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Help: Healing and after surgery issues (Syrinx)

Hello Everyone, I’m new to the forum I had Chiari decompression 90 days ago I quickly realized healing afterwards is the hard part more then surgery itself. I also have a syrinx from C1- t11 I was stable with ups & downs for 5 years after being diagnosed. Then in January of this year my symptoms started to progress suddenly I went to a neurosurgeon immediately for evaluation and testing he said that my Chiari or syrinx had not became worse but that doesn’t mean my symptoms can’t get worse. He said I had empty stella half moon shape which brings him to believe I had some intracranial pressure that could be causing my problems so he wanted to try a brain stent because if I had to have decompression it would be safer to relieve the pressure first this is in February. I felt great for a few months but felt symptoms creeping back so we decided for surgery late summer my concerns I spoke with him about was my neck & becoming worse he assured me my neck would be okay and I would not get worse because I don’t have horrible symptoms and having surgery before total deterioration I would not get worse. I’m now 3 months post op healing has been up and down the back of the head, shoulders, & neck causing discomfort especially during bed time when I lay on my surgical area it or on my head it’s uncomfortable causing symptoms those areas are taking so long to heal when that wasn’t my symptoms before decompression… I’m having breathing issues can’t sleep when laying down for bed and body & arm pain with weakness lumbar area killing me it doesn’t matter what side I lay on or if I’m low or high on pillows. I have had 2 sleep studies it says I don’t have sleep apnea it feels like I’m not getting enough oxygen mouth feels full throat feels tight when laying on side it feels like my lungs a being smushed together and no air can come threw. My follow MRI and appointment was last week doctor says my MRI looks great and my syrinx went down 90% and it’s still early I have a lot more healing to do and I probably won’t feel this way in 6 months he also said since part of my syrinx was in my thoracic spine muscles could be weak and need to heal that’s why I feel like I can’t breath and body pain is from syrinx he told me to talk to my PT about my popping cracking in neck she said it’s still inflammation in the joints I stopped PT for a while because I started to feel bad after she started to kick treatments up a notch doctor said still go but take it easy. I would like to hear from others that went threw the healing process with a syrinx some people told me it takes a long take to heal and you feel worse but they felt so much better down the line.
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620923 tn?1452915648
Hi and welcome to the Chiari forum.

Well, I did not have a syrinx and it took a long time for me to heal...it all depends on you, how long do you take to heal and what all was going on? I had decompression surgery in May of '09 and I am going to tell you that I saw benefits from the surgery for years after....I may have healed from the surgery in 9 to 12 months, but the benefits took longer to manifest. Along with Chiari I also have tethered cord ( no surgery for that yet) and I also have Ehlers-Danlos Syndrome ( which causes us to heal slower) It is a major surgery which caused trauma to your entire body.....do not rush the healing process as it could take even longer.

Did you have a dura plasty? If so, what type of patch did you have?
Besides Syringomyelia (syrinx) what other conditions do you have?

I have a sea turtle as my avatar because I am always reminding members to go slow and steady.
Just know you are not alone.
Helpful - 1
Thank You for your reply Selma, I only have syrinx no other conditions. He used tissue from my own body he asked on my follow up last week what benefits do I feel I’m was like none I feel worse and is having surgery regret. I know maybe I’m rushing but this breathing thing has me depressed 2 sleep studies negative. I asked him about at the appointment he said that it could be because I had a syrinx in my thoracic area and make me feel like I’m having a breathing issue but it could be anxiety and weak muscle that need to heal. I spoke to the his PA today she said all my imaging and testing looks great syrinx reduced by 90% I said well I should be at least stable.
I understand your frustrations, so many that have had this surgery have gone through this. Neurological issues do take time to regain a feeling of "normal". Directly after surgery some have experienced  a great relief to many symptoms, only to have many return...some seemed worse than prior to surgery, some never returned and some developed new symptoms/issues. Your breathing issues are of concern, but if nothing is physically wrong, then this could be neurological too.
I hate to say, try to relax and give it more time, as I know while you are in recovery for this surgery and in distress, it is difficult to wait.

Stress can cause your symptoms/issues to flare.
I been in contact with my doctors assistant about my breathing issues are caused from brain stem compression which I no longer have and said all my imaging looks good this symptom suddenly came on last week. She said maybe it’s because my syrinx went done in size a lot and my body & brain needs to adjust it. It happens when laying down especially when pressure is being put on my upper spine at night when I’m up during the day I’m fine. I’m very stressed and scared from this I’m 3 months post op it didn’t happen until now.
Do you have a recliner to sleep in to stay upright and avoid the issues you have laying down? I understand the syrinx can be causing you your continued symptoms....and it may take time for it to give you relief....however I would like to think your Dr could give you something to help?? Regardless of it should get better since surgery is not helping you since it is not getting better and you need to sleep in order to heal, and if you have breathing issues.

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620923 tn?1452915648
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