had for a long time, also again to the second one and another new one I found in the paid center in Moscow. All three rejected the diagnosis of Chiari Abnormality.
I somehow calmed down a bit with this anomaly and decided, well, since 3 highly qualified specialists reject the diagnosis, then most likely they are right.
However, when I did an MRI, I did not only the head, but the entire back — the cervical, thoracic, sacral parts. Like many people in 30 years, a hernia was discovered. Particularly problematic area was the neck - I have 3 hernias of C2-C5 + protrusions + narrow vertebral canal there. Of course, I thought that the cause of my problems — headaches and especially noise — could be a narrow vertebral canal, a hernia, and decided to make an appointment with a neurosurgeon who had about Chiari.
Hernia and narrow vertebral canal
Here is my picture:
Two shots - the first sagittal slice and the corresponding axial slice (second shot). In general, it is clear that there is a relative central stenosis + slight compression of the back. the brain.
There's nothing to be done - I was born that way. I went to a neurosurgeon about whether it was necessary to have an operation, and, in the long run, ask that, as often happens, then it would not be too late. He told me that the operation was not indicated, since there were no obvious neurological disorders. In general, I agree, because such operations are complex and the surgeon better understands the balance of benefits and risks.
In general, with what I started at the very beginning of the journey with those finished. Headaches seem to be less or I just got used to them. Remained and worried - tinnitus and against this background a bad dream. Plus, there was a relative stenosis in the cervical region. Therefore, in the future I would like to try to solve these problems:
- Find the cause of the noise and ideally find a cure, normalize sleep.
- Stenosis. Find modern methods of treatment and patients who have undergone surgery to socialize and understand their effectiveness.
For point 1., the neurosurgeon recommended finding a good neurologist. But where can I get it? A doctor who will be interested to help and who will have time. As far as I understand, we need a new method of elimination: check the ear nerves of the ENT, the vessels of the neck, head, venous outflows, etc. Some of this I have already passed - ENT did not find problems with the nerves. Did an MRI Angiography to look at the vessels of the neck and head in statics. So the hypoplasia (narrowing) of the left vertebral artery was discovered, but as the doctor told me - in principle, it's okay, since the brain is filled with blood enough. They offered to make MRI of the vessels with contrast in order to see the dynamics of blood movement, but I refused at that time. Once I did tests for checking the tone of the veins - there seemed to be a change in tone. Do something i did it
Point 2 is not yet engaged.
If you have in mind a neurologist, whom you could recommend, I will be grateful. Preferably in Moscow or St. Petersburg. But not necessarily . Or you can share your similar story and what helped you. Any information will be grateful.
For my part, I deliberately did not disclose the name and contacts of doctors. If I can help with something, I will throw off your contacts.
Here I express my opinion.
From time to time, when I went to see doctors, I realized that there are quite a lot of such “unobvious” patients. I think that for many of us, problems are a mixture of physiological and psychological problems. By physiological, I understand some kind of non-fatal symptoms: a headache, but you can live, the back or neck is wedged, but not critical. And psychological - it is stress, and "pens" about their diseases, which only aggravate the situation. As one of the last neurologists told me, I had “You have a low threshold for the conditional strength of the nervous system. One person needs only so many factors to unbalance the nervous system, and half of you will be enough for you. ” I conveyed the meaning of his words. It sounds unscientific, but maybe there is something in it? If you are an emotionally more vulnerable person, then perhaps stresses will play a role in the development or appearance of a disease. I, too, have - to the university, I lived a measured life in a provincial town, without much stress. And the problems began to manifest themselves when he changed the situation - he went to live and study in the city alone.
Epilogue about the problems in our medicine
Here I will also express my opinion.
You know, when something does not work, I want to blame others. I want to say that the doctors are bad, the medicine is destroyed, etc. etc. I do not think that everything is so clear. There is bad and good.
- From open sources it is difficult to find good doctors. Every sandpiper praises its swamp and did not have enough others. We have to find patients in the same VC and ask what and how to put at least some opinion.
- Often jump between clinics - hand over tests in one, to the reception in another. The third one does not read extracts from previous places in order to put the whole picture together.
- It follows from 2. There is no electronic, structured, common for other clinics, patient history. Some places are still written by hand in Chinese. This seems to me to be so obvious and necessary in the first place thing - but it is not!
- Still, some surveys and analyzes can be obtained free of charge. Or, you can use a tax deduction to get back 13% of NFDL.
- There are good professional doctors. And often it is young doctors! Example - Pirogov Institute - neurosurgeons.
I would like to complete with the words of football commentator Viktor Gusev - “Take care of yourself”!
PS: All matches with real people are random.