My first posting

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My first posting

Postby LouiseB » Sun Jun 10, 2007 3:13 am

Hello, I´ve been following this forum for a while now and not posted, so here goes, it´s a little long I´m afraid.

My name is Lu, (Louise) I am a 38 year old English woman, I have a 10-year-old son and am a single parent. I live in Spain, but used to live in America six years ago.

I have idiopathic sm C4-T11.

My symptoms started nine years ago, with numbness in the hands and tingling, increase sweating and problems with my bladder. The pain began four years ago, after lifting and moving 21, heavy wooden doors. The pain was in my neck and shoulders arms and hands. The pain didn't go away, so I went to see a doctor here in Spain, he took an x-ray of my wrists and neck and sent me for an MRI. The pain went away about a month later so I didn't go and get the results of the MRI. Six months past and the pain came on again, and I went back to the clinic, another doctor was there and recommended I get an MRI and I mentioned that I had already had one but didn't know the results . He found the MRI and told me I was diagnosed with syingomyelia c6-c7, he virtually pushed me out the door and said I needed to see a neurologist. It wasn't until I got home a looked on the Internet, and I realised why he pushed me out the door and couldn't deal with explaining what this disease was. I went to see a neurologist, who asked for another MRI to be done and then told me it was too small to be causing problems. I found another neurologist who said the same thing. I went to see a neurosurgeon, who also said the same thing. I then went to a prominent neurologist in the UK – Dr Munchi Choksey (who is actually on the Ann Conroy syingomyelia trust list of doctors). I didn't know that at the time. Told me that in his opinion the syrinx was not going to grow, and that I did not have syingomyelia. He told me I had carpal tunnel syndrome, and I should be operated.

I went home to Spain, and found a hand surgeon, had an emg test. I had bilateral carpal tunnel surgery two years ago, it did not resolve the pain. I went to see another hand surgeon, who told me that the first surgeon had not cut deep enough and operated my hands again. The pain still did not go away so I went to see still another neurologist, who was German. I was in tears, and very distressed when I went to see. I told him I just wanted to know what was wrong with me and for the pain to go away. I explained to him the history. As an afterthought I gave him the MRI that I had brought with me and told him that the syrinx was found, but that I had been told it was too small to cause any problems. He looked at the film's and said that in his opinion I did not have nor had had carpal tunnel syndrome. He said that my symptoms were not peripheral but came from the central nervous system. He was very kind, he listened, and said he was going to help me with my pain. He wanted to show the MRI is to colleagues of his to get their opinion and told me to come back in a few weeks. When I returned, he said his colleagues had concurred with him, and that my symptoms were indeed, due to the syrinx. He said the only thing we could do at this point was to manage the pain, take MRI is every year and for me to inform him of any new symptoms. He put me on Anafranil, it took two months to reach the appropriate dosage to avoid unwanted side-effects, it didn't help my pain. He switched me to Lyrica which did help, but I had to keep increasing the dosage. I´m off all pain meds now as nothing has helped, I just had to deal with the side effects of the drug, but without pain relief.

May of last year I started experiencing electric shock sensations from my neck down my arms to my hands, these last two weeks and were not painful just strange. I also started experiencing fatigue, in my legs and arms, but especially arms they felt very heavy, and very tired all time.

August of last year, I had facial paralysis on my left side, which they said was not connected to the syrinx. Now, 10 month later my face is 90% recovered.

November of last year, the shocks returned for about a month.

January 2007, night sweats increased. I started experiencing burning sensations in my truck area as if my skin was on fire. This would come and go. Spasms and muscle twitches while my body was at rest. The pain moved over to the left side. Bladder problems increased (frequency, incomplete emptying, and a few times the inability to go), my neurologist, referred me to a gynaecologist to rule out damage to the bladder from childbirth. And then to a urologist who diagnosed me with a neurogenic bladder. The neurologist said this was also due to the syrinx, which I actually don't understand, I thought bladder problems occurred late in the disease stage. Anyway, he has put me on Urosin, this was 4 months ago, it helped for 3 months, now the urinary problems are again increasing, they are talking about self-cath now.

Electric shocks returned in February worse and constant and painful, accompanied by a sensation in the base of my brain like two live wires touching, when I lay in bed, immobile there are no shocks, they only occur when I move (this is alarming and concerning to me). Vicious headaches every day for a month. I informed my neurologist, who requested another MRI of the brain and cervical column and a full MRI of the spine (I also have pain in my legs that come and go). The syrinx had grown in 5 months, it is now c4-t11. I am having a lumber puncture on Tuesday.

I vacillate between thinking I'm a hypochondriac and just depressed over the syingomyelia diagnosis, or that the symptoms really are valid. After seeing so many doctors and being handed anti-anxiety pills, I´m just tired of the whole doctor process. In fact I went back and saw Dr Arraez in Malaga who will be president of neurosurgery for spain next year and he told me the syrinx is too small to cause the symptoms and he thinks there was infection or virus in my spine that triggered the syrinx. Has anybody had this.

I am on disability and have been for the last year, I have trouble driving and try to stay off the computer. I don't lift anything. I've changed my lifestyle and slowed everything down. I live with my mother now and she helps me with my son.

I've never been in a car accident, they told me that I don't have Chiari, an no tumors, no obvious tethered cord, so I don't know where this came from.

I am lucky to have found a neurologist, who believes that the small syrinx is causing the problems and is sympathetic and listens to me. Unfortunately, at this point, I think I probably know more about this disease than he does.

I have an appt with TCI July 23rd, I don´t want to go, the trip is exhausting from here, but maybe they can at least look at the occult tethered cord possibility. At least I will feel secure in the knowledge that they have the full picture and know what they are doing.

This forum has been both informative and supportive to me, I don´t know what I would do without it. So now I´m officially joined. Sorry this post is long.

SM C4-T10, TSC - Release Sept 2007 as per Dr Bolognese advice. Syrinx shrunk. Symptoms the same.
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Joined: Wed May 16, 2007 1:49 pm
Location: Spain


Postby razzle51 » Sun Jun 10, 2007 5:25 am

welcome Louise . There is a Chiari Dr. in Spain . I will look for his name .
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby LouiseB » Sun Jun 10, 2007 6:28 am

I went to see Dr Sahuquillo in Barcelona last month, who is a Chiari doctor, unfortunately they can´t find out why I have sm ... yet. He wants to admit me for a week of testing, though I´m not sure what tests he could want that I don´t already have. I´m on the waiting list, so don´t know when it will be. I have a Lumbar Puncture scheduled for Tuesday, maybe that will show something.

Is there anybody else out there that has sm due to spinal cord infection?

If so, what can they do to help you?

SM C4-T10, TSC - Release Sept 2007 as per Dr Bolognese advice. Syrinx shrunk. Symptoms the same.
Posts: 19
Joined: Wed May 16, 2007 1:49 pm
Location: Spain

Postby cash71 » Sun Jun 10, 2007 11:38 am

Hi Louise,

Welcome to the board. It is my understanding that any kind of an infection or trauma can cause an arachnoiditis which can ultimately lead to scarring and narrowing of the arachnoid space or arachnoid banding. This could set you up for a blockage in the flow of csf and lead to a syrinx forming.

From listening to the TCI videos I have learned that Dr. B thinks that a CT myelogram is THE best way to visualize and banding or narrowing of the arachnoid space in the thoracic area and CINE MRI is the best to visualize flow through the craniocervical junction. I am having a CT myelogram myself to rule out arachnoid scarring in the thoracic area. I have read that if the scarring is found it can be operated on the remove scar tissue in that area and re establish proper flow. I have also read though that it is extremely difficult to find the area of scarring and successful operate to remove it.

I hope this helps and welcome again,

Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info:
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My first post

Postby LFRM » Sun Jun 10, 2007 12:09 pm

Hi Louise,

I hope you find your answers soon. My first symptoms were bladder problems too. At 3 years old!!! I am 44 now. I really think that you must travel to TCI, I will go until September. But as I have been reading I think they are the right people to go because other wise you will be like me: lots of NL and Neurosuregeans and nothing.

Just for you to laugh: When I went to see one of the neurosurgeons I said: Where do I start? and he said: From the begining. So I said: For me everything started when I had 3 years old as I started whith frecuent urination and so on.. and then he said: That is not a neurological symptom!!! Then he said he could not do anything about the SM I had and that everything will improve by swiming which of course I did. What happened? I got worst, I feel worst every time I swim!!! So I stop I just walk now.

So do not loose more time, do not doubt and go to see someone that really knows about this sickness because in your case the syrinx is growing so this is why you do not have to loose more time in seeing people with out experience, because the doctors you are going with do not have experience even to look for the cause. The most important thing I have learned in this forum is to look for the SM cause and for this you need competence and competence is just build up by lots of experience.

I hope you find what you really need.

SM T2-T7
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Postby mac » Sun Jun 10, 2007 12:59 pm

Hi Lu and welcome to the board. I'm glad you joined.

We have another member here named Mary (meregis) who is from the UK but lives in Spain. Maybe you two live close enough to visit!

I wanted to let you know that the elec. shock feeling you are having down your arms and at skull base is called L'hermittes. You can look it up on the internet that way. Dr. B at TCI told me that it is basically like hitting the funny bone of the spinal cord.

I am wondering if Dr. B will say you have craniocervical instability?

Please keep your appt with him. You will not be sorry. And everyone else will treat you differently, doctors, family, etc, when you come back with a firm diagnosis in hand! With all that you have going on, he really is who you need to see. I flew there 3000 miles to see him and it was a life changing event.

hope this helps and pls stay in touch with us.


Postby ocset1 » Sun Jun 10, 2007 3:30 pm

Hi Louise

Welcome, I am quite new here too. I hope you soon find the answers to your symptoms. It is very frustrating.

A couple of the things you said really rang true to me. Especially the night sweats, i wasn't sure if this was due to my SM , starting to think it might be.

Wishing you all the very best and good luck in your search for answers.



Postby lainiek » Sun Jun 10, 2007 5:13 pm

Hi Louise,

Here is a link to the neurological institute in Barcelona -- I believe these surgeons are the ones that have published a study on occult tight filum terminale. The web page says the surgeon's name is Dr. Miguel B. Royo Salvador. ... mielia.htm

Good luck. I hope that TCI can resolve some issues for you soon.

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