Weakness in arms and legs, I think due to Syrigomyelia. Concerned about exercise

I have been dealing with seizures for two years and also trouble walking, with numbness, weakness snd tingling in extremities. I was diagnosed with Chiari and Syrigomyelia 16 years ago snd had surgery, now the symptoms have come back. All my doctors say to at least walk, but that brings on pain and numbness, etc. I have trouble sitting for long periods, but I can't stay in bed all the time. Any suggestions?

Hi Sabrina, maybe your syrinx has returned? I would have another MRI done and seek out a neurosurgeon specializing in Chiari. It has been a long time and you could definitely use another MRI to see what is going on. Good luck!


I appreciate and thank you for your reply. I have seen several neurologists and a neurosurgeon in the last 2 years or so. I have had MRIs and CTs, and they say that there is something wrong but nothing too serious. I finally got a neurologist in San Diego at UCSD that will get to the bottom of it. I see him again April 15. Hopefully it will turn out good. Can't do surgery on syrinx because it may grow bigger. All I'm doing is trusting God.


Abby said:

Sabrina,

I would ask for neurological workup with MRI's. Something is causing these problems and you need some answers. We are here for you, please let us know what happens. I have included something I found from Conquer Chiari, on Symptom recurrence for you to read.

March 31, 2008 -- Three of the most common questions Chiari patients have are: what surgical technique works best; what specific symptoms will go away with surgery; and will the symptoms ever come back? Now, a recent study out of the UK, which tracked 96 Chiari patients for several years, has provided some data to begin to answer those questions. The British researchers (Hayhurst et al) retrospectively looked at the clinical course of patients - for several years- treated between 1994 and 2005. They published their findings in the February, 2008 issue of the British Journal of Neurosurgery.

The patient group studied was comprised of 35 men and 61 women, with an average age of 33 (13 were children). Eighty-three had Chiari I, while13 suffered from Chiari II. Nearly half also had syringomyelia. Not surprisingly, the most common symptom was headache, with 63% of the group affected by them. Dysesthesia arm pain and weakness, ataxia, cranial nerve involvement, and drop attacks were also reported (Figure 1). Interestingly, for 13 patients headache was the only symptom.

The patients underwent a variety of surgical techniques, with 16 having only a bony decompression - meaning the dura is not opened - and the rest undergoing some type of intradural manipulation. After surgery, the patients were followed for an average of more than three and a half years.

Post-operatively, 78% of the patient group experienced either an improvement in, or complete resolution of, their symptoms, which is in-line with many other published outcome series. As to be expected, patients with Chiari only fared better than those with Chiari and syringomyelia. Specifically, 84% of the Chiari only patients improved with surgery, while only 74% of those with syringomyelia improved. Among the 46 patients in the syringomyelia group, follow-up MRIs showed that 19 syrinxes collapsed completely, 21 were reduced in size, and there was no change in 6.

At this point, the results from this study resemble many other published patient series; however, the British researchers also decided to look at which specific symptoms got better and which did not. For example, headaches resolved completely for 68% of the patients who had them and improved for another 24% (Figure 2). This means that 92% of the patients with headaches got some measure of relief from the surgery. Similarly, drop attacks, which affected seven people before surgery, completely resolved in all patients, for a 100% improvement rate.

Unfortunately, dysesthetic arm pain and weakness did not respond as well. Arm pain and weakness completely resolved for only 20% of the patients, and improved for an additional 23%. This means that for more than half, there was no change in these symptoms after surgery. This finding, in contrast with the headache and drop attack result, highlights the fact that some symptoms, especially those involving nerve damage, do not necessarily get better with surgery. In these cases, patients should not have unrealistic expectations of what surgery can do.

Next, the researchers leveraged their lengthy follow-up data to study the recurrence rate of symptoms. For years, Chiari & Syringomyelia News has heard anecdotal stories from people whose symptoms have returned after what was initially a successful surgery, however this phenomenon is usually not addressed or discussed in the medical literature. In some people, the return of symptoms is triggered by some type of trauma, such as a car accident. In others, however, there is no readily apparent reason why symptoms have come back.

The doctors found that over the course of several years slightly more than 10% of the patient group experienced recurrence of symptoms which were similar to what they felt before surgery (Figure 3). On average, the symptoms recurred 26 months after surgery, indicating that the traditional follow-up period of one year may be too short. About half of the patients whose symptoms came back ended up undergoing additional surgery. Interestingly, the recurrence rate among patients who had had a bone only decompression was much higher than for patients who had had their duras opened. Specifically, the recurrence rate for the bone only group was a staggering 25%, compared to 7.5% for the dura group. This led the authors to recommend that bone only decompression be reserved for adult patients whose only symptom is headache.

While this study suffers from some of the same limitations that most Chiari research does, such as the lack of a clear outcome definition, it does go into a level of detailed analysis that is encouraging. Many Chiari studies tend to lump patients together and not dig into the details. For this study, it would have been useful to see what characteristics, if any, differentiated the patients who experienced symptom recurrence from those who didn't. For example, it is known that some Chiari patients have small posterior fossas. It would have been interesting to see if there was a difference between those patients with a small posterior fossa and those without.

It is time for Chiari researchers to take their analyses to the next level and find ways to categorize and describe patients in a manner that will be both clinically useful, and hopefully provide clues to the underlying nature of the condition.

-- Rick Labuda

Hi Toni, thanks. The syrinx has returned and my neurosurgeon didn't want to do surgery yet and I'm not sure I want another surgery. I see my new neurologist on the 15th. He wants to run more tests.

Toni said:

Hi Sabrina, maybe your syrinx has returned? I would have another MRI done and seek out a neurosurgeon specializing in Chiari. It has been a long time and you could definitely use another MRI to see what is going on. Good luck!

Have you considered doing gentle yoga or getting acupuncture treatments?

I tried acupuncture. Too costly and my muscles would spasm and hurt. Have't tried yoga, but was going to try some kind of water aerobics or water zumba. Thanks.

I feel for you. I'm in my later 50s and I will let you know that stretches are very important to me. I've exercised all my life, but because my muscles started atrophying fast thanks to the chiari with syrinx, exercise became hard and very painful. It would make my physically sick.

The physical therapists said I could do any exercise as long as I did not feel it in my spine or the back of my neck. It's been an ongoing trial and error, but I keep trying new stretches to help ease this pain. I exercise most days, but when the pain is too bad, I skip that day. Tai Chi (I think that's how you spell it) or just gently stretching to music helps. Some isometric exercises help too.

Have you tried breaking your exercise sessions into small 5 or 10 minute exercise sessions?

Good luck & God bless. Please keep us posted. I'm praying for you.

Sabrina, I know surgery isn't fun however I would make sure have to have routine MRI's and visits with your neurosurgeon. Why did the neurosurgeon not want to do surgery yet? My sons syrinx had returned last year but thankfully has just about disappeared. We were preparing ourselves for another surgery because of it. The thing about the fluid is...you can't just leave it there a long time because it will deteriorate your spine and it most likely causing some of your symptoms because it compresses the spinal cord. Let us know how it goes!

Sabrina Haller Yeager said:

Hi Toni, thanks. The syrinx has returned and my neurosurgeon didn't want to do surgery yet and I'm not sure I want another surgery. I see my new neurologist on the 15th. He wants to run more tests.

Toni said:

Hi Sabrina, maybe your syrinx has returned? I would have another MRI done and seek out a neurosurgeon specializing in Chiari. It has been a long time and you could definitely use another MRI to see what is going on. Good luck!


Thank you. Yes, I think stretching would be good. I'll do that.
FentonFan said:

I feel for you. I'm in my later 50s and I will let you know that stretches are very important to me. I've exercised all my life, but because my muscles started atrophying fast thanks to the chiari with syrinx, exercise became hard and very painful. It would make my physically sick.

The physical therapists said I could do any exercise as long as I did not feel it in my spine or the back of my neck. It's been an ongoing trial and error, but I keep trying new stretches to help ease this pain. I exercise most days, but when the pain is too bad, I skip that day. Tai Chi (I think that's how you spell it) or just gently stretching to music helps. Some isometric exercises help too.

Have you tried breaking your exercise sessions into small 5 or 10 minute exercise sessions?

Good luck & God bless. Please keep us posted. I'm praying for you.

I have had 3 docs tell me that if they touch the spinal cord it could be worse thsn leaving it alone. When it gets bad or rather worse, they and I will consider surgery.

Toni said:

Sabrina, I know surgery isn't fun however I would make sure have to have routine MRI's and visits with your neurosurgeon. Why did the neurosurgeon not want to do surgery yet? My sons syrinx had returned last year but thankfully has just about disappeared. We were preparing ourselves for another surgery because of it. The thing about the fluid is...you can't just leave it there a long time because it will deteriorate your spine and it most likely causing some of your symptoms because it compresses the spinal cord. Let us know how it goes!

Sabrina Haller Yeager said:

Hi Toni, thanks. The syrinx has returned and my neurosurgeon didn't want to do surgery yet and I'm not sure I want another surgery. I see my new neurologist on the 15th. He wants to run more tests.

Toni said:

Hi Sabrina, maybe your syrinx has returned? I would have another MRI done and seek out a neurosurgeon specializing in Chiari. It has been a long time and you could definitely use another MRI to see what is going on. Good luck!